At Today's appointment I was told some things that seem a bit contradictory to the messages on here. I'd be interested in any thoughts.
•antibodies can't be controlled through lifestyle changes. They are what they are and can't be got rid of. So gluten free won't affect antibody levels or how unwell the hyperthyroidism will make me feel. He suggested diabetes, thyroid, MS and coeliac are on the same spectrum, and triggered by the antibodies attacking different parts of the body- but that going gluten free if not coeliac was probably pointless and those hyperthyroid patient probably got better over time as part of the natural course of the disease. (See next point)
•the overactive thyroid gland will just burn itself out over time (usually happens within 18 months hence this is the suggested time for using carbimazole before coming off it) at which point the hyperthyroid patient will inevitably become under active and need levothyroxine. It was suggested that only 10% don't follow this pattern- I'm in the 10% apparently!
• RAI is their preferred option now I have 'relapsed' (or by my interpretation- taken off carbimazole too suddenly)
•that it will usually only take 3 months to get the levothyroxine levels right after RAI and that will be my dose for life.
I asked for studies of long term carbimazole use so I could better understand the risks- he said there weren't any- and I suggested it was because of the lack of patients who are allowed to go down this route... he agreed. At the end of the appointment I said I wanted to do at least another 12 months with carbimazole and monitor the situation. This was agreed to- which I am grateful for.
Any thoughts?
Thanks
SJ
Written by
SoozeJ
To view profiles and participate in discussions please or .
OMG - straight out of the horses mouth. Those who've had RAI will respond when they read your post.
How many people have had a thyroidectomy or RAI and were really left without much support and little will of the Endo to aim for the best route for recovery. Especially those who have no resource to the internet and left to get on with it.
I am glad he's agreed with your request for a further 12 months on carbimazole.
He suggested diabetes, thyroid, MS and coeliac are on the same spectrum, and triggered by the antibodies attacking different parts of the body-
But they're not the same antibodies. Each autoimmune disease has it's own antibodies. For example Grave's is TRAB or TSI; Hashimoto's is TPOab or TgAB - and they're both thyroid diseases, but different antibodies. And gluten-free is usually recommended for Hashi's antibodies. However, people can be sensitive to gluten, without having Coeliac. In which case, they benefit greatly from going gluten-free.
•that it will usually only take 3 months to get the levothyroxine levels right after RAI and that will be my dose for life.
Well, that just goes to show how little he knows about anything!
This kind of thing makes me so cross when Endos arrogantly state things that we know are not true. There are holes in his statements, clearly he needs some training!
Endos very rarely know much about thyroid. And, I think, they have a tendency to make it up as they go along, to hide the gaps in their knowledge. Even GPs do that. It's a stupid thing to do, but they think we don't know any better, and will just accept whatever they say.
Why, especially if patients have no internet access, do the professionals make these statements which are blatantly untrue to us, who've had to search for answers. Luckily if we find/found Thyroiduk.org.uk or HU nowadays that we can recover our health, despite doctors and endocrinologists ruining our health completely.
And I seem to have TPO and TRAB ... so I guess he has contradicted himself there too! it's all very confusing to be given information that contradicts so much of what is really happening to people. As a patient we are expected to trust that they have the correct training and know better than us lay people, but it seems that this is not the case
Thanks for posting your experience, I’m always interested to hear what these endos have to say since I also have hyperthyroidism and have not yet seen an endo myself. I was first diagnosed at the end of July last year, I’ve finally had my first endo appointment come through for end of April. After spending a lot of time reading on this site I’ve wondered why 18 months seems to be the length of time they’ll try carbimazole for, after hearing your endos explanation that the thyroid will burn out after that time seems flawed. It took from July to February for my Free T4 and T3 levels to fall into the normal ranges on carbimazole, my free T4 was 88pmol (range 11-25 at diagnosis). My TSH is still suppressed, I expect it could take a while to pick up. I’ve heard that others have become hypothyroid within 6 weeks of starting their medication. This disease certainly isn’t ‘one size fits all’ and I don’t see how they can try and apply that logic and foist the same treatment plans on everyone.
Glad you’ve managed to get them to continue with the carbinazole for a while longer. I hope it all works out for you.
I am also glad that he agreed with me. They talk about making informed choices but the reality is if the medic you are working with refuses to prescribe, then you're buggered!!
My goodness you have only just got your 1st endo appt? Wow that is a long time- i too was diagnosed the same time as you, my local hospital was a 6 month wait so i transferred out of area in west midlands and waited just 3 months instead but in saying that i am on my 2nd endo as they are useless, im very disatisfied with the care and attitudes-good luck with your appointment and heres hoping you get a good one.xx😊
Thanks Rmichelle, to be honest when I was first diagnosed I was very anxious to see an endo but having read so much on here of people’s experiences with them, while I’m glad the appointment has finally come through I’m not pinning a lot of hope to it. I’m not expecting the endo to be able to enlighten me any further or come up with any kind of plan that I’m going to like. If they do then great! The one I’ve got doesn’t even say that they are an actual endo just ‘general medicine’, so we’ll see.
I haven’t had so much as a leaflet from my GP, everything I now know has been from reading on here and the web. It’s shocking that they diagnose people with life changing diseases often after then have been unwell for a period of time and have known something wasn’t right. They just prescribe them some pills and leave them to their own devices to worry and second guess what is going on.
I asked my GP to test for antibodies so do I’d know if the cause of the hyper is autoimmune and the result of the TPO ab came back 146 (should be below 34) Receptionist told me when I rang for result ‘I don’t know what that means but I’m sure it’s fine’ absolutely clueless!! Also Dr should probably have tested TSI abs anyway 🙄
Yes i understand, you are right we gain all our knowledge from this forum and thank god for it, i think you have got the right attitude about your endo appointment- my 1st one was a registrar of general medicine whom i saw twice and i decided he was just very patronising and new to all this-not right for me!! Then i got lumbered with a trainee who was very rude and could not even understand reading the blood tests and thought i tsh of 5.36 was great!! You can imagine what i thought.😨i have hashis and suspected graves, both previous endos would not do tsi antibodies bloods as they stated that everybody has them!! Lol😊. Emm!! Hence why i'm looking to transfer hospitals. I saw a lovely thyroid consultant radiographer on monday gone he was a professor -he done my 2nd thyroid scan, he was very polite and very knowledgeable and also asked if i had any concerns and he inspired confidence-im tracking him down at the moment as he is not based at that particular hospital.
I really do hope you get a excellent 1st appointment and feel hopeful😊😊.xx
My experience is similar, I did see an endo quite quickly but I was left to take medication without any information nothing. I thankfully stumbled on this site. It’s terrible we are given a diagnosis of a life changing disease then left to it
Stick to carbimazole as long as possible. Do blood tests often and adjust dose as necessary so you don't end up hypo.
Better to suppress your own natural overproduction than to end up like most hypos - mismanaged, under medicated and ill without proper support and correct medication.
He'll drop you like hot potato as soon as he kills your thyroid one way or another.
Well Soozej I have had Graves’ disease for over 8 years and have been on carbimazole all that time. I have refused rai and surgery as I have always said a cure may one day be found.
Since November last year I have been off the carbimazole to see what happens.
I am at the moment in remission but know it is early days. If I do go overactive again I will resume the carbimazole.
Hope this helps, if you want to continue and feel ok stick to your guns.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
RAI agreed but now unsure- advice needed
Looming Endo Appointment 
Arrogant Endo
