30th Nov 2020: TSH 0.05 (0.2 - 4). Reduces my 100mcg dose to 100/75 alternate days.
22nd Jan 2021: TSH 3.8 (0.20 - 4), T3 1.2 (0.9 - 2.5). My hair is now falling out and I am exhausted.
22nd March 2021: TSH 1.3 (0.2 - 4), T3 1.0 (0.9 - 2.5).
"The T3 level is within the normal range. Albeit at the lower end of the normal range. Did you have any thoughts about what you wanted to do about this? We would not usually measure the T3 in primary care so I am afraid it is a bit beyond my remit but I could write to an endocrine specialist if you had any questions for them... When patients take thyroxine the lab does not allow a free T4 to be measured. " Why ask me? Then "Your levels are in normal range and so usually we would advise to continue on your current dosage which I believe is 100/75mcg alternate days, is this correct? If you are worried about the TSH dropping we can repeat it again in 3 months to check it is still in the right range."
That banging sound is my head against the brick wall. Could anyone draft me a reply? 63yo female, Hashimoto's. Now shattered, fat, cold and flaky.
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Blobby1234
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Hi Blobby1234, it’s incredibly frustrating isn’t it? I think I’d be embarrassed to admit I knew nothing about thyroid issues if I were a GP. How about reading up on it, doctor? Booking an online course, maybe? Having a read through the NICE guidelines?
Anyway...
As she has asked you what you want to do, I think I’d be minded to ask if I could increase my dosage back to 100mcg daily again (assuming you felt well before she reduced it?).
By the way, a low TSH does not mean that you’re on too much levothyroxine and should never be used on its own to determine the appropriate dosage. If your FT4 and FT3 were overrange in the presence of a suppressed TSH it would be a different story—but they clearly weren’t.
She shouldn’t have reduced your levothyroxine in the first place!
Does anybody else find it odd that T3 was measured - maybe in Nov when it was low? and is it me, or is that T3 a very narrow range at just a difference of 1.6?
I know that I'm cynical, but I wonder if this is where we are heading to ie "Let's measure T3 because we won't prescribe for that, and if T3 and TSH are in range - end of discussion" No more referrals to endo's to discuss T3 conversion.
Or my more optimistic self - Is this a better test, rather than TSH/T4?
UK. I've been going round this carousel for a decade. TSH suppressed - dosage reduced. Next blood test - too high, raise it again. Repeat 3 times a year.
There’s nothing wrong with a suppressed TSH.....provided Ft3 is not over range
Please show ranges on test results
Total T3 is pretty useless test (are you in Scotland? ....they seem to use Total T3)
All thyroid tests should be done as early as possible in morning before eating or drinking anything other than water and last dose levothyroxine 24 hours before test
Essential to regularly retest vitamin D, folate, ferritin and B12
Hairloss is frequently linked to low ferritin
Every time dose levothyroxine is reduced vitamin levels will crash down
What vitamin supplements are you currently taking
For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also EXTREMELY important to test vitamin D, folate, ferritin and B12 at least annually
Low vitamin levels are extremely common, especially if you have autoimmune thyroid disease (Hashimoto's) diagnosed by raised Thyroid antibodies
Do you have Hashimoto’s?
Ask GP to test vitamin levels
Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .
Last dose of Levothyroxine 24 hours prior to blood test. (taking delayed dose immediately after blood draw).
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)
Is this how you do your tests?
Private tests are available as NHS currently rarely tests Ft3 or thyroid antibodies or all relevant vitamins
If TPO or TG thyroid antibodies are high this is usually due to Hashimoto’s (commonly known in UK as autoimmune thyroid disease).
About 90% of all primary hypothyroidism in Uk is due to Hashimoto’s. Low vitamin levels are particularly common with Hashimoto’s. Gluten intolerance is often a hidden issue to.
Email Thyroid UK for list of recommend thyroid specialist endocrinologists...NHS and Private
tukadmin@thyroiduk.org
The aim of levothyroxine is to increase dose upwards in 25mcg steps until TSH is ALWAYS under 2
When adequately treated, TSH will often be well under one.
Most important results are ALWAYS Ft3 followed by Ft4. When adequately treated Ft4 is usually in top third of range and Ft3 at least 60% through range (regardless of how low TSH is)
Extremely important to have optimal vitamin levels too as this helps reduce symptoms and improve how levothyroxine works
I suggested to my GP that she did ALL the tests recommended by Thyroid UK - ie TSH, free T4, free T3 [which I get anyway] and key nutrients - ferritin, folate, vit D and B12 - and she did Had to fudge the vit D a bit - it's the hardest to get done and there are supplemental questions the GP needs to answer before the lab will do it. Emphasise that it's important for your overall health for both thyroid results AND key nutrients to be good.
I'd also suggest that you say to your GP that you understand that TSH is used as a primary diagnosis tool for hypothyroidism, but you understand from the reading you've done that it is far less important after diagnosis (although it should never go as high as 2 once you're on medication): what matters then are the actual thyroid hormones - and with these, it's not about being in range, it's about being optimal in range, and that usually means 2/3 through for BOTH free T4 and free T3 - and if this results in a suppressed TSH that's not a worry.
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)."
(That’s Ft3 at 58% minimum through range)
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
the best paper on this that I have seen indicates that a TSH of 0.03-0.5 is best on therapy. Above that is insufficient and below MAY or MAY NOT indicate slight overdosing
Interestingly, patients with a serum TSH below the reference range, but not suppressed (0.04–0.4 mU/liter), had no increased risk of cardiovascular disease, dysrhythmias, or fractures.
It is unfortunate that we did not have access to serum free T4 concentrations in these patients to ascertain whether they were above or within the laboratory reference range.
However, our data indicate that it may be safe for patients to be on a dose of T4 that results in a low serum TSH concentration, as long as it is not suppressed at less than 0.03 mU/liter.
Many patients report that they prefer such T4 doses (9, 10). Figure 2 indicates that the best outcomes appear to be associated with having a TSH within the lower end of the reference range.
When discussing the 'risks ' of Low TSH with GP you might find the following ammunition helpful :- If you look at the first reply to this:- healthunlocked.com/thyroidu...
post, (ignore the fact it say's 'more mature')
and click on the links within it , you will find discussions , and a link to evidence that convinced me that it doesn't really present a problem until TSH is below 0.04 and even then , it's all relative.
It's odd you can't get fT4 done by GP........ it seems to be becoming a postcode lottery.
I've had NHS fT4 with TSH since 2003. My fT4 has always been done regardless of whether TSH is below range or just inside. I even got a few fT3's from 2016-2018 which i didn't know they'd done at the time.
Some labs have a 'cascade' protocol where they only test fT4 if TSH is below range, and only test ft3 if TSH and fT4 are out of range.
Some Doctors, like yours, seem to know which strings to pull to get fT3 done , but some can't manage to get past the lab saying 'no'.
The whole thing stink' s , and it's ridiculous and outrageous (when they are reducing dose against your wishes) to not even measure your fT4.
It's an understandable economy to just do an annual TSH on someone who's feeling well on a stable dose., but if it is a discussion of risk / benefit between you and the Doctor , (as all medicine should be), then it's unfair for either you , or the doctor to have to make this life changing dose decision without access to the full information on your actual hormone levels.
I'm currently on a higher dose than my doctor would like , but he's agreed to continue prescribing and wrote a note on my record's that i understand the risk's , so he's covered his back if i drop dead, which is fair enough....... but it should be a joint decision , we're not children ,and we haven't been committed .....
NHS guidelines are not laws that they have to follow to the letter ... they are guidelines . And the first thing it says in the current NHS thyroid guidelines emphasises just that ..
"Your responsibility
The recommendations in this guideline represent the view of NICE, arrived at after careful consideration of the evidence available. When exercising their judgement, professionals and practitioners are expected to take this guideline fully into account, alongside the individual needs, preferences and values of their patients or the people using their service. It is not mandatory to apply the recommendations, and the guideline does not override the responsibility to make decisions appropriate to the circumstances of the individual, in consultation with them and their families and carers or guardian."
(N.I.C.E. Guidelines Thyroid Disease assessment and management 2019 )
Oops , that turned into a bit of a rant and i've forgotten whatever it was i was going to say before i went off on one .. oh well .. i hope some of it is useful.
Thank you all for your replies. I've drafted a reply to the GP and it's basically I'm sick of this constant seesaw so please prescribe me 100mcg, the dose I feel well on, and if it makes the TSH too low by the book, well so be it.
Finally got back to me - yes, take 100mcg if it makes you happy 🙄. The worrying thing is that the T3 test was was for total T3, and that was right at the bottom of normal range. Does that mean fT3 is going to be even lower? I think the time has come to order a Medicheck proper blood test. I remember being told you could get a discount if you had a code from this website. Anyone know what it is?
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