Help whats wrong with me?: Total thyroidectomy in... - Thyroid UK

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Help whats wrong with me?

Bletherer profile image
8 Replies

Total thyroidectomy in 2007 always tired, very anxious and sometimes confused with poor memory! Thyroid has now regrown but very concerned as consultant and Dr dont seem at all bothered about the symptoms. I'm on 100mcg levothyroxine and my bloods are .28 TSH and 18.4 T4. Waiting on results of FNA ..they eventually agreed to do one!

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Bletherer profile image
Bletherer
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8 Replies
Bletherer profile image
Bletherer

also forgot to mention veery sweaty like aal the time...have tried driclor etc..

cario profile image
cario

Hi, I'm no expert, but sounds like classic case of thyroxine being insufficient for you, and if this is the case the symptoms gradually get worse over time. Look up Stop the Thyroid Madness and Thyroid UK. Get reading and reading! It's all about T4 not being enough for some hypothyroid people. If you read my profile for a little info on me, my thyroid gland was destroyed and I discovered this year that I've been undermedicated for some 20 years.

Best wishes

Clutter profile image
Clutter

Welcome to the forum, Bletherer.

I haven't heard of thyroid regrowth after thyroidectomy. Another member's thyroid has regrown afer RAI ablatement but it isn't working.

Thyroidectomised patients don't always do well on Levothyroxine only as their FT3 is often low even on high doses of Levothyroxine and T3 is the active hormone we need to feel well. Your FT4 looks reasonable but that doesn't mean you are converting to T3 well. If you can't persuade your GP or endo to test FT3 it would be worth ordering a private FT3 test from Blue Horizon or Genova via thyroiduk.org.uk/tuk/testin...

Ask your GP to test ferritin, vitamin D, B12 and folate as hypothyroid patients are often deficient/low and these deficiencies can cause musculoskeletal pain, fatigue and low mood similar to hypothyroid symptoms. Post your results with the lab ref ranges (the figures in brackets after your results) in a new question and members will advise whether supplementation is required.

helvella profile image
helvellaAdministrator in reply toClutter

Have a read here:

ncbi.nlm.nih.gov/pmc/articl...

Tends to happen in Graves patients but not others. Or it did in 1951. :-)

Rod

Spareribs profile image
Spareribs in reply tohelvella

"all these patients were protected from developing clinical evidence of myxedema by the administration of 1 or 2 gr. of dessicated thyroid daily . This may have contributed to the prevention of exhaustion atrophy of the residual thyroid tissue."

says it all - they used to prevent it, now they want evidence pre-treatment (or pre-non-treatment)....

Clutter profile image
Clutter in reply toSpareribs

Very true, Spare :(

Clutter profile image
Clutter in reply tohelvella

Thanks, Rod. Surprised to see they had TT and low dose RAI too. Back in the 70s my mother had Graves and 3/4 of the gland was removed but I don't think she had RAI and wasn't on any thyroid meds after AFAIK.

nightingale-56 profile image
nightingale-56 in reply toClutter

My Thyroid has re-grown after a sub-total thyroidectomy in 1978, which was done when I was 14 weeks pregnant as things began to go wrong fairly quickly. Although it has re-grown it is not working, but I am on a small dose, 75 mcg of Levothyroxine. As have been having problems on Levo for past 4 years, I am about to go onto NDT (self funding). I was not originally on any Levothyroxine for about 18 years after the operation.

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