Still feeling like death after 11 months of lon... - Thyroid UK

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Still feeling like death after 11 months of long term Hashimotos gone haywire,anyone else felt like this for so long and will it ever get

susiebow profile image
16 Replies

better.I am having to consider early retirement as cannot work at present.

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susiebow
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Clutter profile image
Clutter

Have you started T3 yet, Susie?

jacky57 profile image
jacky57 in reply to Clutter

as i am very hypo and as mad as a hatter at the moment Admin ..please can you explain about T3...i take Levo...

susiebow profile image
susiebow in reply to Clutter

Hi Clutter,no not yet ,going for second opinion with new Endo,awaiting appointment.I really want to start Armour,but will try t3 if I have too.The strange thing is I feel ill all the time,achy ,exhausted,malaise,hair falling out.

I used to take 150mcg thyroxine ,now can only tolerate 112.5mcg one day and 100mcg the next.If I increase it I get red hot cheeks sweaty hands very shaky.However all the time I cannot tolerate heat,temp 36.4 ,but feel hot especially when waking.

My tsh levels seem to be so low now ,I have to drop dose to bring tsh up but feel my body actually needs more thyroxine ,but cannot tolerate it.

I have been slowly going downhill for few years but coped, things suddenly went bang last september and been really ill ever since.Do not know why.I am having to stop work.Worked as nurse for 35 years and drs do not know how to help as they do not and will not recognise my symptoms as being related to thyroid as bloods are all within normal ranges.

in reply to susiebow

Poor you! It does, indeed, sound as if you've become intolerant of the meds you're taking.

Do you have recent blood test results you could post here for comment?

susiebow profile image
susiebow in reply to

Hi Humphrey,yes I think you are right had loads of tet ,all on previous threads all in normal ranges,but not had reverse t3 done ,will ask about that.Inow cannot tolerate 150mcgs or even 112,5 mcg daily as TSH drops to 0.06 and I feel jittery hot red cheeks and red sweaty hands.When I drop to 100 mcg a day feel achy exhuasted,hair coming out.I always felt better with TSH of 2 -6 belive it or not ,now all over the place.

greygoose profile image
greygoose in reply to susiebow

Susiebow, no! You do not have to lower your dose to bring your tsh up. Why? You don't need it for anything. It isn't going to make you feel better and will almost certainly make you feel worse! TSH is irrelevant! Leave it where it is and dose yourself until you feel better.

Having said that, how are your adrenals? Because if you can't tolerate high doses, it could be that they are extremely fatigued. If you haven't already done so, best to get them tested and see.

Hugs, Grey

susiebow profile image
susiebow in reply to greygoose

Thanks Grey,I did have 3 day 24 hour urine collection for adrenals and all normal.

greygoose profile image
greygoose in reply to susiebow

OK good. :)

Clutter profile image
Clutter in reply to susiebow

Susie, when you become intolerant to Levothyroxine you become functionally hypothyroid at a cellular level. I really feel you will benefit from a reduction of T4 with the addition of some T3. I hope your appointment comes through soon but would your GP prescribe T3 in the meantime?

susiebow profile image
susiebow in reply to Clutter

Hi Clutter,my GP very nice ,but does not know about how to treat patients who are suffering like me.He said that he would treat me with t3 and that it would be a straight swap from 100 mcg levo to 100 mcg of t3 ! I aint going to do that.I wil look into dosing and ask him to start me at lowest dose or maybe see if I can suffer till I see Endo after all I have been like this for nearly a year !

Clutter profile image
Clutter in reply to susiebow

Ouch! Good job you know better, Susie. If he could prescribe 20mcg you could use a pillcutter to try 5mcg or 10mcg doses reducing Levothyroxine by 25mcg for each 10mcg T3 added initially. 5mcg and 2.5mcg doses are available but probably have to be prescribed on a named patient basis and ordered by your phamacist via IDIS.

susiebow profile image
susiebow in reply to Clutter

Thanks for advice and support ,it means so much when there is no were to turn too.

Clutter profile image
Clutter in reply to susiebow

Susie, I'm glad to help. I struggled for almost 2 years but I'm aware things can go pear shaped in the future for no discernible reason.

Clutter profile image
Clutter in reply to susiebow

Susie, I'm glad to help. I struggled for almost 2 years but I'm aware things can go pear shaped in the future for no discernible reason.

susiebow profile image
susiebow in reply to Clutter

How would I increase and would I need to multiy dose throughout the day ?

Clutter profile image
Clutter in reply to susiebow

Susie, because you've been swinging from hypo to hyper I'd advise taking it very slowly. 1 x 5mcg for 2/3 days to see how you tolerate it before increasing to 2 x 5mcg doses. Stick with 2 x 5mcg for 7/14 days before increasing. You could take 3 x 5mcg doses or try 1 x 10mcg plus 1 x 5mcg. It's a bit suck it and see. It's common to feel a slump in energy &/or palpitations when a dose is wearing off. When you recognise these signs you can time your dose 1.5-2.5 hours earlier. Although you may notice the immediate effects of a dose it will take 48/72 hours for the T3 to reach your cells where it is needed and you may not feel better at a cellular level for 3/4 weeks.

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