I live in Jersey in the Channel Islands and the consultant I have been seeing never keeps me updated and rarely follows up with me. As a result I have gone months not knowing where I am at with things.
I am currently back on 20mg of as a result of a relapse last October but now have no idea if this is the right dose or not and then received a letter out of the blue from the University Hospital of Southampton regarding an appointment for RAI.
This is not something I have agreed to and feel let down by my consultant who doesn't want to see me again till May!!
I was wondering if anyone can recommend a really good consultant in the UK (I am willing to travel but Glasgow or Liverpool would be better as I have family there) that I can contact as I feel that my current consultant is letting me down.
Thank you all in advance!
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So I presume you have been diagnosed with Graves disease - which is an auto immune disease for which there is no cure and the NHS believe that by burning out your thyroid is situ, with a toxic substance, you will feel better than you do now and be hypothyroid and need medication everyday for the rest of your life.
It would help to have more information such as your original blood test results at diagnosis showing a TSH, TT3 and T4 reading and range plus the medical evidence of which antibodies were found positive in your bloods and therefore the need to prescribe an Anti Thyroid medication such as Carbimazole or Propylthiouracil - PTU for short.
Generally speaking the NHS allow a window of around 15-18 months treatment with the AT drug while we wait for you immune system response to calm down.
All the AT drug does is block your own thyroid hormone production and generally speaking this needs regular monitoring and dose titrations so that your thyroid hormones do not fall too far through the ranges and you suffr the equally disabling symptoms og hypothyroidism.
Quite why your immune system has been triggered to turn and attack your body rather than defend it is the 64 million $ question and likely a question for you.
Graves is said to be a stress and anxiety driven AI disease though there can be a genetic predisposition with someone maybe a generation away from you with the thyroid health condition.
Graves can occur after a sudden shock to the system like a car accident or unexpected death of a loved one or can simply seem to appear totally out of the blue.
We do now have some research that maybe of interest to you :
I am with Graves though had RAI thyroid ablation in 2005 and became very unwell some years later and finding no help nor understanding with my surgery and hospital I decided to self medicate in 2018 and I now take full spectrum thyroid hormone replacement and am much improved.
They have not said I have Graves but instead have mentioned Autoimmune Thyrotoxicosis. This was originally noted in 2019 with mild elevated Free T3 and suppressed TSH. I was then put on 20mg of Carbimazole.
As at 21/2/2020 my blood tests showed:
TSH - still surpassed to <0.02 mU/I
Free T4 - 13 pmol/
Free T3 - 6 pmol/I
As at 18/04/2020 my TRAb was negative 0.9 which I believe is normal and I was advised that as a result of this Graves style toxicosis was unlikely.
By July 2020 I it looked like I was hypo as my TSH had increased to 6.6 and the Carbimazole was reduced to 10mg which I was eventually weaned off.
I then hear nothing from my consultant and went of my own accord for a blood test in September last year when I was advice that I had relapsed and I started the Carbimazole again. This went from 5mg up to 20mg (which I am on now).
I also had a scan of the thyroid in January 2023 which showed the right thyroid with multiple solid lesions with a TR3 and TR4 appearance. And the left lobe of the thyroid had a thyroiditis appearance.
Now Im being told that the best route from here is the RAI which I am extremely nervous about and wish to explore alternatives with a recommended consultant in the UK.
So it seems you have the all clear for Graves Disease and your TRab are not over range.
I'm not knowledgeable on thyroid scans and see that you've been helped by another very capable forum member - so trust between us all, we can support you through this health issue.
I’m quite appalled you’ve been put on 20mg carbimazole since October & not had regular retesting of function & dose adjustment.
As for referring you for an irreversible treatment without fully discussing it with you or won’t see you until may. I’d be furious.
6 weekly testing is standard & adjustments - usually lowering dose is necessary to keep you in range. I think it’s very possible you are now on too high a dose of carbimazole & your thyroid levels could be low.
Is your specialist assuming GP we be arranging thyroid function test to check this?
Are you able to arrange private testing? As you need to know your FT4 & FT3 levels.
See thyroid UK list of private companies & find out if any include Jersey, or arrange to have test delivered prior to visiting family. Most test can be by finger prick & it’s best to send back sample early in week eg Monday morning.
It’s strongly recommended you get a full test before consulting a specialist. You then have the relevant information to discuss & get best outcome in appointment without waiting for further tests.
Email Thyroid U.K. for list of thyroid specialist endocrinologists and doctors.
tukadmin@thyroiduk.org
If you can use zoom appointment you may be able to find someone outside the areas you suggested.
Thank you PurpleNails, I am indeed furious and seeking further advice from a consultant that I can trust and rely on! I have paid for a Comprehensive Thyroid Panel blood test which I will post to the labs on Monday so I have more information before I talk to a consultant.
Thank you for your recommendations, I will certainly take a further look now. 👍
Having seen you reply up thread to pennieannie I can add a some more.
Thyrotoxicosis means high levels, autoimmune means immune system involvement. Being TRab negative suggests Graves is not responsible. With Graves you’d expect the FT3 to be more than mildly elevated. It’s not uncommon for levels to be 3x the norm.
Going by TSH is a very poor approach. Your next set of results show low TSH & what I suspect are LOW FT4 & high in range FT3. TSH - still surpessed at TSH <0.02 mU/I
Free T4 - 13 pmol/
Free T3 - 6 pmol/I
Do you have lab range, lab ranges vary - but by most ranges these are not very abnormal.
I’d question here what consultant is aiming to do, IF levels are in range is the treatment to force TSH response. As more than a “smidge” of carbimazole is likely to make you hypo.
What ever the intention you carbimazole dose was too high causing over range TSH - your FT4 & FT3 aren’t shown, if they weren’t tested & doctor is going by TSH - I think you are going to have issues. TSH is unreliable.
Do you have your September relapse levels? - if it’s based on low TSH rather than high over range frees, you could well be heading for hypo.
The scan in January 2023 which showed multiple solid lesions - were they given a fine needed aspiration?
As the left lobe of the thyroid had a thyroiditis appearance this suggest autoimmune damage and would cause low thyroid function.
Have TPO & TG antibodies been tested, the are present with hypo & hyper conditions the highest with hypo.
2 theories
1 - you’ve been under active for the majority of time but your TSH does not respond correctly to thyroid levels - ( similar to central or secondary hypothyroidism) but you thyroid (the primary issue) is affected.
2 - the right side solid nodules are autonomously functioning & effectively taken over the poor function of left side. An ultra sound scan is not equipped to determine function. A radioactive iodine uptake scan would need to be arrange to verify this either way.
Nodule/s do not remit in the way autoimmune is hoped to reach remission & in this scenario drs almost always recommend RAI.
Is the letter definitely referring you for RAI treatment & not for uptake scan?
I have a 5cm hyper nodule, I’ve remained on low dose carbimazole for 4 years. I had function test 12 weekly - 6 weekly if dose adjusted.
My FT4 & FT3 are within range my TSH have never risen. I’ve indefinitely delayed RAI & plan to stay on carbimazole.
Thank you for your detailed response, Ive learnt more from you this afternoon than from what my consultant has told me in 2 years! To answer your questions:
I don't have the lab ranges mentioned;
I also don't have my September relapse levels (the new consultant doesn't feel the need to send my any information or keep me informed);
I agree, I may well be hypo as we speak but wouldn't know;
The scan letter advised that the the lesion in the right lobe measuring 10 x 8 mm raises some suspicion and would be difficult to biopsy as adjacent to the carotid artery, they then suggest a follow up scan in 6 months time;
I am unsure if TPO and TG antibodies have ever been tested; and
The appointment in Southampton was to have the uptake scan and then RAI 90 minutes later!!
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