Hi, I have been on Levo since Feb 2012 eventually after a couple of years I found a dose that I could manage on. When I say manage, I mean get out of bed and function. My gp was happy with the dose even though my tsh was suppressed.
Then i move house and change gp. For a further 5 years my medication was left alone with a slightly suppressed tsh.
Along comes a new doctor, telling me I needed to reduce my levo. Anyway due to my parathyroid I was referred to an endocrinologist.
I was told that I had to reduce my levo for the following reasons, it can cause problems with my heart and reduce bone density.
My TSH was <0.05 and FT4 21.4 at the end of Sep my TSH was <0.05 and FT4 16.2
For the last 3 months I can hardly function and I explained this to my gp, she has written to my endo to request further action as my appointment isn't till December.
What are the risks of supressed tsh? I feel my mental health is more important and it is not good on this lower dose due to all the symptoms.
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There are no risks. TSH has nothing to do with bones or hearts. This is either a misunderstanding on the part of doctors, or a deliberate ploy to keep hypos under-medicated.
If your TSH is low/suppressed it's because your pituitary considers you don't need it any more, and has reduced/stopped production. Would it do that if your heart and your bones needed it?
Here is a collection of links to articles that may help you convince your doctor that she's wrong:
Doctors dont seem to understand that a suppressed TSH due to being on thyroid replacement, with in range FT4 and FT3 is not the same as being hyperthyroid with often very high levels of thyroid hormone.
Yes being hyper can be a serious health issue which is why patients are often prescribed thyroid lowering drugs and are seen by Endos. And yes being hyper can cause issues with hearts and bones. But us hypos with low or suppressed TSH seem to been have lumped in with the genuinely hyperthyroid and as result we get GP's panicking and lowering our dose.
The risks of a supressed TSH are mainly due to high thyroid hormone levels, fT3 or fT4. In general TSH gives a good reflection of overall combined fT3 and fT4 effects. This is how the axis is designed to work. Levothyroxine monotherapy distorts this a little.
TSH stimulates bone formation but my impression is that this is a very minor effect in practice.
This study doi.org/10.1210/jc.2009-1625 shows the adverse effects associated with a high or low TSH for patients on levothyroxine monotherapy. Unfortunately, it is now behind a paywall but you can get a good idea from Figure 1 and Figure 2 here semanticscholar.org/paper/S... . Note the association between cardiovascular disease / osteoporotic fracture and a supressed TSH. The risk is real but not large. This study also shows that a high TSH carries much greater risk but this is never mentioned by doctors.
Studies like these have subjects who in general have a normally functioning hypothalamic pituitary thyroid axis. i.e. their TSH is truly reflecting their fT3, fT4 levels. In some cases TSH can remain low even though fT4 (and fT3) have been normal for quite some time. i.e. TSH is not reflecting thyroid status. Unless your fT3 is high (I doubt it) then a TSH of < 0.5 does not reflect an fT4 of 16.2 (assuming a typical reference interval e.g. 10.0 - 22.0). So, your TSH is not strictly speaking 'suppressed', it is just low because your pituitary is not secreting enough TSH.
I feel that in cases like yours you should go by fT3, fT4 rather than TSH. Even so it may not be possible to get better with ideal fT3, fT4 levels. In which case you will need higher levels and will have to accept the associated risks, which are not great. This happens all the time in medicine, compromises between therapy and risks. Also, knowing these small risks you can make efforts to reduce them by exercising to protect your heart and bones - something you can't do if you are not adequately medicated.
As an aside I have posted about substantial cancer and cardiac risks associated with high normal fT4 levels. My view is that we should receive a little T3 so that we can get better with an fT4 in the lower half of its reference interval.
EDITED. I suspect a large part of the cardiovascular risk associated with a supressed TSH is due to higher fT4 levels. T4 is doing much of the harm not the overall thyroid hormone levels.
Hi, thank you very much for your reply, maths is not my good point is tsh <0.05 the same as <0.5? I was walking my dogs 3 miles a day and keeping the house clean, but now I'm only walking 1 mile a day and the house work is very hit and miss. Meals are definitely less healthy. What you're saying makes sense. Thanks
No. 0.5 is 10x as big as 0.05. It's unlikely you would get a result of "<0.5" because modern TSH blood tests can measure lower values. The "<" sign is used when the result is below the lower limit the assay can measure. In your original post you wrote "<0.05" both times. It's not clear whether your last result is from September. Perhaps give the two results again exactly as they are written on the results page, with the reference intervals (numbers in brackets) if there are any.
Thanks for this Jimh111. Got full paper via the semanticscholar link above as it can go to BMJ publications not behind a paywall. The suppressed figure of TSH under 0.4 isn’t exactly low, mine is in the 0.02-0.03 range , and I have just been threatened by my Gp with the ‘ A.fib, osteoporosis…even death’ speech from being ‘overmedcated on levothyroxin’! I have taken 100 mcg Levothyroxine and 5x3 mcg T3 for last 6 years, and previously even on levo.monotherapy never got a TSH above 0.175… how does, to quote you above, ‘TSH give a good reflection of combined FT4 and FT3 effects’?
Not sure you got the same paper? This doi.org/10.1136/bmj.l4892 is a similar paper that shows the risks of a suppressed TSH, they are there but quite low. It would be useful to show your doctor. Mortality is nealy 20% higher but again I suspect this is due to fT4 being above average rather than TSH being low. Fractures are not increased which doesn't surprise me as a well treated patient is able to get about and exercise building up bone strength.
TSH is reduced by T3 acting on the pituitary. The pituitary is very good at converting T4 to T3 so it responds to T4 also. Thus, the pituitary responds to the combined effects of T3 plus T4 - provided the pituitary is functioning normally. Your 100 LT4 + 15 LT3 equates to about 145 mcg levothyroxine which is not a lot but could be enough to suppress TSH.
It is more important to get you able to function reasonably normal rather than meet 'ideal' TSH, fT3 or fT4 figures. If you are effectively kept disabled you will not be able to lead a healthy lifestyle (or have any life). This carries a lot more risk than mildly high thyroid hormone levels. I suggest you show your doctor the graphs in this paper doi.org/10.1136/bmj.l4892 and tell them you are aware of the small risks and you want to continue with an effective dose of hormone, then you can exercise etc. to mitigate any potential risks.
Sorry yes you are right two different papers, tho content not hugely different and both have the same researcher from Birmingham re correspondence. I did look at the page of graphs but I could not get their titles up properly so wasn’t 100% sure what the two axis were supposed to show. My Dr has already been told my quality of life now is more important than the remote fact I might get heart problems, and as you say the ability to actually do my 5x a week swimming probably keeps me in the ‘far more active than many 70 year olds range’!
“It is more important to get you to be able to function reasonably normal rather than meet …” Glory hallelujah jimh111! You have simply stated the absolute truth of our situation.
If only doctors could see past their idiocy in keeping this from happening. It’s the true difference between illness and health. Health is missing entirely from their perception/vocabulary. They perform their work without any acknowledgement of this vitally important factor.
When did attaining ‘health’ become OK to leave out of the equation?
Thank you, yes I totally agree. I just want to be able to walk my dogs and potter around the house and do some knitting. I've accepted I have several chronic illnesses and that working, socialising and being active is a thing of the past. What I want is some life.
Once on any form of thyroid hormone replacement it is essential that you are dosed and monitored on your Free T3 and Free T4 readings / ranges and not a TSH - though fully appreciate a TSH is all most doctors have to dose and monitor you on.
T4 is a pro-hormone and needs to be converted in the body into T3 which is the active hormone that runs your brain and body -
and too low a T3 for you will cause mental, psychological and emotional and spiritual health issues as well as the usual more obvious issues of tiredness and weight gain.
No thyroid hormone replacement works well if your core strength vitamins and minerals - those of ferritin, folate, B12 and vitamin D are not maintained at optimal levels - and with hypothyroidism and a slowed metabolism - these are often needed to be supplemented as we can have digestive issues extracting same - from our food, even if we eat clean and healthily.
Many forum members run their own thyroid blood tests to see how well they are converting the T4 into T3 - and post their results on the forum and are talked through their next best steps back to better health.
Thyroid UK - the charity who supports this forum has a page dedicated to Private Blood Test companies who can run the necessary bloods and initially suggest you arrange a venous blood draw for a full thyroid panel to include the vitamins and minerals and inflammation and antibodies - along with the TSH, Free T3 and Free T4 - and so that is around 10/11 biomarkers and gives a base with which we can start from and work up from. thyroiduk.org
I choose Medichecks and arrange a nurse home visit to draw my blood as a yearly update for myself - its more expensive but less stressful and suits me as I live in a rural area without anything being on my way to anywhere.
It is a fasting blood test to be done by around 9 am and you take your T4 for that day after the blood draw - so leaving around a 24 hour window from your last dose.
If taking any supplements - in order to see what your body is holding - rather than just ingested - stop all supplements and anything containing biotin ( can mess with laboratory assays ) for around a week before the blood test.
Ideally if you arrange your appointment for the beginning of the week - you should have the results back by the weekend - so the sample isn't stuck in a post box over the weekend, congealing.
Once with the results and ranges simply start a new post on the forum and you will be talked through what it all means and offered considered opinion as to how to improve your health and get back on track with a real smiley face on the inside and out .
P.S.
This is where we all start our thyroid health journey and learning how to best advocate for ourselves and this forum is pretty much made up of people who came on here asking similar questions to you - and now - give back - as a way of a ' thank you ' - by helping others who find themselves in a similar situation.
Thank you for your reply, I have got Monitor My Health Test kit, (TSH, FT4, FT3) I've not fully unpacked it as the thought of collecting the blood myself fills me with dread. Surely it shoudn't be too difficult!!
You say you have a nurse come in to draw blood is there any other way of having blood taken without involving your gp?
I do take Vitamin D 800IU a day with 400IU of adcal a day to keep my Vit D levels up. My Vit D is always at the lowest point of the range, perhaps it needs to be at the top of the range?
I don't involve my GP - haven't done for 6 years -
the nurse works through Medichecks and why I use this particular company - so there is no stress - and my main issue with all of this -
I think Blue Horizon also offer a similar nurse home visit service -
and between them - Medichecks and Blue Horizon can offer the nurse home service throughout at least, England, and you select the nurse home visit option before you complete the purchase - last time this cost me an extra £55 but it's worth it to me , once a year as I self medicate and do not go the NHS doctor for my thyroid medication.
Well if you know your vitamin D is always at the lowest point in the range you could increase the strength level of the dose you take -
but it's better not to supplement anything until you know your actual levels as then we can advise on a strength of dose that will be suitable.
I now know I need to maintain my ferritin at around 100 - folate at 20 - active B12 125 ( serum B12 500++ ) and vitamin D at around 125.
your TSH has remained at 0.05 irrespective of reductions in T4 - and just shows the ridiculousness of dosing and monitoring on a TSH test is if - seen in isolation -
however you have T4 readings there showing you % through the range reducing -
why doesn't the GP see this as an issue - ???
please check my maths for yourself - as I don't use a calculator but my head !!
2022 your T4 was at just 50% through the range -
then in 2023 I'm getting it at 65% and then 68% -
and now 2024 just 40% through its range :
and the lower the T4 the lower the T3 and its low T3 causing all the symptoms of hypothyroidism -
no wonder you feel as you do - as we generally feel best when the T4 is up in the top quadrant at around 80% through its range with the T3 tracking just behind at around 70% through its range.
Ps. Is there another doctor in this surgery - as this doctor is making you ill ?
Well, I'd be inclined to ask for a second opinion, but of your choice, as I believe we still have this option -
Thyroid Uk the charity who support this forum hold a list of recommended thyroid specialists and endocrinologists - NHS and private - maybe email admin @ thyroiduk.org for this list and see if there is anyone there within travelling distance - and many still offer video consults -
Looking back I see you also have hyperparathyroidism - I do not know how this plays into your treatment regime - but your T4 is much too low to function on.
Thank you for your support, I haven't even considered my hyperparathyroidism playing a role in it. I think I will do a new post and see if anyone on here have both. Thanks Liz
This post contains links to papers showing why 'supressed TSH while taking levo' does not always mean the same thing as 'supressed TSH due to being hyperthyroid' :
This post contains links to papers showing the risks for TSH between 0.04 and 0.4 were no greater than for TSH in range , and also links to some good discussions on the subject of 'Low TSH / Risk vs Quality of Life :
I have been in a similar situation like you a few year back. Same reasoning by GP: TSH suppressed (although this has been since the start of my therapy!), but T4 and T3 were within the ranges (around 80% through the ranges). Felt perfectly fine, lots of energy and very active. Was asked to reduce my levo by 25 mcg as I was 'overreplaced'. I got GP to accept a 12.5 mcg reduction (so 25mcg less every other day). After 3 months, I felt awful.
It did nothing to my TSH (was still suppressed), but my T4 reduced dramatically and T3 as well. I could not function, hair loss, anxiety, depressed, weight creeping up, lack of energy etc. They even sent me to an endocrinologist, same blah blah, osteoporosis blah, atrial fibrillation blah, and wanted to reduce my levo even further! I read up on lots of publications and decided to ignore all this. After going back to my original dose I feel well again, got loads of energy, weight came down again and I can exercise (doing on average 4 miles a day).
The TSH reference range was established in HEALTHY individuals. The TSH is a good tool to detect hypo or hyperthyroidism, but as soon as you replace with synthetic hormones, this feedback loop does not seem to give accurate results any longer. And if you think about it, your thyroid is no longer working as it should be, so why would your TSH feedback loop be working properly? It might, but then it might not! And if it is not working, how can you then rely on a dosing that is based on a wrong assumption?
I have seen that your GP has not measured T3. From your results it shows that the T4 values are going up a bit, which could mean that you might not convert much of your T4 into T3 (the active hormone). But without any T3 values it is difficult to say. As others have suggested, I would test TSH, T4 and T3 to get an accurate picture. Also, if you are low in Vit D, 800IUs will not get you higher up. Most people here supplement with much higher doses. I am supplementing all year round with 3000IU + K2 + Mg, which pushed my Vit D levels to 125 nmol/l. Interestingly, haven't had a cold or infection for ages (touch wood!).
Vitamin D3 should always be taken with Vitamin K2, also known as menaquinone, which is a fat-soluble vitamin that plays an important role in bone and cardiovascular health. With the addition of Vit K2, the calcium from your food gets absorbed into your bones and does not stay in your blood vessels. And Mg means magnesium, this should also be taken with the Vit D and Vit K2, as it is a co-factor and helps with absorption and bioavailability.
800IUs you have been taking are just above the daily recommended allowance. So if you have absorption issues and your levels are fairly low (and many people with hashimoto's have difficulties with absorption), you will not get much Vitamin D into your system to raise your levels significantly. Some years ago, my Vit D level was 65nmol/mol - similar to yours. I have continuously taken 3000IU +VitK2 + magnesium for a whole year every day, and my levels finally went up to 96nmol/l. I continued for another year, and my levels are now 125nmol/mol. Doses up to 4000IUs daily are considered safe, so I would try to take at least 3000IUs (plus the K2 and Mg) for a good length of time and then test again to see when you are.
For me during this time of the year, a good Vitamin D level is essential - since my levels have gone up significantly, I have not had a cold or respiratory infection. My bones might ache for a couple of days, but that's it.
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