So last night and today I was sent down the Hospital to have more blood tests. I have explained my situation how I was undermedicated for quite a long time. That every time I was undermedicated I would feel dizziness, then when the dosage would be increased It would dissapear. I would be fine afterwards. Now the hospital is asking me to reduce levo to 100mcg from 125mcg. Having blood tests again in around a month. Their saying my TSH is quite suppressed and I could be overmedicated. Last night the result of the TSH was 0.1 but they have not told me the T4/T3 levels. The blood test last week showed the TSH as 0.05 and T4 as 24.
I guess Ill have to try and hope for the best.
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Jelley93
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Rather than wait and continue to feel unwell, why not do as advised yesterday and get your own full thyroid/vitamin test with one of our private labs? At least you'll get some answers with the results of that and can move forward. SlowDragon gave you links to two tests in her reply here, either one would do and they can both be done as a fingerprick test or pay extra for venous blood draw:
Ok. There's only one way to find out if a slightly lower dose will help and that is to try it .
So if i was you i'd try the reduction with an open mind for a few weeks ~at least 6 ~ because realistically , you can expect the first few weeks of any dose reduction to sometimes feel worse before it feels better ... this isn't always the case, but as long as y6u realise feeling naff for the first 2/3 weeks does not mean you won't feel a lot better after a couple of months on a new dose once your body has settled down.
When you were previously undermedicated /dizzy your TSH was pretty high wasn't it, 5 then 8 ish ..... This is obviously not the case now , your TSH is 0.05 /0.1 ish.... and your fT4 level is also pretty high.
Take this problem it one logical step at a time. First rule out the most obvious cause ...the one the NHS will always blame first when they see a low TSH /high FT4.... which is to say you are overmedicated and reduce your dose .
If that doesn't improve the dizzyness, and only increases other more obvious hypothyroid symptoms (like constipation /coldness etc) then you have proof that they're wrong ,which will make it easier for you to push them to look at other causes like ?low FT3 levels .... or at least make it easier for you to insist you want the dose put back up because you were not overmedicated despite what your TSH said.
Get a test done yourself now that includes fT3 /fT4 so you know for yourself what is going on with those ....waiting for NHS to do fT3/fT4 , and stressing about them not doing it when you wanted it done will just drive you nuts. Monitor My Health (NHS lab) does TSH +fT4 +fT3 for under £30 ( about £26 with TUK discount code it i believe ? )
I realise lots of people will disagree and will tell you you're undermedicated .. and i realise a reduction is probably the last thing you want to consider .... but i've been slightly overmedicated on Levo myself and it made me feeling incredibly unwell .... and i looked bad enough to concern the GP ...... a reduction from 150 to 125 did improve things a lot , but it took several weeks before it 'felt' like an improvement.
I have also had it the other way round ......where GP insisted i reduce dose and it made me worse ,,,, but the fact that i tried it for 6 weeks (and it led to chronic constipation and feeling much worse) did mean that they didn't argue about putting it back up despite what my blood results said. In fact it led to the GP saying "what dose do you want to take?"
So i found trying the 'lower dose experiment' does have it's uses .. even if it's just to prove them wrong ....in my case they are now aware that my TSH and fT4 can sometimes be misleading , and they are prepared to listen to my symptoms more ,and allow me doses that are outside the guidelines .
If i hadn't tried the lower dose properly ... they would still be saying any symptom i had was overmedication on Levo.
I'll be honest. From 2018-2021 was when I was most stable on 100mcg. Then for some reason the TSH shot up and the T4 went down. After the 125 increase I was stable for around 11 months before it has gone again now. I've written my letter of resignation incase I can't get right. At the minute I'm currently on Sick and my employer has been clamping down on sickness. If you're sick twice within six months. You'll get a disciplinary. Despite the fact it's out of your control.
When you are somewhere, almost anywhere, that could be near your optimum dose, I'd suggest adjusting by a smaller amount than 25 micrograms. Maybe 112.5?
I feel under-dosed on 100, and possibly slightly over-dosed on 125. So I stick at 112.5. Whether that is done by splitting tablets or alternate day dosing doesn't matter that much.
Actually , i agree with that . 12.5mcg increase /decrease is often enough to change symptoms and also blood results .
i'm the same as helvella ... 125mcg is a bit too much ..reduced to 112.5mcg ,took a while but felt better , then GP reduced to 100mcg (cos my fT4 was still stupidly over range) but 100mcg was definitely too little (chronic constipation , awfully brain dead) .. so after an argument , i went back to 112.5mcg.. which feels about right again.
i'm sorry .. that sucks . Don't hand it in yet ?... (unless you hate your job ) ..... ? inform employer "your dose has now been changed and it needs ?3 weeks to take effect ,but it should then improve, and can you plan for another 2/3 weeks off while this dose changed takes effect ?"..... just a thought .
I know it's really disempowering to be so out of control over what you can reliably deliver workwise , it really messes up your self worth , and your finances .... i ended up being largely self-employed , and just added a few hours two days a week done for 'employers'., because that was better for my head , than constantly feeling like i was letting people down, or knowing that some employers thought i was just malingering ., when i wasn't.
It's so unfair that the complications thyroid disease can bring when dose goes wrong are not understood /acknowledged in employment difficulties .... and so hard to come to terms with, when it's totally out of your control.
Couldn't agree more. It's frustrating because it also hits you out of nowhere. I can go for weeks and months without any symptoms. Working 37 hours a week . No issues then one day boom. You're floored by this. My job can be physically demanding at times to. When I'm good it doesn't bother me. However as I am now I am severely limited. To the point I'd class myself as disabled.
Do you always get same brand levothyroxine at each prescription
Many people can’t tolerate Teva brand.
GP could/should test folate, B12 and full iron panel test including ferritin….if not been done
GP can also retest thyroid to include Ft3 - though lab may ignore request to include Ft3
Email in a request that they do these tests next week, as you are currently signed off work and too I’ll too work
NHS England Liothyronine guidelines July 2019 clearly state on page 13 that TSH should be between 0.4-1.5 when OPTIMALLY treated with just Levothyroxine
Note that it says test should be in morning BEFORE taking levothyroxine
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Some evidence to take to Gp needed please.
Monitor My Health blood test results
Back to square one! No help offered!
