Hi first time on this site but wondering if any... - Thyroid UK

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Hi first time on this site but wondering if anyone can help me.

paulam profile image
14 Replies

I had a total thyroidectomy 12 months ago for multiple benign nodules. I am an eltroxin and once i got settled on it 9 months ago i have had no real problems untill of late. I have tingling in my hands and feet and all have grown in size.on top of that my left hand is a full half centimetre bigger than my right and my left foot is a little over a centimetre bigger than my right foot. Also my eye sight has deteriorated rapidly most of the time i feel im looking at things through water and it seems to be getting worse daily.Also i once again feel a lump in my throat?has anyone out there had experiences like these would really appreciate your opinions.

thanks

paula

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paulam profile image
paulam
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14 Replies
HarryE profile image
HarryE

Hi there! What dose are you on? And do you have your latest blood test results?

paulam profile image
paulam

112mg daily that is 100mg/125mg alternate days. can't remember about 1.2 but it is exactly the same as it was before i had a thyroid problem luckily i had it taken during routine tests a couple of years ago

HarryE profile image
HarryE in reply topaulam

That's not a very big dose for someone without a thyroid at all! You really need free t4 & t3 tests to draw any meaningful conclusions.

paulam profile image
paulam

Sorry your messages keep coming in late here. I know it sounds small but i am only 48kg have you ever heard of peoples extremities growing on eltroxin ? it may not have anything to do with it??

HarryE profile image
HarryE in reply topaulam

It might not, but then again it might. I haven't heard of it myself, but the variety of thyroid symptoms is huge. Someone else may have heard of it

paulam profile image
paulam

hardly a tumor of the pituitary gland?? I've always wondered if I ever had a problem with the thyroid as my bloods were always at the same level thereabout I never had any symptoms. just felt a lump one day tested the following day and it showed 2 small nodules on one side a month later 7 large on one side and five on other and 2 weeks following 11 very large on one side and 8 on other and surgery done immediately all benign Thankfully. What do you think

paulam profile image
paulam

Forgot to mention my CEA was also elevated not dramatically 8.9 had colonoscopy etc etc all clear

helvella profile image
helvellaAdministrator

Your question makes me think of Marfan Syndrome (and, as I saw the link while looking up Marfan's, Loeys–Dietz syndrome as well).

I really don't think you have these, if only because they are usually seen in childhood, but both seem to affect hand/foot sizes (indeed, whole body size, but distinctively over-long hands and feet), both affect eyes, and in both hormone levels are inappropriate.

I think you need to be seen by an endocrinologist who specialises in these things - not a typical diabetes and sex-hormone person.

en.wikipedia.org/wiki/Marfa...

en.wikipedia.org/wiki/Loeys...

Rod

paulam profile image
paulam in reply tohelvella

Thanks a million havent heard of these before will look them up. Yeh I'm far from a child though can still behave like one

Barbaraj profile image
Barbaraj

The growth of your hand and foot would indicate that you need to have your pituitary gland investigated over and above your thyroid problem. Hope this helps. Barbaraj

paulam profile image
paulam

Thanks Barbaraj

mumcat2 profile image
mumcat2

It also soundsit might be ore like a pituitary related problem to me. I am only a degree scientist but have had pituitary problems for 40 years, and it might be something like a small tumour (hence your sight issue) that is producing growth hormone. This would cause acromegaly, a condition where extremities and the face grow disproportionately. I had a tumour like that, which produced prolactin and was growing into my optic chiasma, over 40 years ago. I had it surgically removed and things basically went back to normal. Good luck in your search!

paulam profile image
paulam

Thanks mumcat2, nice to know things went back to normal for you,to be honest i feel my orbital bone is above my eye brow but no one else seems to notice it.The more i read about acromegaly the more convinced I am that thats my problem but it all happened so suddenly (since last september,three months after thyroidectomy). Do you remember did you have a tingling sensation in your feet and hands?

mumcat2 profile image
mumcat2

I did - I'd also been diagnosed with migraine regarding the headaches I'd been having. Bearing in mind I was only 15 and in the run-in to O levels, it was just thought to be stress-related,though being bullied at school at the time certainly did more than its fair share to up the stress! These things are definitely sent to try us.

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