My GP says she "prefers TSH not under 0.5 in the more mature patients" for obvious reasons - AF, stroke, osteoporosis. I will be 69 in December. Do you think this is sensible advice or would you go with a lower TSH if you feel better?
Basically she upped my Levothyroxine from 75mcg to 100mcg and I was much better. After 3mths tested only TSH which was 0.34 (0.35-5.5) so dropped Levo to 100mcg 4 days and 75mcg 3 days. 3 weeks of this and I'm crap again so have rang the surgery and left a message for the GP to increase Levo. On Monday I will do a full Medichecks test.
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Maggiesmum
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NHS guidelines use this study as part of their evidence of risks of low tsh, but it seems they only read (parts of !) the conclusion, not the full results in detail. And so manage to use it to say something it doesn't say at all .
So if i were you i'd not be worried by TSH 0.34 and tell GP you prefer 'Quality of life in the more mature patient's' to worrying about a small statistical risk.
Thanks Tattybogle, I'll be reading this afternoon although I know which option I prefer!
Unfortunately there's only 1 GP practice here and all the other GPs refused an increase. The 'new' GP is overactive herself so at least has an interest and I want to keep her on my side.
The more pertinant issue about overmedication is whether your FT4 and more importantly Ft3 are over range....... but even Ft4 over range is a matter of risk vs benefit, and the one that really matters (FT3) they won't often test.
My Ft4 is currently very over range (about 200%) and GP said 'you'll die' ....... i havent.
I'm 54 and TSH has been 0.05 ish for about 17 yrs
There are some increased risks of AF for over range FT4, but if they won't give me any T3, i'll get it this way rather than not be able to function.
I did have to have a very 'heated discussion' with GP to be allowed to stay on dose i'm on, and he's written i understand the risks on my notes to cover his back.
What a silly thing for your GP to say “you’ll die’; of course you’ll die, we all do but it is the timing and manner which are important, and the quality of life in between.
poor man did look really terrified when he said it, but i think that was more to do with him realising that i knew how to interpret TFT's and looked like i might be about to mention T3 as a solution.... i didn't mention T3 yet, I'm waiting for him to get over the shock of me still being alive with 0.05 TSH and 200% FT4 first.. but it is going to be really hard to not go to appointments humming na na nanana in future.
Do you not feel bad on so much T4? When I was on 150mcg of levo only with my T4 and T3 the highest they'd ever been, I felt terrible! Is it a very individual thing?
My dose is only 112mcg , for many years i was on 150. then 125. My fT4 has varied between 50% and 110% on all these doses, with TSH same as it is now (0.05ish)....... Go Figure ?! It's odd that my fT4 is currently so high , but the only time i ever was actually overmedicated (with symptoms) my TSH was 0.018 and fT4 was 119%.... so fT4 at that time was much lower than it is now, which is even odder
reducing dose fom112.5 to 100mcg leaves me constipated and feeling worse and barely functioning at all.
If there was any common sense in thyroid treatment my levo dose would be reduced and a small amount of t3 would be added instead..... LOL
If i had any money i'd be doing that myself already, but i don't, so i'm taking the 'long road' to get T3 out of the NHS. If i mess with my bloods before i've proof that trying things their way doesn't work i don't think i'll ever build a case to get any T3.
I couldn't wait any longer and got the T3 myself. It has changed my life. I have an appt with an NHS endo from the Thyroid UK list in a few weeks. I'm aware they might refuse to take over prescribing it, either because of the usual reasons or even because I took matters into my own hands, but I really can't see how they could argue that because my symptoms had resolved on a private supply of T3 that I somehow didn't need T3. The years of appts about depression, PMDD, menorrhagia, exhaustion and brain fog plus awful blood results which have ALL resolved in one month of T3 should prove beyond any doubt that T3 is needed. I'm sure it would be the same for you but I understand money being an issue. Maybe you could try crowdfunding it to raise the money and then buying online without prescription from the US (that's where I ordered my supply from). I'll let you know what my NHS endo says but if they try to tell me I don't need T3 I will absolutely lose it with them because the difference both in how I feel and my blood test results since taking it one month ago is amazing!
Thank you for your kind reply, and it's really encouraging to hear how much better you feel.
It is taking quite a lot of willpower to not just get some and try it myself, but i've got 'an understanding' with my GP, and he's 'out on a limb' letting me keep dose this overrange. I think he was previously of the opinion that i was taking more than prescribed, so having assured him that the results he's seeing are the results for his dosing, i don't want to end up with him thinking i'm doing my own thing .... not yet anyway..... but don't worry , if i don't get what i want out of this, i will very definitely be doing my own thing ( even though i'd have to sell the family silver!)
I'n not in any hurry ,,,,,,, if this works i can look forward to another 20 odd yrs of decent life, and if it doesn't it makes no difference since, i've already had to 'retire'
Hope your Endo turns out to be one of those with a brain and a backbone
It really bothers me that you have to refrain from trying something potentially life-changing just to appease your GP. He doesn't have to live through the symptoms like you do. It's so unfair. What has he promised next if you continue to feel bad? How many years of your life do you have to throw away in order to satisfy your GP? I know I'm using strong language here, I'm not trying to criticise your approach – I really respect and admire how you are able to accept the situation and be patient, but honestly I don't think it's worth losing years of quality of life to keep this man happy. Sometimes getting angry and deciding to do things your own way is how you get to live a good life. Has your GP even referred you to an endo?
I've been waiting on112 mcg for a 6 mth blood test which is in a couple of weeks time, So i expect me and said GP will be having another 'interesting ' conversation about he results, which i'm sure he's not looking forward too.
He's not in charge of this , i am , and at the moment i'm letting him 'paint himself into a corner' if you know what i mean. I'm not 'keeping him happy' , he's far from happy about any of it. And he's about to be a lot less happy when he realises i'm after T3 (which would ultimately end up coming out of his budget)
The event's of the last 5years have given me a rather different perspective on time than most people , so i know it must seem odd that i'm sitting so quietly and waiting, but once you've already accepted your life is different, it's actually quite nice to slow down and smell the roses. and i live next to a nice beach
I, too, have a TSH obsessed GP and we've had many discussions about my suppressed TSH (always <0.02, sometimes <0.005 depending how low the lab's machine measures). It doesn't matter how many times I point out that my FT4 and FT3 are well within range and that these are the thyroid hormones and that TSH is a pituitary hormone, she refuses to listen and just goes on about suppressed TSH and overmedication. My TSH has been suppressed for many years and it's unlikely to ever come back into range now unless my FT4 and FT3 flatline. I refuse to be made ill (been there with an endo and wont be going back to feeling like that again).
You might be interested in some previous posts about the "risks" and look for posts by Diogenes (advisor to ThyroidUK, researcher, scientist)
The allegation that suppressed TSH can lead to osteoporosis is largely based on the situation in true hyperthyroidism, where TSH is suppressed and FT3/4 above normal. In such cases OP is definitely a problem (among many other things). The situation on treatment is quite different with perhaps suppressed TSH but normal FT3/4. It's often impossible to undo the suppression by whatever treatment. However a best solution I have sen in papers by Leung, suppresed TSH in such situations may add up to 1 extra fracture per 1000 patient-years. Not a big problem in my eyes. The upshot is whether you wou ld like better health over your life, and risk the very small chance of OP (due to supressed thyroid) later on. Otherwise you would have an unsatisfactory state of health with inadequate treatment.
The alleged link between osteoporosis and low TSH is very open to challenge.
Two recent papers might be of interest:
1) Papaleontiou M, Banerjee M, Reyes-Gastelum D et al. Risk of osteoporosis and fractures in patients with thyroid cancer: a case-control study in US Veterans.
The Oncologist 2019;24:1166-1173. doi:10.1634/theoncologist.2019-0234
2) KIM EH, Jeon YK, Pak K, Kim IJ et al. Effects of thyrotropin (TSH) suppression on bone health in menopausal women with total thyroidectomy.
J Bone Metab 2019;26:31 doi:10.11005/jbm.2019.26.1.31
The first paper showed that the effect of low TSH on bone health was small compared with influences such as female gender and older age and the lower TSH was only associated with osteoporosis but NOT frequency of bone fracture.
The second paper on postmenopausal women with thyroid carcinoma showed that bone scores were lower compared with controls, but did not change in 4 years of TSH suppression by T4 treatment, and nor did bone mineral density by DEXA scanning.
Other papers eg by Angela Leung have shown that with suppressed TSH, the actual incidence of osteoporosis rose only as 1 extra fracture per 1000 patient years,
The extra risk of OP over that caused by menopausal influences is tiny.
1) Risk of osteoporosis and fractures in patients with thyroid cancer: a case-control study in US Veterans.
The link between TSH, FT4 and FT3 in hyperthyroidism is very different from taking thyroid hormone (T4) in therapy. In hyperthyroidism, FT4 and FT3 are usually well above range and TSH is very low or undetectable. In therapy, FT4 can be high-normal or just above normal, TSH can be suppressed but FT3 (the important hormone that controls your health) will usually be in the normal range. FT4 and TSH are of little use in controlling therapy and FT3 is the defining measure. A recent paper has shown this graphically:
Heterogenous Biochemical Expression of Hormone Activity in Subclinical/Overt Hyperthyroidism and Exogenous Thyrotoxicosis
February 2020 Journal of Clinical and Translational Endocrinology 19:100219
DOI: 10.1016/j.jcte.2020.100219
LicenseCC BY-NC-ND 4.0
Rudolf Hoermann, John Edward M Midgley, Rolf Larisch, Johannes W. Dietrich
I am slightly older than you, we have a choice to either kowtow to a doctor who hasn't done any research and is giving you false information, or be determined to be as well as possible in the time we have left in what is the autumn of our lives. I refuse to allow anyone to make me feel ill again so I wont be reducing my thyroid meds just to satisfy a doctor who wants to see a number where she likes it to be rather than take into account how I feel and keep up to date with thyroid research.
Thank you SeasideSusie, especially your last paragraph. I spent the last 3mths feeling better than I have for a number of years only to go back to feeling rubbish the last 3 weeks. I intend to make the most of my time left, especially as I have no children or siblings to worry about!
When discussing T3 with the Endo, during my mega-mega long appointment, ending with the T3 trial, the Endo talked about how horrid spontaneous osteoporotic fractures are.
My response was that surely I would be monitored to assess bone health and to be honest, I'd rather have a good life, living it well, enjoying my travelling and sailing adventures than sit around, getting depressed waiting for something that might never happen.
Honestly, when my time comes (not for many years to come, I hope), I'd like to be able to look back on my time and think, "I gave that a good shot", than wishing I had done more "when I was able".
He nodded and agreed that was a fair stance.
Right now, I see myself able for all sorts. In fact, I'm currently plotting how I will keep my activity levels good and high during a cold UK winter, when we are used to heading for the tropics. I have even considered going back to (proper) work....
SeasideSusie your quote above: "Other papers eg by Angela Leung have shown that with suppressed TSH, the actual incidence of osteoporosis rose only as 1 extra fracture per 1000 patient years. The extra risk of OP over that caused by menopausal influences is tiny."
I have searched hard for a paper by Angela Leung saying this but cannot find it anywhere. Do you have it by any chance? Thanks!
My TSH has been practically undetectable for the last 7 years... I check my ecg on my watch daily which never shows any AF at all and my last DEXA scan (December last year) showed no signs of osteoporosis. I take 45mcg T3 (in two doses 25mcg at 6 am and 20mcg at 4.30pm) and 25mcg T4 at bedtime.
I have been in charge of my own dosage for years and I only attend an annual endo appointment to get the next year’s supply of T3 authorised.
I adjust my dosage (up or down) according to how I feel and also do my own blood tests to monitor my levels and as long as my FT3 levels are good, I’m happy.
I also supplement with Vits D, K2-MK7 and C, the Igennus B Complex, zinc and folate and to quote our esteemed🤔leader, feel as “fit as a butcher’s dog”!
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