(This page has been updated for the present day and time! Enjoy!)
Have trouble sleeping? Here are three scenarios you might identify with, the causes, and the solutions.
1) INSOMNIA or WAKING UP FREQUENTLY SOON AFTER YOU FALL ASLEEP
This is an extremely common problem faced by thyroid patients, and the most common reason is going to bed with high levels of cortisol–the opposite of what healthy adrenals should be doing. With normal adrenal function, your bedtime cortisol levels should be low, or at the bottom of the range of a saliva cortisol test. Symptoms include laying awake for a long time before falling asleep for the night…or if you can fall asleep well, you tend to wake up often within the next hour or two.
Why the high cortisol?
It’s usually a left-over remnant of when you used to have high cortisol all day long, but which has since fallen to low levels of cortisol except for bedtime, or afternoon and bedtime.
And all the above can happen to certain individuals due to a continued hypothyroid state (such as being treated with the inadequate T4-only medications like Synthroid, Eltroxin, Oroxine, and/or Levothyroxine, etc) or due to undiagnosed hypothyroidism (thanks to the use of the TSH lab test).
Another cause is low bedtime cortisol (i.e below the range), which has caused issues with falling or staying asleep at bedtime. Low cortisol seems to cause high adrenaline, and the latter results in a fitful sleep pattern during the night. The solution? First do a 24-hour adrenal saliva test to prove if it’s high or low cortisol, say informed thyroid patients. Guessing can get you into trouble. (And blood cortisol is not the answer, since it’s measuring both bound and unbound cortisol.) Then compare the results to what we’ve learned they mean.
For high bedtime cortisol, patients have had success with cortisol-lowering herbs like Holy Basil, zinc or others, taken a good hour or two before they want to fall asleep. Each dose is given three nights to see if it’s enough to improve sleep. If not it’s raised…and again if needed. Then they wean off after several weeks of better sleep.
For low cortisol (below the range), patients often have to use a small dose of HC or Adrenal Cortex. Even supplementing with sea salt has been reported to help with sleep. Additionally, if bedtime cortisol is below the range, there’s a good chance your cortisol is low most of the day, which saliva testing will reveal. Chapter 6 in the revised STTM book has excellent and important information on the proper use of HC, which would also apply to adrenal cortex.
2) WAKING UP ANYWHERE AROUND 3 – 4 AM
Waking up a good three to four hours before you would normally start your morning is a strong sign of low cortisol, which in turn causes hypoglycemia (low blood sugar). And the latter can push your adrenaline up, causing you to wake up hours before you are supposed to. You might also feel shaky or hungry.
The solution? Besides taking cortisol at bedtime, if needed, patients have reported doing far better with sleep by eating a complex carbohydrate at bedtime (for example, whole wheat cracker with cheese or peanut butter…or if you need to avoid gluten, berries and cream cheese). The same strategy is used if waking up around 3 am or so, which will help raise your blood sugar levels and you might fall back asleep better.
3) WAKING UP FREQUENTLY WITH NO SET PATTERN
Time to check your sex hormones, which can get messed up with hypothyroidism, or made worse because of adrenal sluggishness or cortisol use.
Low estrogen can cause hot flashes, waking you up. A study titled Sex Hormones, Sleep and Core Body Temperature in Post Menopausal Women reveals that low estradiol (E2) and higher luteinizing hormone (LH) levels are strongly related to lessening the quality of your sleep.
Low progesterone is also known to cause insomnia and even anxiety, and may cause sleep apnea (or make you snore, ladies. Gulp). Entry into menopause has caused this, report many women.
Especially in men, low testosterone can negatively affect the quality of your sleep, i.e. you won’t stay in your deep sleep cycle long enough for recuperation of your body and mind.
SLEEPING TIDBITS:
- Low levels of the neurotransmitter serotonin, which can cause depression, is also implicated with insomnia.
- High cortisol can also be caused by Lyme or reactivated Epstein Barr Virus–the latter of which at least 95% of adult have dormant in their bodies, but which can reactivate due to stress or illness. .
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Important note: STTM is an information-only site based on what many patients worldwide have reported in their treatment and wisdom over the years. This is not to be taken as personal medical advice, nor to replace a relationship with your doctor. By reading this information-only website, you take full responsibility for what you choose to do with this website's information or outcomes. See the Disclaimer and Terms of Use.
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162 Responses to “Three Sleeping Issues you might encounter as a Hypothyroid Patient”
Katheryn OldShield
Why is there NO mention of sleep apnea?
It is like ignoring the elephant in the room, fully dressed in circus regalia!
Janie Bowthorpe
Sleep Apnea is very rare for hypothyroid patients. It’s a catch-all diagnosis given by doctors who don’t understand that our adrenal problems can cause it. Not saying someone with hypo won’t have true sleep apnea, but for the vast majority, it’s not sleep apnea. It’s a symptom of low cortisol at night, and sometimes high cortisol.
Janet
I am diagnosed with sleep apnea, I have hypopneas not apneas. Which means I breathe so shallow, that I stop. I am using an APAP machine and have learned to nasal breathe. I get perfect scores on this machine every single night, but I still wake up constantly between 3am and 6am. My thyroid numbers are optimal. I supplement as much estrogen as I can tolerate and use topical and oral progesterone. I was waking agitated like too much cortisol, prior to APAP, now just waking exhausted and groggy.
JEN
THIS IS SO INTERESTING. I WAS DIAGNOSED WITH SLEEP APNEA 10 YEARS BEFORE THYROID ISSUES. WOULD LOVE TO BE FREE OF THE MASK
Nicole
I was searching the internet to see if taking T3 in the early afternoon can cause insomnia and came across this site. I was diagnosed with hypothyroidism 20+ years ago and up until 3 years ago, took Synthroid only. Then I added in compounded T3 twice a day since my T3 value was low. In the last year, I suffered a traumatic brain injury which reactivated my epstein barr virus. Since then, my TSH, T4, T3, rT3 values have gone up and down and I’ve tried adjusting my meds accordingly. I know my adrenals are out of whack as I have crazy spikes in anxiety (especially in the morning), and I’ve been on adaptogenic herbs/adrenal support supplements for many years. A recent ZRT saliva test shows 6.6ng/ml in morning, 1.5 at noon, 2.1 in the evening, and 1.6 before bed, though I realize that I took all adrenal support pills on the day of testing (after morning sample and after evening sample). I’ve been battling insomnia for 20+ years and only recently came to realize that it started around the same time I started taking thyroid meds. Currently, when I take 50mcg Synthroid plus 9 mcg T3 (in morning and early afternoon), I have bad anxiety in the morning and insomnia at night after 2 days. But when I drop the dose to 37.5 mcg Synthroid with the 9 mcg T3 twice a day, the anxiety goes away and I sleep better, but then I get extremely dry skin and unbearable sluggishness/fatigue after about a week. I’m so miserable and so desperate and have no idea what to do. Could you please suggest a way out of this? Should I switch to a different medication other than Synthroid?
Janie Bowthorpe
Compare your results to what is on this page. You’ll see your problem: https://stopthethyroidmadness.com/lab-values
Then get the updated revision STTM book. Chapters 5 and 6 are for adrenals. https://stopthethyroidmadness.com/updated-revision-sttm-book
Nicole
Thanks, Janie. I’m not sure I’m seeing and understanding what you are eluding to by having me look at the lab values page. I see that my cortisol levels are flipped (a little low in the morning and at noon, then high in the evening and at bedtime). So would you suggest that I take my adrenal support herbs like holy basil and zinc 2 hours before bed instead of in the morning? (I take ashwaganda, rhodiola, magnolia, theanine, schisandra, and zinc at various times of the day). My anxiety spikes mid-morning a couple of hours after my morning thyroid dose. Do you think I should try something other than Synthroid/T3?
Janie Bowthorpe
I mention the Lab Values page so everyone can use it to compare to their lab results. That way you can see if you are too low or too high compared to where optimal is. So for saliva results, when two of the four are high, we use something like Holy Basil one hour before the two spits to start lowering them. Lowering them will naturally help raise the lows. But sometimes, the lows are a bit miserable. So patients will use ACE during those low times. This is where you can study Chapter 6 in the updated revision for more info. This book: https://stopthethyroidmadness.com/updated-revision-sttm-book
Nicole
Oh my gosh, yes, this makes sense. I used to think that my morning anxiety spikes were due to cortisol and hence was taking all of the adrenal suppressing herbs in the morning. Now I’m understanding that my morning anxiety is actually from my thyroid medication (Synthroid plus T3). For the adrenals, I’m going to try an adrenal booster like ACE (my practitioner uses Thorne brand Cortrex) in the mornings, and then the adaptogenic herbs in the evening. Hoping this will significantly improve my insomnia. For my thyroid, I’m going to switch from Synthroid to Tirosint and lower by T3 dose. Thank you for your help!
Janie Bowthorpe
If you have insomnia at bedtime, that’s usually high cortisol at bedtime, yes. And there are great adaptogens that can help, ranging from Holy Basil to Phosphytidyl Serine to Zinc.
Miriam
I am struggling not only with raising T3 but also with raising T4. The higher my T4 dose, the extremer my insomnia (although I am still suffering from hypothyroid symptoms). The 5-point Saliva test revealed that I am having low bedtime cortisol (below the range). I read that there is a relation between the raising of T3 and weak adrenals…but is there a link between weak adrenals and T4 intolerance?
Greetings from Germany & thank you!!
Janie Bowthorpe
It’s not T4 intolerance. It may be converting to RT3 due to inflammation, or low iron.
Miriam
Thank you for answering! You are probably right as my FT3/RT3 ratio is 14. Do you recommend raising T3 and lowering T4? My problem is that I am afraid of raising T3 because it leads to extreme insomnia? I am so exhausted because I’ve only slept 2-3 hours per night the last 3 months.
Another question: As only my bedtime cortisol is below range, can I still use Adrenal Cortex? The other results are below mid range but still within the range (Third from the bottom).
Janie Bowthorpe
Can you post your saliva results with ranges, please.
Miriam
9 a.m.: 8397 pg/ml (1850 – 14570)
11 a.m.: 4312 pg/ml (1300 – 10290)
2 p.m.: 1326 pg/ml (760 – 5690)
5 p.m.: 1571 pg/ml (650 – 4380)
9.30 p.m.: 255 pg/ml (330 – 3330)
I am deeply thankful!!!
Janie Bowthorpe
Is that the Dutch? There are a lot of times it’s awful, even though occasionally it’s similar to a better saliva test like ZRT. As I thought, they are all too low. We ignore that 2 p.m. Compare those results to what’s on this page: https://stopthethyroidmadness.com/lab-values
Miriam
under the following link you can find a figure with my cortisol results.
https://drive.google.com/file/d/1eGXiAgA8iBlB7ftunq73oJ1R8f5qglSh/view?usp=sharing
Miriam
Thank you for your answer!
Its a german test.
Since the results are too low I want to take Adrenal cortex. At what time do I take Adrenal cortex? Like you suggest, only morning and noon?
Plus, can I simultaneously start with T3-only in order to clear my rt3? Or shall I wait until my adrenals get better?
Janie Bowthorpe
You may need the strength of Hydrocortisone, though. They are pretty low. If they were not as low, we use 50 mg ACE capsules. For a women, we start like this: 3,2,1,1. The 3 represents first thing in the morning. Then the others start four hours later, and are 4 hours apart. This is where you need to get the updated revised Stop the Thyroid Madness book. It’s all covered in Chapter 6, plus more in Chapter 5. It’s a lot more than I can cover in this blog post unfortunately.
Miriam Maibücher
I ordered the revised book now! 🙂
One last question: Can I simultaneously start with T3-only in order to clear my rt3? Or shall I wait until my adrenals get better?
Thank you for the help and thank you for your work!!!!
Janie Bowthorpe
Many start on T3 while treating adrenals. Did you do saliva testing to prove they need help? Adrenals don’t just get better. We have to treat them.
Crystal
Armour Thyroid seems to be working the best for me. Natur-Throid didn’t do much, and levothyroxine didn’t work at all; I can’t convert it. I am currently on 60 mg. My Total T4 on 1/22 was 4.4 (range 4.8-10), Total T3 95 (range 76-181), and TSH 1.39 (should be under 1.5 to manage my heart disease risk). Not sure what low T4 with Normal TSH and T3 means for me. Can somebody help me understand my lab work and what it means for me?
Janie Bowthorpe
Hi Crystal. 60 mg is a starting dose from which we raise every two weeks in search of our optimal dose. When optimal on NDT, patients consistently and for the past 15 years end up having a free T4 mid-range, and free T3 towards the top of the range (yours was a total T3–doesn’t work. Needs to be a free T3). Being optimal always pushes the TSH below range. Doctors tend to freak out when the TSH goes that low, thinking we are hyper, but we are not. We don’t dose by the TSH anyway. We dose by the complete elimination of symptoms and the two free’s. See https://stopthethethyroidmadness.com/natural-thyroid-101
You will also see mention on the latter page that it’s imperative to have the right amount of iron and cortisol to successfully raise.
The_pan
250 mg of adrenal cortex (3 cap in the morning and 2 at noon like you suggested.)
Janie Bowthorpe
Oh!! No, it’s not high. It’s measured differently that prescription hydrocortisone.
The_pan
K thanks. No wonder I turned into an Insomniac on NDT. My AC was way too low.
The_pan
Wow 250 mg a day seems like a lot. I thought somewhere on this site it said to not go over 50 a day so as not to shut down the adrenals but maybe I’m forgetting. K do I introduce 250 slowly or just dive right in?
Janie Bowthorpe
250 mg of what?
The_pan
Do you recommend adrenal cortex if 24 hr test results are as follows?
DHEAS within range 3.8 reference 1.2 – 8
AM low end 2.4 reference 1.8 – 12
Noon within range 1.0 reference .55 – 2.8
PM within range .68 reference .34 – 1.3
HS low end .25 reference .25 – .75
Thought I read somewhere on this site that the reference ranges aren’t accurate, so I’m prob lower than it suggests? Test was done through Rocky Mountain Labs.
Janie Bowthorpe
What informed patients do with those readings are either the T3 Circadian Method (search on STTM for it) or Adrenal cortex 50 mg, only morning and noon, such as three in the morning, two at noon. By the way, you put “within range” for the first three. Those have nothing to do with being in range. And the bedtime is supposed to be at the bottom of the range. Compare them to this page: https://stopthethyroidmadness.com/lab-values
Aysha
I’ve been taking 5mcg of Liothyronine (T3) at midday for the past week. I take 75mcg of T4 meds upon waking as always but I’m getting terrible insomnia. Does anybody have any experience of this? I cannot find a known reason for this anywhere. Thanks.
Janie Bowthorpe
Hi Aysha. A few things to tell you. First, 5 mcg of T3 is paltry and could be contributing to your insomnia. As thyroid patients, we learned to take T3 starting small, yes, but three times a day, such as first thing in the morning, then approx. 4 hours later, than four hour after that. And we raise to find our optimal dose, which puts the free T3 at the top part of the range.
Second, when we use T3 or NDT in our treatment, we always make sure we have adequate cortisol or iron. Both of the latter can be messed up for those of us who were forced to be on the lousy T4-only meds. See https://stopthethyroidmadness.com/iron-and-cortisol
Cheryl Dilucchio
Hi my 17 year old daughter was diagnosed with Hashimotos 3 weeks ago. She was put on 75 mg of Levo. She hasnt been in school in 3 weeks. She’s up all night until 7-8-9am. Cries because she can’t sleep. Dizzy, dry skin now and said there is a whooshing sound in her head. The insomnia was prior to being on lexo. My main concern right now is getting her to sleep. It is heartbreaking to see. The endo ordered a cortisol test (blood taken this morning) at my request. She has tried ambien, melatonin, holy basil, 5htp, so many more and absolutely nothing works. Please help me help her.
Janie Bowthorpe
You know, one thing we’ve noticed in many of us is that if we go hypothyroid for a long time without diagnosis or treatment, our adrenals get wacky. And the only way to know is doing a saliva test, not blood. Study this: https://stopthethyroidmadness.com/saliva-testing Additionally, too many of us have found Levo (or Synthroid) to be the worst way to treat hypothyroidism. It alone has further stressed our adrenals!! After you have read the other link, study this: https://stopthethyroidmadness.com/t4-only-meds-dont-work
LiliS
In June 2013 I started to wake up with accumulation of Saliva in my throat, my GP took Hormones test, all seems normal. In October the same year I started to feel tired, my heart was racing, and losing weight, I took another hormones test, T3, T4, TSH showed Hyperthyroidism, I took one year of neo-mercazol and My levels went back to normal, but my saliva problems keep going. My GP found it strange. In 2016 finally I saw and ENT, took CT, no asthma, no sinuses, nothing, but the US showed a bit enlargement of my thyroid gland and he said that because of my sleeping position my thyroid gland is pressing more that it used to do before. My ENT told me to learn to live with it. The general hospital did another US and they confirmed two thyroid nodes 1,5 and 2cm, benign. Is there someone that did have or have the same problem as me? during the day I feel great not problem at all. Greetings from Europe.
Nick Zubel
Great site. I have been struggling with debilitating sleep disruption for a year now. I’m a 34 male, weigh 160 and my testosterone is 291! Probably from the chronic sleep disruption. I have difficulty falling asleep and staying asleep. I wake up constantly and can’t fall back asleep after 6 or 7. Lately I’m dealing with heart pounding/palpitations (normal BPM) that are keeping me up. I’m also waking up with heart pounding in my chest too. I’m also experiencing internal head and chest vibrations. My sleep doctor said that is caused by long term sleep loss. I have been taking 1800 IU of Vitamin D for a deficiency. Could that be the culprit? I’m also dealing with constipation issues. So maybe it’s a gut/digeston issue made worse by sleep loss. Or is my entire body make up changing from the chronic sleep loss. Any advice would be greatly appreciated.
Janie Bowthorpe
We’re not doctors who can diagnose, but we can tell you that when any of us have had similar issues, it does seem to point to an adrenal issue, based on all our experiences. In turn, that adrenal issue could be causing secondary hypothyroidism (the constipation is a clue). Start here: https://stopthethyroidmadness.com/adrenal-info Sure sounds like you’re going to need to order and do a 24 hour adrenal saliva test.
Jan Erik
I usually get these periodes after changing medication. I fell easily to sleep (around 2200 on the couch) move myself to bed and fell asleep but I frequently wake up around 0300 and could not fall asleep again. Im soaked in sweat also.Its mostly when 2-3 week after uppered Armour dose Happy days.
Joelle
I went to the ER a little over a month ago because I was having difficulty breathing. These awful symptoms continued for several weeks during which I went to all sorts of doctors and read up on information, only to discover that I probably have an adrenal dysfunction (I also have hashimotos, which I’ve known for about a year but probably had much longer). Over time my symptoms have changed…my breathing is better, but then I had palpitations, a pounding pulse, and I can’t sleep. I took the Pharmasan lab cortisol test a couple weeks ago. The cortisol was low during the day (while still being within the lines), in the middle of the lines at night, and high (above the lines) in the morning. I also discovered that my serotonin and norepinephrine are on the lower side. Several days ago I went to a semi-holistic doctor who suggested I take Neuroscience’s Serene at night, although the recommendation from neuroscience was to take it in the morning. He said, this should replace the 0.25 mcg of Lorazepam I’ve been taking right before bed which would help me sleep through the night. But the last two nights I have not slept a wink! I was feeling so frustrated which probably made it even harder to sleep. What do you recommend for people with insomnia specifically? I’d like to talk to bring ideas to him as he is not a specialist in this. Thank you!
Catherine Dennis
I have adrenal fatigue so my doc will ONLY start me on 16.25 mg of WP Thyroid!!!!! I told him I wanted to do STTM”s recommendation but he said no way it cause a heart attack???? Said low adrenals need to be healed but if take only the 16.25 mg he recommends, won’t that cause me to feel horrible???? It did last time so I stopped and that was in MAY. Now my TSH is high my RT3 is high. What do I do???
Janie Bowthorpe
What your doctor may be referring to is the fact that if, with low cortisol, we raise too high, the T3 just builds high in the blood instead of getting to the cells, causing hyper-like symptoms including a faster heartrate. So each person, we saw, has to figure out how much they can tolerate until they take the right amount of HC. A large body of patients can tolerate up to 1 1/2 grains or 90 mg. But some can’t go above a grain or 60 mg, and some can’t go above 1/2 grain or 30 mg without the hyper symptoms. So each person has to figure out what they can tolerate. Since you already have high RT3, adding a small amount of T3 to that tiny amount of NDT is what patients do…and again, T3 to tolerance until they find their right amount of HC. All based on our observations and experiences.
Kelly
I just found out recently about my Hashimotos. They put me on 25 mcg of synthroid generic. Now my insomnia is worse. I just took one and a half xanax and half an ambien. I am wide awake. No reaction. It’s like I need an elephant tranquilizer. I think I have high cortisol levels. I need to do the diet thing, and live healthier. When I finally fight myself to sleep, I have been sleeping 12 out of 24 hours lately. And it’s not just the Hashimotos. I got diagnosed with Epilepsy after having seizures for the first time in my life this year. My health is a mess! I know I’m playing a dangerous game popping these sleeping pills. But I am so tired, and my body refuses to let me sleep. I tried to get them to at least raise my synthroid. The original doc I saw at the clinic wanted me on Armour, but a fax didn’t get sent like it was supposed to for insurance override so she reluctantly put me on synthroid for the time being. But the other doctor I saw when I went back, refused to honor the first doctors orders and kept me on synthroid and refused to even raise it. I am a mess!
Christine
Hello Janie, I’ve been doing the PS & Holy Basil for 4 days now according to my ZRT saliva tests which showed high cortisol noon, afternoon and evening. Seems like my anxiety is getting worse especially before bed or even when I just wake up from a nap. The last doctor refused acknowledge this cortisol saliva test and did her own with bloodwork and showed my cortisol levels are fine. But I’m struggling horribly yet with anxiety. Today, I decided twice to do the adrenal cocktail which has some of the ingredients of the bromide salt pushing protocol. I ended up with burning pain in my bladder and wondered, am I pushing out bromide? Strange enough, my anxiety lowered and twice I got sleepy during the day which has been unheard of for quite a while. I’m tired but wired. Could my adrenals really be fine but I’m pushing them lower with PS & Holy Basil? Could my blood saliva tests been wrong? I have been on Lorazepam (1 mg x 3 a day), initially for my four months of hyperthyroid, and now for a total of 6 months as and it sure doesn’t seem to work at times with the level of anxiety I experience at times. Could Lorazepam have altered the saliva test? My goal is to get off of it once I get rid of the anxiety. I am still down to 1.5 NDT a day. Only got 4 hours of sleep last night with the help of pain medication.
Could my anxiety also be excess bromide in my system and that is why the adrenal cocktail worked? Just thinking out loud. Your thoughts would be greatly appreciated. I will try the adrenal cocktail again tomorrow just to see what happens.
Christine
Irene
I just wanted to add a plug for what has helped me. Had insomnia issues with not being able to fall asleep til around 6 a.m. (if even then); if I fell asleep earlier (rarely), I would wake every few hours. I had hot flashes (I’m post-menopausal) followed by anxiety attacks (deep fears of how I’m going to be able to…), which would slowly start calming down after about 30 seconds to a minute. A friend muscle-tested me, and said that one of the things that I need to do was to reset my sleep rhythm. She told me to take Hypothalamus PMG, by Standard Process, 1 pill in the morn, 1 pill later on in the day, and do this for 5 days on and 4 days off. I did that set 4 times. By the 3rd day of taking the pills, I was sleeping through the night!! But I kept up the regimen to completely reset my clock. And the hot flashes are gone, except for a rare occasion, w/a slight anxiety feeling trying to come up. It hasn’t gotten back to the full-blown symptoms that I had before of hot flashes/anxiety attacks, thankfully!
That was the good news. Now, for the last 4 days, I am taking too long to fall asleep, so will talk to my muscle-testing friend about cortisol, adrenals, thyroid, and maybe start on glandular thyroid. And I might even need to get tested for cortisol levels. The hot flashes/anxiety are still history; yay!
lou
Hello, Im 36 yo female and have to undergo thyroidectomy due to a nodule that had papilloma cancer. Before that though I was having issues with hyperthyroid and was taking ptu for years. IMyt endo took me off ptu for two years since he said I was normalized. I just had a baby 5 months ago, but by the time she turned 2 months I started having issues with insomnia and hyper anxiety which I firgured could be thyroid related again, to make a long story short, I did the scan and the cancer was found and thus the thyroidectomy. Im feeling better and I am on synthroid however I still have sleeping issues and 3 weeks after the thyoridectomy, the sleep issues got worse again. I started waking up and unable to go back to sleep or not being able to sleep at all. Please help me, this is very hard especially to a mother of two who have little children to take care of….
Janie Bowthorpe
Hi Lou. Yes, that would be a hard situation when you have two little ones. Please know this: Patients have learned repeatedly for years and years that Synthroid is THE worse was to treat hypothyroidism. And as a result, we observe that more than 50% of Synthroid-treated patients start having a cortisol issue as a result, which you seem to have. So if you want to go by patient experiences and wisdom ahead of you, here’s what you need to learn: https://stopthethyroidmadness.com/things-we-have-learned And one of what you will read is ordering a 24 hour adrenal saliva test to see what’s going on with your adrenals.
Christine
Thank you Janie for writing back.
I’m wondering if after I did iodine therapy after not knowing what rough shape my thyroid was in, that when it detoxed, the outgoing chemicals damaged nerves on the way out? Not sure if that is possible? Wish I knew someone who would confirm this for me.
The doctors put me on prednisone which made the burning soar in my thyroid and then moved to the kidneys for the first time ever. The last prednisone dose was day three on Saturday July 19th. I know prednisone alters cortisone levels. It’s been ten days. So you think it’s safe to do the saliva test after ten days of a three day course without effecting the results? Or should I wait a full two weeks?
I woke up again this morning with bad anxiety and high heart rate. I’ve had no thyroid meds for two and a half days. Can you tell me anything natural to bring it down? I read vitamin C but I think it worked opposite for me this morning. =(
Thank you,
Christine
Janie Bowthorpe
I have personally leaned to believe that 10 days may be just fine, especially when we are suffering!! I’ll let you decide. After doing the saliva, I would also do an internet search for herbs that calm anxiety. There are so many good ones!! I wish I knew more about the possibility of neuropathy and the thyroid, but I don’t.
Melissa
What herbs would be good to help with anxiety. I have hashi and my levels are normal on 88mcg levothry. I can’t sleep at night even though very tired and anxious during the day. The dr just says take antidepressants or zanax and that’s not helping
Janie Bowthorpe
Melissa, sorry about your sleep issue. Frustrating. Your problem may be the result of the inadequacy of T4-only, which Levothyroxine is. i.e. you could now have an adrenal issue that needs discovery and treatment. Adrenal issues can cause sleep problems and anxiety. I think it would benefit you to study the revised STTM book to understand. This can also help: https://stopthethyroidmadness.com/t4-only-meds-dont-work
Christine
Janie I have your book and have been scouring your website!! I think I may now have hope in solving my medical mystery that has been going on for years!
I just had a total thyroidectomy last Friday due to horrendous thyroid burning pain (ultrasounds and RAI scan, prednisone burning pain – neuropathy – made completely worse) plus the thyroid was a multinodular toxic goiter with too many small hot nodules to count plus cold nodules and an upper left lobe that was cold. Now wondering if the burning pain was neuropathy which now spreads to other parts of my body. Had hyperthyroid symptoms due to the hot nodules but have wondered if I’ve had hypo for years before this because of horrible fatigue. Been very exhausted for a long time. History of fibroids, ovarian cysts, thyroid nodules, and iodine deficiency according to Dr. Flechas with an NIS symporter defect. Anyway the surgeon didn’t want to remove the thyroid because he didn’t think it was the problem. It is now gone and I’m starting from scratch to figure out my medical mystery.
The surgeon gave me a script for Levothyroxine 100 mcg which I want to change over to NDT asap. I have Thiryod from Pimpom here. I took 2/3rd of one yesterday instead.
Since surgery, I continue waking at 4 a.m. high heart rate and now high blood pressure. Once I drink a full glass of warm water, it all goes down. My surgeon wants me to stop Levo until I see him on Thursday. Any thoughts on this? I do plan on seeing a natural doc on Wed and plan to come equipped with info from this site and your book.
I have saliva test kit here and plan to test adrenals tomorrow. I wake up every morning around 4 a.m. shaking with high heart rate (which I previously assumed with hyperthyroidism). Last night, I applied my bio-identical progesterone before bed which I’ve been on for almost over a year and my heart rate, blood pressure went up and had extreme anxiety; couldn’t sleep. Had to take an anxiety med and another med to finally fall back to sleep. l-glutamine, an amino acid is helping with the neuropathy. The waking up so early and anxiety before bed started with the thyroid burning pain. Any thoughts you may have would be greatly appreciated. Should I stop the progesterone? I’m doing 188 mgs a day done morning, noon and night since April and 40 mg previous to that. I plan to get iron levels checked as well as my last natural doc visit showed Ferritin was low. Am I on the right path?
Janie Bowthorpe
Hi Christine. It does sounds like a very good idea to test your adrenals via the saliva test. Last thing you need with your medical mystery is undertreated low or high cortisol. I had no idea that neuropathy could go into one’s thyroid!
Beth Denton
I was sick for years with a mystery illness, eventually I was diagnoised with Fibromyalgia, so I continued to suffer. I changed Dr.s and he ran some extensive thryroid test and found I had low thyroid I tried the prescription meds for this but they caused kidney problems. I now take Natural Sources Raw Thyroid and their raw adrenal made from pig glands and Solgar’s kelp I get them all from iherb.com. I now sleep, not in pain all the time, memory is better and I actually have a sex drive, it has been a long time to get where I am finally alot better. FM and low thyroid have the same symptoms…..if you have these problems find a Dr. who understands what thyroid test to do and most only do the standard one. My husband also suffers from low T hormones and that can really cause alot of problems besides sex drive, sleep problems, mood and anger issues, loss of appetitie, manic depression, rapid cycle bi polar. So if your husband is at that 50+ age and is having issues get him tested! Ultra T Gold works really well for men with no nasty side effects you can buy it on ebay. Hope that someone benefits and gets well!
Jennifer
This is my issue. I wake up every night at 3am, 5am, 7am. What I don’t get is why it shows up after you start NDT and not while you are on synthroid. I already know my Dr is not sold on the test; says it is controversial. He will do it though. Im headed for my first checkup since starting NDT in a few weeks. He did let me self raise my dosages.
Janie Bowthorpe
Waking up like that can definitely point to an adrenal issue (usually low cortisol), and why we figured out we have to do saliva testing, not blood. As far as being controversial…it’s only that way in the minds of certain doctors who don’t understand saliva testing. lol. You’ll have to teach him how to read the results, because it sounds like he won’t understand how to do it: https://stopthethyroidmadness.com/lab-values And finally, your cortisol issue (which is a result of being on the inadequate treatment with Synthroid) will show up with NDT because the latter is far more powerful (and effective) with its direct T3.
Kathy potts
I was waking up between 3:30 and 3:40 every morning. My saliva test showed such high cortisol level my doctor told me I was in a fight or flight mode. Taking Calm CP and Kavinase help.
Marcia
I have two of these issues. Sometimes I almost fall deeply asleep, then I feel an energy surge and am wide awake for at least two more hours. Other nights, I wake between 3 and 4 AM and have trouble getting back to sleep. Can a person’s cortisol level vary one night to the next?
Chandra
Hi Janie,
I love your website and your book. You’re brilliant! and you’re helping so many people (like me). I just got back from Hotze Clinic in Houston, diagnosed with adrenal fatigue & hypo. I am 44 and have some pretty severe sleep issues – both falling asleep and staying asleep. My cortisol/saliva test shows that I’m low the whole day except for late at night when it’s “normal”, but that’s probably keeping me up right? They started me on a low dose of HC and bioidentical NDT – starting very slowly. I haven’t noticed a difference yet, but they said it could take 2-3 months to see some changes, as they ramp up the NDT. Any herbs that you suggest I use for nighttime, for sleeping, that wouldn’t interact poorly with my hormones?
Thanks for your help
Chandra in MN
Janie Bowthorpe
For what it’s worth, Chandra, if saliva proves that a patient’s cortisol is that low, we learned the hard way that we do NOT start low with HC and ramp up. It’s MISERABLE. And thus, it does not take 2-3 months to see changes. You need to study chapter 6 in the revised STTM book thoroughly. http://www.laughinggrapepublishing.com
Rachael
Hi. Thank you for your advice. My gp done a salvia test. It was elevated at midnight to 18 (should’ve been 16) and then did the cortisol suspeession test but that too was very slightly elevated 55 should’ve been 50). I have been sleeping much better as he put me on two types of anti depressants. Valdoxan and endep. Since I was last in touch with you I have been sleeping beautifully whilst on this medication. My gp is convinced it is because I’m stressed (I do have a lot on my plate), but the last two nights I’m back to waking at 2am. my question is, would holy basil be a good supplement to take to lower my cortisol at night?
Janie Bowthorpe
Rachel, a lot of patients take Holy Basil to lower high nighttime cortisol. They start on the recommended dose on the bottle, then every three days, they go up by that same dose amount…until they find the amount that helps them both fall asleep and stay asleep. But you do your research.
Wendy
Any in put would be greatly appreciated. In 2009 I was at the top of my game and then the hot flashes started. Insomnia followed with depression, anxiety, confusion and fatigue. In 2011 I was told I am in menopause and was put on HRT and I felt great, only to discover cancer cells on a routine mamo. Bye bye HRT, hello, anitdepressants and sleeping pills. I got back a little bit of my life and have been coasting at work. The weight gain has been awful, 40 pounds in 2 years! I am very….well was very active but the weight has caused old injuries to flare when I do to much. So here I am 2014 and I know I can feel better so my doc puts me on levothyroxine. My lab work said I was on the low side, I have been on the ow side all my life so i didn’t question it. I am still taking welbutrin, paxil and ambien. When I took the levothyroxine I fell asleep for 5 hours! So I started taking it at night. I didn’t need the ambien anymore. I had energy, started exercising, dieting, hot flashes decreased and I felt a lot better. After 1 month, I’m exhausted again, I can’t keep my eyes open, I have foggy thinking and I don’t want to go anywhere. I am on the lowest does there is of levothyroxine. I take all the meds at night because they make me sleepy. I still wake up at 3 am and have for 5 years but I am able to fall back asleep. I still haven’t lost any weight and I have been on the Atkins diet for two months. Not sure what to do now? any suggestions?
Rachael
Hi, I’m so pleased I found this sight. I ad a partial thyroid economy when I was 17 (43 now). I’m currently on 15g levothyroxine. For the last 3 months I’ve been waking between 3-5am and not getting back to sleep, in addition to this I’ve been experiencing anxiety attacks, which I’m certain is linked to the sleeplessness as everything else in my life is super. What would you recommend me to suggest to my doc as a next step in my treatment. I’m keen to try the ndt but should I switch to that first before suggesting a cortisol test? Thank you so much in advance 🙂
Janie Bowthorpe
Hi Rachel. Glad you found STTM.
Because your doctors put you on a lousy medication (as has happened to millions), you now have an adrenal problem, and may also have low iron and other issues—all related to continued hypothyroidism. You need to order and do a 24 hour adrenal saliva test (http:/www.stopthethyroidmadness.com/recommended-labwork has several places to order one), plus get your iron tested. You may be able to tolerate small doses of NDT, but won’t be able to raise in the presence of either a cortisol or iron problem. i.e. they will need to be discovered and treated fully. https://stopthethyroidmadness.com/ndt-doesnt-work-for-me
Gary Peck
Hi,i was diaganosed with under active thyroid,and was put on Levothyroxine 25g,i always feeling tired through the day time and have to have a couple hours nap,,and I do not sleep to well at night,but if I do fall sleep some days I can sleep 24 hours,the problem now is if I driving and feel sleepy I have to pull over as imost certainly will fall asleep.and now I have come off my bike because I tried to make it home when I felt sleepy,sometimes I get shakey,feeling unwell and feeling I going to collapse,i try to eat to get energy to wake me up,which I think is helping,and my belly sometimes slim,and sometimes get big.i worried about losing my licence or hurting someone,my doctor I do not think knows how to help,or is it a case nothing can be done,i now becoming paranoid and have become suicidal,the doctors say I have personality disorder,i think it down to thyroid,any suggestions would be welcoming regards Gary
selina dyke
I was diagnosed with hypothyroidism may of 2013. at that particular time I was sleeping and couldn’t be awakened. if I didn’t have this happening I don’t sleep good at all. I had another bout of this in February/ March of this year. I am on armour 120 ( as of March) and supposed to use a cpap machine ( that doesn’t feel like it helps). I am currently being checked at the mayo clinic in Jacksonville, fl. my sleep symptoms are slightly improving, but I still fall asleep rather quickly and while driving. please help. I am tired of feeling and living like this
Betty Morelli
I recently noticed a change in Nature-Throid . I take it sublingually. It now tastes grainy and does not dissolve well. I wrote them about it and received no reply. Wonder if there are any more complaints.
Bonnie
I wake up with pain in my legs, not restless leg syndrome, more like nerve pain. I have to get up and walk around then I can go back to sleep.
Lauren Heizler
I wrote to Henry Knafo at ERFA complaining about the changes in the ERFA product, but never received the courtesy of a response. I’ve given up on the pharmaceutical products, such as Armour, NatureThroid, and ERFA. They keep changing formulas, and the patient just can’t win. I just spent over $100.00 on a bottle of 500 useless ERFA pills. I’ve decided that I’m going to have to go back to taking Nutri-Meds, which are much weaker and require you to take a lot more. You will start hearing more and more of people who are getting sick on ERFA because of the changes. I couldn’t figure out why my hair started falling out, why I was freezing all of the time even though my house was 74 degrees, and why my skin was so dry. ERFA has been ruined, folks. People can complain all they want, but the bottom line is that the company does not care any more than the other companies cared when people began to complain. As for me, I’ve given up on these companies. It’s hopeless.
Alex Lange
I was wondering if you could give me advice on how to adjust my ERFA. I was originally on Armour until the formulation changed and could not tolerate it. After 4 months of hell, I switched to ERFA Thyroid in 2010 with wonderful success. That is, until about 3 weeks ago when I started on a new batch that I received from The Canadian Pharmacy. Prior to this batch, I always received my ERFA directly from the company and it arrived in the sealed white ERFA bottle. These came in dispensed by the pharmacy in a single bottle. The pills seem harder and a little shinier than the old ones. I take 60 mg twice a day, usually with water instead of sublingually. Within a week of this batch, I started noticing hypo symptoms – waking up throughout the night, jittery feeling, constipation, body aches, stomach upset…all symptoms I haven’t had in years. I’ve switched to taking it sublingually, but I still feel lousy. Did ERFA increase the cellulose? Any suggestions, Janie? I understand that you are still on ERFA. I would prefer not to switch again if I don’t have to, but after my experience with Armour, I am not willing to crash like I did 4 years ago.
Janie Bowthorpe
Erfa changed the place where they manufacture the pills. Thus, there are now reports that it’s harder and not as effective. You might try increasing it to see if that helps. But definitely contact Erfa’s director and COMPLAIN: henri.knafo@eci2012.net We have to be proactive in getting the message across that this new way of making Erfa has ruined their product.
Peggy Holsclaw
Where does one get Armour? I am on Synthroid, but don’t feel like I think I should. I would like more information about Armour.
I just had a thyroidectomy in January 2014 so I am new to this.
Janie Bowthorpe
You are smart, Peggy, to question whether you should be on Synthroid. Because more than five decades of reported patient experiences have taught us that it’s the worst medication to be on, just like any other T4-only brand. See this: https://stopthethyroidmadness.com/t4-only-meds-dont-work
Armour is one of several brands of Natural Desiccated Thyroid you could switch to. They are mostly by prescription, but there is also over-the-counter ThyroGold or Thyroid-S, which you can google or talk to others as to where they get them. In the meantime, go here: https://stopthethyroidmadness.com/natural-thyroid-101 and get the revised STTM book here: http://www.laughinggrapepublishing.com
Patel
Dear Janie,
After reading your beautiful book and most of your blog articles, I have 2 questions, if you can help. I’m an insomniac.
1. does vitamin C lower cortisol? I have low cortisol in the morning and I usually take my vitamin C in the morning. So I guess I should take it at night, since I have high cortisol levels at night?!
2. regarding adrenal supplements, I’m taking a product in the morning to raise my cortisol level with the following listed ingredient: “Neonatal Adrenal Complex (Bovine) 80mg”. It doesn’t specify whether it is cortex or glandular and I don’t want to get adrenaline from this. Any ideas?
Thank you. Patel-
Janie Bowthorpe
Patel, no, Vit. C does not make low cortisol worse, and no, we haven’t see it lower high cortisol much either. For the latter, we use Holy Basil, for example. Adrenal Complex might be the entire glandular.
Patel
Thanks a lot for answering. One last thing. Since I see that most products ingredients are difficult to detect, do you have any brand/prodcut you can recommend which for sure contains adrenal cortex online without any glandular or other stuff to raise adrenaline? Thanks.
Janie Bowthorpe
Patel, two come to mind: Thorne and Standard Process. There are others.
Patel
Amazing. Thorne Research is the one I looked at. Great info. Will try this product. I’m surprised (and happy) it exists a good and inexpensive product from a reputable company. I also checked Dr Wilson product but they are very expensive. I read because the adrenal cortex come from pigs. Does it imply adrenal cortex from pigs is better or at least more effective than bovine adrenal cortex? Anyway, will try TR adrenal cortex. I thank you a lot for all you’re doing.
P.S..are you planning to publish any new book anytime soon? Maybe on thyroid related issues?
Janie Bowthorpe
The current STTM book is still extremely timely. http://www.laughinggrapepublishing.com
Betty Morelli
Will Isocort help with low cortisol?
Janie Bowthorpe
Hi Betty. Read this: https://stopthethyroidmadness.com/adrenal-wisdom plus Chapters 5 and 6 in revised STTM book.
Laura
Make that 4 Sleep Issues..
After learning I had sleep apnea I also see it coincides with being hypo thyroid. I’m almost at the right dose of NDT and I haven’t woken myself up gasping for air since I started it!
Melissa
Laura,
I was diagnosed with mild sleep apnea a year ago and have been using a CPAP regularly. I have been trying to find the cause for why I have apnea because I don’t fit the typical profile (overweight, large neck) but my doctors are not helping. My goal is to fix whatever is going on with my body and get off the machine, which I despise. Not through my doctors, I’ve recently learned that hypothyroidism is connected to apnea but my tests are in the “normal” range which I know is not a difinitive answer.
Can you tell me what NDT is and where to find it?
Janie Bowthorpe
Melissa, NDT is Natural Desiccated Thyroid: https://stopthethyroidmadness.com/natural-thyroid-101
Avenel Grace
Melissa, I have just recently been put on desiccated thyroid, by my Practitioner. I live in Australia, and had to send the script to Sydney to a manufacturing Chemist who made it up for me
Company name acpharm ( Australian Custom Pharmaceuticals 1300 853 620.) You have to have a script for them to supply.
I have been on this substance now for only 3 days, at 30 mg twice a day, and am already suffering sleeplessness. I will be seeing my Practitioner next week as I had to have special blood tests that normal doctors don’t ask for, and will ask him then what to do. Maybe the dose needs to be adjusted, or kept well away from the evening. I just don’t know. I have had a lazy thyroid most of my life, but no doctor has ever been as thorough as this one. Hopefully, I will be able to lose what he calls turgid fluid rather than fat, having explained, that when the body does not process insulin correctly, it builds up in a thick slime in the Lymph system, thus causing weight gain and heaviness in limbs and all sorts of flow on effects with joint and back pain and difficulty moving. The blood tests I had , had to be after a meal, about two hours, instead of the usual fasting tests, so they will show just how much the body is processing insulin. Then we will know how properly to adjust the problem..
Lorelai Smith
I’ve just ordered the book. I’ve long suspected I have some sort of hormonal problems, thyroid or cortisol or something. I have not fallen asleep without meds for years and despite my impeccable sleep hygiene, I cannot remain asleep. The last 2 years a new symptom has developed that alarms me, It feels like a panic attack or a rush of adrenaline or heart palpitations (my rate when in bed is somewhere around 125 during this time). It always happens right around 8am, I use no alarm and have blackout curtains.
I’m seeing an NP next week and am just wondering, are my instincts correct. Could this be a thyroid problem? I have other symptoms but I’m not trying to get free medical advice. 🙂
Iwuz119
My doctor started me on Levothyroxine 50 mcg and upped it to 75 6 weeks later. Within 3 weeks I started getting so nervous all the time and kept waking early in morning with a shaky tremor-y feel in my body. No going back to sleep. Heart palps. My doctor switched me to Armour 30mg. I’m still feeling a bit shaky all the time. Sleep still a problem. I have to take meds to sleep. Could it still be the Levothyroxine in my system or does it take a while to adjust to Armour? Also, I still have hypoT symptoms: cold hands/feet, low temp, etc, even with the nervousness. I’m a mess. Any comments will be appreciated.
Janie Bowthorpe
lwuz119, from what patients have learned, 60 mg (one grain) is a good starting dose for most, then patients found they can raise by 1/2 grain every two weeks or so, then they slow down in the 2 grain are to carefully find their optimal dose, which might be in the 2 grain are or might be higher. Janie, for example, is optimal on 3 1/2 grains, but each person has to find what’s right for them. So if we go by the experiences of patients before you, your problem might be about being on only 30 mg. See https://stopthethyroidmadness.com/natural-thyroid-101
iwiz119
Thank you for reply. I thought nervousness was a sign of too much medicine? If 30 mg is making me nervous feeling wouldn’t 60 make it worse? Also, should I be taking this twice a day or only in morning? Thank you.
Janie Bowthorpe
Patients have reported symptoms of excess adrenaline (which “nervousness” could be) from too little amounts of NDT, of which 30 mg usually is for most. i.e. the body produces more adrenaline when we underdose ourselves. If one sees an increase in symptoms of excess adrenaline as they raise, then it’s time to go back down and do iron and saliva cortisol testing, we’ve noted. Read the link I provided 🙂 And share all this with your doctor.
Rebecca
Glad I found this site! I just started Armour thyroid 30 mg about five weeks ago. Since I started Armour, I generally noticed improvements in my previously excessively dry skin and headaches. However, it seems my insomnia has worsened. During the past week, I woke up many nights hungry enough to get up and make a peanut butter sandwich. I don’t recall the symptom of hunger prior to beginning Armour. I also found myself excessively tired today. Is it reasonable that these are simply signs of adjusting to the treatment?
I appreciate any thoughts!
Janie Bowthorpe
You are on less than a starting dose, from which patients raise…and raise again. Go here: https://stopthethyroidmadness.com/mistakes-patients-make
Rebecca
Thanks for the quick response. I’ll contact my doctor regarding the dosage.
Alex
I’m also suffering from insomnia with Armour. I’m taking 60. I feel awful. Why?
Janie Bowthorpe
Hi Alex. Staying on simply a starting dose like 60 mg will stress the adrenals, thus the insomnia which is high cortisol. Read this informational page on how we start on, how we raise, and what our goal is: https://stopthethyroidmadness.com/natural-thyroid-101 You also now have stressed adrenals, and we have to treat that in order to raise Armour without problems. That’s why we do this to see whats going on, and know what we need to treat: https://saliva-cortisol.squarespace.com/
kathy czadzeck
How do I find a doctor that will prescribe according to symptoms?? May 2013 my TSH was 156. I am a RN, we are always tired. School of suck it up and do the job. Out of work for 4 weeks. Had 5 days of Cytomel and 125mcg Synthroid. At the 4 week mark I was increased to 137mcg which is still the dose I am on. Last T4 was 1.7 and TSH .335. Still feel like I am really not back to who I should be. I want to be normal again.
Janie Bowthorpe
Hi Kathy. First, study this: https://stopthethyroidmadness.com/how-to-find-a-good-doc Then learn from patients here: https://stopthethyroidmadness.com/things-we-have-learned because no doctor is perfect and you have to be prepared to guide even the best in some areas. 🙂 Hang in there! THIS will be YOUR year. 🙂
Pamm Gassaway
Janie love the article, having adrenal insufficiency with hypothyroidism and hypoglycemia I have had my fair share of sleepless nights, I recently came off armour thyroid because my t4 levels dropped alot, I was put back on synthroid, I am on 25mg cortef too, last two weeks I fall asleep very easy but wake up at 3:30 every morning it doesn’t matter if I go to bed at midnight I wake up. I have tried eating with no luck. I have taking cortef at that hour no luck, I took half of ambien it didn’t phase me, I know my thyroid numbers are low but according to your article my situation sounds like low cortisol? I feel hot, with agitation. I have experienced lower sugar readings but not sure if this is a separate issue. Eating before bedtime doesn’t help. I took 32.5mg yesterday steroids still didn’t sleep. I just wake right up every morning 3:30. Its so frustrating, any suggestions? Thank you
Janie Bowthorpe
Not enough information to be precise, but if your FT4 dropped while on Armour, that could be because you weren’t on enough and the T4 was converting like mad to T3….but also to RT3 if you have low cortisol. Patients will often tell you that moving back to Synthroid was the worst move. They instead stay on NDT and correct their adrenal and/or iron issues. We’ve also learned that we should never be on HC unless a saliva test shows our levels quite low through the entire day. But once patients are on HC, they have to do their Daily Average Temps. The latter is crucial. Add more HC here or there is not the answer. Chapter 6 covers all this.
Pamm Gassaway
I have to be on Hydrocortisone, I had a acth test done 6 years ago that showed Adrenal Insufficiency, so I don’t have much option on that. I wish I could come off steroids. The other test along years confirmed my adrenals no longer putting out cortisol, I wished I had this information back then, I believe going this long on steroids there is no hope for recovery on the adrenals. Doctor that switched me back to synthroid doesn’t know what he is doing on thyroid so I have a appointment with a professional on thyroid in 2 weeks. I am still not sleeping. I am doing the daily avg temps & they are .03 degrees off from one another for the 5 days. That is on 35mg of steroids. So I feel that maybe I am low aldosterone or need a longer acting steroids. I also found out recently I have lyme disease, this could be the reason I am having issues as well. I know now after reading your book on the armour my doctor should have raised me after 2 weeks but he didn’t. That is why my t4 levels fell so much. They were 1.31 before armour after armour they dropped to 0.80, I felt horrible, my t3 also dropped. This is why I found someone else. Hopefully she can help me with this. 5 day avg temps today is 98.7, 98.6, 98.4, 98.3, 98.5. Thank you for your reply
Pamm Gassaway
Have you had your adrenals checked? I went through same thing sleeping alot & I was finally Dx with Adrenal Insufficiency so I no longer need naps since I was put on steroids. . Thyroid & Adrenals have a close relationship. 😉
Debbie Stevens
That’s what I think I have. Thyroid and adrenal problems. Now the issue is, where do I go to get proper diagnosis and treatment?
BS
I was diagnosed with hypothyroid about a year ago after going to my doctor with complaints of extreme tiredness and needing a 2-hour nap in the afternoon after work. He prescribed Levothyroxine, and after 3 months my free t4 and TSH was normal, but I was still feeling the same. He then tried me on Celexa for anxiety…this did absolutely nothing. So then he recommended a sleep study, which I just had done. The results came back with hypersomnia, possible mild narcolepsy (I slept normally during the night portion but fell asleep within 4 minutes during each of the 5 scheduled naps the next day, although I did not go right into REM sleep as required for a narcolepsy diagnosis). So tried a prescription stimulant (Nuvigil), which is not working at all. Anyway…could my sleepiness and ability to sleep for 10-12 hours at a stretch be related to poorly managed hypothyroid? I see a lot on the this page about waking up and not sleeping well, but my problem is that I sleep great but am still tired and could pretty much go to sleep anytime the opportunity is presented.
Janie Bowthorpe
Yes, it could be related to a poorly managed hypothyroid…or your possible mild narcolepsy could be made worse by a poorly managed hypothyroid, which patients feel strongly that T4-only is. https://stopthethyroidmadness.com/t4-only-meds-dont-work
Debbie Stevens
I have been to 5 different sleep labs in my life with essentially the same diagnosis that you have! I can go to sleep and stay asleep (but I tend to be a night owl). But my biggest problem has been that I have a very hard time waking up and will sleep 12+ hours if not woken up by an alarm or someone else. Nuvigil helps me stay awake to work 3 days a week. But if I’m off work and sleeping, it won’t help me wake up until I get up and take it! Still need naps sometimes. Ugghhh!
Merytm
Debbie you may have a circadian rhythm disorder. Delayed sleep phase disorder can cause the symptoms you describe – its more than just being a “night owl.” CRDs are another thing docs are just now getting up to speed about, like the thyroid issues here. Check out this website: http://www.circadiansleepdisorders.org.
Kiwijack
How did you ramp up your desiccated thyroid dose?
Janie
https://stopthethyroidmadness.com/natural-thyroid-101
Suzie vercruse
I’m a basket case . Fighting cll leukemia no immune hashimotis and lw protein levels and insomia cannot sleep have tried every adaptogen and made my cortisol levels all change use to be high am normal noon lower afternoon very high at night….took several thi gs nothing worked. Now I’m very low am super high noon lower afternoon and high nightime . Cannot function and no sleep even tried o.5 mg ati an at night get about three to four hrs but not restful sleep up at 300 am cannot go back to sleep. Just tired wired and exhausted
Sara Sloper
I was just diagnosed with an underactive thryoid today which was quite a shock. Aparantly my blood test hormone levels were so high that you normally have two blood tests but my doctor has put me straight onto levothyroxine 25mg. I am interested to hear peoples views as I have read quite a lot of comments about other types of drugs – do the doctors always start with levothryoxine? Would a regular GP know enough to make the change if it wasn’t working to combat my symptons? Just not really sure how it all works. Sara.
Janie
Sara, yes, many doctors still use the lousy levothyroxine, which is the absolute worst thyroid medication ever thrust on patients. Read this: https://stopthethyroidmadness.com/t4-only-meds-dont-work Natural Desiccated Thyroid (NDT) is the way you want to go. After you read the former page, you’ll see a link to read about NDT. After you have read those two pages…and do become informed first by reading them…then head on over to groups where you can find out how to get on NDT in the UK. There are two European groups plus a UK group listed under #2 here: https://stopthethyroidmadness.com/talk-to-others
Sara Sloper
Thank you for your feedback. I will look at the links.
Marc V
Not true. I had the jitters from both armour and levothroxine. A natural doctor who is also an MD says the problem with armour is “because’ it is natural is that dosages are hard to keep constant. I read about that 4 yrs ago and guess they havent got it right yet. Synthetic drugs they can get the dosage right down to the mcg. where as anything natural will have variations. Maybe there really is a reason armour isnt the cure all and your “stupid” edo isnt that stupid after all.
Janie Bowthorpe
Sorry Marc, but lots of doctors make that statement about Natural Desiccated Thyroid and it only reveals how clueless they are. NDT has been easy to dose for a huge body of patients worldwide. And by the way, those “wonderful” synthetics you refer to have had a slew of recalls.
Kari
I currently have switched to Armour from levothyroxine (terrible drug) for mild hypothyroidism. After a year of taking levo I noticed I got even more fatigued, vertigo that would never end, dizziness, lightheadedness, bp issues…I stopped for a week and def had withdrawls. Switched to the Armour…its been a month and I don’t have nearly the bad dizziness, but now they think I have Postural Orthostatic Tachycardia Syndrome. Because of all the blood pressure issues. I have had to cut back on the Armour (tsh is 1.99 last checked and I currently am taking 30mg) but I cut out two days a week now and I seem to feel loads better doing that. I do get panic attacks in the middle of the night though. Am wondering if I should switch to the canadian armour??? Just want life to return to normal.
Stephanie
I have found that taking an Armour 0.5 grain tablet at the time of insomnia combats the insomnia. I’m not sure why this works, but it really seems to help.
Jamie
I just stumbled across this site. Asi read through the symptoms I counted that I had 41 of them. Hypothyroid is not something I ever thought I had. Although I thought all my sysmptons were unrelated a part of me wondered if it was part of a bigger picture. I suffer mainly from heart palpitations which was diagnosed as SVT simply through a specialist listening to my heart beat. I really wonder if all my sysmptons are related.
Jennie Walters-West
Hi what is SVT?? I have Hashimotos now diagnosed for 6 months.
I have had low bp, and this weird pulating in my back and neck and I think its is blood flow or
something related to pumping, arteries ,blood and circulation but my endocrinologist says not related to
thyroid. However I read alot and see that there are heart and circulation probs , slow heartbeating with
Hashimotos. So any information would be appreciated. Just found out I have a .8 cm nodule OR adenoma on thyroid. Its been 8 days have not heard from doctor. I asked for a report from ultrasound thats how I know. Very disgusted at level of medical care.
Janie Bowthorpe
Jennie, start here: http://ww.stopthethyroidmadness.com/hashimotos 🙂
Sharon
I just found this site yesterday after 25 years of treatment with Levoxyl. I have had chronic health problems for 16 years, since the birth of my second child. I am overwhelmed by the amount of information, and I see myself at nearly every turn. I have been to rheumatologists, neurologists, gastroenterologists, allergists, and more. Could this be my answer? After 25 years of t4 only, can symptoms like chronic neuropathy, joint pain, fatigue, brain fog and digestive issues be reversed? My children have never known me as the Mom I was supposed to be. Sharon
Janie
Yup, this is your answer, and yes, it can all be reversed. And it will be very important for you to become informed, because doctors are not totally caught up with what we’ve learned. You’ll have to expect to guide your doctor to the right care for you, and if he won’t do it, you’ll have to find a much more open-minded, wiser doctor! Welcome to STTM. It’s been waiting for you to discover it. 🙂 https://stopthethyroidmadness.com/things-we-have-learned
Robyn
Sharon, you need to be tested for Lyme disease. There are many websites for Lyme disease for more info. Read the Stories of Hope on their website and you will see just how many different ways Lyme presents itself. Pay special attention to the which lab you use. (Recommendations on website..) It’s a very inexpensive test $200, but well worth it to find out if you have it or not. The tics can be as small as a poppy seed and a person may not even know they’ve been bit. Fastest spreading infectious disease right now. And the results if not treated are devastating. Please read all of their info on their page. (Easy reading, but very informative..) My daughter and I both have it. I was bit by a tic 36 years ago, and she was bit by one 6 years ago. It took us that long and a very good naturopath to lead us to high quality testing for all of the above issues that you mentioned. Lyme can cause Hashimotos, adrenal fatigue, and food sensitivities as well. Good luck to you. You will be in my prayers, as I feel like I’ve lost most of my life as well. My children (and yours) deserve so much better for sure~
Robyn
Forgot to mention the website! LymeLightFoundation.org 🙂
Debby
Also look into mold toxicity or biotoxin and CIRS usually goes with lyme or other lyme like disease
See website surviving mold.com
And dr shoemakers symtoms
It can mess with sleep pain so can lyme bartonella mold not talking allergy here it’s differnt and messes with every cell including adrenals and hormones !!
I’ve been dealing with it like a puzzle but see the prices fitting together
Check it out
Julianne
Hi! I am new to this website and especially to the world of thyroid issues. About six weeks ago I began feeling very strange almost overnight. It began with dizziness and a wierd feeling in my neck. Then progressed to extreme anxiety, nervousness, insomnia, lack of appetite, pounding heart, and very high BP for the first time in my life….all couple with a squeezing sensation in my throat. For six weeks I have endured this and after many docs, BP med changes, diuretics, low potassium, and suffering from anxiety, derealization, and depression (not to mention everyone tells me its all just anxiety), I was diagnosed with a probable adenoma nodule on a goiter! I didn’t even know I had it! No one ever felt my neck once! It was caught on a scan and then ultrasounded.
I am supposed to see an endocrinologist and perhaps get a biopsy next week. Any advice on what to do and what not to do? Could those symptoms be thyroid related? I live in metro-Atlanta. Any good doc recommendations here? Thank you so much! Julianne
Janie
Hi Julianne. Sorry to read what you are going through. Read this: http://www.www.stopthethyroidmadness.com/hashimotos Then only after you have read it, go to the following page to see a variety of patient groups where you can get feedback: https://stopthethyroidmadness.com/talk-to-others
Coco Zumba
Hi I have hashi just been diagnosed with sleep apnea does that mean I should get my cortisol checked? Also feel great on ndt my cholesterol is finally after 20 years in normal range have been gradually increasing dosage but my rt3 is excessive yet I don’t have any symptoms?
Janie Bowthorpe
Yes about doing a 24 hour cortisol saliva test….and all four iron labs.
Lisa
What Iron labs do you suggest and how do they fit with this problem?
Janie Bowthorpe
Lisa, iron labs mentioned here: https://stopthethyroidmadness.com/recommended-labwork
Jennie Walters-West
I just had an ultrasound and it says I have a .8cm nodule OR adenoma on right side of thyroid.
Im so mad as its been 9 days and I have not heard from Doctor.
I just left her a message.
Did you have the biopsy??
Shsron
I had a 4.8 x 3.5 x2.8 cm removed and tight thyriod it took 8 mths to be referred had 3 biopsy. The large mass was benign but found a small one and it was positive to cancer. So 4 weeks later left thyriod removed tedted also positive… cant get a good night sleep and tired by afternoon
ericka
Hey Julianne I read your post I have the exact issues u are having I hade insomnia going on 5 wks and extreme anxiety just out of nowhere. It is scaring me to death all the Dr. Are saying its anxiety and I know its not. If u have any info could u please help me.
Janie Bowthorpe
Ericka, that can point to cortisol issues which also cause high cortisol at bedtime…and cortisol issues happen from either being undiagnosed a long time or being on T4-only. You need to do a 24 hour saliva cortisol test: https://stopthethyroidmadness.com/recommended-labwork
Violet
Hey Janie, where can I read more about high cortisol and reactivated Epstein-Barr virus, as you allude to above in “Sleeping Tidbits”? Interesting stuff, I definitely have the latter…
Gita
Hi Ericka, I have been having severe insomnia as well, not being able to fall asleep for days on end. I assumed it was high cortisol levels, though my saliva cortisol test showed normal results. I tried almost everything (melatonin, PS, GABA, magnesium, L-theanine) and nothing seemed to work!! Then I read some information about how insomnia can be connected to gallbladder issues. I have been taking A. Vogel Liver Gallbladder drops for the last three days – and have FINALLY been sleeping through the night. So it’s something to try if other supplements don’t work. Also, I was taking 750 mg of GABA – I wouldn’t fall asleep all night, but would get up feeling groggy. I’m wondering if a higher dose of GABA may have just knocked me out. Good luck resolving it!
Janie Bowthorpe
Gita, I want to make sure you understand that your bedtime saliva result should be at the bottom, literally, or it’s not “normal”. Even one number above the bottom has meant too-high cortisol for folks, revealed by being unable to fall asleep. So if it was literally at the BOTTOM, and the Gallbladder drop helped, hooray!!
Ka
Can you tell me the list of active ingredients in the A Vogel formula you are taking? There seems to be a few different products by them for liver and gallbladder and they each have different ingredients….thanks!
Alan Inselberg, C.C.N.
Please begin with the investigation of Iodine. You can not repair the Thyroid without Iodine. You can not make Thyroid Hormone naturally (without medication), ever, without Iodine.
Marsha
Could you go into more detail about Iodine…
Rachel Woods
However hashimotos is exacerbated by iodine, iodine, the supplement we’re told to take when we want to conceive, by why are we not tested first for anti-thyroid antibody, as iodine exacerbates this and subsequently contributes to fertility issues.
Janie Bowthorpe
However….there are a large body of Hashimotos folks who saw their antibodies go down with iodine!! So each person has to find out what works for them in the iodine/Hashi’s arena.
Sue
Isn’t it true that adequate selenium elminates the problem Hashi’s people have with iodine?
Janie Bowthorpe
Here’s an article about companion nutrients and why they help anyone (not just Hashi’s people) with iodine: https://stopthethyroidmadness.com/2013/12/29/companion-nutrients-the-key-to-iodine-protocol/
Patients have also noted that taking selenium lowers their anti-TPO antibodies pretty nicely.
Tammy
My research is saying its not the iodine causing problem with hashimotos. But you need to take selenium 200mg with it
Tania
Tammy: that is 200 mcg (micrograms) of selenium, not milligrams!
connie
great information, sleep patterns can reveal a lot of imbalances! I am a night worker and everything I read about balancing cortisol and hormones, keeping things in sync since the body operates on a rhythm is critical for optimal health. Its so very hard for me to keep things regulated because I work nights. I have had thyroid nodules for years now with the docs saying wait to see if they cause problems. They never did as far as I could tell. Then, just a few months ago, I had felt like I couldn’t swallow and the doc sent me for ultrasound of thyroid. The results stated I had two large nodules on either side..(they grew) but then the darndest thing happened. When I was sent for a fine needle aspiration, the doctor and nurse both said,..no..you don’t have nodules. There is nothing there. (just two months between ultrasound and fine needle aspiration doc) I told the doctor I had always had nodules per ultrasound. She said no I didn’t and she sometimes sees this occur. She of course didn’t do the fine needle, but told me my thyroid looked porous like a sponge and useless…(i wanted to cry..but didn’t) I said “I guess I’ll have to make a specialist appt. for thyroidectomy she said “no” leave it alone, its risky surgery with all the nerves and vessels. It wouldn’t hurt to just leave it in your taking meds for the rest of your life anyways…Does anyone know if this is actually good advice? I also have two co-workers that have had partial thyroidectomies and I wondered why didn’t they just take the whole thyroid out since they took so much, what the purpose of keeping a small portion, they would be on meds the rest of their lives anyways. Then I read somewhere that stated the gland can regrow? …I’m amazed. I’m now faced with..’can a porous thyroid rejuvenate?’ Is leaving it alone where its at, better than having it removed since its useless now. (and I feel it)
Janie
Connie, it goes both ways. Many patients who had their thyroid removed not due to cancer, later say they wished they had never done it.
Nia
I am a patient who wishes I never had…
brenda
Please think long & hard about removing your thyroid. I chose to have half of mine removed (they wanted to take the whole thing out). Afterwards my libido disappeared completely & that was THE END of sex for me. Next the exhaustion, shortness of breath, weight gain, and inability to think almost cost me my career. During my journey, I experienced so much rudeness from so many Endos that I resolved to NEVER see one again. The level of greed, in the medical industry, has gotten out of control. Keep your organs and work on natural solutions.
Linda
I agree. Do not remove it if at all possible. Though I still have mine, I have all those symptoms so it’s not working right. I have Hashimoto’s and am hypothyroid for many years.
Kate
I had a thyroidectomy, and have had zero sexual dysfunction. No problems at all, whatsoever, as far as that goes.
Annette Holmer
I had Graves Disease and had my Thyroid removed through radiation. I take medication daily and do fairly well with it as long as I check my blood levels and go to an Endo that understands blood tests. I’ve had some that were not the best but I now have an awesome one who checks everything and I found out I have eye issues from the Graves Disease. I have to take eye vitamins. Nos sex issues, no tiredness.I feel pretty good.
Elaine
Connie, not sure if you will see this now, but if you are on Facebook there is a group called “FTPO (For Thyroid Patients Only) – Without a Thyroid” that could be very helpful for you. It is a closed (private) group and you can request to become a member. People there have either had their thyroid removed or are considering it and they could help you and answer many of your questions. This group works in tandem with Stop the Thyroid Madness so suggestions given are based on patient experience.
Tiffany
What a great article! I’m new to this website, and wow what a wealth of information!! I’m 34 and I’ve suspected I’ve had thyroid issues for over a year now. After 2 GP’s that told me nothing was wrong with my thyroid and a endocrinologist that suggested I try weight watchers, I finally found a naturopath that’s getting me on the right track. I have no problem falling asleep but can’t stay asleep and my endocrinologist also suggested that I should have a glass of wine to wind down! So happy to know there are others with thyroid issues and I’m not alone.
MIchelle
I too have been told that my thyroid tests are fine. But I have many of the symptoms, so I have started taking a raw thyroid glandular supplement recently. Hopefully, that will help
Silvia
Great information! My new doctor change my old Levothyroxine to Natur thyroid. Already feeling better after a month! Sleep is still a problem. My cortisol levels were almost flat. I am taking Andren-plus during the day and it works great with the tiredness. what should I do to be able to fall sleep faster and stay sleep? Any more ideas? thank you!
Jennie Walters-West
what is adren plus/? where do you get it?? I have hashimotos.
Annie Richardson
I think she is refering to Nutri-adrenal extra, Jennie, you can buy it over the internet ( I get it from Your nutrition shop) 🙂
Jean
Do you think it would be good to take Nutri AdrenMax and Nutri Advanced Thyroid.
Have had so much pain for years from 2 cases of PHN pain- since 1987 & 1998. Dr put a 3 day patch of Fendyanl (that went into body 7 hours instead of 3 days). Ever since so much anxiety, panic attack’s no energy.
I m having so much troubles with thyroid and very tired, trouble sleeping unless I take melatonin and other sleep help….
Can’t get into doctor till June….. would appreciate what other’s think that work natural products.
Janie Bowthorpe
Jean, sounds like you need to order and do a 24 hour adrenal saliva test to see exactly what’s going on with your cortisol levels. Then treat accordingly. https://stopthethyroidmadness.com/adrenal-wisdom
Stephanie
Hi everyone. this is a wonderful and has helped me and my patients tremendously ( I am a naturopath). I have had insomnia on and off for years depending on my stress level. Things would work well for a few days, then just stop and I’d be up all night again. I finally found a solution that seems to be working for over a month now. I want to share because I know how desperate one can feel without sleep. I take kavinace ultra PM combined with niacinamide. Please check with your doctor before you start these. They are contraindicated with SSRIs and liver dysfunction. I hope someone else finds this helpful.