Hi all
I increased my levothyroxine dose from 50mcg to 75mcg 6 weeks ago and my GP asked me to test my TSH only, which has come back as 0.27 (0.27-4.20). She has sent me a letter telling me I am now overmedicated and need to reduce by 25mcg and repeat bloods in 3 months. I don't understand as I feel well for the first time in years and I'm in range albeit right at the bottom. I felt unwell on just 50mcg.
Any advice gratefully received on how to tackle this one please?
Thanks
Just testing TSH is completely inadequate
For full Thyroid evaluation you need TSH, FT4, FT3 plus TPO and TG thyroid antibodies and also very important to test vitamin D, folate, ferritin and B12
Essential to test FT3 and FT4 plus antibodies
FT4 should be near top of range and FT3 at least half way in range
Low vitamin levels are extremely common and these tend to lower TSH. So it's always important to test vitamins.
All thyroid tests should ideally be done as early as possible in morning and fasting. When on Levothyroxine, take last dose 24 hours prior to test, and take next dose straight after test. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, GP or phlebotomist will be unaware and we don't discuss it with them)
Is this how you did the test?
If not, perhaps you say you didn't stop your vitamin B biotin supplements. Can you repeat the test
biotin can falsely affect test results
endo.confex.com/endo/2016en...
endocrinenews.endocrine.org...
Alternatively Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies or vitamins
thyroiduk.org.uk/tuk/testin...
Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have money off offers.
If FT4 and FT3 are both within range you are not over medicated
Official NHS guidelines saying TSH should be between 0.2 and 2.0 when on Levothyroxine
(Many of us need TSH nearer 0.2 than 2.0 to feel well)
See box
Thyroxine replacement in primary hypothyroidism
pathology.leedsth.nhs.uk/pa...
If antibodies are high this is Hashimoto's, (also known by medics here in UK more commonly as autoimmune thyroid disease).
About 90% of all hypothyroidism in Uk is due to Hashimoto's. Low vitamins are especially common with Hashimoto's. Food intolerances are very common too, especially gluten. So it's important to get TPO and TG thyroid antibodies tested at least once .
Link about thyroid blood tests
thyroiduk.org/tuk/testing/t...
Link about antibodies and Hashimoto's
thyroiduk.org.uk/tuk/about_...
thyroiduk.org.uk/tuk/about_...
List of hypothyroid symptoms
thyroiduk.org.uk/tuk/about_...
I have hashimotos and have had a strict gluten free diet since you recommended this a couple of months ago. I also supplement my vitamins after having a full range of tests. I did leave 24 hours before my last TSH test and tested whilst fasting at 7.30. I didn't stop taking biotin before my last TSH test though. How long should I stop taking biotin before my next one?
Thanks
Probably we only need to stop B complex or any biotin supplements for 24-48 hours, but to be on safe side , recommended to stop 3-5 days before any blood tests
So you can legitimately say to GP biotin may have affected results and you will getting FULL private tests yourself
Come back with new post once you get results
Do you have any symptoms of being over-medicated? If not, refuse to reduce. You are still just in the range. TSH is a moment in time and changes through the day. Don’t let your GP’s ignorance make you ill. They need to treat the patient not the blood test. How dare your GP do this by letter and not even examine you to see if there are signs of over-medication? They are negligent in their duty of care. You are an adult, they need to discuss it with you. If you search there are lots of other postings on here of people in the same situation and the more knowledgeable than me direct them to some great studies to support lowering TSH until you feel well. Fight it!
loobyp A small but important point - if your GP is going to dose by TSH, and reference ranges, then she can't use it incorrectly! That's adding insult to injury lol. Your TSH level may be at the bottom of the range but nevertheless it is IN and not OUT of the range, so can't be used against you to reduce your meds, that's illogical. So if it were me, I'd write back and make that point to her and decline her kind offer to reduce your meds on that basis, but that you will be happy to review your decision against the next tests, which you understand should include a full thyroid panel for the purpose of more accurate decision-making .....
Great advice thank you. I think a letter sounds like a good idea. More chance of being heard that way I think!
The only way your doctor can tell if you are overmedicated is by testing your free T3, which most doctors don't do. On what basis are you overmedicated if your TSH is within range? Stand your ground with your doctor.
Hi I had exactly the same, I’ve been on 125mg for 3 years and they told me at my last test I’d been over prescribed for the last 2! Obviously I was shocked as I then had to have lots of tests done to check for organ failure! (Like to think I would have known by then!!). I too felt really well but was reduced to 100mg for 12 weeks. I knew it was wrong as I started to get all the old side effects back, brittle nails and hair, dry skin especially on my feet and I could fall asleep standing up! Needless to say, my next bloods came back saying my thyroid was borderline but other hormones were having to work extra hard to compensate for the reduced dose. Back up to 125 and starting to feel human again! Blood test in 12 weeks to see how that pans out.
Thanks for the reply. Hope things settle for you.
The professionals only take account of 'numbers' but ignore clinical symptoms and that is the real purpose of providing thyroid hormone replacement. To restore our health and remove symptoms. This is from an expert in hormones and highlight the part re TSH for your doctor.
They should really forget about adjusting hormones according to the TSH which is, after all, a pituitary hormone which rises if there's a problem with the thyriod gland or are undermedicated. So if on a reasonable dose for us, the TSH will be low or very low and those who've had thyroid cancer have to have a suppressed TSH.
Yes first thing in the morning and fasting.
I have been made to reduce my 100 mcg T4 by 25 mcg on the basis of suppressed tsh (t4 was in range and t3 not tested!), within 3 months I felt really ill - followed the advice here and went up to 100 mcg again, done private blood tests and never looked back.
If you feel well, then you need that dose, fight back, especially as the TSH is still just within range! There is also no convincing scientific evidence that low TSH is associated with an increase in osteoporosis or atrial fibrillation - just in case they try to scare you with that. Take care and good luck!
Just some personal experience from me. My TSH is lower then yours it always is on the low side and every yime my Dr wants to reduce i simply argue that a TSH that low is the only way I feel well. If one dr won't agree then I go to another in the practise. So far so good!
Best wishes 😁
I’m also in the same boat, i require my tsh to be almost suppressed to feel ok. To be honest tsh has really nothing to do with it, it’s more to do with the fact that when my tsh is in range (even at the very bottom of it) my FT3 simply isn’t high enough to feel good.
So there’s a good chance your FT3 is a bit too low without being “over medicated”.
Personally I have an endo who is ok with that and writes in my file that I require a slight “over medication” to feel good, he does that so other doctors don’t try to mess with it, but he did put me through the loops to prove to him I needed it (for example I lowered it once for 3 months and I started feeling worse, that was enough for him to raise it again).
You have to either work with your doctor, and say look I’ll do this 3 months but if I feel worse can we go back to the old dosage? If the doctor is willing then it’s just 3 months to prove once and for all that it doesn’t work and have it written on your file. If the doctor isn’t willing find another one. And lastly if you’re not willing to go 3 months feeling a bit rubbish, then find another doctor. I went through 3 GPs, 1 endo-surgeon, and 2 endos before I finally found the endo who cares more about my wellbeing than numbers on a sheet. It wasn’t a fun experience going from doc to doc, but in the end I wouldn’t have done it any other way since I finally feel well.
I wish you all the best!
Dr Toft, past president of the British Thyroid Association and leading endocrinologist, states in Pulse Magazine,
"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)."
You can obtain a copy of the articles from Thyroid UK email print it and highlight question 6 to show your doctor please email Dionne at
tukadmin@thyroiduk.org
Professor Toft recent article saying, T3 may be necessary for many, otherwise we need high FT4 and suppressed TSH in order to have high enough FT3
rcpe.ac.uk/sites/default/fi...
So your GP would, I am sure, financially rather prescribe slightly higher dose Levothyroxine, than pay for addition of small dose of T3
That's really helpful. Thanks so much for all your advice. It's really appreciated.
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