When I first had my thyroid removed in 2012 due to autoimmune destruction from Hashimoto’s disease since age 10 and Graves disease for 6 years, I did not know what to expect. And like most other post-thyroidectomy patients, I was reassured by my surgeon that all it would take is for me to take “a little pill every day and things will be much better” (i.e. my surgeon referring to the Synthroid she prescribed for my post-op thyroid replacement)
What ensued after that was a nightmare that has lasted the past two years!
I went into heart failure multiple times from the inadequate replacement with Synthroid (T4 only medication). I was MISERABLE! Dizzy, heart racing out of the blue, internal shaking as well as nausea, severe fatigue and extreme irritability! I became a monster that even my own family did not recognize!!
STTM was discovered
Fast forward 9 months, and a good friend of mine came across the Stop the Thyroid Madness website and sent it my way. I ordered the book after looking through the website and realized I knew NOTHING about thyroid disease and proper treatment for hypothyroidism, and apparently neither did my Doctor!!
I made the switch to a working Natural Desiccated Thyroid like Armour e in March 2013, and things DID improve some. But the fatigue, shakes, dizziness and irritability continued! I flew off the handle at my husband, my parents, even my dogs (poor babies did not deserve it, but I was just out of control emotionally!) I thought I must be going crazy and feared I had developed a psychiatric disorder. In fact, my Endocrinologist suggested I see a psychiatrist to “work out my frustration and anger!”
It was my adrenals!
I started reading Chapter 6 in the revised STTM book— All about ADRENALS!! I thought I was reading my life story all over again! I had 90% of the symptoms listed on the “symptoms of low cortisol” page on the STTM site. I tried Janie’s at home testing and failed them all miserably! I ordered a 24 hour adrenal saliva cortisol test, and there is where I found my answer! See the results below:
Turns out I wasn’t crazy! My adrenals were not putting out adequate cortisol to handle the increased stress of low thyroid levels and all my other life issues! I was LOW, LOW, LOW, slightly HIGH.
“How do I fix it?”
I considered using T3CM, but knowing that I was low Morning, Noon AND Evening meant that was not likely to help per other patient’s experiences.
So someone suggested I try Thorne ACE (Adrenal Cortex Extract) to replace my low cortisol at those three times of day! I got it all ordered, read through the chapters in the STTM book. I added in high doses of Vitamin C (3,000mg per day) and high doses of magnesium (800-1,200mg per day) and started supplementing with Celtic Sea Salt and the Adrenal Cocktail (salt in water, plus minerals). I started feeling better pretty quickly with the sea salt and nutritional support added.
It took me several weeks of trial and error to get my symptoms under control and get the dose of ACE correct. I had to learn to take DATs (Daily Average Temperatures) to gauge whether or not the dose was the right one. I tracked symptoms, doses and temps daily. I adjusted up every few days until my temps stabilized and my symptoms became more minimal. I was still without a good doctor at this point, so I was self-treating using the knowledge I got in the support groups and in the Stop the Thyroid Madness book.
A job change was necessary
I realized that I could not continue under the extreme stress of working the 12 hour nightshift in a busy hospital. I was burning the candle at both ends, and everything I read about adrenals said reducing stress and sleeping on a set schedule was a MUST. So, I spoke with my spouse, and we decided I would quit my job and look for something less physically and emotionally demanding, and something with day-time hours exclusively. I was off work for 3 months while searching for a new position, and though money was tight and things were stressful, changing to sleeping at night once again made a HUGE difference (I put myself on a strict 10 pm-7 am sleep schedule.) I cut caffeine, sugar and alcohol out completely – the caffeine was very tough to give up, but I did it! Being out of the high-stress work environment was extremely helpful in healing adrenals!
A saliva retest
I was feeling better little by little, but the fatigue remained, especially in the afternoons. I would just crash around 2 pm and couldn’t do much of anything until late in the evening! I would get periodic adrenaline reactions (especially late in the afternoons.) I would sweat profusely, get shaky inside, feeling like my heart would pound out of my chest! I finally got in to see my “good thyroid doctor” in November 2013. He immediately said he wanted to take me off ACE for two weeks and retest my adrenals to see if I had made progress. Here is what they showed: (the retest is the one that says “current” taken in November 2013:
As you can see, my Morning was showing improvement, but the noon and evening levels slid to a lower level than when I started ACE.
I spoke with my good thyroid doctor, and he suggested we lower ACE in the morning, add more at the noon/evening doses and slide the times a bit earlier than what I had been taking. Things continued to improve, and I got my afternoons back! By then I was back working full time up to 50 hours per week. The new job was emotionally stressful, but not physically so. I continued to get adrenaline reactions in the late afternoon, but they became less and less as time went on. I started feeling completely recovered by Feb 2014. I still had low thyroid levels due to hormone resistance, but adrenals symptoms had completely resolved. I weaned off ACE and did just fine. I kept up with the nutritional support of high dose Vitamin C and Magnesium and did the adrenal cocktail and celtic sea salt if I needed it, but it was rare for me to need those at this point.
We waited three months of me being off of ACE and retested to see where I stand! Here are the new, post-treatment levels. Taken end of April, 2014:
As you can see, my levels are now VERY close to optimal! I did notice that my nighttime level has gone up some, so my doctor had put me on Zinc to help reduce that, and Melatonin as needed (though I don’t really take it more than once per month.)
I discovered recently that I have Lyme disease and chronic infections which is the cause of my inflammation and continued low thyroid levels, despite taking Nature-Throid and Cytomel T3 at high doses. We hope that treatment for Lyme will finally help get inflammation down and improve my thyroid levels to liveable again!
I cannot be more thankful to Stop the Thyroid Madness for helping me get my life back! There IS life after Adrenal Fatigue!! I would say healing my adrenals has been the single most important thing I have done to feel better and function better on a daily basis. My family and my dogs no longer fear me and I have my laidback personality back once again, and my house is now at PEACE!! Don’t give up hope!! STTM will help you get better if you follow it!
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* Are your Ducks in a Row??https://stopthethyroidmadness.com/ducks-in-a-row
* Janie Bowthorpe has the first of a series of eBooks out, and the first one is on EBV:https://stopthethyroidmadness.com/sttm-ebooks/
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90 Responses to “How Dawn healed her adrenals–an inspiring story everyone must read!”
Does ACE suppress ACTH like Hydrocortisone would?
In small amounts to support when under stress, probably not much. It’s weak.
Hi janie,its me again.I wanted to see if you can help me.I was diagnosed with thyroid cancer this year and had a thyroidectomy.Prior to my thyroidectomy I was already dealing with symptoms of hypothyroidism but never knew what was going on.
After my thyroidectomy I had a dutch test which showed low cortisol and low dhea.I’m currently taking 27.5 mg of cortef for my low cortisol but don’t know how to interpret my thyroid labs,do you think you can help me?
My labs are:
Free t4 1.1 Reference range 0.8-1.8
Free t3 4.1 Reference range 2.3-4.2
Reverse t3 15 Reference range 8-25
My thyroid dose is 150 mcg t4 and 20 mcg t3,should I go up to 175 t4? Thank you.
Here’s the page to compare to the info: https://stopthethyroidmadness.com/lab-values And definitely look at the RT3 on the latter page. It comes from T4. And you need to correct the cause: https://stopthethyroidmadness.com/reverse-t3
It’s confusing to me because it says a midrange t4 and top of range t3 is optimal if on t4/t3,which im on right now,but then the rt3 page says I would need to go down on my t4 dose and up my t3 dose yet I wouldn’t be optimal.
When rising RT3 dictates a lowering of T4 (since it’s converting to too much RT3) and making it up with extra T3, then it’s getting the free T3 optimal alone.
Hi,I just wanted to know if the optimal labs are also for people with adrenal fatigue or is it only for people with hypothyroidism?
It’s difficult to get optimal with a cortisol problem, as raising T3 in your meds to get the FT3 optimal will result in hyper-like symptoms due to T3 going higher in the blood and not making it to the cells. So you have to correctly treat the saliva cortisol revealed issue. Chapter 6 in the updated revision STTM book. https://laughinggrapepublishing.com/product/sttm/
A technical question: Shouldn’t morning cortisol be at the top of the green range and not yellow range which would indicate high values? In other words, isn’t it still too high on the latest test?
With or without a color, those without a cortisol problem have a first thing in the morning result at the literal tip top of the range.
I can really relate to these posts and my heart goes out to these people. Thank God for websites like this ! What is so extremely infuriating and disgusting is being cursed with a condition that robs you of ALL your energy, has you in and out of severe depression and anxiety among endless other possible symptoms and you finally get the money and force yourself out of bed to see a doctor FOR NOTHING ! They do seem to be really good at making it even worse. They also seem to be oblivious to even the proper diagnosis much less the treatment. I can just imagine how many people die just because doctors simply do not care.
Hi, I was very impressed by Dawn’s story but I am so WEAK and on such a low income, I doubt I could pull together the program she did (Vitamins .. I know I can’t take as much Magnesium as she did or I get you know what).
My main symptom is crushing (feels like dying) weakness. Pretty awful. I do have Chronic Fatigue and did have positive results on Epstein Barr and Chlamydia Pneumoniae.
Years ago I was on Armour but maybe not a large enough dose (60/day I think). I’ve heard that WP Thyroid is good as well.
Stress does not help of course. But I’m in a pretty all alone situation with no real support, so I do my best.
I’m feeling overwhelmed and wonder if there’s a good place to start. I got labs at the end of March 2016. TSH was elevated, Ferritin low as well.
HELP … Need a beginner program. Still looking for a good doctor who’ll accept Medicare (have checked your list and will call). Right now so exhausted and poor, can’t go to anyone. Also the Heat KNOCKS ME for a LOOP.
Denise, sorry you are struggling so. Yes, 60 mg is simply a starting dose from which we raise in search of our unique optimal dose. As far as your ferritin, we learned the hard way that we can’t just go by ferritin—you need the other three iron labs. Ferritin can be low from low iron, but it can also be low from high heavy metals which pushes iron up. We have to know which is causing the low ferritin by doing the other three labs. If the iron and % Sat is low, then we get on iron. It’s all explained here: https://stopthethyroidmadness.com/ferritin
Hello, I am desperate for an answer as I have done a ton to educate myself on these [thyroid and adrenal] problems, but feel so stuck. My TSH is high, free T4 quite low, reverse T3 ok, and free T3 on the high side. I did the 24-hour cortisol saliva test, and it turns out it’s elevated almost all throughout the day, which shocked me because I was totally convinced that I actually had low cortisol! I have no idea anymore what the treatment for all of that is at this point. My main issues (which are absolutely debilitating) are exhaustion and anxiety. I need to fix the adrenal issues, but how? I can’t take HC because of high cortisol, but it’s the only thing that people with adrenal fatigue get REAL energy from. I just can’t rely on some herbs that are supposed to lower cortisol because it’s not enough. I need ENERGY!!! What do you take when there’s such a paradox? Please help.
Janie, The morning anxiety has been happening for a while and getting worse. I’ve spent this morning with the horrible anxiety and crying too. My anxiety medication doesn’t even touch this. Please help.
Janie, I’ve been taking the PS to bring down my noon, afternoon and evening cortisol levels for the last three days. I need to increase it today to 400 mg afternoon and evening. Question, my morning cortisol is 6.2 (range 3.7-9.5)
So if I continue to increase the PS i.e. 400 mg and then 500 mg until I can sleep through the night, this protocol should bring up my morning cortisol levels? Or are these morning low cortisols bringing on all of this morning anxiety. It is absolutely aweful.
I’m still having a hard time sleeping and in the morning I’m so jumpy and anxious in my chest and then when that subsides, I’m so weepy. Yesterday, I cried for hours in despair. I’m so scared.
Hi Christine. I’m so sorry you are struggling so! Let me encourage u to use the patient groups, ok? They are listed here: ht5p://www.stopthethyroidmadness.com/patient-groups 🙂
Hello I’ve been diagnosed with estrogen dominance and adrenal fatigue. I have low cortisol in the morning and high cortisol in the night. What helps lower cortisol and which diet is best to follow?
Hi, I have low saliva cortisol levels for all four, but I do not want to use Hydrocortisone at this point. I want to use ACE first. How much and at what times should I take the ACE supplement? Thank you.
Study chapter 6 in the revised STTM book, Eddie. It applies to ACE as well, though we somewhat have to guess how much to use since we’ve really no idea how much cortisol is in each capsule or tablet of ACE. We just keep the strategy the same–highest in the morning, then lower and lower, and doing DATS to find the right amount. Just be prepared that ACE may not be strong enough when all four are low–patient experiences there. But never hurts to try. Teach this to your doc, as well.
Hi Janie, Thank you for replying. Do you think I can heal my adrenals with only ACE if all my four diurnal saliva samples determined very low cortisol or do you think it’s a waste of time ? Thanks.
PS: I know that meditation helps individuals with high cortisol levels. Would it benefit someone with very low cortisol levels?
All I can say, Eddie, is that we’ve observed that if all four are quite low, it usually takes HC. But it’s up to you and your doctor! And no, meditation has not been enough. Read Chapter 6, okay? Also, the last chapter in the STTM II book will help you understand why you are where you are today. It’s an EXCELLENT chapter.
Thanks again Janie.
I will order that STTM book. Thanks
Just found this page, had my thyroid removed in 2010, thyroid cancer, had the RAI treatment. I wish that I never did. For the last 3 years I have had tingling hands, feet and mouth. It is debilitating, a neuro told me that it was all in my head. I wake up in the morning with a white ring around my mouth. In times of stress this becomes very evident. I react badly to stress, get really bad heart palpitations. My endo wants to put me on antidepressants , I am not depressed, just feel frustrated, nobody seems to be taking me seriously. I live in South Africa, ant support groups here?
Can you recommend a doctor in the Western New York (Buffalo) area?
Andrea, see if this helps: https://stopthethyroidmadness.com/how-to-find-a-good-doc
Does anyone know of a good Dr. in the San Antonio area? I’m HYPOthyroid, had Grave’s and ended up having orbital radiation after two years of pred and on levothryoxicin (yes, I’m one of the few that is hypo/Grave’s). Fortunately, the Grave’s has not returned, as my dr. suggested it might. Thanks for any dr. or other recommendations you can provide.
Sharon, this might help: https://stopthethyroidmadness.com/how-to-find-a-good-doc
What is the treatment you used for Lyme?
I have Auto immune thyroid and I been using the Synthyroid from last 4 years. I want to switch to natural medicine. Do you know any doctors in Charlotte, NC. Please help me?
I have cold hands and cold feet unless the temperature in the room is 80 degrees or higher; and I wake up about every 2 hours during the night. Sometimes I go back to sleep quickly and sometimes I get tired of trying to go to sleep and get up and do research! Considering that the alarm goes off at 5AM, that sometimes gets pretty rough. Usually the next night I get a better nights’ sleep. I had thyroid panel blood work and showed on the low side of the T-3 range. I have taken (2) 300mg capsules of Thyro-Gold daily for the past 3 weeks and I see no improvement. I am not sure if I should increase the Thyro-Gold or persue the adrenal perspective. I ordered the first STTM book, but after reading the comments of others about the adrenals, I should probably have ordered the second STTM book. I take quiet a few supplements and eat according to the Phase One diet (Know the Cause). I take no medications. Any suggestions?
Juan Ray, we all have to experiment to find the right dose of NDT (which ThyroGold is). It also helps to see where your free T3 is. Read this page carefully: https://stopthethyroidmadness.com/natural-thyroid-101 in addition to Chapter 2 in the revised STTM book.
As far as adrenals, sounds like you really need to order and do a 24 hour adrenal saliva test to see exactly what is going on. One can be ordered from here: https://stopthethyroidmadness.com/recommended-labwork…then go to the bottom of the page to see the link to the page on how to read your results. Waking up often in the night can be either low or high cortisol. And if you have a cortisol problem, that can explain why you don’t feel well yet on NDT. This explains: https://stopthethyroidmadness.com/ndt-doesnt-work-for-me
Are you getting plenty of sun daily? what is your vitamin D level? What about your hormones? Have you had them checked? Have you tried eating a protein fat snack before bedtime? Like whole wheat crackers with turkey breast, nut butter or cheese. Make sure and avoid processed sugars, potatoes, white rice and white flour. Best regards.
I have had all of the symptoms of hypothyroidism for many years although my TSH t3 an t4 levels were within normal range., so none of my dotors treated me.
I am constantly cold, low body temp., dry skin, hair falling out in gobs,contipation, lethargic, waking up at night with difficulty falling back to sleep, hypoglycemic, etc. Until recently, my TSH started climbing where it is now almost 5.0 and my endocrinologist finally decided to start me on 50 micrograms of synthroid. I also have a high fasting serum cortisol level which was almost 29 in a range frm 1 to 19 in the morning. I started the synthroid and only took it one time because I immediately had negative symptoms… Shaky, feeling very hyper, anxious, urinating every half hour, just feeling out of body experiences. So I stopped taking the synthroid on my own decision and have called my doctor for a follow up appointment and asked her about Armour thyroid which she did not recommend for me to take. I also feel that I have some adrenal problems since I’ve been under extreme stress for many years. I do not believe this endocrinologist does saliva testing and I would like to see a doctor that does both serum and saliva testing. Am I on the right track or should I see another specialist? She didn’t even address my high cortisol level until I brought it to her attention! I also have autoimmune liver disease which could be contributing to t4 t3 conversion problems.
Jeanmarie, if I personally went to a doc who recommended I not take what gives me exactly what a healthy thyroid makes (which NDT does), I would fire that doc in a split second and find one who is MUCH better informed! Use this to find that better doc: https://stopthethyroidmadness.com/how-to-find-a-good-doc Because you have clear symptoms of hypothyroidism which in turn only contributes to adrenal stress.
And note that we as patients have learned that you canNOT go by serum cortisol. It’s measuring both bound and unbound cortisol, and what might be “high” looking in the blood can actually be LOW in your cells. We have seen that repeatedly. It’s the 24-hour saliva cortisol test you need, and if necessary, you can order your own here: https://stopthethyroidmadness.com/recommended-labwork Your symptoms of feeling hyper, anxious and urinating every half hour do point to having an adrenal problem now (plus low aldosterone, another adrenal hormone) but it’s still important to do the 24 hour adrenal saliva test to see exactly how you have a problem. Read https://stopthethyroidmadness.com/adrenal-wisdom
And do read each page I posted above. The only way we get well is becoming informed, because you will have to guide even a better doctor in some areas. I’d also strongly recommend the revised STTM book to help you get more informed, too.
Does anyone have this issue of HIGH cortisol rather than low? Before I tell my story I wanted to explain one thing abt cortisol saliva test (sorry if this is already explained but I didn’t see it if it was). But just wanted to make sure everyone is aware that your cortisol levels naturally should be highest in the morning (helps wakes us up) and taper off throughout the day to it’s lowest level at night (helps us sleep). I didn’t see that explained and I too felt that the lab results shown here seemed pretty normal to me. I have the opposite issue where my cortisol was too high all day long causing me to not sleep well among other probs. I had the saliva tests done (sample taken every 8 hrs in 24 hr period) – the doctor first showed me a chart graphing NORMAL results where you cld see it high in AM and taper down to end of day. Then she showed me a chart showing abnormal/high cortisol levels which also still tapered down but was higher than normal at each 8 hr interval. For MY results she said she actually had to hand draw my chart/graph because my #s were so far off the normal chart that she had to create a bigger graph to write in my levels – they were really high ALL DAY without hardly tapering off at all. I later had the tests for cushings and ended up being more confused because they said the results (keep in mind I don’t recall if these were the exact numbers), I recall the Dr. saying that results above 3.9 to be positive for Cushings, and she said mine was exactly 3.9 which confused everyone because it was right on the border.
So they later just put me on growth hormone cz they said that tested low. Been taking that for 3 yrs with no noticeable results tho so I kind of give up at this pt. So again – does anyone have this issue of HIGH cortisol rather than low?
Frustrated, it’s all here: https://stopthethyroidmadness.com/lab-values We were lucky to figure that out a decade ago. As far as high, see this: https://stopthethyroidmadness.com/ps The last chapter of the STTM II book also explains the high cortisol factor for thyroid patients…which eventually leads to low cortisol. The exception is if you have Cushings.
Wow! I’m sitting here a bit dumbfounded as your original labs (other than the dhea) look exactly like mine. I am in full blown peri with tanked hormones (maybe it’s adrenal fatigue contributing to the low sex hormones). I have horrible crashing fatigue which has literally snatched my life away. The ZRT labs didn’t really elude to low levels. My graph seems to follow the “normal” graph line, just a bit under, so I thought I was good. I have been trying everything else to heal myself, but I am seeing from your story that I am low, low, low, normal (maybe a tad high) just like you. I just started the adrenal cocktail yesterday and adrenal cortex last week from the suggestion of a well versed adrenal patient, but until I saw your labs, I now feel I am definitely on the right path. Thank you for posting your story. I’m bookmarking it to make sure I get to your levels on your last lab work. Xx
Dawn, those nursing night jobs are killing us. Your story is so similar to mine. You’re giving me hope. Thanks Kamila
I need help! I had my thyroid removed in 2001 due to my thyroid not working and nodules that were inconclusive as to cancer or not. There was no cancer but it left me with no choice but to be on thyroid hormones. It has been a roller coaster of changing my dosage and adding cytomel to the synthroid. I have not had my levels checked in a while now and have just not been feeling well. I am fatigued from the moment I get out of bed, lethargic all day, had some issues for a while with insomnia (on a new med for that), headaches and fuzzy eyes to name what comes to mind right now. I am tired of not feeling good and just doing enough each day to “Survive”! I am thinking that I am in need of something other than higher doses of the meds. Like Iodine, minerals or something but don’t know how to figure this out! I really don’t think most doctors even have a clue when it comes to Thyroid issues! I just watched a video on natural suppliment, Actalin, formulated from a Dr. Brownstein. Have you heard anything about it? HELP……If you can
Deanna, sorry to read what you are going through. Usually, when someone has the continued fatigue you are having, it means you either aren’t on enough, or you are here: https://stopthethyroidmadness.com/ndt-doesnt-work-for-me
Great story and worth me reviewing numerous times to help me along my own journey.
Hi dawn, thank you for posting your treatment its a great encouragement for me to keep on trying in getting better.
I have a question,
I did a saliva test but before i had received the results I got impatient and started taking adrenal cortex and for a few days had taken way too much than i should have ( about 6 pills one day then 5 the next, and then 4 and now im taking about 2 )
im perfectly fine taking 2 (6,5,4 was too much) although i dont see much difference in symptoms but is it still ok to go by my cortisol test? I’m worried i messed things up by overloading my adrenals by taking so much for a few days. my test show about the same as yours.
thanks again : )
Dawn, what dose did start out with on the Thorne Ace? My lab results are very similar to yours on the saliva test. I am also taking this, but I am confused as to how much I need to take.
I started at 1 capsule at each of my low times of day- So I started with one capsule around 7am, one cap at noon, and one cap at 4pm. I increased every 3-5 days by one capsule based on symptoms initially. I know that the dosing should be highest in the morning, a little less at noon, and about half of the morning dose in the evening. So for me, I ended up at 5 caps in the 7am, 4 caps at 11am (had to slide the time earlier to help the late mornings) And 3 caps at 4pm (again had to slide my times an hour earlier to get better levels) Once you feel you are close to optimal, or when you want to check your progress and see if you are on an adequate dose, you need to do the Daily Average Temps for 5 days. How much you will need depends on your personal body chemistry and how low your cortisol levels are! It is very individual. Some need just one capsule, some have taken up to 6 caps per dose. You can get help with this in the FTPO Adrenals group on Facebook. I do believe STTM has the links to these groups in the “talk to others” page in the site map.
Great story. I have an adrenal (and thyroid) problem too. I’ve tried so many things (supplements, diet, NDT), but nothing has really worked. I recently found out that I have blastocystis hominis. I tried both natural remedies and antibiotics, but the parasite is still there. I’m wondering if you have experience or special recommendations (even through other patients) to eradicate blasto. It seems this parasite produces toxic waste, creates inflammation which gets heavy on the adrenals. Despite all the efforts, my adrenals are not healing. And that’s not the only wrong thing at the moment. Thanks a lot.
HELP PLEASE!!!. I m at the point i m ready to take any medicatio,as my facial hair getting worse every day.I m 29 years old female. I have been having facial hair for the last 3/4 years, acne for good 8 years. Ultrasound showed i have many cysts in ovaries, i.d Polycistic Ovarian Disease or syndrome; ultrasound for thyroid showed it enlarged on one side.I used to have anemia, its better now. And i had H-pylori, still have some problems with my digestion. I have done many testst hat supposedly should show if i have problem with my thyroid, last one, asked my doctor to test thyroid antibodies, BUT all of them my doc says normal. I read the book though, saying that i may have low thyroid, thoigh my tests are normal. Anybody can advise anything please?? As I m turning into a hairy beast…
THANKS A LOT> SANINA.
I went through the same things and realized later when I knew more, that much of what happened didn’t need to. if you think something’s wrong yet they keep saying ‘normal’, you are likely right. I know I was. When my hair started to fall out badly and more started elsewhere my sex hormones and thyroid should have been properly tested -I’m not sure how a bulging thyroid would be ‘okay’, it’s doing that for a reason -often if the tsh is within range doctors refuse to test further -refer to the STTM book or website for the right tests and how to interpret them -in range does not mean optimal, sttm facebook groups can also help -tsh is kind of useless and kept me sick for too long, you need t3, t4 etc -also, test b12, ferritin, d3 and others recommended by sttm -like so many others, my symptoms were treated but not the cause and therefore got worse -I’m not saying you have a thyroid problem, but your issues are all too familiar -endocrine issues cause malabsorption/digestion issues and low stomach acid, and the symptoms can feel the same as too much acid, I also had h-pylori and ulcers that were not fun. We are often given proton pump inhibitors and acid reducers when we have low not high acid, anti-depressants, tranquilizers, sleeping pills -the stomach pills I took for years and the beta blockers I got for trembling/heart palpitations also deplete nutrients, we don’t absorb nutrients well as it is, and low nutrients complicates thyroid treatment. Many of us develop adrenal problems, saliva cortisol should be tested, not just blood cortisol. Many with thyroid issues do not convert t4 only meds like synthroid into the t3 we also need, natural dessicated thyroid has all the hormones in it but many doctors refuse to prescribe it, sometimes those on synthetic t4 find that the addition of some synthetic t3 like Cytomel makes a big difference. Many of us unfortunately have to move on to different doctors, and many times, it’s hard not to give up, but you’re not alone -I found the facebook groups helpful -a lot of good knowledge learned from experience
I was told by my MD to try Myo-Inositol for my PCOS/Metabolic resistance. I am taking 650mg twice per day (it is an over the counter supplement) If you google Myo-inositol and PCOS you will come across many helpful articles. It has helped me tremendously with my PCOS symptoms and worked really fast too! No more facial hair was a pleasantly welcomed side effect!
I was finally diagnosed with hypo and stage 3d adrenal fatigue over a year ago, given estrogen cream and progesterone caps, saliva cortisol was high-normal a.m. and almost nothing the rest of the day. Did b12, iron and d3 and a ton of other supplements, got worse. During an extreme crash recently, hair started falling out badly, I did another saliva cortisol and almost went to Emerg after seeing it -all 4x cortisol so high it was immeasurable, progesterone that was extremely low is now sky high, testosterone that was normal is now also sky high -hc cream helped and doctor had no idea why, said he’d never start me on ndt and hc at the same time, I got neither one and we’re testing nutrients and thyroid again (4 tests were hypo already). I have no idea what’s happened , got no response from the sttm adrenals group
I would love to know what doctor Dawn saw in what city. Went to doc who supposively knows about adrenals but didn’t recognize my low morning number. Tired of fighting to find a doc who can help. Not sure it was possible till I read Dawns story.
Can anyone please tell me who can treat with all this knowledge in Dallas/TX area?
Looking for docter
For Sowji ~ I was referred by friends to Dr. Bonny Olney, D.O. @ Bent Tree Women’s Wellness Center in Dallas, TX area a year or so ago. ( btwwc.com ) With her expertise & using sttm as a resource, I am feeling SO much better. Wishing you the best on your journey to better health!
I wish I new what was wrong with me. I can’t sleep to save my life. Trouble falling asleep and staying asleep, as well as full on insomnia a lot of the time. Every doctor I’ve been to says,” you’re the picture of health! Just take an ambien.”. I don’t want to take ambien! I had saliva testing done. It showed my testosterone was <10, free T3 was low (2.3), night cortisol was slightly elevated, DHEA was low/normal suggesting adrenal fatigue. TSH was normal. No hashimotos. I had my gall bladder removed at 11 yrs. ago, and ever since, I can't sleep. Also, had right ovary removed in 2012 due to large tumor (size of tennis ball). It was thought to be cancerous. I'm 43, 5'0, and weigh 101 lbs. Don't know what to do. I just want to sleep again.
Sounds like you may not be absorbing all the nutrients you need since you had surgery on your digestive system. I’d suggest getting a blood test for the obvious deficiencies such as Vitamin D, B12, Magnesium, etc. In the meantime, you could try taking a good multivitamin and see if you gain any improvement in sleep. I have had insomnia in the past and I added extra magnesium to my diet along with cutting out sugar and too many carbs and I sleep better. I hope you figure it out – don’t give up. Keep experimenting until you find something that works.
Karen R Hurd knows a lot about missing gall bladders and not sleeping. http://www.karenhurd.com/pages/healthtopics/specifichealthconcerns/ht-shc-gallbladderdisease.html
That is an encouraging story Dawn! I am 59 and have suffered low body temp all my life as have all my family members and my children. I have Lyme now and am trying for the first time to deal with very low adrenal all day ( checked with saliva tests) and hypo in healing the Lyme. My inflammation markers were very high too – my doctor LLMD has me doing a herbal protocol for Lyme but did not put me on any thyroid meds or cortisol (has me on phytisone). This is very frustrating for me because I am overweight and my eyebrows are gone on the ends and I have slowed down and gained lots of weight. My temps during the daytime can be as low as 96 so I think I am going to start self treating for adrenal and thyroid with cortef and Naturethroid as I have both. I have read that if your thyroid/ adrenals are low your recovery from Lyme is very hard but he wants to treat for Lyme to try to heal thyroid / adrenals. I think given my age and always having low body temp/ having trouble having children (low progesterone) all my life my thyroid/ adrenals will not heal on their own.
Cortisol morning .29 (range .27- 1.18)
Cortisol noon .28 (range .10- .41)
Cortisol 3-5 PM .12 (range .05- .27)
Cortisol 10PM -12AM .06 (.03- .14)
Thank you for your help
Pat, I am finding both yours and Dawn’s comments intriguing. I was diagnosed with Lyme (via a bullseye; never saw a tick…didn’t really “feel” any symptoms) on Dec 20, 2013. Was immediately put on anitbiotics, Cytomel (T3) in addition to an herbal and supplement protocol. After one month, I went to get blood tests and IGenex Lyme test. Tested very positive for Lyme. And, had hypothyroid along with all of the vitamin deficiencies that accompany that. At the time, I read and read and read about Lyme. I did not realize hypothyroid was also such a common thing with very similar symptoms to Lyme. I am now reading about hypothyroid. I see no reference to Lyme. I am still trying to figure out which came first, the Lyme or the hypothyroid. Did the Lyme cause my hypothyroid or, did the hypothyroid make me susceptible to Lyme. Any thoughts? Thanks, Wendy
One thing that I see in many of the comments are anxiety and heart palpatations. You may want to consider taking higher doses of Magnesium – transdermal thru the skin will be absorbed faster (Mg Chloride) and Epson Salts (MgSulfate). For oral use try ReMag (Dr Carolyn Dean) or MgCitrate version. You may also want to check your “gut” and what is going on there – bacteria good and bad, H. Pylori, parasites, fungus, etc. Also check the liver for function (not enzymes). Liver is where you convert T4 to T3. If not working correctly, conversion won’t happen as well as it should. Also, In the gut 20% of T3 is produced from T3 Sulfate, and T3 Acidic Acid. If gut not working 20% of T3 will not be produced. I learned yesterday that gut, liver and thyroid all have to work in sync together (also Hypothalimus and Pituitary Gland).
Susie and Claire, there is hope. Stop t4 only meds. Work on adrenals. Every symptom you have is low cotisol! Please don’t waste anymore time.
This was such a great, informative article! I had my adrenals checked with the 24 saliva test 2 years ago (while I was in the midst of a really bad Hashi attack, with my levels swinging wildly) and I think they might have been off, but my doctor never said anything about it to me and I forgot until recently. I looked back at the results last night and they were:
Cortisol morning 4.3 (range 3.7-9.5)
Cortisol Noon 1.9 (range 1.2-3.0)
Cortisol evening 1.8 (range 0.6-1.9)
Cortisol night 0.7 (range 0.4-1.0)
Cut to two years later, my thyroid is gone (hooray!) and my Frees are perfect, yet I still have lingering hypo symptoms and I’ve noticed lately bright lights kill my eyes, I jump at the slightest unexpected noise, I’m exhausted all day long yet I wake up every few hours at night, and now my heart is doing this weird, hard pounding thing (although my cardiologist says it’s structurally sound). I see my internist tomorrow and I’m bringing up adrenal fatigue for sure–I did the at home light test last night my pupils started fluttering within 5 seconds.
This is very interesting 🙂
Do you mind if i email you personally to discuss. this would be great! I’m l;lost in world of adrenals!
And currently reading the Stop the Thyroid Madness book and finding it immensely useful, seems my problems may be both thyroid and adrenal related
Just wanting to have a chat
hi there, I have significant adrenal fatigue and was bed/house bound for 13 weeks last sept with severe light sensitivity headaches and a temp of 35,4. I am no longer housebound due to taking vits supplements etc recommended by private docs and use HC cream 1.5 ml a day. have been on thyroxine for 10 years 75mcg and last sept added 5mcg too it. still have chronic infections though weight gain chronic fatigue syndrome and feel spaced out a lot with heavy periods and migraines. I have to rest 3/4 of the day just to get through the day.12 hours in bed at night and still wake exhausted. would thorne ACE help me? from saliva test I am low in cortisol all day apart from high in sample 3 14.8 (5 to 7) and normal in sample 4 1.06 (1 to 3). sample 1 below range 10 (12 to 22) sample 2 was 3.8 (7 to 9) this was when I crashed last sept though I don’t feel as bad now so these results have prob slightly improved. low DHEA too.
Hi Claire. Sorry to read about your continued struggles. What patients have learned is to treat based on a RECENT saliva cortisol i.e. you shouldn’t treat what’s more than 3 months old, or you could be treating the wrong thing since it can change. Here’s a page to help: https://stopthethyroidmadness.com/adrenal-wisdom And patients get off T4 and onto a small amount of NDT for the time being i.e. until they have the right amount of cortisol and iron to tolerate raises. Being on T4 is a main reason you are in this adrenal predicament in the first place.
That is awesome!! I would give anything to be able to heal whatever is wrong with my adrenals. We know something is wrong, but not exactly what yet. I’m hoping maybe someone here can answer a few questions based on your knowledge and experience. I’m a 30 year old female, btw. I was diagnosed with Hashi’s in Nov. of 2013 but am still being told my thyroid numbers are “in range” and it’s not time to treat yet (although they believe that time will come sooner rather than later given the high level of antibodies I have). Anyway, In February my body went crazy, and I have been mostly bed-bound since and on anxiety medication due to the severe anxiety/fear/dread that came along with all of the physical symptoms. I lost over twenty pounds without trying in the first three weeks. I’m a mess. Originally, they thought I had Cushing’s syndrome due to high cortisol levels (in blood tests)… but I am on birth control which apparently artificially raises total levels of cortisol. I cannot stop the bc for two weeks to prepare for any testing as I take it for endometriosis and missing even one pill causes unbearable pain, bleeding and clotting. Anyway, since they thought it was Cushing’s, I had a 24 hour free cortisol urine test… the endos expected the results to be high. Nope, I made 2 ng of cortisol in 24 hours. That can’t be good, but my endo wasn’t too concerned, although she now is going to do an ACTH stimulation test to rule out Addison’s. I don’t see how that will work if they’re measuring total levels of cortisol in my blood which is elevated by the birth control. She absolutely refused to order the diurnal saliva cortisol test or any other tests at all until we see how I respond to the ACTH stim… if I fail that test, then she said we will start testing more adrenal-related stuff to look for a cause. So basically, if I don’t have Addison’s, am I just going to be screwed as far as getting treatment from an endo? BTW, I’ve seen four different ones and, with medicaid, I highly doubt I will be allowed to see any more specialists. My primary care doc just prescribed Celexa before even hearing all of my symptoms and sent me to a cardiologist since I’ve been having so many palpitations. When my symptoms sent me to the ER, all they found was low sodium levels, which I was treated for there, and they didn’t further pursue the cause of any of my symptoms. I’m not comfortable treating myself for low cortisol levels based on just that one urine test. My parents agreed to pay for me to order the saliva tests from one of the labs recommended on here… but I’m wondering if the saliva test measures free cortisol or total cortisol? If it measures total cortisol, how can I get an accurate result while on the birth control? I’m just not sure what to do and SO scared and just devastated…. I’ve lost the ability to live my life. I can’t even deal with bright lights or loud noises, never mind real life. So would the saliva test work for me or should I not waste my parents’ money? I wish I could go back to just the fatigue and hair loss from the thyroid issue- I could deal with that…. this, this is just stealing my whole life. Thanks for reading and for any answers/thoughts.
Jennifer, I’m so sorry to read what you are going through. 🙁 Let me lay some things on the table. We, as informed thyroid patients, have found it absolutely ludicrous for a doctor to tell us not to treat our Hashis. What has happened to you is exactly why. There have been great things you could have been using to control the attack, like selenium and low dose naltrexone. Changing the way you eat such as removing gluten containing food would have been helping you immensely, as would anti-inflammatory supplements like turmeric and astaxanthin. You can still implement these things.
And frankly, if that doctor would have been mine, I would have fired him in a split second.
Yes, we order a 24 hour saliva test which measures cellular levels. We NEVER go by blood cortisol.
Start reading https://stopthethyroidmadness.com/hashimotos
Get the book http://www.laughinggrapepublishing.com
And if you need to hear this one on one https://stopthethyroidmadness.com/talk-to-others You should have NEVER gone through the hell you are going through and its time to make proactive changes.
Hi Janie! Thanks so much for replying to my long rambling post. It is truly appreciated. I am wondering if you are saying that letting my Hashi’s go untreated is likely what led to the adrenal issues I am having now? I have been doing A LOT of research on the adrenals and the thyroid, and I have been reading that it is very difficult to treat any kind of hypothyroidism if the adrenals aren’t under-functioning. I read that both need to be treated at the same time or that the adrenals need time to get back up to normal functioning levels before starting thyroid meds. It’s crazy- I’m diabetic (type 2) and stopped my diabetes meds after this nightmare started in February because I felt my blood sugar was getting too low (I know, but my body was just telling me to stop it- i felt better off of it). I stopped monitoring it as well as I should, but I finally started again- my blood sugar has been 100, 70, and 81 in the last three days- I had NEVER had a blood sugar below 120 in the three years since I was diagnosed with diabetes (and that was ON a high dose of medication). So I’m pretty sure between that and my urine free cortisol test that my cortisol levels are way too low. Is there one lab you prefer over others for the diurnal saliva cortisol test? I want to do that ASAP just to verify what I already know for my endo. I can’t believe I have to pay for it when she could have ordered it- she refused and said that it’s not sensitive enough to detect below normal levels of cortisol, only above normal levels and that the test is really only meant to diagnose Cushing’s. I can see right from Dawn’s story and her results that it clearly shows levels that are below normal. I guess I have to go through her ACTH stimulation test to rule out Addison’s (which, really, with my symptoms and low cortisol levels, I should be 100% sure that’s not what it is since I read it can sometimes come along with Hashi’s when your adrenals are also under an autoimmune attack), but if we do that, I’m hoping she’ll help with getting my adrenals back to normal if she can see for sure that levels are low.
And I am going to look into the supplements you mentioned to perhaps slow down the Hashi’s attack. It would be great to do that while I’m dealing with this adrenal issue, until my body is ready (and I have a doctor willing) to be treated for hypothyroidism. Unfortunately, low dose naltrexone is not an option for me as I take methadone (last thing I need at this point is to be in withdrawal on top of everything else), but I will look into the others and do some more reading from your links.
Again, thank you so much for the response!! It’s good to feel like people are listening and understand. 🙂
Oh, I’m sure you’ve heard a million stories of people being mishandled and misdiagnosed by doctors, but I thought I’d share mine with you because it’s just so ridiculous to me. My husband was diagnosed with hypothyroidism a few years ago (he was fatigued and achy, so his doc automatically checked his thyroid and found a TSH of 14- he’s done great on treatment, no side effects and now has pretty great levels), so I started researching it just so we’d be informed (he’s more of a “take the pill and don’t ask questions” kind of guy- lol). When I started reading the symptoms, I started wondering if I maybe had it as well. i asked my primary care doctor, so for about three years he ran the standard “thyroid panel” (tsh, t3 uptake, total t4, and t7) every six months or so, but he kept telling me i was fine even when my TSH finally eked out of range at like 4.9. Then I started having soreness and swelling in my neck, so they did an ultrasound- the results showed “an enlarged thyroid, consistent with thyroiditis.” I was told thyroiditis just meant that my thyroid was inflamed but that it was fine, they didn’t find anything bad in the ultrasound. Ok. Then I started seeing an endo for my diabetes and really started asking questions about my thyroid with her- brought the three years of bloodwork, the ultrasound report and shared all of my symptoms. She said my thyroid was normal and my symptoms were probably from diabetes!! So another year goes by and I go to see a dermatologist in Nov of 2013 for the crazy amount of hair loss I’d been having for years (I’ve lost at least 2/3 of my hair which was so thick and full before)…. they biopsied my scalp and did bloodwork. She tested a bunch of thyroid stuff including my TPO antibodies which were in the thousands. So, finally, I had a diagnosis after years of telling my docs there was something wrong with my thyroid. It took my dermatologist to diagnose me with Hashi’s. She also found some other issues that I didn’t know about (extremely low b12 and vitamin d). I wish SHE could be my primary care doc!! Seriously, my dermatologist is the best, most thorough doctor I have seen in years. I wish doctors would start realizing that, as patients and as women, we KNOW our bodies and we KNOW when something is wrong. I’ve had a lot of thyroid symptoms since I was a teenager, so who knows how long I’ve had Hashi’s and didn’t know about it?
My dermatologist was the one to finally catch my hashi’s, too, after years of other doctors missing it.
This is what I am going through right now. I have been everywhere. My adrenal blood test was abnormal and I was sent out of town and they said it was okay. Just like you the vitamin levels was low, I have horrible fatigue taking a shower wears me out. Just had ultrasound of neck said was normal yet my neck is swelling and sore. I have the shaking inside, trembling, sweating horribly, racing heart. I have about gave up hope. We can’t keep endrocinoloist where I live they come and stay and year or two and leave. My sedrate is elevated I have all this abnormal lab work but none of it goes together. My life was taken away 2.5 years ago. I have no life. I would give anything to find an answer.
Can someone help me understand the Cortisol test results? The final “Victory!” labs make sense, but the labs that are supposed to be indicating low, low, low and slightly high Cortisol have three out of four values that look like they’re right in the middle of the range where one would want them to be. How is 5.1 in a 3.7-9.5 range; 2.1. in a 1.2-3.0 range; and 1 in a 0.6-1.9 range considered low?
Scott, no, it’s about about “being in the middle of range”. The low, low, low is correct. Compare to this page: https://stopthethyroidmadness.com/lab-values
I was wondering the same thing!
I have Graves disease, this talks about hypothyroid- does it discuss anything regarding hyperthyroid and Graves?
Amy, google “Elaine Moore” with the word “Graves”
I was wondering if you or any of your bloggers have ever tried Dr. Brownstein’s Actalin for thyroid. I recently ordered a bottle but it hasn’t arrived yet. It appears to be a fairly new product that is only available online. I have researched everything I can find on it but was hoping to hear from someone who has actually used it for a period of time. Some of the ingredients you mention here for adrenals are in the formula, like iodine, manganese and zinc. Any feedback would be helpful.
Actalin, because of all the mass of ingredients, strikes me more as something for someone who is already healthy and just wants to support that health.
Lori Fisher commented in May 2014 and also mentioned awaiting arrival of Actalin. Wondering if Lori shared her experience with Actalin as I am contemplating ordering Actalin. Thank you for your assistance and time. My prayers are for your well health and good spirit.
I have been on Actalin for over a month now. I seem to feel better but have not retaken tests to see how they read. Need to do that soon. Unfortunately I can not take anything the Dr.’s have prescribed as they make me ache all over like a 90 year old woman. Took Armour Thyroid for few years but it suddenly wasn’t working any more. From what I have read, they have changed the recipe. Wish they would have left it alone. Am thinking of trying Research Verified’s version of thyroid. Took their Green Coffee Bean Extract capsules along with Garcinia and lowered cholesterol 40 points in just a month and a half. Best to buy six bottles at a time as it cuts cost almost in half and free shipping (I think).
NIce to know what money can do. I have no way to buy any of these things. But Im glad ppl can get well if they have not just the knowledge, but the money. Endocrine disease has to be the worst thing in life. It affects just EVERYthing.
I can totally empathize with you. Its hard to get help for anything when you’re broke. Sending a prayer of hope for you and for me that things will get better soon. Hang in there.
I, too, can totally empathize about the money. Additoinally, there are NO good endocrinologists in this area–at least ones that will bill insurance. Thus, leaving me once againn with the money dilemma. My Endo doesn’t believe in all this stuff; I’ve been on levothyroxine for over 7 years and was on liothyronine for a few years until I experienced a Hashi’s storm that began two months ago, and I”m still feeling the effects. Anyway, Lori and Hélène, I just want you to know you are not alone. I will add you both to my daily prayer list. Please pray for me, too. God bless.
These are not expensive treatments. Sea salt is about a dollar or two. Armour Thyroid is cheaper than Synthroid. She did this without a doctor.
The adrenal testing is $125, not generally covered by insurance and the ACE is $40+ a month. Its ridiculous that we can’t get the help we need from insurance companies.
I, like you too, can’t afford all of the books or the right kind of doctor. I live on social security disability and I have Medicare. The specialist kind of doctors usually require a downpayment that I cannot afford. I have been relying on my regular GP doctor, she does the best that she can, but I don’t think she knows what I really need. What did you do? Any advice? Thank you, Steph
Buy her a copy of this book! 😀
Wow, nothing short of a miracle. Congratulations!
Barbara E. Airel
Does anyone know of a good doctor in the Hudson County area, in Jersey City, NJ