Did you know that years of reported patient experiences, which the Stop the Thyroid Madness website and books are about, has gray areas and has NEVER represented…
…stern black and white rules.
…narrowly defined methods.
…beliefs over experiences.
Additionally, Stop the Thyroid Madness has…
…never been about making something up based on strong opinion of a group’s owners.
…never, ever been about negativity towards you the patient for daring to think outside the box. It’s that daring that resulted in the very solid information based on our experiences that has been compiled on STTM!
Instead, Stop the Thyroid Madness is a compiled site and books of information about “here’s what patients have reported repeatedly over the years which worked and why that got them well” which is ultimately for you to become your own best advocate as you work with your doctor.
Here are a variety of examples of those Gray Areas of Patient Experiences (with a few Givens) below:
Related to hypothyroidism:
SYMPTOMS of HYPOTHYROIDISM: It varies! For example, while most may see weight gain or difficulty losing, a small minority can’t gain weight at all. Or while many have energy issues, others are fine yet have rising cholesterol or rising blood pressure. On and on. See all possible reported symptoms here.
OPTIMAL AMOUNT OF NATURAL DESICCATED THYROID (NDT): it varies! Though it happens and is rare to be optimal below 2 grains..and maintain it…it can happen. Others (and more than the latter) start being optimal in the 2 grain area. And others are optimal in the 3 grain area. (Janie is at 3 1/2 grains, as just one example) Some are optimal in the 4 grain area and up. On and on. The given: in spite of the different amounts, optimal nearly always seems to put the free T3 towards the top part of the range (notice the word “part”–it’s never an exact number), and the free T4 around mid-range for the vast majority (and this occurs with optimal iron and optimal cortisol–you can’t get optimal without having problems if iron and cortisol aren’t optimal, too.
OPTIMAL AMOUNTS OF T3-only: For those on straight T3, and with the right amounts of iron and cortisol, patients report feeling their best, without any negative results, when their free T3 is at the top of the range, and some report even slightly over. That was huge information. But the gray area was always how much T3 meds achieved that complete removal of symptoms, and which didn’t backfire later due to being on too little. Some see it at 50 mcg; others at 60 mcg, or 70 mcg, or 80 mcg…and some have to get into the100’s of mcg of T3 to finally get rid of al their symptoms and maintain that.
T4-ONLY USE: A strong gray area we noticed: some who started on T4-only like Synthroid or Levo did much better; others never did well from the beginning. But one given that patients on T4 were admitting to–symptoms creep up the longer they force their bodies to live for conversion alone. T4 is not the active hormone: T3 is. And there are too many variable that will eventually inhibit the conversion of T4 to T3. And a healthy thyroid gives some direct T3.
Related to lab work
WHEN TO DO THYROID LAB WORK IF ON NDT or T3: No, it’s not about a specific set of hours. For several years now, we learned it’s about taking our meds one day as usual (which is often two times a day for NDT, and three for T3, but there are variations—those gray areas), then doing labs first thing the next morning. Why? After taking either NDT or T3, our free T3 levels are going to peak anywhere from 2-4 hours according to a variety of literature and observations…and then a slow fall for up to 12 hours–also in a variety of literature. We want to see what we are holding onto and doing it the next morning has worked well. The only exception to taking our NDT or T3 the day before labs is that we “may” want to bring an evening dose to the afternoon, just in case. Not set it stone, but we do lean that direction to move the evening dose to the afternoon the day before we do labs. Bottom line: it’s not about a rigid range of hours before doing labs the next morning.
THE TSH LAB TEST: Now it’s a given that using the TSH to diagnose by can leave millions with clear hypothyroidism undiagnosed. Why? It doesn’t rise at first when one is very hypo! Patients have seen that repeatedly over the years. And when an optimal amount of T3 and NDT, it’s a given that for a high percentage, it will be below the range…but the gray area of being below range is where below range it will end up for each individual. P.S. we found it’s never about dosing by the TSH anyway. It’s about the free T3 and free T4, plus removal of symptoms, a good heartrate and blood pressure, etc.
Related to adrenals
WHO GETS AN ADRENAL PROBLEM: The gray area is that not everyone gets a cortisol problem while being poorly treated on T4, or being underdosed on T3 or NDT. But subjective observation reveals that a LOT do. Here’s a few ways people find out…also check out Chapter 5 in the updated revised STTM book.
WHEN THE FIRST SALIVA SPIT IS DONE IN THE MORNING: No, it is NOT a specific time like “30 minutes after waking”. It has always been somewhere “right after waking up” in the morning. That could be literally after you wake up naturally for the day, or five minutes later, or ten minutes later, etc. Not specific but the given is soon after waking up for the day.
SUPPLEMENTS TO LOWER HIGH CORTISOL: No, it’s not taking a massive amount of known cortisol-lower supplements, like five of this along with five of that along with five of another. 15 pills?? No! What a great way to stress your liver. A high % of those trying to lower high cortisol report success doing it on just one particular supplement where the high is occurring. One example is Holy Basil, and as reported for many, just two capsules does the trick for a particular high, or three capsules does the trick. A much less percentage report needing four or so. Some report combining supplements, like one holy basil and one Relora, or two each…etc. It just varies and they all work if enough is taken, is appears Here’s a page about this and there’s even more in the revised STTM book
LENGTH OF TIME TO LOWER HIGH CORTISOL: Lowering high cortisol is typically NOT about taking supplements for months and months (Gray area: high ongoing stress like lyme, poorly managed autoimmune, infections, etc. may required extended treatment). High cortisol can often come down in a matter of a week to a few weeks. We also treat the cause while lowering it.
OPTIMAL AMOUNTS OF CORTISOL SUPPLEMENTATION: Gray areas! With HC (prescription hydrocortisone given via your doctor) and women, it appears the majority end up at 30 mg (after doing DATS aka Daily Average Temps as we learned from Dr. Rind). But some find their optimal amount at 27.5, for example, and perhaps a smaller bunch right at 25 mg. Some even end up 32.5…all the latter after doing those Daily Average Temps to find their correct physiologic amount. It’s not as common, we’ve noticed, for a woman to need 35 mg, but we figure it could happen. Note that for what appears to be many, if they are going up that high, it’s because they have inadequate aldosterone that needs discovery and treatment.
Related to iron
OPTIMAL AMOUNT OF IRON: Over the years, it appeared to female patients who reported back that optimal for their serum iron seemed to be “close to” 110 in those kind or ranges, or “around” 23-24 or so in those ranges which only to up to the upper 20’s. Note the qualifications with quotes–those gray areas. For example, with the first range, some were just fine at 107, or 106, or 105, and etc. Gray areas for iron.
Related to symptoms
HAVING HYPER-LIKE SYMPTOMS: this seemed to be an area that had different causes–those gray areas. For some, hyper-like symptoms were due to having low cortisol, causing a release of adrenaline. Some, though not all, felt them with high cortisol. Another cause of hyper-like symptoms: just being hypothyroid due to being undiagnosed, or being on T4, or being underdosed on NDT or T3, releasing excess adrenaline. And another gray area was how people experienced the high adrenaline. Some state anxiety feelings; some state palps; some state high heartrate; some state shakiness; some notice little. Please, if you ever had concerns about your heart, we hope you will work closely with your doctor.
Related to Hashimoto’s
HASHIMOTO’s: Here contains a little gray area…Namely, though the vast majority will have antibodies to prove they have Hashi’s (both the anti-TPO and the anti-thyroglobulin are needed, we have noted, NOT just one of them–a given), there’s this small body such as 5% who have none! The latter has to prove it via an Ultrasound!
HASHIMOTO’S AND IODINE: though some overreact to the detox from iodine and see their antibodies go up, another body has stated that it was iodine alone that brought their antibodies down! Gray areas! The bottom line: many have to prepare for the detox better–see this. And some have to go low and slow. Read iodine information from experts like Dr. David Brownstein, Dr. Guy E. Abraham, Dr. Jorge D. Flechas..
HASHIMOTO’s AND GLUTEN: Yes, though it has always appeared that the vast majority need to be off gluten, as it makes the antibodies worse as well as inflammation, there have always been a small minority who had no negative issues whatsoever with gluten and haven’t for a long while. Gray areas! As always, there are strong opinions, but it doesn’t take away the facts that some do fine. But everyone should decide for themselves.
Related to Lyme disease
LYME DISEASE: One given is that for all too many with “active” Lyme, patients noticed their RT3 went up and up from either T4-only or the T4 in NDT. That only makes one more hypothyroid since RT3 is an inactive hormone. So many have stated they lowered their NDT or T4 to a small amount and made it up with the majority being T3. Some are on T3 alone. And the gray area?? A small body of Lyme patients on T3 seemed to report needing that free T3 slightly above range, even if others state they were doing okay with it slightly below but “towards the top”.
The above is just a partial list of the gray areas in patient experiences. It’s not all black and white, rigid, or rule-bound as it can often be reported in some groups. Hope that helps! Use STTM to work better with your doctors!
- A list of pages on Stop the Thyroid Madness is here–to help you counter potentially bad information. If you already have the STTM books, the same will help.
- Why T4-only has caused millions of people problems, sooner or later. It’s up to you.
- How patients learned to read their labwork.
- WANT TO RECEIVE NOTIFICATIONS VIA EMAIL ABOUT STTM’S BLOG POSTS? Just sign up on the lower right of any page on Stop the Thyroid Madness!
NEED A GOOD FACEBOOK GROUP TO DISCUSS ADRENAL AND/OR THYROID ISSUES? Here’s a privately run group that is positive on both the public side and the private side, has great integrity, and has an easy going attitude that a lot of people sure do seem to like: https://www.facebook.com/groups/AdrenalFatigueandThyroidCare/ NOTE: this is a large group, so be patient with being approved, and patient with getting your question asked. It’s worth it, as unlike other groups, they stick to solid patient experiences and don’t make things up.
Another is the non-Facebook, Yahoo Natural Thyroid Hormones groups i.e. this one: https://groups.yahoo.com/neo/groups/NaturalThyroidHormones/info or this one for Europeans only: https://groups.yahoo.com/neo/groups/NTHeurope/info
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102 Responses to “The Gray Areas of Reported Patient Experiences”
Quick question for you… I have thyroid issues as well but I am trying to help my mom with her results. She is on t4 and t3 after total thyroidectomy. My quick question is if your RT3 and FT3 are good do you need to worry about a lower FT4? Her iron levels have been optimal and actually her vit d is a little out of range high right now due to taking 5000 a day. I know the RT3 is supposed to stay only a few above the bottom number so that looked good to me but her FT4 is low. Thank you in advance!!!
TSH .09 (.3-4.2) FT3 4.3 (2.8-4.4) FT4 .8 (.9-1.7) RT3 12 (10-24)
Your information has been extremely helpful trying to navigate all of what is new to my world. I was recently diagnosed with Hypothyroidism in September 2018. This month I was diagnosed with Hashimoto’s and PCOS. I feel like I am having an issue with my current Endocrinologist not listening to my concerns. I am in the process of trying to get a new referral for a 2nd opinion but I was told I may not get one – that’s apparently up to my GP and not me. I have some underlying issues not being addressed by my Endo that I don’t understand why she is not more helpful. I have chronic joint pain. I barely sleep – hard to fall asleep and stay a sleep – 4AM is my nemesis. Fatigue all the time. Major anxiety. Heart palpitations. And gut issues. I recently had to insist a glucose test to rule it out, since I have never been checked and my father is per-diabetic. She made me feel like I was asking too much. She has only tested my cortisol once. I asked if it needed to be checked again – PM instead of AM. She said no. She doesn’t want to check my T3. She doesn’t address my fatigue, joint pain or gut issues. For those she is referring me to a Rheumatologist. I already saw one 2 years ago and they didn’t do anything for me because my ANA is borderline and I don’t have an inflammatory marker. I don’t know what I’m missing here. Should I even see a Rheumatologist? Am I asking too much? I feel belittled and I don’t know if someone else has had issues like this. It’s extremely frustrating after 5 years to finally be diagnosed but still not have all the answers and to still feel sick. Am I right for asking for a 2nd opinion?
No, it’s up to YOU if you want to see another doctor, not as a referral, but as you choosing to see another one. 🙂 YOU are your own best advocate. And not necessarily a rheumatologist, but a functional med doctor. But no matter what, you have to become informed, which STTM will help you do.
Yes, it’s common to feel belittled, misunderstood, talked down to like we couldn’t possibly have any wisdom…by some doctors, sadly, and most especially by most Endo’s. That is the main reason Stop the Thyroid Madness exists.
As far as adrenals, it’s not about blood testing at all. It’s about saliva and doctors are very behind about this. Check out this page and you’ll also see a link to order your own saliva test: https://stopthethyroidmadness.com/saliva-cortisol Then with ANY lab results, compare to this page: https://stopthethyroidmadness.com/lab-values
With Hashi’s, there are key changes you are going to need to do. First, the majority do MUCH better being off gluten. It simply pushes antibodies up in 9 out of 10 Hashi’s patients. Some feel they have bad gut reactions to sugar, or eggs, or dairy, or soy, etc. If you do, time to get off those that you do have reactions to. Next, treat the inflammation that the attack causes. Lowering antibodies is one way…..some are using selenium 200-400 mcg to lower anti-TPO. Others are using LDN to do it. https://stopthethyroidmadness.com/ldn
As far as thyroid meds, natural desiccated thyroid is the way to go. https://stopthethyroidmadness.com/natural-thyroid-101 BUT…in the presence of inflammation, the latter will cause your RT3 (reverse T3) to go up as you raise. In that case, patients stay low, such as one grain, then add in two doses of T3-only and raise. So NDT, then four hours later T3, then four hours later T3. Also, you will have problems raising NDT in the presence of a cortisol problem…until you treat the latter. So the same goes with low NDT, adding in T3. https://stopthethyroidmadness.com/iron-and-cortisol
The latter is all a good start. And take the time to read the linked pages. It’s important.
Thanks for your great job, I bought and red both of your book. 🙂
I have a question about cortisol levels and I could not find the answer, could You help please? My saliva cortisol levels are low – low – very low – very low, but my blood cortisol level is almost always higher than the upper reference range. What could it mean? TIA
Hi Judit. You have found out firsthand why we learned not to go by blood! It’s crazy, huh? Blood is measuring both bound and unbound cortisol, and 80% or more is bound. So your blood highs represent the bound. Your saliva represent what’s actually getting to your cells of the free cortisol, which is not enough at all. Thus, we treat the saliva, not the blood.
Dear Janie, thanks for the answer. I just would like to understand, what could it mean, that although my body produce a hugh amount of cortisol (btw why?), only a few amount is available for my cells?
Hi Judit. The only way cortisol in our bodies can move around is by being connected to/bound to a specific protein. Picture the protein like a car and the cortisol sitting in the seat–the car carries it around. So, if your cortisol is starting a fall, the protein binding is going to go up and up in an attempt to carry whatever you have around even more. So by only measuring blood cortisol, that’s what you are going to see–all that bound cortisol. Whereas by measuring via saliva, which is mostly measuring your unbound cortisol, then you get an idea what is actually useable. And it won’t be much as you found out by doing saliva.
Additionally, to measure by blood is a one time test. We need to see what’s going on a four key times, which saliva testing also does. So that’s another reason saliva testing is crucial.
Hi Janie, thanks again for the answer. One – hopefuply- last question: what could I do in order my body to be able to use the hugh amount of bounded cortisol what I have?
We treat the low free cortisol results by giving our cells the cortisol it’s not getting (see chapter 6 in the revised STTM book, which also applies to adrenal cortex, aka ACE). Then we treat all the causes of our stressed adrenals, which includes our hypothyroidism. Once they are all treated, then we slowly wean off, which allows the adrenals to kick back in.
It’s not that we have a bundle of cortisol that is being bound. We have too little cortisol and which happens to be bound.
I’m looking for info on dosing NDT. I thought I had read in the STTM book (which I’ve misplaced ATM) that at times, say when you’re out in cold weather (let’s just say it snowed in northern MN this morning), or some other stressor that sometimes people take an additional 1/4 grain of their NDT. I tried searching the website but couldn’t come up with anything. Did I misread this in the book or can you do this. I thought the concept had to do with the fact that if you had a normal functioning thyroid it would give you additional t3 when you needed it.
Yes, you remember correctly. 🙂 And it’s more about people who have to be cold weather often, or even a cold house.
I just had a doctor tell me that NDT and synthetic T4 would negate each other. I have never heard of that and can’t find anything online regarding that claim. For 10 years I’ve been on a small does of T4 along side my NDT to help boost my FT4. Same doc wants to give me “bio-identical” aka synthetic T3/T4 even though I told her my body doesn’t do well on that alone. She also told me that Armour is “synthetically made.” duh. Thoughts about these claims? I’m so upset – just spent $385 on this doctor to, what I feel, lied to.
Connie, you honestly don’t need to add T4 to NDT, as NDT is 80% T4 anyway. We just raise the NDT until optimal, which puts the free T3 towards the top part and free T4 midrange. Both. No, Armour is not synthetically made. It’s the real deal. OINK.
Thanks for the reply!!
Hello there, my aldosterone was 7. According to Quest, this is mid range and Janie’s info says you can have an aldosterone issue if mid range or below but the thing is my cortisol is not low and I did the pupil test which seemed normal. I would like the to try the florinef to see if I feel better but I am scared. Does anyone know if florinef might help me with the dizzy and off balance? I am on 1.5 grains of NDT still not feeling good feeling hyper. I am supposed to by hypo or hashimoto’s. I am beginning to think it might be my low blood pressure. Is Florinef safe since it is a steroid? Is there anyone I can call about it? I am so desperate for help as I don’t seem to be getting better even on NDT and if I go to high I get hyper.
Melanie, did you do a 24 hour adrenal saliva test? What were the results with ranges? It’s not about blood cortisol.
I was on T4 for 15 years. a few years ago, developed lightheadedness is the AM’s and achy joints and anxiety issues. Went to Naturopath who tested for Hashi’s and T3 and switched me to NatureThroid. She started me on 2 grains and my heart raced after 4 days so I slowly decreased myself WAY below what I should have been taking (didn’t know about your site back then). Symptoms persisted..mainly this annoying lightheadedness/blurry vision. I don’t wake up with it, but it happens about an hour into my day and lasts until the afternoon…returning after my PM dose of NDT at times. When I recently upped my NDT, it went away for 5 or 6 days! Then it returned 🙁 I just upped my AM dose today and it is still there. I feel like this, along with massive hair loss, are the last symptoms that i desperately need to get rid of. As of today, i am on 1.25 grains of Naturethroid in the AM, .75 grains in the PM. I was on 88 mcg of levo a year and a half ago and my T3 and T4 were low normal. I did the DUTCH panel in Jan. of 2017..it showed in range cortisol upon waking and in the morning, BUT afternoon was above normal as well as night? I might need to get a new test as that is quite old, but my symptoms are the same as they were when I took that test…I go to sleep just fine most nights (but i often wak with racing heart at 3 AM and then again at 6AM when i am up for good). Don’t those results seem backwards? Any ideas on why i have this persistent blurry vision thing?
Hi Kristina. #2 on this page is probably your answer, especially the adrenal answer: https://stopthethyroidmadness.com/ndt-doesnt-work-for-me
Thank you! I will do the Saliva testing and the other 3 iron labs (i have only done Ferritin..it is 66), and see what they reveal. I will keep you posted. Hopefully one of these reveals the culprit. Thank you so much for such a quick response, and for the amount of time and love you have poured into this site. I would be lost and sick for the rest of my life without it!!
Great! And you are welcome. 🙂
“NDT can definitely up the metabolism. And in your case, it can increase the attack, which in turn might be pushing the dump of thyroid hormones into the cells, thus hyper, thus weight loss. That’s why we keep raising it to find our optimal dose, which for many, has stopped and reversed the attack. Are you feeling hypo not being on NDT? Can you control your antibodies with diet?”
Thanks a lot for your reply Janie, I am quoting it here because there’s no Reply button under your comment!
I took supplements while on NDT; my symptoms partially improved, and some benefits are still there even now that I’m off NDT. I think vit. D made a difference, because it was rock bottom and is now almost optimal, while all other labs are still not ok (low B12, ferritin and folate, TSH around 6, low FT3 and FT4). I also need to check if there’s a methylation issue.
Doctor told me to go on with supplements, and stop NDT because it was making me lose too much weight and my thyroid labs were still the same (FT3 even a bit worse); according to him, this means that my thyroid “has found its own balance even with non optimal labs, and doesn’t want to get medicated” (?). So, if I understand it correctly, you’re telling me that he messed up with dosing, and I was simply underdosed for too long? But I’ve been off it for almost 6 months and I haven’t gained my weight back… Can it be a consequence of wrong dosing after this long?
I am studying to learn how I can control my antibodies with diet, for ex. going gluten- and dairy-free; I will definitely try and let you know how it goes.
Thank you so much for your help, it means a lot!
Well, your thyroid labs were still the same because one grain is simply a starting dose, and we’re all meant to raise and raise again from it in search of our optimal dose. Study this page, ok? https://stopthethyroidmadness.com/natural-thyroid-101
By the way, it’s not about ferritin. It’s about serum iron that we need to work on and bring to optimal. This page can help you see where optimal is for iron, B12, etc: https://stopthethyroidmadness.com/lab-values
The destruction from the attack on your thyroid may have already done some of its job, explaining your low free’s and high TSH. You may need to treat that.
Thanks a lot again. Serum iron went from low to >100 after supplements, but ferritin stayed very low – that’s why I need to see if there’s a methylation issue. And I will check saliva cortisol, too.
About my weight loss, can it really be NDT-related even if I’ve been off it for 6 months now? Doc said no and that I should investigate the issue, but your comments and website are really insightful.
Thank you so much again, I am sharing your advice with friends who need it 🙂
Yes, getting iron up while ferritin stays low is definitely a clue that you might have a methylation issue. Good for you for understanding that.
For anyone else reading this, here’s what we are talking about: https://stopthethyroidmadness.com/mthfr
Is it possible to get optimal on just armour or do you usually add T3 with it? I was taking 120 mg of armour and my T3 was 3.2 so I went up another 30 mg so now I am on 150 mg of armour but I do worry that my FT4 will be to high if I have to go up on armour or would you just add t3 to it? Also I am trying to lose weight and if I can get my T3 at the top range and T4 midrange will that make me hyper or hypo ? I am really not sure what number midrange is for t4?
Yes, you can definitely get optimal on nothing but desiccated thyroid.
Melanie R Schrand
I did the hair sample test and it said my selenium was low but that selenium is found in low levels in the hair. So I am not sure if that means that i have low selenium but this was the test for heavy metals. Do you understand what they mean by that? My selenium was .26 and the range was .55-1.1 Please let me know if you have insight on this.
I would do a blood selenium test, including RBC, and see what you get.
Thanks Grace, but I already had heavy metal testing done including mercury and it was not that.
Hi there and thanks for your wonderful work 🙂 I had rock bottom ferritin and low iron, and after supplement my iron has rised to 124 but my ferritin is still rock bottom. My transferrin is 222 (range 180-382) after supplement (didn’t check it before).
My B12 is very low, it skyrocketed after injections, then went low again in a few months. Folates are very low. Do you think this points to mthfr? Thanks!
Yes, when iron goes up like that and ferritin is low, it usually means a methylation problem.
Yep I did the 24 hr saliva test, I definitely need to be on some. I also have the book and I started on the recommended dose but it wasn’t helping bring my temp up higher than 7.5 in the mornings. Eventually I figured out I was on too much cause I couldn’t sleep anymore and got terrible muscle cramps and acne. I know I will only be able to figure that out with trial and error since with my job I cannot take temps the correct way. I was just more curious if Thiroyd was something that was considered much weaker than others. I wanted to know in case I need to switch brands since I might not always be able to get Thiroyd. Never know if they will mess up a batch. According to that page my iron isn’t ideal but when I take supplements in the form of curry leaves I get muscle cramps.
Have any patients commented on the strength of the Thiroyd brand compared to the norm? I’m on 6 a day right now and still increasing as a 100 lb gal, just wondering if that’s high. My heart rate is usually 130 just standing around, Hydrocortisone isn’t helping bring it down. Iron is fine. If I go less than 6 though my symptoms return. Any thoughts?
Patients have always reported liking Thiroyd. No, nothing is too high for any individual (unless they literally go too high). You are simply looking for the amount that puts your free T3 in upper part of the range with a mid-range free T4.
Did you do a saliva test to see if you needed HC? If your saliva results are very low, then you need to study chapter 6 in the revised STTM book on how to use it correctly. When it’s not used correctly, adrenaline can go up causing that high heartrate. Even not being on HC when cortisol is low can cause a high heartrate. http://laughinggrapepublishing.com
When you say iron is fine, make sure you understand where “optimal” is: https://stopthethyroidmadness.com/lab-values It’s not just about falling anywhere in those ridiculous ranges.
I was started on NP Thyroid at 1/2 grain for 2 weeks and was supposed to go up every two weeks until I reach 2 grains. At 1/2 I was fine but adding in the next half gave me anxiety. I powered through for a week and then dropped back down. My iron is fine but I am stressed. I hate to add anything that tips me over into the panic side of stress. I dropped back down and then stopped altogether. After 20 years and no meds I fear I am not a candidate for thyroid. I was afraid to continue on 1/2 grain because I didn’t want to get more hypo. So I am back to trying to relax and hoping to feel better. I read so many happy endings but I can’t even seem to get started. Should I try the small amount again? I didn’t notice any difference but I know Broda Barnes used small amounts and said it usually took 2 months to see results.
Hi Gina. Your answer as to why you had that anxiety is here: https://stopthethyroidmadness.com/ndt-doesnt-work-for-me
Don’t assume your iron is fine, nor your adrenals. See https://stopthethyroidmadness.com/lab-values
Will be asking the doctor about it in 2 weeks. Meantime have ordered the saliva test. and the iron test. I understand (I think) why the Free T3 is still low. But why did the TSH and TPO go up?
And why would fasting glucose go up 20 points? HAve been T2 diabetic but had the number close to 100 for fasting again till now. Thank you!
TSH will go up when you are underdosing yourself, and you are underdosing yourself….plus going up WAY too slow, which makes things worse. And antibodies will go up for the same reason. Read the link I posted. It will help.
Glad I found this site! T2 diabetic. Ran across a Matt Cook site that told me about Dr. Broda Barnes, basal temp & pulse check for thyroid. Have been on metformin, then testosterone replacement. Getting off metformin replacing with 1000 mg a day of berberine with added zychrome and 100mg ceylon cinnamon. Am and daily blood glucose was coming down nicely. Started on Nature Throid under doctors care. Great doc, but started me on .25 grain, after several weeks put me on .5 grain. A month + later allowed me to try .75 grain. I think he took too long to build up the does and my fasting glucose is climbing into the 120’s – 130’s again. Increasing the Berberine to 1500-2000 mg to compensate for now – I hope. He is afraid of giving me too much, but I think I am getting too little. Showing some weight loss – about 10 lbs over 2 months and it stopped again. Feeling the low thyroid symptoms. Have 2 lab results. the first is before starting nature throid, second after 6 weeks on .5 grain. Am now taking .75 grain, .5 on wakeup and .25 empty stomach 30 mins+ before dinner.
T3, free 2.60 (range 2.18 – 3.98 pg/mL)
T4, free .91 (range .76 – 1.46 pg/mL)
TSH 2.520 (range .400 – 5.140 uIU/mL)
TPO High 12.9 (ref range – 0.0 to 9.0IU/mL)
ABS <.9 (ref range 0.0 to 4.0)
collected 3/21/18 – so was on .5 grain all that time waiting.
T3, free 3.02 (range 2.18 – 3.98 pg/mL)
T4, free .94 (range .76 – 1.46 pg/mL)
TSH 3.530 (range .400 – 5.140 uIU/mL)
TPO High 20.3 (ref range – 0.0 to 9.0IU/mL)
ABS <.9 (ref range 0.0 to 4.0)
he never ordered the RT3 test.
After this 2nd test the doc said I could raise to .75 grain Nature-Throid and did so. My fasting glucose is climbing as I said before. My basal temps are running 97.0-97.4 at wakeup with pulse 70-78. Mid day temp around noon is 97.4. Getting some symptoms of low cortisol. HAd high pulse – 100 BPM one time. BP around 130/85. But will have to get the battery of tests to know for sure.
On low fat diet, cooking veggies well, using pasture eggs (2) in am with a little fruit, and moderate protein during day. Two cups coffee a day with some honey and LF milk. Moderate exercise each day – walking about 2 miles.
The doc is hemming and hawing around interpreting about the tests. He is good at what he does, but is pushing the Dr. Gundry Plant Paradox diet. I want to get the thyroid thing straightened out before I get to changing too many things at once. Advice or input would be appreciated.
Am 70, 240 lbs, on losartan 25, replacement Testosterone, and Anastrozole for aromatase inhibitor.
Bought the book Stop the Thyroid Madness – just got it and am reading it.
Thanks! – Wayne
Definitely become informed, because your doctor clearly doesn’t understand how to use NDT. You’ll have to inform him. This page also: https://stopthethyroidmadness.com/natural-thyroid-101 More in the book you got, too.
Am recovering from Base of Tongue Cancer from 8/18 thru 12/18. Not sure what triggered the HPV virus, but had a sore throat for many months. MAkes me wonder if I was allergic to the thyroid meds? Anyway, after 7 weeks of chemo and proton radiation am getting back on my feet. MAyo Clinic said I would be hypo thyroid and AM, have had 2 dose changes from 75 mg of levothroxin, to 88mg, now 100 mg.
Have to run better abs but my latest thyroid labs (forgot to run rt3)
Iron is an essential nutrient to maintain life. It is needed in small quantities to help form normal red blood cells (RBCs) and is a critical part of hemoglobin, the protein in RBCs that binds oxygen … See more
IRON BINDING CAPACITY
Have other results from cardiac related test run – will have to run specific thyroid stuff if needed here.
Am taking 200mg a day of D3, 500 mg day of magnesium, 2000 units of B12, 200mg of Zinc
You are on the worst thyroid medication ever created to be on by itself. Check this out: https://stopthethyroidmadness.com/t4-only-meds-dont-work
And your iron is too low if you are a man: https://stopthethyroidmadness.com/lab-values
I appreciate the input. Hands are tied ATM, as Mayo insists that TSH is THE ‘way to go’ – have been here before and appreciate the input. HATE just T4. Will go for the iron reccs. I still have a lot of problems swallowing. Nuts are out, rough ground sausgae and meats, the saem. Do well with med rare sirloin and better quality steaks. Am doign protein shakes with whey, kefir, spirulina, barley grass, blueberries (medical medium stuff), coconut water and some other stuff. Ramen goes down well, but also have Type 2 diabetes am still on 500 mg Metformin, 25 mg Losartan fo B/P. Lost a huge amount of weight.
Thanks for the advice – will do what I can.
So happy to see people commenting that you’ve changed their lives, Janie! I also am thrilled to see the Holy Basil idea for high cortisol (Relora and Seriphos did nothing). I have managed to finally begin to slowly add T3 back to the T4 and things were going great. I don’t tolerate most medicines and this T4/T3 combo works. But a few weeks into the T3, I began getting severe, and I do mean severe, low blood sugar about 3 hours after each dose (not diet related), which can last all day. Looking around on the web, I see this is not uncommon! For decades I used to be on T3 (before I got hyper from it in more recent years), with no blood sugar issues. Do you know of this, or what to do about it? No family history of diabetes, but I’ve had occasional blood sugar issues (not diet related; often from pollens for example, even when on very low carb). This new problem is utterly disabling and rather terrifying. Don’t want to go off the T3 as it has helped the depression a LOT (though no weight loss yet, darn. Maybe related to this whole blood sugar thing?). It’s pretty much impossible to function past the morning hours most days (3 hours after the first dose) for the rest of the day and evening.. 🙁
Thank you in advance, very much! I did try to search the site but could not find anything, so am VERY grateful for your thoughts here.
P.S. Am unable to sleep at night pretty much, so cortisol is a big issue…not sure if it could be related to this.
It sounds like you have an adrenal problem. Cortisol is related to blood sugar. Might want to order and do a 24 hour adrenal saliva test: https://sttm.mymedlab.com/sttm-profiles/zrt-saliva-adrenal-4-sample–2 Then compare the results to this page, NOT to what they say: https://stopthethyroidmadness.com/lab-values
Thank you. That is so confirming!! I thought this was cortisol related. A pal has been scaring me a bit with thoughts that it’s pre-diabetes~also from what I saw online, I wondered. However I was feeling that somehow the cortisol relates strongly to all of this, but had no validation. I did the test last year via your lab; will revisit and look at that page. I also bought holy basil last night and began it, per your recommendations on the site. Many, many thanks!
Janie, I hope you can help me, as I don’t know where else to turn. I am 78, have been on various thyroid medications for over 30 years, T3 only (4 x 20 mcg) for about 15 years (because nothing else worked) and cortisol (30 mg a day) for adrenal fatigue about 10 years. I have had severe stress for several years, as my husband was very ill — several major operations; several periods of intensive care; endocrinologists who took away his T3 because THEY DID NOT BELIEVE IN IT, inducing myxoedema crisis and danger of death; and eventually a nursing home where he died after a few months. So after all that I developed strange symptoms of great FATIGUE, which comes and goes, and A LOT OF OTHER SYMPTOMS, which were at first thought to be reactive hypoglycemia. But the cause of reactive hypoglycemia is a blood sugar problem caused by eating sugars and carbohydrates. I have been on a low-carbohydrate diet for 15 years, so my diet was NOT the cause. The Wikipedia article on “Reactive Hypoglycemia” has a final paragraph in which it describes my situation, it is “idiopathic adrenergic post-prandial syndrome”. Every time I eat, the adrenals (somehow) cause an insulin increase, which is followed by a “crash”. Wikipedia says that those with this condition are in “distress”. That would be me.
I had never heard of this condition. My doctor is sceptical, and has no suggestions. Recently I did an experiment in which I doubled my dose of cortisol for three days, and observed a great improvement.
There used to be an adrenals help group, but I can’t find it. Janie, have you any suggestions for me?
Hi Valerie. There’s a good adrenals group mentioned on this page: https://stopthethyroidmadness.com/talk-to-others i.e. Adrenal Fatigue and Thyroid Care
Hi there Ann. It’s about “where” they fall in those ranges, explained here: https://stopthethyroidmadness.com/lab-values. Yes, NDT is the answer, but you’ve got to have the right amount of iron and cortisol. RT3 going up means you’ve got a problem in one or both. Could also be the result of inflammation.
Sorry about not including ranges (this is all new to me and I desperately want to make this work) Rt3 is 16 with a range of 8-25ng/dl , free t4 is 1.3 with a range of 0.8 to 1.8 ng/dl, and free t3 is 3.3 with a range of 2.3-4.2 pg/ml. What I meant by iron and cortisol being ok was they were in your ranges. Thanks so much for your help.
Reverse t3 was 16, free t4 1.3, free t3 3.3. So should I go down until I get rid of these symptoms and then raise or just go ahead and raise? Thanks Ann My iron was originally low but we have gotten it back up and cortisol showed ok as well.
If RT3 is high (unsure about others as you didn’t include ranges), we drop NDT since 80% is T4, and add in T3 to make up for what is dropped, and correct the reasons: https://stopthethyroidmadness.com/reverse-T3 And hopefully you understand that iron and cortisol has nothing to do with being ok. They have to do with being optimal. Compare them to this page (and note it never about blood cortisol-it’s about saliva): https://stopthethyroidmadness.com/lab-values
I started on nature throid at 3/4 grain and raised every 2 weeks by a 1/4 grain until I reached 2 and had to stay there for 6 weeks until my doctor did testing. I knew symptoms were getting better with each raise but she wouldn’t let me raise 1/2 grain at a time. My problem is I have started having all my symptoms return and woke up recently with tremoring, anxious, and sweating. The doc told me to go down to 1.75 and I continue to have symptoms. How do I get rid of these symptoms and then raise again to an optimal dose? I suspect I was held a too low a dose for too long. Thanks. Ann
Here’s the deal…there’s a possibility those symptoms were simply from being underdosed so long. The only way to know is do your free T3 and free T4. If those are far from optimal, bingo-it means we need to keep raising. See the green graphic on this page: https://stopthethyroidmadness.com/natural-thyroid-101
Or, they can mean they are revealing either inadequate iron and/or a cortisol problem, thus the need to get those tested, too. https://stopthethyroidmadness.com/iron-and-cortisol
laurie g smith
I am 65. Newbie to this site. 11 Yrs ago did a Yeast cleanse via Dr. Jeff McCombs Undecenoic Acid protocols, very happy with results. seems a good idea to do again. But by day 5 or 6 in my (now finally) diagnosed Hashi, I become beyond workable fatigue. this is either Herxheimer Reaction ? OR Undecenoic Acid is Goitrogenic? 11 Yrs ago I coped. IF anyone here knows if undecenoic acid is goitrogen OR if the herxheimer reaction is goitrogenic itself possibly in its own way? (Seems like it)….? I am restarting and goin slower. IE. . .doing the diet and sweatbaths, but reducing doseage of the Undecenoic Acid….for now. but May have to try for a different Candida Approach. Want to hear from ppl who may have used Dr. Jeffs “Life Force” (this protocol) ….successfully? unsuccessfully.?…I hate to send the unused bottles back but am fearful I may be damaging myself with the stress of these clearly very effective pills….hence the slowing down….Anybody? Bueller?………Bueller?………Laurie
After reading both your books I am convinced I have to see a Dr. that will listen to me and take me seriously about my certainty that my thyroid symptoms and my Parkinsons symptoms are related. I have been on synthroid and cytomel for 17 years. 9 years ago I was diagnosed with Parkinson’s. However, after doing some research of my own (too man details to outline here) I am convinced that somehow both are connected. I am desperate to find a Dr. who will think outside the box, take me seriously, look at the data I have compiled about my symptoms and get to the bottom of this – but who?!?!?! I live in Colorado but will go anywhere to get help!
One way to find out is make sure you are “optimal” on that T3, meaning have a free T3 near the top part of the range, with a mid-range T4. https://stopthethyroidmadness.com/lab-values Once you are there, you could see what improvements you got that were blamed on the Parksinson’s.
You would also need to have the right amount of iron and cortisol to make it all work, by the way. https://stopthethyroidmadness.com/iron-and-cortisol
Are you aware that a vitamin a B12 deficiency needs to be ruled out in Parkinson’s-type symptoms because the two share the same type of symptoms? A friend of mine was diagnosed and treated for Parkinson’s for several years before he tried some B12 and found his symptoms disappeared. My wife and I found that the B12 blood test may not reflect a deficiency. See “Could It Be B12” by S. M. Pacholok, et al, page 57.
I have been diagnosed with Hashis and although I have been increasing my NDT , My T3 ,T4 results stay the same. One doctor in the recommended list did the heavy metal tests and found high lead. Can you point me in the right direction on how to work towards lowering it He suggested NAC but I’m uncertain what values are considered just above the range and what is too high
Sounds like you aren’t increasing enough?
I also had high lead with high copper, and decreased both just by doing the supps that I read help lower high copper, including zinc supplementation. Good info on the net if you google it, including that zinc also helps lower lead. 🙂
I don’t understand wording under your “Hashimoto’s” section: “both the anti-TPO and the anti-thyroglobulin are needed, we have noted, NOT just one of them—a given“, are you saying a person has to have both types of antibodies to be diagnosed with hashi’s, or are you saying both types need to be tested? Because i thought only one type of antibody needs to be elevated for the diagnosis? Thanks for all you do Janie!
No, the info is that one person can have just high TPO antibodies, while another can have just high anti-thyroglobulin. So if only one is done and it’s fine, the other could show Hashi’s that the first one is not!
After having total thyroidectomy I insisted on getting NDT and found a doctor willing to prescribe it. I wasn’t overweight prior to surgery but after 2 years I have lost so much weight I’m skin and bones. I have had every test, scan, scope and biopsy with no answers for weight loss. My doctor really wants me to try Tirosint. Have you ever heard of this happening?
Lori, it sounds frustrating to have lost so much weight. 🙁 But understand that Tirosent is simply another version of T4-only which as caused people numerous problems: https://stopthethyroidmadness.com/t4-only-meds-dont-work Hopefully you can find a different solution to the weight loss. Might want to also explore a viral or bacterial component explaining the weight loss, like Lyme, etc.
Thank you for the reply! My Doctor does want to add T3 but less of it. At this point everything has been ruled out but I really don’t want to change medications but I feel out of options. Have you heard of too much weight loss with NDT?
My own husband, who is skinny and has a naturally fast metabolism, did lose weight on NDT. But he eventually leveled out and it stopped. And he eats more now, too.
Myself. I have Hashi’s but I’m very slim, almost underweight since ages, with a very steady weight. Found a doc who prescribed NDT, starting with 1 grain/day. My weight dropped in a few weeks, which was definitely not good for me. For this reason, he then told me to take just half grain/day. After some more weeks, my thyroid labs hadn’t improved at all and my weight was still down, so he told me to just stop taking NDT and go on with supplements that I had found beneficial for my symptoms. Now I’ve been off NDT for months but I haven’t gained my weight back. I still tend to lose, actually, which is so frustrating. I suppose this doc didn’t dose the right way, but I wasn’t overmedicated. My weight was very stready and NDT caused it to drop unnecessarily – I haven’t changed my habits, so I cannot see any other reason for that. I really don’t know what I should do, as I have Hashi’s but I cannot afford to lose weight – I actually need to gain it back. Any suggestion would be much appreciated. Thanks!
NDT can definitely up the metabolism. And in your case, it can increase the attack, which in turn might be pushing the dump of thyroid hormones into the cells, thus hyper, thus weight loss. That’s why we keep raising it to find our optimal dose, which for many, has stopped and reversed the attack. Are you feeling hypo not being on NDT? Can you control your antibodies with diet?
In your comment section I said in ERROR that I have PostAblation Hypothyroidism but it is PostAblative Hyporthyroidism.
I apologize for my error. I read that this comes in the 5th or 6th year following the RAI (pill to destroy the thyroid) to 70% of those who have this.. I could not have the surgery to remove my thyroid which had become all tumor and no thyroid over the many years it was growing for it
was found to be very old. No one would check out my thyroid as they insisted nothing was wrong with my thyroid as their
test results were “normal”. All that I stated is my opinion and my experience. I only know what happened to me. I was
hyperthyroid and I quickly became hypothyroid after the RAI and had no knowledge that it could get worse from the
RAI. My body is having very severe issues with blood sugars that can not be controlled. That is why I came to this website and others searching or information, for something I might try that might help me. That one day an answer for all thyroid
issues will be met and we can be healthy again is my hope for all.
I am 75 and have had low potassium for years. The pills became a problem so I went to food. Found the best way to get lots of potassium was from Hunt’s tomato sauce which I mix with ice and water and drink, has over 1300 mg in it.
Beans/potatoes have many but have lots of carbs and as a Diabetic must limit them. Also V8 juice with no salt has around 1500 mg. ONLY Hunt’s products have so much valuable potassium. I take Magnesium from the spray oil on the body so the Vit D will be carried into the cells. I stay dehydrated and I do not go to the hospital for IV Potassium as I just drink these products, have to eat too many beans/potatoes and other items with huge carb count making my insulin needs higher and insulin causes weight gain. I am looking at the Keto Zone Carb diet by Dr. Don Colbert, found great info there about how the body sets its own carb limit and surprisingly low and that you will not lose weight if you consume more carbs than the KCL for your body. that carbs are not necessary for life/health, only fats and protein (fats Omega 3 6 9 and protein 9 Amino Acids).
Do research for yourself on everything. I now have the PostAblation Hypothyroidism having taken the RAI 6 yeats ago as they finally checked my thyroid when my PC doctor begged Endo to do so, found no longer thyroid, all tumor and very old. I am taking 120mg Armor Thyroid. This is a great website. My Endo is working on treating this.
Be your own best friend for no one will help you as you will help yourself. Do not believe all others, research for yourself. Since 1920’s when many school children had goiters as soil depleted of iodine the salt content changed just enough to stop this in children but not enough for us to have healthy thyroid. Drs told me avoid salt, I did but led to problems for one can not pass urine without some salt to hold it in the body. I use the pink Himalayan salt as it has all the minerals the body needs. I only use one small shake a day and I can pass urine with no problem. I would that all of you regain your health for nothing feels good like feeling good.
I have had unnecessay open heart surgery several years ago (moved to another state ten years later and new Cardio got my old records and called me in to tell me of this. The arteries replaced had disappeared soon after the surgery and I later learned this happens when they are not needed by the body. Thirty two years ago I had undiagnosed Familial Hyperlipidemia which caused my pancreas to begin bleeding and I fell into a coma, had severe necrotizing pancreatitis due to very high triglyercides. My body did not know when to stop making them and went to over 600 which the pancreas can not tolerate and began digesting itself with digestive enzymes. They did debridement (removing all the dead tissue and placing the pancreas back in my body.) I developed gangrene of the belly and ARDS of the lungs. Surgeons refused to trach me to protect my airway insisting I could not possibly live so did not matter while ENT said it must be done. I was parked in ICU and left to die @ age 44 intubated in ICU I lived and my total upper airway totally destroyed inc voice box. Said they wanted to avoid further “trauma” for me which resulted in 32 years now with many serious health issues and many autoimmune diseases.
Turned out I did live and it did matter, to me it mattered. My total upper airway destroyed along with my vocal cords and now breathe through a very tiny trach tube. Many lung infections for years that now are colonized in me due to having a trach tube and brought Pulmonary Fibrosis along with them.
I lived because people prayed for me. I believe prayer is powerful because HE answers prayer. I have learned to speak but it is due to prayer.
It is impossible for me to make sound and my dr asked one day how do you speak for it is impossible for you to do so. I know why, I wept one day praying and read in PS praise me with a loud voice and I prayed silently I must be able to praise you in a loud voice for IF I can not do so, I shall die.
I began to make sound before that day passed, something happened and I screamed and sound came out of my mouth. I know I live because HE allowed me to live. I am very thankful.
Thank you for reading if you do. You help many and it is so needed by so many as drs do not hear, they do not like your having more than one or two issues, they do not diagnose for then they would be responsible for doing something about it. Few drs will help. They are overwhelmed. We need those who will. All these things are just too much for many doctors to do. They need prayer.
Many try but proves to be too much for many of them. There are those who are making an effort and many like you who help much more than you perhaps realize. We who benefit thank you with a grateful heart.
Many in my family are affected by thyroid problems and many autoimmune issues. I believe many if not nearly all are as the soil was depleted of iodine in the 1920’s when nearly all or all school children developed goiters. Iodine was added to salt to correct these goiters but not enough to ensure a healthy thyroid.
You and others know about these things and hear us and some drs have heard us and accepting patients treating them with Thyroid, I take Armour Thyroid yet due to my now having the RAI nearly 6 years ago and now PostAblation Hypothyroidism I do not know waht will help me. This is new and I am searching to learn what I can do.
Thank you again and for this website and others I am truly grateful.I value kindness in others above all else. For some it is too costly to dispense kindness and I find there are many who are very kind and among them children I find are the most caring and honest of all. They have not learned to lie.
I pray that you all find relief for it feels so good to feel good. That is what I ask for everyone.
I suffered for over 12 years with Hashi’s and had 6 separate Dr’s tell me I needed a psychiatrist because asking for the tests that you suggest told them I was not living in reality and looking for some physical reason for my mental issues. 2 years ago I went a new Endocrinologist who had replaced mine and when she asked me how I was feeling and after actually listening to me she put me on Tirosint. As she told me it is from Switzerland, a pure form with no fillers and is usually only approved by insurance after every other med is tried. That was the case with me. I had been on natural replacements a few times.. She told me that she suspected I had a problem with malabsortion and if I did then I would feel better on this medication. Within a week I felt better and every 3 months the first year there was still a huge difference in how much better I felt. I then discussed all the information I had found like this STTM and she told me that she wishes more of her colleagues would listen to the problems of malabsortion and realize that hypo thyroid patients don’t need mental health help just the a pure form of the thyroid hormone. For the first time in 14 years my T3 and T4 are normal and I feel great. I really feel that she is correct. Of course I had problems with cortisol and all the others when my cells were just not able to absorb the thyroid hormone that I needed. That Dr’s name is Anca Stali of Lowell General, MA I know she would love to talk with you about this. Thank you for trying to help so many of us.
Thank you so very much Janie! My life is so much better because of you. You are an Angel.
I am so very glad your life is better.
Thank you so much, Janie! I’m wondering…can someone ever be hyper if their Free T3 and Free T4 are IN the ranges you said are optimal? Mine just tested out great (am on Armour and have been for yrs) but i sometimes have hyper symptoms. But then again, i’m suspected of having Lymes, i have bipolar, am going through perimenopause and being treated with natural progesterone so it could be any of those. Just SOMETIMES, i feel swings of hyper meaning feeling like i’ve had 20 cups of coffee and terrible weakness inside. (All BW is seemingly normal. sigh..) Thanks!
We as patients get the impression that those “hyper” symptoms are actually just “excess adrenaline” being released, not true hyper, because the body is alarmed about something going on. And there a lots of reasons for the body to be releasing excess adrenaline. For one, not really being optimal might set the body in a state of alarm. Optimal has always put the free T4 mid-range and the free T3 towards the top. Both. Being on Synthroid or Levo alone has done it to some. The rest is a guess–maybe the drop in estrogen or progesterone, active Lyme, detoxing.
I’ve always respected and appreciated everything you’ve done for me as as individual I’m 100% better than I use too be. Thankyou very much.
I am so glad, Sharon. Suffering as I did got 20 years just gave me the push to compile what is Stop the Thyroid Madness.
I am so uncomfortable everyday. After 14 doctors including 2 endocrine doctors looked at my labs and said there is nothing wrong with me. I am weak and shaky,(legs feel wobbly), yet my energy level is good, my equilibrium/balance is off balance and i get dizzy from food and supplements that I never did before and have developed pain throughout my whole muscular skeletal system. The Gi doctors said I have functional dyspepsia but I believe it is from the thyroid. I finally found a great clinician functional doctor who is an MD and a PHD and he has upped my NDT that I was on anyways. He also added in tirosent but my symptoms are still the same. He looked at my labs and said I have hashimoto’s, however I cannot gain weight, I don’t have a goiter and not constipated or diarrhea. My big symptoms are dizzy, off balance, gut issues(I have a clean organic diet and am gluten, sugar and dairy and soy free. He also ran a candida test and send I had candida which seems strange since I don’t eat sugar or high glycemic carbs. But I trust this doctor as he has treated thousands of patients with hashimoto’s. He has me on NDT, Tirosent, dhea, boswellia, b12, and of course I am on bio identical hormones. Diflucan for the candida which I am almost done with. I can’t get the iron down with my stomach. I want to try Zinc but it is hurting my stomach. I know the last time he checked my cortisol, he said it was ok. My Gi doctor says everyone has candida and that I did not need to be treated but my new doctor says the regular md’s don’t believe in it. Do you think I have Hashimoto’s? He also checked my autoimmune labs and those were fine. I notice he did not do labs on the reverse t3 but he did everything else. Do people with Hashimotos’s have my symptoms? The b12 bothers my stomach also but I am getting it down. When I take meds like antihistamines or something for my stomach I get dizzy so I cannot even take meds to feel better. I cannot advil for pain because of my stomach. I feel miserable every day and have had to take anxiety medication because when I get dizzy it seems to help. I am just wondering if my new doctor is right that I have hashi’s because I could not find my symptoms anywhere on this website. Please let me know your thoughts. Melanie Schrand
Melanie, we don’t normally add T4 to NDT because NDT is 80% T4 anyway. Is it possible you simply weren’t optimal on the NDT? This page has a green graphic which explain what optimal is according to years of patient experiences: https://stopthethyroidmadness.com/natural-thyroid-101
Also, with Hashimoto’s, most people will have an anti-TPO or anti-thyroglobulin above the range. https://stopthethyroidmadness.com/hashimotos
With cortisol, we don’t go by blood. We go by saliva: https://stopthethyroidmadness.com/saliva-testing Then we compare the results to this page: https://stopthethyroidmadness.com/lab-values
Ok, thanks Janie. What about my symptoms of off balance and weak and shaky? Is this typical of hashimoto’s? Can that be some of the symptoms?
It’s possible. But you need to read the links I posted and do the right labs.
I have already done the saliva tests for cortisol from your website and they were high but they are better now according to my functional medicine doctor(md also) with phd) but he is still treating me for that as well. I have read all your links as well. i still have all the bad symptoms(shakiness like tremors, off balance, dizziness, blurred vision, severe dry mouth and can’t sleep and just feel that I am staying the same. I am on 1/2 grain which is 32.5 mg 3 times per day plus tirosint of 50 mcg. I will speak with him about the tirosint on my next appt. Is my ndt too low? I already am feeling hyper with all these thyroid meds. Is that the tirosent? I am having a hard time finding an iron supplement that my stomach can tolerate as I have gi issues going on not sure why as my diet has been clean for years. I am almost sure it was the prednisone they gave me for tendonitis that caused the stomach issues and the hashimoto’s but I am not sure. Do I have an iron problem? total iron is 119 and the lab range is 45 to 160 mcg/dl. My iron binding capacity is 371 and the lab range says 250-450 mcg/dl. My % saturation is 32 and the lab range says 11-50% and my ferritin is 46 and the lab range is 20-288. I need to get better quickly so I can get back to work. It almost seems like my symptoms might be getting worse as I go up on the thyroid medicine but I am also on Paxil and xanax which I am trying to wean off as we speak. My dry mouth is severe. Can’t eat anything with sugar also as it makes me dizzy. Had all the glucose and diabetes tests and they are normal. My labs show hashimotos but my symptoms don’t and they don’t make sense. I pray everyday and I am so scared. My doctor said it was going to be trial and error and that it will be a process as it did not happen overnight. Please let me know about my iron and ferritin levels.. Thanks for your help……….Melanie
Hi Melanie. This is the page you use to understand your lab results: https://stopthethyroidmadness.com/lab-values
My tibc is 371 and your page says low 300’s. Is 371 considered optimal or too high? Melanie
Hello again Janie,
My ferritin is 46. Your link says 70 to 80. Is my ferritin too low or is it acceptable. How do you raise ferritin. Is it just by taking iron?
Your goal is to make the serum iron optimal, not concentrate on the Ferritin. But, if your serum iron is already 119, which is a bit high, along with the high TIBC and low ferritin, this is your issue: https://stopthethyroidmadness.com/mthfr
PLEASE Melanie, if the regular over the counter vitamins bother your stomach, try MegaFood – they are whole food supplements that can easily be taken on an empty stomach without issues. The quantities of nutrients is much lower than the OTC stuff, but many studies have been done and their absorption is over 90% compared to OTC at 3 to 12%. I’ve had issues with fungal infections in my ear and found articles about using grapefruit seed extract – only 6 to 10 drops per day straight or in juice and seems to be clearing up ear issues after a week. Good luck!!
Mega Food has been my only supplement for years and just found (and purchased on Amazon) the grapefruit seed extract. I recommend both highly!!
Thanks for your reply. I am not as well as I want to but I am hoping to get better soon. Now I am getting pins and needles in my arms and hands and I am not diabetic. According to my blood tests my glucose is normal and I have done glucose testing but for some reason when I have natural sugars or orange juice I get dizzy and lightheaded. I tried to take a vitamin d supplement and got dizzy. I feel weak and shaky all the time and my handwriting is starting to get shaky. I have such pain throughout my whole body.
I have ordered megafoods zinc supplement but it still bothered my stomach. I seem to have a problem digesting fats also but my pancreas is fine. I found a histamine degrading probiotic by seekinghealth.com that seems to be helping my stomach so I will try the megafoods again. What seems to work for other people is hard for me as i am getting severe dry mouth from all the supplements and most of the supplements for sublinqual b12 have mannitol, sorbitol, xylitol and that is making me dizzy and hurting my stomach. I found a vegan methyl b12 but it still bothers my stomach. I am hoping that after this probiotic maybe I can get it down. I started on Ancestral supplements and I can get those down. The beef liver is loaded with b12 and iron so that is good I guess. These are all glandular supplements from New Zealand cows and I think it is helping. Have you had any of my symptoms? Do you think these are typical of hashimoto’s? Any info is certainly appreciated. I feel very desperate and down right now……….Melanie
Ok, I read the link but do I still need to be on an iron supplement if it is high or I don’t need to be on it?
Don’t need to be on it. Just need to focus on treating the cause, which may be an MTHFR active mutation.
Ok i am on methyl b12 and folate. Is there anything else that treats it?
23 and me does not do the mthfr test. What other website can you direct me to?
Melanie, they do.
I called them and she said they do not do that test. Please advise…………
Melanie, they do offer it within the main 23andme genetic testing. They don’t offer the MTHFR results alone.
Would you mind if I called you? I am overwhelmed wtih all the info and cannot process everything because I am having so many symptoms right now. I feel awful and I just want my life back. I was always healthy. I just need to speak to someone about this hashimoto’s. My doctor also said he put on tirosent with ndt because it is very common for patients not to absorb the t4 from ndt. I would really like to speak with you for a few minutes if you have the time. Please let me know. Melanie
Hi there Melanie. Here’s how I do calls: https://stopthethyroidmadness.com/coaching-call I’m sorry it’s not “free” but I have to make a living like anyone. I know you’ll understand that. 🙂
Ok, Janie. I will speak to my husband and figure out a time for the call and get back to you.
thank you for the coaching call, however I am still unclear if I need to supplement with iron. I also cannot find the MTHFR on facebook that you spoke about. Please send me the link. What test do I need to do to see if I need to supplement with iron, is that the rt3 one? I have had all the other tests done. My doctor would not order it because he felt it was not necessary. I will try and find a lab online that will order it. I could not write fast enough yesterday and my concentration is not the greatest right now. Also, I am currently on the phone for a second time with 23 and me and they do not have the mthfr test. Please advise if there is another website to go for this test. Sorry for the questions. Please advise asap…………Melanie
To Melanie Schrand: Do the 23andme test and then go to OTHER WEBSITES that will interpret your DNA results and give you feedback if you have MTHFR anomalies or COMT, VDR, hemochromatosis mutations, etc. Those sites include Genetic Genie, Nutrahacker, Sterling’s, Dr Amy Yasko, and others. You might not do well on B12 methylcobalamin and might need a different form of B12 (there are at least 4 types available for sale.) You may also have a heavy-metals toxicity problem — all your symptoms sound like those caused by mercury, for example — and you might need to research a SAFE, LOW & SLOW, non-Intravenous chelation protocol such as that promoted by the Andy Cutler Chelation groups — you can look that info up and join a group on Yahoo or Facebook. People with multiple chemical & food sensitivities may have problems with how the liver processes for detoxification, and you may have low bile production. Just be safe with whatever protocol you decide to follow and good luck with working on your thyroid, adrenal, liver, and whole body healing.
Here you go: https://stopthethyroidmadness.com/mthfrin case you never found it.