problems after thyroidectomy.

[cass88]

following thyroidectomy two years ago i was prescribed 60m levothyroxine. ifelt horrible, and after blood test dosage was increased to 100m ,then later increased again after re-occuring problems which sent me scuttling to a specialist privately. (symptoms were .werer tiredness, depression, weight gain etc.i'm now on 150 m, and felt better ( or close to normal for me)for a few months, but during part three months i've experienced joint and leg pains, stiffness and basically total misery from the pain. to the point i feel i could classify myself as semi disabled. getting out of a bath,or a chairis is difficult.

i'm likely to get an increased dosage if latest recent tests require it. is it normal to med iction dosage to be so hit and miss? . prior to surgery which i had done in spain it turned out nothing sinister showed up in the auto biopsy and it may not have been neccessary to have the op. until then i was fit , slim, and active. now i have to plan my days to avoid climbing stairs or anything that will result in pain for me. i also have cravings for sweet things, and a need to pig out on them.nobody told me of possible med adjustment problems, and i've been feeling pretty worried about how i'm being affected.. can anyone advise me please?the thought of continuing or worsening symtoms is pretty scary.

[Piedo]

Hi I had TT last year I am on 100 thyroxine I also suffer terrible muscle and joint pain. I have been told by my dr that my T3 is low and has been since op I m really annoyed that it s only now they told me.The attitude is once you are on thyroxine you will be fine.Thanks to this site I now feel I have enough information to speak to Dr about giving me T3rather than cutting down my thyroxine which is what he wanted to do. I try and keep active and walk every day so I can keep my muscles strong

Piedo

[marram]

After a total thyroidectomy it is a travesty that you should be on only 60 for so long.

Both of you need to have in your library the Dr Toft book, 'Understanding Thyroid Disorders' because there is a section there which deals with the correct dose of thyroxine. It is NOT just enough to keep you alive or 'normalise' your TSH. Once the thyroid is removed, the TSH - which is pretty inreliable even for someone who has a thyroid - becomes less than useless.

The ideal is that you should have your T3 levels tested. This can give a far better picture of the situation. 'Once you are on thyroxine you will be fine'. Oh, if only. But it is not as difficult as thyroxine can make it.

Anyone who has no thyroid could never manage on less than 100 Levo, even if it does work for them. It is 32 years since my TT and I have had good times and bad times. Even the good times were not wonderful, because like you I still had pain. Now I know that I most likely need T3 as well as Levothyroxine.

cass88, Piedo, try to get your test results - as many as are available to you - and post them on here, with the ranges, and someone will be only too willing to try to help you to get optimal treatment. Have you read my blog, 'My Journey from Misery to Hope' - have a look at it - see what can happen if a doctor decides to dictate your levothyroxine dose, particularly to reduce it.

If nothing else, it might help you to stave off the problems yourselves, by being prepared.

Take care, both of you, and keep coming to TUK for any help you need. Look forward to seeing both of you putting your test results on here.

XXX

[cass88 in reply to marram]

thanks, i'm seeing doc on monday and will ask for print outs of every past test.. one thing i want to know, will a higher dosage arrest what's happening to me and turn it around? sometimes i feel it may be making so much damage i may not ever get back to normality.' didn't know i could get t3, , why haven't i been told this?

i only joined this website recently out of sheer desperation, so havenb't had time to read many blogs ( or been able to sit comfortably enough for long, but i'll take a look at yours later.

cass.

[Piedo]

Thanks Marram I will ask for result printout really feel taking T3(if Dr will prescribe it )

Will be better for me also try and find out why my body isn't, converting T4 to T3.Some days you feel as if you will never feel well again so frustrating!

I feel that the medical profession really keep you in the dark when undergoing thyroidectomy

I wish I had been better prepared rather than feeling a wimp!

Piedo

X

[galathea in reply to Piedo]

Insist the doctor looks up T3 in the British national formulary... He certainly can prescribe it. It's called Liothyronine in the bnf.

You can look it up for yourself in the bnf online. ( free to sign up).... The bnf lists all the meds a doctor can freely prescribe.