Iv been on 150mcg T4 most of my life then reduced to 75mcg but felt dreadful , so sourced NDT myself 18 months ago but didnt ever reach my sweet spot so 3 months ago sourced T3 so I have been taking 75mcg T4 and 12mcg T3 feel better but still fatigue and napping in afternoon my vitamin levels are all optimal so it's not that but just had bloods drawn last week with new gp they wont release full copy yet as need permission from gp first ( %#%$$) yea right, explained I'm legally entitled but hey ho so il wait for them but they told me over the phone they wont test T3 even though I take it and here are the basics
TSH .. 0.03
T4 .. 11.5
Gp then called me to say I'm way over medicated on T4 so he wants to reduce it to 25mcg or 50mcg ??????? How can I suddenly need less after years of 150mcg and 75 mcg ??? Is this right ?? I said I was concerned he wanted to reduce the T4 but he insisted I explained how I feel and my symptoms are of being under medicated am I wrong ? Worried sick now as I feel all my efforts are going to be smashed , i have very little thyroid left apparently its shrivelled up according to the scan so why reduce my Levo ? Advice please before appointment Friday, also please don't ask for levels I don't have them until gp gives permission for a copy , yes I know , it beggars belief that they don't know the law but then they don't know anything about the thyroid either . Thankyou in advance much appreciated
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Jodiedebs55
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I understand they're incredibly secret about OUR results, but that's because they think we're so stupid we wouldn't understand, or something. But, can you not get the range for that FT4? It looks very low, going by ranges we usually see on here. But, ranges change from lab to lab, so we can't take anything for granted.
No sorry no ranges yet that's all they gave me I'm going back Friday for a chat with my new gp looking at that would you think I'm over medicated on levo ? And as you say its low why would you think that would be ? I need as much info as possible before I go in I want to be armed with good advice and I always get that from you 😁
I can't say anything for sure about your FT4 without the range, but it's possible that your doctor is only looking at the TSH and thinks it's too low - they all seem to make that mistake. However, it could possibly be one of those rare ranges where the top of the range is quite low. We really can't guess about these things.
But, I have to say, I very much doubt that on only 75 mcg I doubt your FT4 would be over-range, especially not as you're taking T3, because that tends to lower FT4 levels.
Does your doctor know you take T3? Because that is the reason your TSH is low. Taking T3 lowers the TSH, and doctors should know that.
But, even if you really did need your levo reduced, it should not be reduced by more than 25 mcg at a time. So, you need to insist on that.
Yes he knows I source my own T3 and that I take 12mcg he thinks that has no relevance on the TSH results and refuses to test my T3 so I'm going with medichecks, thankyou for the advice and info always appreciated, where would we be without this group ??? Seriously.... its very disturbing to know my gp knows less than the members and admin of this group . 😳
Sounds as if you know more than him. But, they just don't learn about T3 in med school. The problem is that they just don't believe they could be wrong. Good idea to do a medichecks test - and, if it comes down to it, you might be better off doing the whole thing yourself: buying T3 and levo, dosing yourself and doing your own tests. There's nothing, really, that he can add to that, is there.
What is certain here is that your TSH is below range - the range for TSH is usually something like 0.2-4.2 or similar.
Your FT4 - is very likely going to be in range but it could be at the bottom or towards mid range, whichever it is low. Ranges we see here are 7-17, 9-19, 11-23, 12-22.
So your GP is doing what most of them do, and is using only the TSH to adjust your dose but this is wrong, TSH is not a thyroid hormone.
TSH is a pituitary hormone, the pituitary checks to see if there is enough thyroid hormone, if not it sends a message to the thyroid to produce some. That message is TSH (Thyroid Stimulating Hormone).When there is not enough thyroid hormone (natural or replacement) TSH will be high.
If there is enough hormone - and this happens if you take any replacement hormone - then there's no need for the pituitary to send the message to the thyroid so TSH remains low.
They are so uneducated in all things thyroid that they don't seem to know that it's the actual thyroid hormones - FT4 and FT3 - that are important.
Be prepared for your next appointment, refuse to reduce your dose of Levo and use the following information:
Dr Toft, past president of the British Thyroid Association and leading endocrinologist, states in Pulse Magazine (the magazine for doctors):
"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).*"
*He recently confirmed, during a public meeting, that this applies to Free T3 as well as Total T3. You can obtain a copy of the article by emailing Dionne at
tukadmin@thyroiduk.org
print it and highlight question 6 to show your doctor, also point out why it's important to know the FT3 level (but he still probably wont be able to get it tested, it's the lab that makes that decision even when a doctor requests the test, and if TSH is in range they generally wont do FT3).
Thankyou so much I knew I was right to be concerned, 25mcg indeed isn't even a starting dose , I guess il have to source and pay for levo myself as hes categorically refusing to increase my dose though I will go armed with this info I know he wont listen but il stand my ground as I know advice from yourselves especially you and greygoose is invaluable, I used to moan about my last gp but at least he used to let me take the dose I felt good with and never seemed concerned about the results maybe he just didn't care but now I see at this new practice I'm going to have a battle on my hands , are these low results the reason I feel naff ? Afternoon naps are needed and the will to literally get dressed every day are back , so angry I cant get it right iv been ill for so long iv lost my mojo and just feel like I have no life, I honestly don't know when I last left the house except for the gp appointment, I think it's been 4 months .... sorry to moan ... thankyou for your advice I really value it 🤗
If your GP wont accept the evidence from Dr Toft, I would ask to be referred to a endo (but make sure it's one from ThyroidUK's list of thyroid friendly endos and ask for feedback about any that you are considering seeing).
are these low results the reason I feel naff ?
Yes, very likely. But what I would do in your position, seeing as you can't get FT3 tested, is do the full thyroid/vitamin panel with one of our recommended labs. It would help to know if your vitamins are optimal - which I doubt they are - and that is something that should be worked on if they are low.
Medichecks Thyroid Check ULTRAVIT medichecks.com/thyroid-func... You can use code THYROIDUK for a 10% discount on any test not on special offer.
Both tests include the full thyroid and vitamin panel. They are basically the same test but with the following small differences:
For the fingerprick test, Blue Horizon requires 1 x microtainer of blood (0.8ml), Medichecks requires 2 x microtainers (total 1.6ml)
Blue Horizon includes Total T4 (can be useful but not essential). Medichecks doesn't include this test.
B12 - Blue Horizon does Serum B12. Medichecks does Active B12.
Serum B12 shows the total B12 in the blood. Active B12 shows what's available to be taken up by the cells. You can have a reasonable level of Serum B12 but a poor level of Active B12. (Personally, I would go for the Active B12 test.)
If you supplement with Biotin, or a B complex containing it (B7), Medichecks have confirmed that because they use biotin in their assay it's recommended to leave it off for 7 days before doing any blood tests as it can give false results.
Thanks so much , my last vitamin test proved to be optimal I supplement every day though now a maintenance dose as recommended by greygoose last year, I'm better than I was whilst on levo and NDT i just feel tired and wasted and weight os piling on was 8st 2 years ago now I'm 11st 6lb it's pretty soul destroying considering I eat so healthy and GF I have little energy for exercise so that doesn't happen, il order a blood test now thankyou so much for all the advice if he reduces my levo il buy my own from God knows where iv only just found a new supplier of T3 🤗
Iv told him I take 12mcg T3 he didnt actually understand the relevance of this which is why I have lost all faith in the NHS to be honest , it's just draining
T3 is important as I need to know if I'm under or over medicated, the whole point is about the levo as they are trying to put me on a dose of 25mcg which is ridiculous it's not even a starting dose and considering my thyroid is shrivelled and almost non existent it would be wrong to lower my levo , but thankyou for your reply
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