I have just received my latest blood test results, as follows
TSH 0.21 (0.35-5.00)
T4 15.9 (9-21)
T3. 3.2. (3-6)
I have been told to reduce Levothyroxine to 50mcg
In October it was reduced to 75mcg from 100 mcg
Since that reduction I have had a return of symptoms that I had before being diagnosed as under active over 30 years ago. On 100mcg I felt really well but was told that I was over treated.
I am now dreading this further reduction but GP’s are not interested.
I would appreciate thoughts on this
Thank you
Written by
Gym4me
To view profiles and participate in discussions please or .
My thoughts are that your GP is treating you by looking only at the TSH - which when you are medicating is so wrong ! Look at your FT3 result - this is the most important and ACTIVE thyroid hormone needed in every cell of your body - and yet it is hovering around the bottom of the range. Also the FT4 is not optimal and should be nearer the top of the range .... This treatment is due to poor medical training and a lack of thyroid knowledge - sadly.
You do not have to do what your GP tells you - especially when he is so wrong !
You can buy it on-line without prescription. Lots of people do when they have idiot doctors like yours. Just write a new question asking people to PM you their trusted sources.
The above link takes you to your Post/Replies of 9 months ago - much of what was said then still applies today. Can you have Private Testing done through Thyroid UK ?
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, see a different one if necessary.
I’ve posted the below before a few times, so apologies if you’ve read it already, but just in case it helps - I’m on T4, you might find the comments about hashimotos and over-medication useful in your battle to be well.
I see an endo privately which I know isn’t an option for everyone, but he’s very understanding and is a thyroid specialist.
Last time I went to see him my blood results showed my TSH is now plunging into the nether regions, my T4 and T3 are about 50-55% of the way through the range and I still feel like cr*p, though not as cr*p as the cr*ppest I’ve felt. He is happy for me to continue to increase Levo despite the fact that my TSH will go lower and it is already below the reference range.
If you have been severely hypo or hypo for a long time then TSH is no longer reliable in the way it reacts when you take T4. My endo (a thyroid specialist) has said to me ‘Let’s forget about the TSH, it’ll probably never recover.’ Magical words!
What he said was interesting - he said most Doctors understand underactive thyroid as that is relatively straightforward, but they don’t understand hashimotos, which is more complex to treat as it is difficult to stabilise your levels. GPs just treat it in the same way as underactive thyroid but it isn’t the same. He said that the TSH does strange things with hashimotos as the pituitary doesn’t know WTF is happening as the thyroxine from the thyroid waxes and wanes. So basically the pituitary loses the plot and TSH tends to go low. Also if you have been hypo for a long time, the feedback loop doesn’t work properly anymore. We also know that you can be taking lots of T4, but if you don’t convert enough of it to T3, you won’t feel any better.
My endo also acknowledged what I have always thought that despite doctors saying synthetic thyroxine is just the same as our own, it isn’t and many struggle to convert it. This means the TSH responds to the level of T4 and goes low, but we actually struggle to manufacture T3, so need to take more of the synthetic T4 stuff than we would have to produce of our own - even more than the normal range for T4 for some people to be able to make/convert into adequate active energy and therefore to feel well. This is the reason the T4 and T3 test are so important rather than the TSH.
The combination of hashimotos and synthetic T4 creates a perfect storm. Your pituitary goes AWOL and you may struggle to do anything with synthetic T4. Therefore other than T3, patients should not be assumed to be well just because they fall within the ranges and a low TSH is fine if there are no signs of being over medicated e.g. high FT3, heart racing, tremor etc.
There are physical tests your doctor can do to check if you are over-medicated - pulse rate, check the heart rhythm, extend your arms and see if there is tremor in the hands etc. If he hasn’t - why hasn’t he? He can’t just reduce your meds on a figure and not actually look at you! You can take your temperature and heart rate on waking every morning and record these to show your doctor as proof too. Despite my TSH being low, on waking my temp is usually 35.2 and my heart rate 56! He has to check you are over-medicated, not just assume you are.
He should be investigating why you are not symptom free and feeling better despite the stupid TSH reading. Not responding to a piece of paper rather than a patient. He needs to turn away from his computer and look at you. I would ask - if you insist on reducing my Levo what are you going to put in its place to alleviate the symptoms I will feel? Will you refer me to an endo for a trial of T3 as you are identifying I cannot get well on Levo as I cannot take the amount I need?
Do battle - and good luck. Tell your doctor to dose the patient not the blood test. If you were over-medicated, believe me, you would know. When I was over-medicated it was scary, heart racing and pounding if I just stood up, feeling nauseous etc- you would want to reduce if that was the case! 🤸🏿♀️ 🥛
Thank you for your very detailed reply. I was last seen by a GP last October who just ignored my symptoms and when I asked why I felt so bad, his reply was that he had no idea and that the only reading that mattered was TSH and that that was confirmed by every endo in the country. Today all I got was a phone call telling me the results and that levo was being reduced by a further 25mcg and retest in 6 months!
I go between feeling that there is no point in caring and giving up and wanting to fight to get my health back.
‘And that that was confirmed by every endo in the country.’
He’s full of bullsh*t. You can tell him mine doesn’t for a start - and there are plenty of others. There are lots of references to studies etc on this site that you can print off and present to him that show that bullsh*t statement is errant nonsense.
But if he is going to treat by TSH then these parts of my response still stand ‘if you insist on reducing my Levo what are you going to put in its place to alleviate the symptoms of hypothyroidism that will return’. And also - ‘what physical tests are you going to do to confirm I have the symptoms of over-medication’ - after all, you could be an outlier if the ranges.
Don’t give up the fight. You can’t. You deserve the treatment you need to return you to health. 🤸🏿♀️🥛
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Thyroxine reduction 
Reduction of thyroxine
Thyroxine Medication.
Levothyroxin reduction and Painful Backache.
