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Yet more thyroid advice needed...pleeeeeeease.

(51 Posts)
SirVixofVixHall Thu 27-Aug-15 16:51:46

So the saga to feel well continues. GP upped my dose from 50 to 100, as my TSH had risen a bit and was 3.8, and I was feeling rubbish. I have been on that for 6 weeks ish now, and I had review bloods this week. The GP wants me to reduce the thyroxine as my TSH is now 0.02 and my T4 26.6. Bloods were taken at 11 a.m. ish.
Thing is I don't feel hyper, I felt better when i first increased the dose, but now I feel as tired as ever. I am foggy brained, mixing my words up, and generally feel rubbish. My liver enzymes were raised, two different types, one is always raised but is more raised than normal, and the other isn't usually raised but is now , so the GP is a bit worried and mentioned a liver biopsy (Horrors!). He wants more bloods in 8 weeks.
So should I drop to 75, or to 75/100? Why do I feel so awful? I felt a bit better initially on a higher dose but that quickly dissipated. I walked to town today with my dd, it isn't more than a mile, and I really struggled on the way back in particular. I am overweight, that has mostly gone on in the past 12m, so could that be affecting my liver? I certainly haven't lost any weight from increasing my dose. I am so fed up of never feeling well.

Pleasemrstweedie Thu 27-Aug-15 19:17:25

Your GP needs to get your FT3 checked to find out whether you are converting the T4.

MsMargaretCarter Thu 27-Aug-15 19:31:06

I feel almost exactly the same when hyper as when hypo. The only way I know the difference is feeling overheated and waking in the night when hyper, and not when hypo. Otherwise I feel exhausted, achy, foggy in just the same way. My GP wasn't at all surprised by this, must be quite common?

SirVixofVixHall Thu 27-Aug-15 21:29:50

I have possibly been waking in the night, but then I always do at some point, as my smallish daughter likes to sleep wrapped around me like a monkey, and I never get an unbroken night. I still feel on the chilly side most of the time, although I have had little patches of feeling slightly hot which I had assumed was a peri-meno thing. MrsC do you reach equilibrium at any point? Where you feel well?
My free T3 never seems to get checked, ever. God I am so fed up of this, i haven't felt properly well for years, and the last few years have been particularly bad. It is three years since I started on thyroxine.

MadFatRunner Thu 27-Aug-15 21:42:14

I've never overheated with an overactive thyroid, but found the fatigue utterly debilitating - even now, in range, it's still very limiting and am managing less than half my usual physical exertions

don't have any experience of being underactive to compare it with but think there is a lot of overlap - they told me that there is a lag of around 3 months for symptoms and levels to catch up with one another though

MadFatRunner Thu 27-Aug-15 21:46:06

the main thing I noticed was this constant sense of apprehension, my resting heart rate doubled and would wake me in the night by sort of galloping away, and I had super bad crippling DOMS after any sort of exercise and there was this perception of everything being terrifically hard work, so much effort

SirVixofVixHall Thu 27-Aug-15 22:08:07

I haven't felt any more anxious than normal, I'm a stressy sort anyway, and my heart is all over the place when I am under. I had patches of waking with a racing heart when my levels were really low, but not now. What are DOMS ? I don't know if I should go back to 75 or try 75/100 alternate days first. Maybe I should drop to 75 as my TSH is so low.

MadFatRunner Thu 27-Aug-15 22:39:00

oh Delayed Onset Muscle Soreness, there's the nice achy kind a day or two after a good workout and then there was this whole new inexplicable level of pain!

had no idea the thyroid could wreak such havoc and destruction!

SirVixofVixHall Thu 27-Aug-15 23:16:24

I have aching and sore hips and legs, and back pain. The thyroid does seem to skew ones whole system. i have a gallstone thanks to an underactive thyroid, never mind the extra two stone, thinning hair, and brain fog.

MadFatRunner Fri 28-Aug-15 09:42:46

I have an extra stone thanks to the anti-thyroid meds and fatigue with lots of aches and pains too. Poor us! It's all fixable but it takes ages, thyroid nurse says it has to stay in the healthy range for at least 3 months for everything to repair itself. That is my main complaint, that thyroids take AGES.

Pleasemrstweedie Fri 28-Aug-15 09:54:55

The problem is that without the FT3 test it is impossible to tell chemically whether you are over replaced, in which case you should reduce the dose, or whether you are not converting the t4 to T3, in which case you would need to reduce the T4 a bit and add in some T3.

What's your basal body temperature like?

SirVixofVixHall Fri 28-Aug-15 10:51:13

Temp is low usually. I took it yesterday as I felt as though I might have a slight temp, tender skin etc, but it was 95.5.

SirVixofVixHall Fri 28-Aug-15 11:02:13

I hate dealing with my GP over this. Newest GP is the practice seemed a bit more sympathetic - he was the one who upped my dose as my TSH was 3.8, the other GP had marked it as "satisfactory". I read stuff here or through thyroid UK, then I go to the GP and they say quite the opposite, it is so frustrating. And I have reached a sort of crisis point now, where it is having such an impact on my life that I am really fed up. We went to London with the dcs for a few days a week ago, and I was so tired I spent half the time just sitting in the flat, rather than enjoying time with my family. They are all at the beach now and I'm at home as I'm too wiped out to face it.

MadFatRunner Fri 28-Aug-15 11:25:31

can you ask to go to thyroid clinic or doesn't it work like that? Maybe there is a gp with an interest in endocrine stuff, it must be very frustrating confused

SirVixofVixHall Fri 28-Aug-15 12:46:24

Temp today is 95.1. Can that be right? It sounds v low.

MsMargaretCarter Fri 28-Aug-15 13:00:18

I have been on Levo for just over 2 years, and had my very first period of feeling well earlier this year - felt fine for around 4 months, on 125mcg a day and no other meds (have had vit D and iron in the past, as both vit D and ferritin levels were on the floor). Didn't lose weight though, sadly.

Went hyper about a month ago and currently feeling all messed up again. Taking 125/100 every other day at the moment and waiting for a couple of weeks to see if anything changes. GP won't test anything other than TSH.

SirVixofVixHall Fri 28-Aug-15 13:06:52

Isn't that strange that you suddenly went hyper?
I took 75 this morning, and will stay on that, but as I am hyper maybe I should take nothing for a few days to allow it to drop? I don't know what I'm supposed to do.
Think I'll buy a new thermometer today as 95 seems far too low to be accurate.

MsMargaretCarter Fri 28-Aug-15 19:53:18

I don't really understand it! Was fine for months on 125 and suddenly started to feel rubbish again, waited 2 weeks to see if it would lift. It didn't, so GP tested tsh and I think it was just under 1. She was happy to raise Levo to 125/150 based on my symptoms but after a few days I then started with the overheating etc. so definitely hyper. I went back to 125 for a few days and then dropped to where I am now about a week ago.

I can't express how frustrating it all is - especially as I thought I'd finally stabilised. I know there are many far worse conditions but it is miserable.

Hope 75 does it for you - I would give it a few days

cantbelieveimonhere Fri 28-Aug-15 20:00:07

Sorry if this has been mentioned before.

Are you under the care of an endocrinology consultant? Sounds like you should ask your gp for a referral. If the gp hasn't sorted it easily and you're feeling rubbish, get referred to endocrinology dept in nearest hospital. One consultation with them could point you in the right direction.

Thryoid issues are majorly under reported and the effect not fully understood . I feel your pain. Thyroid buggers everything when it is off.

SirVixofVixHall Fri 28-Aug-15 21:06:32

No I've never been referred to an endo. My close friend (in a different part of the country) sees one regularly but my GP hasn't ever suggested it. The GPs seem to be happy if my bloods are within range even if i feel ghastly. When I went up to a TSH of six last year, the GP suggested maybe waiting until it hit 10 before upping my dose!

Pleasemrstweedie Fri 28-Aug-15 21:42:52

If your temp is down at 95 or so, there is no way you are hyper. My guess is you are not converting. That may settle down, or you may have a good genetic reason for it.

Either way, you need an endocrinology referral. Get ThyroidUK's doctors list and go from there.

cantbelieveimonhere Fri 28-Aug-15 21:50:03

I can not believe that!!! I have had thyroid issues for 17 years, was all over the place for 14 years. Then I got an endocrinologist and BOOM, stable! Life pretty much back.
If needs be, ask for second opinions, ask for another GP etc. This is the time to be assertive. You will never regret it.

cantbelieveimonhere Fri 28-Aug-15 21:51:18

But then again mine hit 70 at it's highest! Believe me, you don't want to go there!

SirVixofVixHall Fri 28-Aug-15 21:51:28

I have joined Thyroid UK, so i will look into that, and borrow a thermometer to check if mine is working, as although I don't feel warm, I don't think I can really be that chilly. The only hyper symptom I'm having , other than the crushing tiredness which I think of as hypo, is that I do think I'm not sleeping terribly well. I feel really rough and I don't look great, I look how I looked when I had a kidney infection a couple of years ago- very blue around the eyes, pale, and unhealthy.

MadFatRunner Fri 28-Aug-15 22:04:24

because of this lag between levels and symptoms you won't feel hyper until the levels have been there for a while, it takes at least couple of months doesn't it

or is it the other way around? confused

they've told me I won't feel back to normal until levels have been in range for at least 3 months, and that I wouldn't notice symptoms of underactivity because we test too frequently and would pick it up before it made itself felt (if that makes sense?)

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