My ongoing thyroid …: Hi guys. Hope all are well... - Thyroid UK

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My ongoing thyroid …

Billyboy2u profile image
9 Replies

Hi guys. Hope all are well… or as well as can be expected. Had a video call yesterday from my endo to discuss my apparent surgery ! I’d already told him on 2 occasions that I don’t want it and wish to keep my little butterfly.

I could see him shaking his head as I give my reason. I told him all the advice from in here and what new research was showing that the longer it’s treat the likelihood it may right itself Plus the fact obliterating my thyroid will not stop my immune system attacking my body and most of all I’ve not felt unwell at all during this time of covid.

Shaking his head still he said “I don’t know why I bother, but you have the final word on this. I’ll arrange some blood tests and your GP can take it from there then. I don’t suppose there’s anything else you want to ask me ? Is there. So I’ll arrange the bloods. Have a good day sir.

The screen went blank on my phone. I don’t think he was very happy but I’ve felt well on the meds. So unless there was something that changes that I want to keep it. Now I have to convince my GP the same as he too was of the opinion the endo had the final word.

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Billyboy2u profile image
Billyboy2u
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9 Replies

Hi

Just to be clear you have the final say, your doctors can advise you but ultimately its your choice, no one can force you into any medical procedure against your will. I think if you feel well then you've made the right call. You can always change your mind if that situation alters.

Billyboy2u profile image
Billyboy2u in reply to Sparklingsunshine

Thanks. As explained I feel the endo give up far too easy after my first relapse that by the way I felt and caught early and wasn’t that bad after the meds kicked in after my block and replace ended. It took over 2 years to relapse too. I thought we would at least try again. Thanks again.

pennyannie profile image
pennyannie

Well, exactly, you do have the final word and while you feel well on the AT medication - why change things for an unknown ?

Your own doctor should be able to continue prescribing and if your doctor isn't able to run the appropriate blood tests, on the Thyroid UK website there is a NHS recognized

laboratory Monitor My Health who offer a finger prick blood test for a TSH, T3 and T4 at around £29..00

At least yearly, unless there's a issue, you'll need to keep an eye on your core strength vitamins and minerals of ferritin, folate, B12 and vitamin D and again Thyroid UK offer various companies, some of whom offer a nurse home visit if this suits you better.

Good luck and keep us in the loop.

Billyboy2u profile image
Billyboy2u in reply to pennyannie

Thanks for your reply. I do feel better in myself as I find it a bit of a pain that after my first relapse the endo seems to have given up on me at the very first opportunity. Granted my readings were off the chart the first time I was admitted to hospital but I didn’t know what was wrong with me, Christ I haven’t even heard CNN of a thyroid. So thought whatever was wrong with me would sort itself out. I wasn’t to know it was slowly killing me. Luckily my partner said enough was enough and phoned the doctors. But that’s another story of which I’ve already hit on. My GP in the past has been good with blood test and tested for ferritin and folate too. I’ll see when I ring up and book one. Thanks again.

pennyannie profile image
pennyannie in reply to Billyboy2u

Good but what is CNN other than a news channel ???

Billyboy2u profile image
Billyboy2u

Lol. Don’t know where that one came from …

Gingernut44 profile image
Gingernut44

Good for you. I was constantly pressured to have RAI although I had no issues with taking Carbimazole except for the laziness of the Endo I was under not bothering to fine tune my dose. His eagerness to reduce his patient list spurred him into destroying my thyroid. I was hypo within 12 weeks after RAI with a range of symptoms. I have never been well on Levothyroxine and trying to find a T3 which doesn’t give me horrible side effects from the fillers is an ongoing search. The Endocrinology Department that was so keen to destroy my thyroid isn’t so keen on helping me get my wellness back and has refused to prescribe T3 - probably CCG driven instructions.Keep your little butterfly as long as you can.

Billyboy2u profile image
Billyboy2u in reply to Gingernut44

Thanks for the inspirations. I see a similar thing happening with me. I just can’t understand the laziness from them. People like that should leave the NHS if there or even willing to help. Would an endo have his removed or have the correct treatment. ?

thyr01d profile image
thyr01d

Sometimes I feel as if the doctors forget whose body it is!

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