First off i don't have an Endocrinology, so can give you only very limited amount of stats. For the past 10 years i have had hypothyroidism, without too many problems. Since mid-2020 i have had symptoms of urinating a lot, thirsty, weight loss (35 pounds in total) and stomach issues. After doing alot of blood tests they found that i was over-medicated for about a year on 150mg and my TSH level was 0.17. Was put down to 125mg and after 8 weeks my results were 4.1. The first two weeks were fine but since then for the last 7 weeks i have had headaches, feeling hot, pressure in head and the big one is bad sleeping problems, including not being able to go to sleep at all.
As its been almost 9 weeks now, i don't think my body is still adjusting, but i feel like i'm still over-medicated. I have asked the doctor to go down to 112.5mg but not sure if that's going the wrong way? Does anyone have any ideas what might be going on?
Thanks
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BlueRainArt
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Does anyone have any ideas what might be going on?
My guess is Lazy GP syndrome - sadly very common. This happens when a GP can't be bothered to do the blood tests you need and goes entirely on TSH ...
You are ONLY over-medicated when free T3 is over-range - not if TSH is under-range. So you are now likely very under-medicated - as indicated by your high TSH - and really need full blood tests doing. That means - at a minimum - TSH, free T4 and free T3 [as an early morning, fasting blood test 24 hours after the previous dose of levo} and, if you can get them, also key nutrients testing - ferritin folate, vit D and B12. And it's prob also worth testing thyroid antibodies - as if you have Hashis (and the vast majority of hypo people do) that can cause your blood results to jump about a bit, so it's useful to know if that can be expected.
I've had some success with my (fab) GP in getting all these tests on the NHS by saying that these are the tests recommended by Thyroid UK - but if s/he won't, it's worth getting them done privately. You will see LOTS of posts here about private blood tests - discounts are available on the main Thyroid UK website. Good luck x
You mention hashimotos, which i know nothing about apart from its a problem with your immune system rather than the thyroid itself. This may be a stupid question but can you go from having 10 years (well until very recently) of stable thyroid levels to developing hashimotos, or are you saying it could have been hashimotos all along? The only reason i ask is because i would imagine people with hashimoto would have to keep increasing there dosages as the thyroid gland gets more and more damaged.
Hashi attacks can be frequent or years apart. Sometimes down to a big life change, a hormonal change but there are lots of other triggers such as gluten intolerance.
It could be that you are experiencing Hashi attacks which can feel like you are over medicated and tests results can misleadingly look as if you are over medicated by the high thyroid levels suddenly released and the resulting lower TSH level.
The only way to assess what is going on is to have FT4, FT3, TSH, and thyroid antibodies TPOAB & TGAb tested. Hashimotos is the most common cause of hypothyroidism and eventually will destroy the whole thyroid gland necessitating thyroid hormone replacement dose increments.
Undermedication can feel identical to over medication. It causes a lot of confusion. I think it’s unlikely you were ever over-medicated but doctors have a knee-jerk reaction to low TSH levels and make faulty assumptions all the time—it’s scarily common. I’d say you were definitely under medicated now but to be sure you need more tests—you need an FT4 and an FT3 level doing, as well as TSH. If your doctor won’t do these tests then you can arrange to have them done privately.
Thanks i never though it could be the over way around. One weird thing is that before i went up to 150mg in late 2019, i was on 125mg for many years, and i don't thing my TSH level was as high as 4.1, although i don't know for sure.
Have you had any blood sugar tests, eg Hba1c? Sounds more like diabetes than overmedication with thyroid hormones (if you TSH is 4.1 you are almost certainly undermedicated)
Yes i had a diabetes blood test done on January, don't know what it was called, it was just a normal blood test, none fasting. That came back fine, which is a relief as that one was of the first things i thought it could be.
I'd say ....just going on TSH .. that your next step should be to try a dose of 137.5 for a couple of months .Obviously it would be better of we knew what ft4 (+ft3) was up to, but.... TSH was
? 'Less than 4.1' for years on 125mcg,
dose increased to 150 mcg in late 2019.
weight loss and frequent urination from mid 2020 (i think increased urination is an overmedicated sign for me, as is 'odd' stomach pains)
0.17 on 150mcg ,
dose reduced to 125mcg.
4.1 on 125mcg , OK for 2 weeks , then 7 weeks still feeing naff..
So your TSH certainly does seem to think you are a bit undermedicated now, and even though feeling hot is normally associated with over medication , i think it can also be a bit of a red herring sometimes, as can not sleeping.. if you are like me , then any change in dose messes all sorts of things up for many weeks while my system accommodates itself to the change .
If it was me on the information you have at the moment .. i'd go with what the TSH is saying and try increasing dose a little , but not as much as 150.
My thinking is that if 150 was only slightly too high a dose , it would make sense that it took several months to build up to be a problem.
Out of interest , do you have the actual results that caused them to increase the dose from 125 to 150 ?
It's not certain just from a TSH of 0.17 that you were overmedicated in the first place , but if lowering dose improved the frequent urination, and stomach issues , then it may have been the case, but it could be that 25mcg was slightly too much of a reduction.
See if you can get GP to at least include fT4 tests until you feel better again .. it's so hard to know what's really going on when you're only getting TSH results.
(For example...I may have needed a reduction from 125 to 112.5 as my fT4 was very over range, then it was reduced again to 100 and i ended up constipated , so increased back to 112.5 which is better than 100mch , so it is possible that such a small change makes a big difference )
I'm going to try and get hold of my medical records, so i can see what my previous TSH levels where, is this easy? Can i do it online?
In terms of why i when up from 125 to 150 was because i complained to the doctor (different doctor to recently) that i still had problems with fatigue and brain fog and he was understanding and said my figures where good but there is quite a bit of variation between what figures are best for individuals, so he said we could try on a higher dose. Was meant to have a blood test some point last year to check figures, but with COVID and everything i forgot and never really thought about it.
I must point out that my fatigue and brain fog might have been nothing to do with my thyroid as i also have depression and depression causes these as well, so i was just trying out a higher level just to see.
On the other hand , .....depression is a symptom of hypothyroidism, as is fatigue and brain fog
There are a couple of way's of getting hold of past results... i did it 'old school ' cos i don't really do online anything.
I filled in an SAR form (Subject Access Request)which i got from reception ( after they pretended they didn't know what i was on about, and couldn't find one for half an hour... it was in the top drawer 6 inches behind her chair !))
On it i asked for all my blood test results from 1991 to present , and all Doctors appointments . It takes about a month , they have to have someone got through your records and redact anything that refers to a third party etc, and you have to provide ID before they give it you. Then i was given the whole lot on a password protected disc, and from then on i just ask for each new result after the Doctor has seen it .( we do have a right to our results , but not until a GP has seen them )
However....Most people on here set up patient access online at GP through some sort of APP, but like i said . i'm a dinosaur so don't know what an 'APP' is.
I think you have to set up something like 'enhanced access' which also requires ID initially ,to be able to see test results.
Not all GP' surgeries have the facility to do this yet, and there are lots of different apps.
if you just want the latest result, just ask reception for a printout of the latest results.
Be prepared to have receptionist's not know what you're talking about , tell you it's not allowed, tell you 'it just say's normal' etc etc .
Once you are sure of your facts and confident, they usually give in/ ask someone who knows cos they didn't and were just fobbing you off.
You do have a right to see your results , as long as a Doctor has seen them first.
If you look at old posts from DJR1 you'll find lots about getting access.
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