Teenager with graves disease

[Bearhouse]

Hi there just wondered if anybody has any advise or stories to share about having Graves disease at a very young age . My daughter was diagnosed 6 years ago when she was 9 and is currently on carbizamole tablets . Fortunately she is being controlled on a low dose of 7.5mg and under but unfortunately can't manage to come off the tablets completely. She has now been offered surgery to remove the thyroid and i am wondering if this is the best option for her, she is still young and i dont know how safe it is if she stays on the medication long term .

[bantam12]

I was eventually diagnosed at 12, I couldn’t come off Carb without relapsing immediately so I had a partial op when I was about 18, I was fine until my 40s then Graves came back with a vengeance so I had RAI. My experience is it’s to problematic staying on Carb especially when it’s difficult to find a stable dose, the ups and downs are not pleasant.

My sister had a total thyroid op in her teens and hasn’t had any problems since, she’s now over 60.

I would say yes a total op is the way to go then no chance of a relapse in the future.

[pennyannie]

Hello Bearhouse and welcome to the forum;

Sorry to read this - I too have Graves but diagnosed when mid 50's and given RAI thyroid ablation and fell into this forum some years later when very unwell.

I was only ever treated with T4 - Levothyroxine and after being refused through the NHS any of the other treatment options decided to self medicate in around 2018 and am now much improved, buying my own full spectrum thyroid hormone replacement and have my life back.

Just for reference :

pubmed.ncbi.nlm.nih.gov/338...

ncbi.nlm.nih.gov/pubmed/306...

For all things Graves Disease I found the Elaine Moore Graves Disease Foundation website the most well rounded of everywhere I read and the sections on holistic, complimentary and alternative treatment options very interesting as after all we are looking at an auto immune disease for which there is no cure. elaine-moore.com

The thyroid is not the cause but the victim in all this as the cause is one of the immune system response having been triggered.

If you can find the triggers you are more than half way through solving the puzzle, as no two peoples journey with Graves is the same and why it is such a poorly understood and badly treated auto immune disease in mainstream medical.

Having been triggered an anti thyroid drug like Carbimazole simply buys the patient time as we wait for the immune system to calm back own again and the body hopefully reset itself.

Thyroid removal - either a thyroidectomy or RAI simply removes the target of the attack from the immune system but the patient is then still with Graves but hypothyroid which is not as easily managed as you may have been advised.

You are still on life long medication and at the end of the day if the Graves is managed well on the AT medication - why change anything ?

There are forum members who have been on a low dose of an AT medication for years and at times of stress and anxiety - generally seen as triggers for Graves - they simply restart the AT medication while life dictates so and get on with their lives - and I think it all comes down to the question of the degree of inconvenience having to be lived with.

This must be especially hard trying to make a decision for your daughter and again, maybe wait until she is old enough to understand and decide for herself.

Research and trials have started on a vaccine - more details of Project Daviad on the British Thyroid Association website under research. btf-thyroid.org

When metabolism isn't running well - either too fast or too slow - it becomes difficult for the body to extract key nutrients through food - no matter how clean and healthy a diet followed - and core strength vitamins and minerals can simply nose dive through the ranges - so are there regular checks made on her ferritin, folate B12 and vitamin D ?

How is your daughter - is she inconvenienced at all by staying on the AT medication?

As you will see from the very first research paper above it is now suggested that the longer the patient stays on the anti thyroid medication the better the outcome for the patient and the current thinking of many endocrinologists now, somewhat out of date.

[shaws Administrator]

You are right to ask questions before a decision is made for your daughter to have her thyroid gland removed. You will be worried at present and it is a difficult to know what is best.

Members who have done so will respond and I hope whatever is decided works well for your daughter.