My turn!: My turn to feel c**p that is. So I was... - Thyroid UK

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My turn!

puncturedbicycle profile image

My turn to feel c**p that is.

So I was feeling, mmm, 'not too bad' for quite a while after my last reduction in meds. I felt amazing a few years ago when I started t3, then became a bit hyper (high t3) and kind of crashed a bit (which I couldn't right even when I reduced meds a tiny bit, no idea why). After starting ldn I seemed to need less levo, so it was reduced further. My last blood test was in Feb (I think) and it looked pretty perfect (suppressed tsh but t3 toward the upper end of the range), so no change on meds.

Since then I've been in decline and I now feel properly dreadful. You know how bad you can feel after you begin to slide a bit and yet you kind of feel hopeless to be helped? That was me. I only had a blood test because I had to have a review of my meds.

So, here are the results, on 75 levo and 10 t3:

TSH 5.17 (0.34 - 5.6)

FT4 8.3 (7.5 - 21.1)

FT3 5.4 (3.8 - 6.8)

Blimey, no wonder I feel like s***e. I must confess I had no idea if I'd be low or not so I didn't just miss out the dose on the morning of the test, I also missed the day before. I just didn't want them to reduce my meds and I doubt very much that it will have had a profound effect on the test results.

The question is, should I raise levo or t3? I'm assuming levo? Gp wants me to add 25mcg levo to current dose.

Oddly I've had few symptoms aside from exhaustion, anxiety, some funny fussiness about food and/or reduced appetite and some difficulty sleeping. I might be getting some extra hair fall, hard to tell. My partner and I reduced our 'extra' carbs (no nightly potato or 2-slice sandwiches for example) and I actually lost weight. No constipation either. Pulse and temp unchanged as usual. I think I'm one of these people whose symptoms are so subtle I can't really rely on them to tell me what's going on, or not in the usual 'temps and pulse' way.

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puncturedbicycle
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13 Replies
SeasideSusie profile image
SeasideSusieRemembering

puncturedbicycle Increase the Levo. Your FT3 is 53% through range, your FT4 is only 5.8% through range. Normally FT3 should be in top quarter, FT4 in top third.

Extra Levo will improve the FT4 and should also convert to give a bit more FT3.

Are all your vits and mins optimised?

Have you had your adrenals checked? That was one of my problems and poor sleep was part of causing that.

puncturedbicycle profile image
puncturedbicycle in reply to SeasideSusie

Cheers! Is that the case when on t3/t4 or on levo alone? I must confess I don't really understand the ratio/percentages. I was surprised the t3 was so decent, but it makes sense as it was levo that was reduced. T3 has always been 10.

From 75 to 100 levo you think? Then a test in 6/8wks?

Adrenals are poor (or they were when tested) but I followed the doctor's protocol and nothing changed. My sleep is only recently poor (started at the weekends when we're not at home and has progressed to all the time) so I'd bet anything it will improve when my levels are good.

I self-inject b12, so that will be good. I need my vit d done, but plan to buy the tests myself since the surgery has never been good at monitoring anything. I was taking folate, d and iron but stopped because, again, no monitoring.

I think I'll raise the levo then have a private test w vits/mins in eight weeks.

Thanks for your help!

SeasideSusie profile image
SeasideSusieRemembering in reply to puncturedbicycle

As far as I know it's the case when on a combo. I'm on a T4/T3 combo (self medicating the T3) and there doesn't seem to be any reason for the FT4 and FT3 to be any different from when on Levo alone, you're making up the T3 you body isn't converting itself. The only difference is that adding T3 in any form generally suppressed TSH.

My surgery does nothing, I've never asked them to, they're only interested in TSH, so I do my own tests with Blue Horizon and Genova and Vit D with City Assays.

Jefner profile image
Jefner in reply to SeasideSusie

Seasidesusie have u managed to lower your high cortisol levels. Am so struggling with mine at moment. Any tips?

SeasideSusie profile image
SeasideSusieRemembering in reply to Jefner

Jefner I don't actually know, I haven't re-tested yet, it's on the to do list but I have too many other expenses at the moment so testing will have to wait.

Jefner profile image
Jefner in reply to SeasideSusie

seasidesusie what symptoms are you having. I feel like death today :(

SeasideSusie profile image
SeasideSusieRemembering in reply to Jefner

Jefner I don't have 'symptoms' as such that I can put down to adrenals. The adrenal test was part of a barrage of tests - thyroid, sex hormones, adrenals, and others, as a last ditch attempt to try and improve my many years of never feeling good despite Levo and my GP banging on about being over medicated.

The adrenal test showed a normal curve but the first three samples at the very top of the range (not over) and my DHEA below range.

The whole thing is being addressed with supplements and there has been a gradual improvement which I hope will continue.

Jefner profile image
Jefner in reply to SeasideSusie

what are you supplementing with

SeasideSusie profile image
SeasideSusieRemembering in reply to Jefner

Jefner I'm sorry, I have to go out and don't have time to detail everything, but if you look at your private messages all the information about my tests and my supplement regime was explained in detail to you before. Look at your messages from 3 months ago under the heading Adrenals.

108Optimist profile image
108Optimist

Punctured bicycle I dont know im sorry, im not experienced enough to give a great reply. But I just wanted to shout out and send all my love and healing as that really sucks. Gah to have it balanced and then taken away again.

Wishing you an easy path of complete recovery. :)

puncturedbicycle profile image
puncturedbicycle in reply to 108Optimist

Many thanks! Yes, it's so incremental I find myself on the floor before I realise I have to do something about it.

beh1 profile image
beh1

I agree with Seaside! Do as GP suggests and push up t4. Retest in 6 weeks; I felt awful when my t4 was low even though t3 looked good. 😄

puncturedbicycle profile image
puncturedbicycle in reply to beh1

It's all v interesting as usually my tsh is suppressed, t4 low and t3 good. I have noticed in the past that anxiety seems to be a decreasing t4 symptom for me. When I've reduced in the past I get ferocious anxiety. I also can't sleep, which isn't me at all. But the fatigue is vile. I knew something was up a couple of days ago when just thinking about the day's chores (v doable day-to-day stuff) almost made me burst into tears.

Am on 100 t4 now. Fingers crossed!

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