Thyroid removal

[Florah]

Hello,

Saw Endo on Friday and discussed in the future, this maybe the best option for me. It would be good to hear from others who’ve had it- Pros? Cons? Side affects? Surgery experience? Etc

Thanks

[SlowDragon Administrator]

Did you find out if you have Graves’ disease and Hashimoto’s

Were TSI or Trab antibodies ever tested to definitely confirm Graves

previous post

healthunlocked.com/thyroidu...

Have you got vitamin testing done

[Florah in reply to SlowDragon]

SlowDragon pennyannie

TRAB- 1.9 (Aug 2021) 

TPO- antibodies >1000

[SlowDragon Administrator in reply to Florah]

Trab test is for Graves’ disease

what’s the range on Trab

Is that over range ?

Very high TPO antibodies suggests Hashimoto’s

It’s possible to have both Graves’ disease and Hashimoto’s at same time

Thyroidectomy for just Hashimoto’s is unusual unless large goitre affecting breathing

[Florah in reply to SlowDragon]

 SlowDragon

Not sure on the ranges for Trab as didn’t know about ranges back in 2021. My Endo told me I had Graves’ disease in 2021 and was on carbimazole.

I’ve been overactive & underactive (up & down) over the past 19 months. My Endo said I’m an unusual case.

Now back on levothyroxine

[pennyannie in reply to Florah]

Thank you :

What is the range for the TR ab ?

From memory I think I've seen ranges as under 1.80 or 2.00 ?

We do need to be better informed if you want a balanced, considered reply.

[pennyannie]

Hello again ;

i wrote to you a month ago asking again for confirmation of what you are diagnosed with - is it Graves or Hashimoto's or both and am still waiting on your answer.

These are both auto immune diseases and something has triggered your immune system to turn and attack your body rather than defend it :

Quite what has triggered your immune system is the 64 million $ question ?

For Graves you might like dip into Elaine Moore though think I've already sent this - and this is the most recent research we have :

elaine-moore.com

pubmed.ncbi.nlm.nih.gov/338...

For Hashimoto's Dr Izabella Wentz website comes recommended - thyroidpharmacist.com

If we are looking at an AI disease this may not be resolved by having a thyroidectomy and in all honesty may simply compounded your health issues :

[pennyannie in reply to pennyannie]

You can read your previous post/questions and all your replies by pressing on your icon top right that reads More and go to your Profile page :

If you wish to read about any person who is replying to you just press on the icon alongside their reply to you and go the their profile page and read everything they have ever written on this forum

[PurpleNails Administrator]

Is thyroidectomy recommended as you have had a “Graves relapse” you have history of being hyper than hypo & on replacement.  

Are you back on carbimazole now?

Surgery is permanent & irreversible but if your struggling with hyper / hypo fluctuations I can understand why you might feel it’s a better option. 

 Make it your own decision.  Doctors suggest definitive treatment as it the effective option to “move you off their books” 

I was offered RAI to treat a hyper nodule but I kept “delaying” so specialist stated I could only be kept on book if intended to have treatment soon.  In  meantime I was going to be discharged to GP for monitoring and will have to re referred once ready for treatment.

been on carbimazole over 4 years now.

[Hennerton]

Do think hard before leaping into a thyroidectomy. It is not the actual operation that is difficult but is the fact that it will change you life and possibly you as a person. I have not been the same since mine was removed, even though I am fortunate to have NHS T3. It is my greatest regret and those doctors telling you how simple it is to take “a little white pill” know nothing about the full effect of having no thyroid.

At the very least you must be sure to get a commitment from your consultant to prescribe T3 ( Liothyronine) along side your Levothyroxine, if you should find that you are not doing well on Levothyroxine alone. This will manifest itself in a high T4 result and a low T3. (You must insist on free T3 blood tests, alongside free T4 and TSH, so that you can keep track of how your body is managing).

You may feel unwell, because your body does not have all the hormone it needs. This doesn’t happen immediately. You could feel fine for several years but eventually many people tend to need the added help of T3, so be aware of changes in your health pattern.

I am sorry to sound so depressing and you may be one of the lucky ones who manages superbly on Levothyroxine alone. If so, that is wonderful and your life will be simplified by it. Good luck.