Carbinazole & Exhausted

[Bluetit63]

My husband is on Carbinazole 10mg since August when diagnosed with Graves disease, he is more exhausted & sleep deprived than he was before diagnosis. Maybe not the correct dosage or just the Graves. Still waiting to go back to Nuclear Medicine but waiting forever for a follow up apt which should have been 8 weeks after diagnosis, its now 5 months & no apt (but we are chasing that up with the hospital). Anyone else has same experience?

[SeasideSusie Remembering]

Bluetit63

Do you have test results, including reference ranges, from when he was diagnosed?

Do you have current test results with ranges?

Maybe his thyroid hormone levels are currently too low and causing the exhaustion.

Was his Graves disease diagnosed after testing TSI and TRAb antibodies?

Are you in the UK. I am in Wales and my friend who was diagnosed with Graves keeps having her second follow up appointment cancelled and rescheduled, cancelled and rescheduled, it's beyond a joke!

[shaws Administrator in reply to SeasideSusie]

It's awful that appointments are cancelled especially when people are feeling very ill. There's no-one else they can turn to.

[Bluetit63 in reply to SeasideSusie]

Hi, we don't have any tests results, I am still getting my head around all the ranges/levels etc so feel like a real learner at the moment!

Yes we are in the UK, Kent. I am hoping that my e-mail to the PALS team at Medway hospital will get somewhere.

I will try to get the results when we get the next apt.

Thanks for trying to help.

[shaws Administrator]

I'm really sorry that your husband is left 'high and dry' and when we don't really know what's happening to us especially if we haven't been ill before and have no-one to explain what's happening - it is a very long wait.

I had an incident in Sept '18 and first appointment Jan '19 - but no information really given to me at all. The next appointment was in May '19 and then cancelled and all follow-up appointments cancelled and now await second consultation in 2020.

[Bluetit63 in reply to shaws]

It is so frustrating, 1st he was misdiagnosed & have a partial thyroidectomy only to be told the morning of surgery that looking at the scan the surgeon decided it was not what was 1st thought, he has a toxic nodule & then Nuclear Medicine diagnosed Graves. It is complicated because he also has haemochromatosis which may be confusing his symptoms as well. But I am trying to learn more so we can understand better when seeing the specialist.

How frustrating for you as well. I have never been able to fault the NHS with previous care but this is terrible. I hope you get something soon.

[asiatic]

Graves is meant to be overseen by an endocrinologist unfortunately your experience is typical and like me you find yourself for extended periods in the hands of a GP who probably knows little about the disease. My advice would be to start learning all you can about Graves. Books by Elaine Moore are good and can be downloaded to a kindle. Even when you finally see an endo there is a high chance he will be a diabetes specialist and may not be particularly knowledgeable about autoimmune thyroid disease.

First thing is to have TRAb or TSI test to make sure it is Graves.

Then you need to be monitored carefully with full thyroid panel of TSH fT4 and fT3. If you put the results on here people will comment to make sure you are on the correct dose of Carbimazole which should quickly make your husband feel better. Then you have to consider what choice of long term treatment you want to follow. At first I found it quite daunting trying to understand the disease and all the controversy surrounding it. However it is necessary to understand about it in order to have a dialogue with any doctor telling you your blood results are perfect when you are feeling awful and unfortunately this is frequently what happens. With correct treatment your husband should feel better soon.

[Bluetit63 in reply to asiatic]

He is supposed to be under Nuclear Medicine, they diagnosed the Graves. He had more tests. I will try the book, thank you as a lot of this does go over my head a bit. Like you say its quite daunting understanding it all. I will make sure I get the results next time, we never thought about asking for a copy of this info. The problem is you start to Google everything only to get more confused.

Thank you for your advice.

[asiatic in reply to Bluetit63]

I have had Graves for 5 years and am still on a learning curve. You say he was treated in nuclear medicine. I too had a radioactive uptake scan which showed diffuse uptake suggestive of Graves. If your husband has a toxic nodule this will cause his hyperthyroidism but to have a diagnosis of Graves you need antibodies tested. It was over 2 years before I had TRAb tested and still fail to understand why it took so long.

[Bluetit63 in reply to asiatic]

It was also blood tests which confirmed this along with the radio active uptake scan. I will check if the anti bodies were also checked. I think we probably didn't fully understand or take it all in at that visit when diagnosed, we literally had to learn all about the thyroid over night as everything happened so quickly. The doctor did try to explain but you take it they have done all they need & we need to go away & fully grasp how the thyroid works, TSH, TRAb etc...Well if you are still learning, we will learn as we go on I'm sure. 😯

[Angel_of_the_North in reply to Bluetit63]

Often they don't test antibodies so it still might not be Graves

[pennyannie]

Hello Bluetit

As mentioned Elaine Moore has written books but she also has a very well researched website that might be a quicker way to some information. There is an open forum much like this excellent website and it may help you to keep an eye on both thyroid specialist websites.

She has Graves Disease and found no help or understanding in her treatment journey back in the late 1990's so started by writing a book to help others who might be in a similar position. She is a medical researcher by trade and I found her book a bit " heavy going" and then found the website which I think is a little more easier to work through.

I was diagnosed with Graves back in 2003 and treated with RAI in 2005 which I deeply regret, and now have to manage thyroid eye disease, hypothyroidism and lingering Graves symptoms.

Graves is an autoimmune disease that is caused by your own immune system attacking your body. The thyroid is a major gland and when under attack can present with a whole set of seemingly unrelated symptoms, with some considered life threatening.

So, in effect the thyroid is the victim in all this and not the cause, the cause is the person's immune system. The anti thyroid drugs, such as Carbimazole are taken to block the production of the thyroid hormones, thereby reducing thyroid hormone levels and attempting to reduce the symptoms experienced.

It is a difficult time, and suggest you start to read up on this poorly understood and badly treated auto immune condition so as to be able to have some control and input when faced with decisions in the future.

[Billyboy2u]

Pennie annie what a good simple explanation of graves/thyroid action and reaction.

In reality it’s the graves that kicks all this off and the thyroid that just defends itself or your system.