Anyone had a part thyroid ectomy and had to hav... - Thyroid UK

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Anyone had a part thyroid ectomy and had to have second op to total thyroid removal.

Karen154 profile image
9 Replies

Hi people, just wondered anyone has had good result and relief from thyroid symptoms with thyroid removal.

For four years 3 nhs endocrinologist have been unable to achieve balance.

Scalp hair eyelashes and brows are awful and I now wear hearing aids which have been highered twice in two years.

Regardless of dose or adding T3 I swing from burning to cold hands. Scalp and eyelash hair fall or just brows.

Scan was normal. I have been diagnosed with androgen alopecia which I don't believe as all the others symptoms wouldn't happen at the same time.

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Karen154
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9 Replies
Nanaedake profile image
Nanaedake

Why are you considering total thyroidectomy? Why did you have a partial thyroidectomy in the first place? I don't think Endo's know a thing about thyroid health. Were they specialists in thyroid care or diabetes specialists?

Karen154 profile image
Karen154 in reply toNanaedake

Hi, I don't know if they were thyroid or diabetes consultants. They knew their stuff but unable to diagnosed as bloods rejected by lab.

I've been demented with thyroid symptoms for four years.

I had tumours so they removed that side. Very under treated until 42. Scalp and lashes are over treated which match bloods. Brows are under treated which also shows in drop in blood.

There has been no balance. My hair won't take much more as it doesn't grow back.

I swing from over to under with change of 25 ml within a few weeks. Used to be months.

Nanaedake profile image
Nanaedake in reply toKaren154

You can do a google search to find out what your consultants' specialities were. Did they check your vitamin levels including vitamin D, folate, ferritin, B12 and calcium? If so, have you got or can you get a copy of your results? Low vitamin D is common in people with thyroid cancer and in people with other kinds of thyroid disease. Were the tumours cancerous? Did you lose parathyroid glands?

Do you always have the same brand of thyroid hormone or is the brand swapped at each refill?

Karen154 profile image
Karen154 in reply toNanaedake

Hi, googling consultants doesn't really matter now as I've been discharged again and advised what dose suits. So that was that.

All my vitamins. Female hormones, testosterone, cortisol and thyroid anti bodies are all good.

But thyroid is constantly out. Either tsh or T4,T3. Never in range. They are unable bring it into range.

As I said a very small change of dose changes symptoms.

I told my GP if someone doesn't do something for me. I'm prepared to with draw medication. I literally can't stand it anymore.

I got a 3 minute emergency call and that was the end of it.

Karen154 profile image
Karen154 in reply toKaren154

Sorry, forgot to say that tumours weren't cancer. However after 9 months wait for the IP the cells were changing.

Karen154 profile image
Karen154 in reply toKaren154

I have no idea what glands they took as they tell you nothing. You know what their like. Lol

I've tried, combination T4 and T3, T3 added to T4. Scalp hair falls heavily with T3.

What ever the dose there is no balance. So total thyroidectomy us the only thing left to try.

Xx

ZoBo profile image
ZoBo in reply toKaren154

Is it all down to your thyroid?

Karen154 profile image
Karen154 in reply toZoBo

Every other blood test is normal. I think so.

endomad profile image
endomad

I have pmd you xx

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