I am new here and went thru many posts to find answers but I could not so I would appreciate any help someone can give me. I have had Hashimotos for 25 years, was taking 125 mcg of levothyroxine but my TSH was always below normal. My doctor played around with lowering my dosage to 88 mcg until I felt TERRIBLE and just said he could not figure out why and added in 5 mcg of t3. Both my free t4 and total t3 ( i know, not the best test like free t3 but he refused to test that). That was 5 years ago and I have never felt great. I started feeling really horrible a few months ago and got tested last month - tsh .05 (ref .40-4.50) free t4 1.1 (ref .058-1.8) total t3 73 LOW (ref 76-181). I also have osteopenia ( I am 57 yr old female) so my doctor is concerned about adding more T3 so instead he bumped up my T4 (synthroid) to 100 mcg. I am feeling better but still not great, and what I am really concerned about is that he said after 3 months he is testing me and lowering me back to 88 mcg because my TSH is too low and has always been. He tried telling me it was in my head and that I should consider anxiety meds because the TSH is acurate! I know how I feel in my own body and I am not overmedicated, if anything I feel undermedicated. My blood pressure is 98/60, my body temp when waking is 96.8, I am still puffy and do not have great energy. I eat healthy and exercise daily. Can someone tell me why my TSH is still so low please? Thank you!
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amburke1965
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There are a number of reasons for a low TSH including previously having been hyperthyroid, dieting and low vitamin levels. As you have Hashi's, unless you are dieting then it would suggest that you have low vitamin levels which wouldn't be at all surprising.
When hypo we get low stomach acid, that means we cannot absorb vitamins well from our food. For thyroid hormone to work well we need OPTIMAL levels of vitamins. Have you recently or could you ask your GP to test levels of ferritin, folate, B12 & D3?
As you have Hashi's have you ever tried a gluten free diet? This helps many people with Hahi's.
Thank you for your response and advice on navigating the forum.
I have had all my vitamins levels checked and they are good. I have tried gluten free in the past for 3 months and it did nothing to how I felt or lowered my antibody levels but maybe it was not long enough(TPO antibodies 82 and anti-thyroglob AB 1427 still) . You mentioned dieting, was there a specific diet that could cause this?
I am surprised you have not seen references to low TSH on the forum. There are discussions almost every day. It seems to me this is a huge problem for doctors. They think it is ‘exquisitely’ sensitive and use it extensively, rather than go by the actual level of hormones and more importantly how the patient feels. I hope someone more knowledgable will give you quotes shortly so you may consider your position. Its a painful argument between many patients and doctors.
Oh my goodness your doctor needs to realise TSH is not a good measure. They need to just stop following blindly…..
TSH is an Indirect measure.
It’s not a thyroid hormone 🙄
We know it is an indirect measure. There are numerous factors that can render it unreliable, including issues with the H-P-T axis, other medications, when test is taken, illness, nutritional deficiencies, damage to pituitary etc etc.
From first principles it really doesn’t make sense putting so much ‘weight’ on the TSH measure (THE MOST UNRELIABLE MEASURE).
I’m always baffled- where is the scientific rigour?Can’t remember if I have shared my analogy that I made up to get it clear in my mind.
The neighbour analogy.
So I want to know how you are and I decide to go and ask your neighbour. Depending on your relationship with your neighbour, I could get anywhere from ‘I do not know’ to ‘oh yes they’re okay I saw them a few days ago’. The question has to be asked - if I wanted to know how you were, why wouldn’t I come and ask you directly? Quality of information from your neighbour can never be as reliable as asking you. 😊
There is absolutely no logical rationale for using TSH to dose patients. The real deal are your actual thyroid hormones and even more importantly symptoms as there is no one size fits all. It’s as unique as a finger print. Being in range is not all there is to it. MANY Doctors think just ‘drop kicking’ you somewhere in range is sufficient. In fact, it is important to get you in the right place (if indeed the range represents your circumstances anyway). There are limitations to any model and the blood tests with their ranges are no exception (if only the doctors did but know). The most important thing is that your symptoms are considered in conjunction with your test results, not ignored in favour of test results. Test results should never be prioritised over the symptoms AND they should be calibrating the tests to you, not you to the lab work. We are all different. So when a person says “oh doc I feel terrible!” and a doctor says “ but I can’t understand it ???? your bloods are fine?” That is a classic case of treating the lab work.🙄
I’ve been reading round the subject nearly 2 years and slowly getting up to speed and these three issues confound treatment. Over reliance of TSH
Ignoring symptoms
Treating the lab work (not patient)
Below is a link to some recommended reading regarding the unreliability of TSH. This is a brilliant resource set up by tattybogle.
You can also read my bio, which I wrote as a case study, which may help to put things in perspective. I have also written a few posts on advocating for yourself 😊👍
if it is over 0.04 you can use the first paper referenced in this post to argue your case for keeping the 100mcg dose healthunlocked.com/thyroidu.... (useful-evidence-that-tsh-between-0.04-0.4-has-no-increased-risk-to-patients-on-levothyroxine-as-long-as-ft4-and-ft3-are-in-range-.)
if it is lower than 0.04 you can't us that one ( because it showed a sharp increase in risks below that level) ..... but there are other studies on that post you can use which show long term supressed TSH did not cause any significant increase in bone loss as long as FT4/ fT3 were in range.
I have some more useful links to papers by diogenes which explain why the TSH can be relatively lower once patients are taking thyroid hormone than it is in people who aren't.
I'll find them in the morning and add them .. if i forget, give me a nudge on friday by using reply button directly underneath this reply .
My TSH for the last 10 years has been anywhere from .002 to .007. During that time I was always on .5 mcg of Cytomel but my Synthroid has been from .75 mcg to 100 mcg.
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