Making decisions

[Someome]

Hi,

I am really in a dilemma.

I was originally diagnosed with Graves disease in 2020, but been "in range" with a goiter for a year now. I have tried correcting my vitamin levels, doctors, nothing's helping.

I don't know if I should:

a) go investigate further then end up disappointed cause my problem will not be solved, as it has happened in the past. I consulted some doctors, but no treatment.

b) Do not investigate further and hope the goiter won't grow, but it's already choking me and do not want emergency surgery

c) Investigate further and catch covid, as most people I know have.

I can't get vaccinated because of how unstable my health problems are.

I feel like my options are extremely limited and see no possible positive outcome. In august, my TRab level was lower than the positive threshold and I thought my symptoms would disappear but no.

I am not sure if this is the right category. How can I decide?

[shaws Administrator]

I am sorry you are in a predicament and I'm sorry you too have a dysfunctional thyroid gland.

I don't know much about Graves Disease and I hope some member who has this condition can advise how you can reduce any symptoms.

In the meantime I will give you a couple of links and hope one or other may be helpful:-

info.co.uk/serp?q=treatment...

[Someome in reply to shaws]

Thanks, this was more like a venting post.

[Valarian]

What has your endocrinologist said?

I had a very swollen thyroid when my Graves’ was first diagnosed, and it was impacting my speech. However, it shrunk when my thyroid levels came down. Your specialists may not have been too bothered about it while your thyroid levels were high as they may have expected it to resolve itself. (Have you been having f2f appointments? If not, they may not realise how big it is).

Non-cancerous nodules can often be left unless they are causing problems, but if yours is ‘choking’ you, it really does need more investigation, and the only options for resolving it may be thyroid surgery or perhaps RAI. This leaflet gives more information btf-thyroid.org/thyroid-nod...

You say you can’t get vaccinated because your health is unstable. Is this your decision, or a doctor’s recommendation? In general, the recommendation is that people with long term health conditions should be vaccinated, as they may be at greater risk of serious disease if they catch covid. It looks as if the virus is unlikely to go away any time soon, so if you choose not to have the vaccination, you will either need to remain in long term self -isolation, or risk catching it every time you go out. You may end up sicker simply because you are (understandably, given you haven’t been vaccinated) nervous of visiting an outpatients’ clinic or GP surgery .

Are you still taking anti-thyroid medication ? If so, how much ?

[Someome in reply to Valarian]

I last saw an endocrinologist at the beginning of June, when she did an ultrasound which revealed no nodules, just a bit of enlargement (which to me felt like a lot). As I received no treatment, I saw another endocrinologist, in person. She said the same thing, that as long as my levels are normal she can't prescribe anything. I asked both if I can get vaccinated and one said definitely yes, the other hesitated to say yes but as they couldn't "cure me" then I don't know how reliable their advice was. The last part about what you said about the vaccine I feel is true... I'm also not taking any medication, no one has prescribed anything for the swelling. Anyway, thanks for the input!

[Valarian in reply to Someome]

I’m not sure whether there is any medication if your thyroid levels are in range. If it’s affecting your speech or breathing, you will need to keep pushing to get help. Maybe your GP would help .

[Fruitandnutcase]

I’ve been in remission for Graves’ disease since 2013. No goitre though. I do home fingerpick blood tests regularly to be sure my vit s and minerals are all well up on their ranges. I’d say the biggest thing I did was to go totally gluten free about eight years ago when I developed inflammatory arthritis.

At that point I watched my antibodies and my CRP plummet so it could have just been that they were ready to fall but I believe it is due to being totally gluten free.

As for the covid vaccination - I’ve had all of mine plus my first ever flu vaccination and I wouldn’t dream of not having them even though I am a total injection phobe - that’s why I had my first ever flu vaccination at 72.

I wasn’t particularly bothered about getting the covid vaccine, I don’t like injections and we don’t lead a particularly exciting life - I was quite happy being a recluse but I got vaccinated for the greater good, for the hospital staff who were suffering and dying, I thought what’s the point in clapping for them and being grateful etc if I didn’t have the vaccination so I plucked up courage and had it done. I didn’t feel a thing or have any reaction at all and I still have several nasty autoimmune conditions but they haven’t got any more triublesome.

I think catching covid - I had all the awful symptoms before it became widely known about, believe me it was very unpleasant - and if you feel as if you are choking with your goitre I imagine it would be much worse for you than any effect of the vaccine and worrying about it and trying to lie low and worrying about catching covid will severely affect your life and your mental health.

[Someome in reply to Fruitandnutcase]

That's very wise, seeing the bigger picture, not just the personal one about vaccinations. It's for the greater good. Thank you

[Fruitandnutcase in reply to Someome]

Hope it helped you make a decision. At least it ought to take worrying about catching covid off your list.

Honestly I hate injections so much that I’d just as soon have carried on isolating - husband wasn’t too impressed with that.

I broke my wrist in the January just before the first lockdown just after I had what was probably covid, then in June once covid had really got going I had to visit A&E with chest pains and I saw the same people and the poor A&E staff just looked so ground down when I saw them that I felt being vaccinated was something I had to do for the people who had looked after me when I needed help even if I didn’t do it for myself.

Good luck with your thyroid. I do think it takes a quite a while for your body to get back to its ‘new normal’ after having Graves so give it time - more time than you probably think it should take and be kind to yourself. 😊

[Cavapoochonowner]

Hello there, I have graves disease,diagnosed 2018.I am still receiving treatment for it but it is difficult to control.I have tried to optimise my vitamins and minerals and also take selenium at 200ug per day which I believe supports thyroid function.I have had both covid jabs with minimal after effects and will have the booster as soon as I can.I have also had the flu jab with no problems.If you are unsure yourself please discuss with a medical professional and don't get information from unqualified sources.You can then make a confident decision based on the correct information .Things may have changed since your last doctors visit which may mean you can have some form of treatment, you will never know if you don't try.You could always do a private blood test and post results on here which I have done in the past.People are only too happy to help.Hope you find a way forward.I would definitely check out the choking sensation with a doctor though.Best wishes to you.

[Someome in reply to Cavapoochonowner]

yes, it's been a while since I tried to get it checked out, I need to see what happens, since it only seems to worsen with time..Thanks and I hope you manage to bring it under control too!

[Cavapoochonowner in reply to Someome]

Thankyou and good luck.