I am currently on 100mcg levo and have been for the past 5 years at least.
Recently had annual bloods done at gp's. (31/10/24)
After the blood test by MMH 07/02/24 I upped my levo to 125mcg for 3 months. These were not prescribed but from someone who had had them on prescription. I then did another MMH blood test on 23/04/24.
I am not sure that the 3 months increase in dose that I did without gp involvement did me any good. I thought I might feel something different. There was no change in T3 levels and I am wondering if I am not converting properly. I am cold all the time, seems to be from the inside. Takes me ages to get warm in bed. Tired most of the time, but seem to have short bursts of energy.
After the recent gp test which only included tsh I have received a letter asking me to make an appointment to discuss the results. I am assuming the worst in that they want me to decrease the levo.
The gp, obviously, will be looking only at the latest TSH to make a judgement.
Any thoughts will be much appreciated as I am not that good at fighting. I was brought up to believe that doctors know best.
Thank you.
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mill44
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Hi there, before I started on thyroxine I had been telling my doctor/nurse that I have almost no energy just walking to my car which is only 4 or 5 metres from my front door they tried just about everything but decided it was due to low vitamin D " i had recently moved back to the UK after 10 years on my boat in the Caribbean " which I could understand due to the lack of sunlight in the UK but after 3 months of 4000 whatever units they are measured by i had felt no differently than before starting it so after just about every test they could think of they decided it was low count of thyroxine so I started on that but still they could not think of anything else it could be so I was left with no idea what the cause is so you can have perfect levels after starting on thyroxine you may not feel any better.Good luck finding something that works for you,
woah! Your free T4 level is potentially dangerous. As is taking any of it unprescribed.. There is substantial evidence that high range or really anything above mid range T4 significantly increases the risks of atrial fibrillation and other cardiac malfunctions GPs dont know this but they do know that suppressed TSH is not a good sign! I get why you are chasing this dragon, your fT3 is showing signs of poor conversion from fT4 but the answer is NOT more T4. The answer is more likely to be a small T3 supplement to enable you to get your fT4 down to around the median ie 14-15 TSH around 1-2 and fT3 around 4.4 But all under clinical supervision!
really anything above mid range T4 significantly increases the risks of atrial fibrillation and other cardiac malfunctions GPs don't know this but they do know that suppressed TSH is not a good sign
First of all, many people feel best when their T4 is between 60 and 80% through the range, as only this way their T3 can come up to a decent level, as it is the low active hormone T3 that will give you the symptoms.
The studies that have linked atrial fibrillation and cardiac malfunction (including a higher risk of osteoporosis) showed that there is a risk with a suppressed TSH, however the T4 and T3 values in these patients studied were well over range. And this what causes the problems, the high thyroid hormones and increased metabolism, not the TSH. The TSH is a hormone signal from the pituitary gland in response to high T4 and T3 or in response to taking exogenous hormones such as levothyroxine or especially liothyronine.
In many hypothyroid patients, the TSH-T4 axis is broken, hence the TSH is not a good gage for thyroid treatment and why people are advised to consult their T4 and T3 values instead of the TSH only. This can be read in a key paper by Hoermann and Midgely:
The pituitary TSH response is too diverse to be viewed as a sensitive mirror image of thyroid function. The interlocking elements of the control system are highly individual, dynamic, and adaptive.
Many patients have a low or even suppressed TSH when on levothyroxine treatment only, which is NOT reflective of their T4 and T3 status, yet GPs are keen to reduce their medication, which only leaves them hypothyroid and unwell.
I agree, that the T4 levels above are too high, however it clearly showed that mill44 has difficulties in converting T4 to T3. So the best course of action would be to reduce the levothyroxine dose again and add some T3 to the therapy. Whilst on T3 therapy, the TSH will be very low or suppressed anyway and this is generally accepted, so why should it be different and not acceptable whilst on levothyroxine only?
I note that this is an observational study, which is not as robust as a randomised controlled trial. And as with any associations or correlations, it does not imply a causation.
It is also not stipulated, if they have excluded people with cardiovascular disease, diabetes, high blood pressure or other conditions that could pre-dispose them to atrial fibrillation. They also did not distinguish between male and female risk, as these can differ.
In the general population, the prevalence of atrial fibrillation under 40 years of age is around 0.3%, it is around 6.4% for people aged 65–69, it increases to 8.3% for men and 5.7% for women between 80 and 84 years and is highest in 85 and older people, namely 13% for men and 14% for women. Given that many diagnoses of thyroid disorders are made in people above 60, they would naturally already have a higher risk of AFib and if they have had low thyroid hormones for a while before their diagnosis, this would also increase their overall risk as well.
I think there are much more finite nuances to AFib in thyroid patients and sadly this has not been addressed.
because higher than mid range fT4 has been shown in large scale studies to increase the risk of AFib anything else is speculation or conjecture It is less and less accepted that it is ok to suppress TSH except under very specific clinical situations eg thyroid cancer risk
I have permanent afib - and I think that is/would be the case irrespective taking levothyroxine.
I found that increasing my dose of levothyroxine from 112.5 to 125 actually reduced my heart rate noticeably and I have significantly fewer times when it rises to silly levels. I don't have my FT4 to hand, but certainly nearer the top than the middle of the reference interval.
Hashihouseman The study only includes people not on thyroid hormone replacement and so not applicable to mill44 .
All patients in the Intermountain Healthcare electronic medical record database with an fT4 level not on thyroid medication were included.
Let me know if course if I’m missing something in the links you provided. Afib is complicated of course but trends in studies most often differentiates risks for low TSH and high ft4 when caused by hyperthyroidism vs exogenous thyroid hormone replacement.
And of course there are many studies so obviously share others as well are all here to learn.
as soon as someone is on thyroid replacement, which is bio identical, they become subject to the same effects of the hormone, particularly beyond the margins, for example over treatment of hypo causes exact same symptoms as pathological hyper. And if that sentence seems contentious just note that the authors of this peer reviewed published study concluded the evidence in their study and others warrants review of thyroid hormone replacement treatments because of these risks…..
Treatment of thyroid patients as if they were completely abnormal and would never be normal is part of the problem. Treatment should be squarely aimed, at least initially, at the very tight margins of healthy euthyroid normal and if that cannot be achieved with T4 alone then T3 is indicated. T4 is often used like a sledgehammer to position the tiny nut that is thyroid allostasis……..
None of us here have any issues with contentious forward thinking science. With this bunch it’s the opposite.
If you have any study links that support your points I know there would be a sincere interest in them. I know I haven’t seen any, but I also haven’t looked.
assuming you tested as recommended …..early morning, ideally just before 9am, only drink water between waking and test and last dose levothyroxine 24 hours before test
Ft4 is now too high
So yes, increase has not done you any good
Reduce dose back to 112.5mcg initially….cutting 25mcg tablets in half
It can be hard to tolerate reducing dose so don’t be surprised if you feel worse
Then retest after 8-10 weeks
Likely to need to reduce to 100mcg after that
How much do you weigh in kilo ?
Which brand levothyroxine is your 100mcg
Which brand is 25mcg
Then look at getting T3 prescribed alongside levothyroxine ….essential to maintain GOOD vitamin levels too
What vitamin supplements are you taking
When were vitamin D, folate, ferritin and B12 last tested
Here’s link for how to request Thyroid U.K.list of private Doctors emailed to you, but within the email a link to download list of recommended thyroid specialist endocrinologists who will prescribe T3
Ideally choose an endocrinologist to see privately initially and who also does NHS consultations so that might eventually transfer to getting T3 on NHS
Thank you all for your very prompt replies. I only took the extra levo for 3 months (Feb to April) and went back to 100mcg when I got the test results in April, particularly in response to the low TSH and high T4. So have been on 100mcg for the last 6 months. I had hoped that the gp test would do T4 as well. It looks like I will have to do my own. It was the fact that taking extra did nothing to raise my T3. It stayed roughly the same. Would you say that T3 at that level should be enough for me. Would trying a drop in levo make any difference do you think? Sorry to be a nuisance but I know that is what the gp will want to do.
All MMH tests were done 8 -8.30am, last levo about 7am the day before and only water before.
The GP test on 31/10 was done at 10.15am. No levo that morning before and only water before.
I will look into finding an endo privately though.
TSH has two jobs, to stimulate the thyroid to produce hormone and to stimulate the conversion of T4 to T3. By increasing your levo you reduced the TSH and inadvertently reduced your already bad conversion of T4 to T3. Your TSH levels haven’t risen back to your pre-experiment level.
Yes your doc is likely to want to reduce your levo. Hold your ground, say you still have hypo symptoms and get them to retest TSH but include T3 and T4 this time, point out that TSH is a pituitary hormone, whatever you need to say to get them to retest, tell them you had a cold, something, anything that might impact results. Once that’s done, if your T4 is still near top of range and T3 near the bottom then you’ll have evidence for a referral for liothyronine, or if they refuse that at the very least you’ll have evidence for the levo dose not to be reduced.
What ignorance I have been living in. I never knew that TSH helped in the conversion of T4 to T3. My TSH levels have always been low but have only once before had the gp question it and I did say that I would forcefully fight to keep it at that level so they left it at 100mcg. My T4 has also been at the upper end of the range. I did expect the lab to have tested my T4 due to the TSH result. I had hoped that after 6 months of reverting back to my prescribed 100mcg things would have looked better. I shall make the appt with the doctor and see if he/she knows anything about thyroid other than to read a lab reference range.
as well as the issue of TSH helping conversion of T4 to T3 a little , the fT4 level itself also has an impact on conversion.
T4 to T3 conversion is done by the deiodinases. and they can either convert T4 to T3 (active ) .... OR they can convert T4 to reverse T3 (inactive)... how much T4 is converted to T3 or Reverse T3 is dependent (partly) on how high T4 levels are .
when fT4 is over a certain level, the deiodinases will 'choose' to slow down the rate of conversion to T3 and increase the rate of conversion to reverse T3 (to try and get rid of 'too much' T4)
so by increasing your levo dose when fT4 was already at the top of the range,,, you actually worsen the conversion .... albeit only slightly.
Edit ...
Some of the articles on this site from thyroidpatientscanada might help your understanding , perhaps try this one for starters... if it's not the right one, have a poke around their site menu (look under 'blog ~browse topics' ) : thyroidpatients.ca/2021/08/...leaky-buckets-analogy-thyroid-metabolism/
Your TSH shows you were overdosed, but I know how tempting it is when you are feeling rough to try anything. You are a bad converter. You need to drop your T4 and up your T3, but the GP will not understand that.
They only tested your TSH which is wrong, as if the TSH is out of range, they are supposed to test the T4 - its their policy.
You could try coming clean to your GP and say you were feeling so rough you took a bit extra but now understand that was not the right thing to do so have dropped your dose, and need to delay your blood test until the rise is out of your system.
Or you could say you were taking biotin, which alters the results, you had an infection somewhere (ear?) which alters the results, you had taken your levo an hour before the test...
Personally I would come clean and ask for a full blood test to include vitamins, iron, the full thyroid panel, etc and say you think "something else is going on", as you are feeling so ill and would like to rule out anything else. Delay the blood test for a month if possible to give you a more accurate level, see if there are any gaps in your vits etc, and then seek out a supply of T3.
The GP may want to send you to an Endo, but the waiting time is ages, months, which when you are feeling ill, seems like years. Worth agreeing, you dont have to go nearer the time.
If they make you feel intimidated, imagine them naked and scratching their bum. I find this helps. Good luck!
I also expected them to have tested the T4 in relation to seeing the out of range TSH. It has happened before. I shall make the appt in the hope that he/she might understand that results are not everything. How did my Nan get treated before her doctor could use a blood test result? The answer being that he listened to her.
I would like to thank everyone who has helped me increase my understanding of hypothyroidism. I have a telephone appt with a gp on Monday and see where the land lies after that.
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