Frustrated and confused

[purple64]

Endo appointment yesterday. As usual it's not the same one as last time. Explain your history? Don't they have notes? I think you need to consider RAI or surgery as there is no proof that Carbimazole is safe for long term use although some people have been on it for 15 years !!! My response, I don't want RAI or surgery. I was assured it was my decision but I should think about it. Endo, well as you are putting on weight I think you are going into remission. So maybe take Carbimazole every other day and we will see what happens. Come back in 6 months. Does any body else wonder why they bother to go to these appointments? I came out of there none the wiser. Also over the last year when I was seen by a different endo I was told I shouldn't have rai due to my eye disease 🙄. The other thing I was told yesterday was if I didn't have rai or surgery I would have to have regular blood tests!!! Honestly what planet was she on 😡

[greygoose]

Diabetes specialist, I imagine. They've got some funny ideas.

[purple64]

That's what I thought not a clue about thyroid issues

[pennyannie]

Hey there Purple

Stay strong and stay firm and stay on the AT drugs for as longs as " you " need to -

RAI is a definite "No " :

and removing a major gland, that happens to be attacked by an auto immune disease ?

No, not really the best option for you, especially if the NHS refuse to treat you afterwards with both T3 and T4 hormone replacements.

Take good care

P.S. You might like to take a look at the Elaine Moore Graves Foundation website. It is stateside so medical terminology slightly different but it is all things Graves for any Graves patients and their families and carers.

Elaine Moore has Graves and went through RAI in the late 1990's. She found no help nor understanding in her journey so wrote a book to help others who might also be struggling.

Elaine is a medical technologist and now a leading researcher into all things Graves and her website covers many aspects of this poorly understood and badly treated autoimmune disease.

There is an open forum much like this amazing site where you can ask questions and Elaine generally replies, and there are also sections on auto immune disease management, relaxation, lifestyle, and diet, not forgetting sections on holistic, alternative and integrated treatments, and so much more.

[purple64 in reply to pennyannie]

Thank you for that I will look at her website and forum. On the way home I was thinking it over and thought I am not going to be pushed into rai or surgery. I've been doing ok on atd's and I think I will go into remission. I don't know the ranges but when I was on a higher dose the antibodies were 2.9 as the dose has been lowered so the antibodies have gone up to 6 and 8.2.

[pennyannie in reply to purple64]

You might also like to check out the eminent endocrinologist - Professor Anthony Toft's 2017 article :- Thyroid Hormone Replacement - A Counterblast To Guidelines which is available, in full, on this website.

In which it states :-

" I am so concerned about the state of advice on the management of primary hypothyroidism that I am increasingly reluctant to suggest ablative therapy with iodine 1-31 or surgery in patients with Graves disease, irrespective of age or number of recurrences of hyperthyroidism. "

This might be useful ammunition if you feel the pressure building.

If you strip your emotion out of the equation , you're simply a 3.45 on the 12th. and endos are paid to keep moving the patients through the system.

Pressure is there to reduce waiting list out patient times, not extend them.

Suggesting patients stay on the AT drugs can be a lengthy process, and needs the skill and knowledge of an experienced endocrinologist. and that costs more money and time, neither of which seem to be currently available.

In my experience I saw different doctor every time I went for hospital check up's, they all seemed to be " on rotation " , there was no continuity of care, as no one stayed long enough to see anything through.

RAI is in the hospitals best interest as it is the cheapest option for them, but it may not be in your best interests. It's a quick 20 minute outpatient appointment and a discharge back out into primary care, job done, patient case notes closed.

Surgery is " cleaner and more precise " but who would choose to have their throat cut.

If you are relatively well on the AT drugs - so be it.

I'm with Graves Disease diagnosed 2003, RAI in 2005, and have been very unwell dealing with the long term consequences of drinking the RAI :

I now manage Graves, thyroid eye disease and hypothyroidism and am self medicating as I can't access the appropriate thyroid hormone replacements through the NHS.

[purple64 in reply to pennyannie]

Sadly I don't think the endocrinologist have the time or the skills to treat people long term with graves. Most are diabetes specialists so therefore it's easier to

make us hypo and send us back to GP for levothyroxine. As you say we are just a 3.45 on the 12th than a person with an illness.

That statement by ProfToft is very interesting thank you for that.

[pennyannie in reply to purple64]

There are people on this site who are " in remission " and others on long term treatment with AT drugs - The Elaine Moore website talks in some depth on the alternative treatment options for Graves Disease.