I feel like crying and don’t know what to do. My Dr asked me to do a routine blood test to repeat my prescription. The results were;
TSH 0.14
FT4 20
Vitamin D 57. N nmol/L less than 75nmol/L is insufficient I have been taking 3000iu of vit D a day for the last 3 months yet my vit D is still insufficient.
My dr now wants to reduce my daily dose from 125mg of levothyroxine to 100mg. Is my dose too high?
I have spent the last 3 months on a low carb, gluten free diet. I finally got to a point where I feel good. My hair, which had receded about 2inches either side of my forehead, has finally grown back. I have energy, I don’t feel cold all the time, my skin is less dry, the pain in all my joints has massively reduced and I was very very slowly losing weight. 4kg over 3 months.
I tried to explain all of this but she has insisted my dose be reduced. When I asked for more tests she refused.
I don’t understand why my vit D is so low when I spend hours a day outside, I have a dog, and take a supplement. Or why I need to reduce my dose just when I’ve got to a point where I feel normal.
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sja11
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From all that I’ve read here and my own recent experience...unless there’s a good medical reason to reduce dose then don’t. Especially if you’re feeling good.
My Endo just recently insisted on reducing my dose to 78.5mcg/day down to 71:5mcg/day. I wasn’t feeling great at the earlier dose but she insisted. So I did as she directed. Th second week I started getting painful joints, didn’t have that before. I couldn’t do things like I could two three weeks ago, I could hardly put my socks on, turn in bed, get in bed out of bed easily😢 I could only think of the drop in thyroid meds. I sent her an email telling her how I felt and asked if I could go back to previous dose, Endo came back and said “I'm not sure that reducing a little dose will have an immediate effect but happy for you to go up to the previos dose” but ok to do so. I also requested some T3 but was told not a good idea. I know I it’s not a big drop 10% but I was on very little anyway (I’ve had a thyroidectomy following thyroid cancer 5 years ago).
So I’ve now increased my dose and hope and pray it will at least go back to my previous state.
I did go on a bit but...What I’m trying to say is do ask more questions and ask to have a full panel bloods done for thyroid.
Lets put these figures into a story. It's well known now that if you have no thyroid at all and are taking T4 only, then the "healthy" range for TSH does not apply. Instead the best estimates are to be in a range 0.03-0.5. Second your FT4/FT3 ratio is 4.6/1, with a lowish FT3 and a highish FT4. This ratio indicates poor conversion - anything well above 4/1 is suspect. This means you ought to have a combination T4/3 trial to see if there are health improvements. The problem is that present day endocrinologists and doctors have been educated in the past by a false paradigm - namely that TSH is the truly valuable parameter for diagnosis. It is when diagnosing hypothyroidism but not when monitoring treatment. Modern understanding denies the overarching idea of TSH being always suitable as a diagnostic.
diogenes it seems well known on here that "...if you have no thyroid at all and are taking T4 only, then the "healthy" range for TSH does not apply. Instead the best estimates are to be in a range 0.03-0.5".
But do you have some references we can quote that say this, as many of us discuss it at appointments and are told the contrary, even though we know from experience that it is so!
Many thanks diogenes . Good news - it isn't behind a paywall.
The study refers is based on patients with a total thyroidectomy. Would this suggested TSH range also apply to other patients eg who had RAI or a partial thyroidectomy, or atrophic autoimmune thyroiditis?
Every patient without any thyroid however developed, will behave the same. In between one has a slowly descending range for TSH, dpending on the degree of thyroid los. For example if half the thyroid still works possibly a TSH range of 0.25-2.5 (halving the difference betwen no thyroid and 100% thyroid re TSH). would work. But this of course is empirical because no-one with some thyroid can normally find out how much is lost.
Did you stop vitamin B complex a week before last blood test?
Strongly recommend getting FULL thyroid and vitamin testing done privately
Just testing TSH and Ft4 is completely inadequate
ALWAYS do all thyroid testing as early as possible in morning before eating or drinking anything other than water and last dose levothyroxine 24 hours before test
After I started feeling shaky/anxious I increased my carb intake from 30gms to 100gms ish and it stopped. The increased frequency of the palpitations didn’t stop with the increased carbs.
Please remember you are ONLY over-medicated if free T3 is over-range ... and yours hasn't even been tested ...
Your GP is also missing the subtle but critical difference between having a very low TSH (and frankly yours isn't that low) and over-range free T4 and free T3 and NOT being on thyroid meds - which can be dangerous; and having low in range TSH and high in range free T4 as a result of being on thyroid meds - which quite a lot of research has shown isn't dangerous at all.
I'd refuse the reduction in thyroid meds - at least until free T3 has bee tested and shown to be too high if you feel fine like you are. [I was in a similar position myself a few years ago, and a small reduction in levo had me feeling dreadful but no impact on my bloods; the GP wanted to reduce further, I politely refused and eventually my poor conversion came to light and I'm now on levo/lio combination and feeling completely fine. Lio reduces TSH so my TSH is now quit a lot lower than yours]
and read the first reply to it , you will find links to some useful discussion and evidence on 'risks' of low TSH.
Below range TSH is why you are being asked to reduce dose, ( your FT4 is within range)
You could look at these 'risks' for yourself, and then ague that you accept the 'risks ' of your TSH level, and ask to stay on same dose.
Or you can decide to try a slight reduction, since you did wonder in your previous post if you were overmedicated , i presume something about how you were feeling made you think that could be a possibility.
if you do decide to try a reduction it does not need to be reduced by 25mcg just because this is what size the tablets come in , you could reduce by 12.5mcg instead . I find this is enough of a change to raise TSH slightly , and alter how i function.
If you try a reduced dose for long enough and you feel less good than you did on 125, you will be able to report this to GP with certainty , which does help in the long run . It's hard to be assertive if you're not 100% certain you're right.
Since you have already reduced it , i t might be worth putting up with it, in order to say you've tried it . then you'll know for sure. And you will have a better case than you have now to insist on the dose you prefer.
I have a genetic arrhythmia from both my parents, and on the higher dose it became slightly more frequent.
No history of any heart disease or osteoporosis in the family, all grandparents lived into their 80s and 90s. My parents are both hitting their 90s in the next few weeks.
Dose was reduced at the beginning of October. I did try to refuse but felt really pressured when 3 different doctors from the practice, including the senior partner, insisted that I needed to lower it as I was endangering my health.
"The appropriate dose of levothyroxine is that which restores euthyroidism and serum TSH to
the lower part of the reference range – 0.2-0.5mU/l.
In this case, free thyroxine is likely to be in the upper part of its reference range or even
slightly elevated – 18-22pmol/l. Most patients will feel well in that circumstance. But some
need a higher dose of levothyroxine to suppress serum TSH and then the serum free
T4 concentration will be elevated at around 24-28pmol/l.
This ‘exogenous subclinical hyperthyroidism’ is not dangerous as long as serum T3 is
unequivocally normal – that is, serum total around T3 1.7nmol/l (reference range 1.0-
2.2nmol/l)."
This comes from DR Anthony Toft, former president of the British Thyroid Association. You can email Dionne at Thyroid UK for a copy of this article, send it to your GP. That's what I did and they haven't argued with me about my dose since. In fact, when I was on 150mcg and feeling hyper they actually told me to stay on that dose when I said I wanted to lower it! Despite suppressed TSH. Madness.
Thanks for all the information and advice I will do another test in a couple of weeks and insist I know the risks and am willing to accept responsibility.
Having just read Diogenes posts, particularly with reference to the paper on arrhythmia and elevated ft4, I can now see that I really need to get my ft3 levels tested asap.
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