Is RAI the right decision for a 20 year old.

[Foxterrier2]

Hi, I’m new to this forum and am posting on behalf of My daughter who is 20 years old and has Graves Disease, she also has Down’s syndrome.

This is the 2nd time in 4 years that her thyroid has gone overactive . The first time she was on carbimazole for around 18months and then was off meds for approx 18 months before it suddenly returned. She has now been on carbimazole for 12 months gradually reducing from30mg to 10mg when she went hyper again in June 18, Carbimazole was increase to 20mg for around 8 weeks and after recent blood tests is now back down to 10mg. Her Endo has advised that RAI would be the best option for her due to the recent problems with her going hyper whilst on meds after a spell when things were stable. He said that it isn’t good for her to be on carbimazole long term. A thyroidectomy is also an option but he said there is more risk due to it being invasive. My daughter is scared of both options and doesn’t really understand why she needs this.

I am so anxious about making the right decision for her as she can’t always explain exactly how she is feeling and I don’t want her to end up feeling worse or creating problems for the rest of her life

She has piled on a lot of weight, is always tired and grumpy since she started on carbimazole 4 years ago, she also has Coeliacs disease.

[shaws Administrator]

Members who have similar condition to your daughter will respond when they read your post. I am sorry, however, that she has now also developed a hyperactive thyroid gland which must be awful for her trying to cope with flare-ups..

[Hennerton]

I think you will find many members saying it is a difficult step to take whichever you do. I had thyroidectomy for Graves’ and have regretted it ever since. It would be helpful to see copies of your daughter’s blood tests. You are entitled to these and to know what the Endo means by hyper. I did not pile on weight on Carbimazole and I wonder if she is on too much.

You could ask your Endo if he will try her on the other medication for Graves and I am afraid I have been working all day and my brain is refusing to remember the name but something beginning with P. Sorry to be useless but if I leave this post to google it I will lose all my typing! Another member is sure to provide the answer. I was never offered this alternative medication but I know someone who has been on it very happily for about ten years and had three babies in that time, so it cannot be a dangerous drug to take long term. Her plan is to stay on it permanently, as she feels perfectly well on it. I will try to find the name and post again...

[Hennerton]

It is called PTU. Has a much longer name but your Endo will know it by this abbreviation.

[Valarian]

Sometimes life is just so unfair.

I'm pretty sure the endos will say 10mg/day is too much Carbimazole for long-term treatment because of the potential impact on liver and kidneys, and it sounds as if your daughter has been unable to remain stable and within range on even this amount. This would apply to any twenty year-old, but in your daughter's case, you would also need to consider whether she will comply with the treatment regime (fine if you manage this for her - but maybe not if she lives independently, or if there is any aspiration for her to do so), and whether she would recognise the need to seek a blood test if she had a sore throat or mouth ulcers.

In the case of RAI, one thing you might need to consider is your daughter's need for hugs and cuddles, especially under stressful circumstances, as she would probably need to do without these for a little while after treatment. On the other hand, RAI is less intrusive than surgery.

Does your daughter have a Down's specialist ? There may be other health factors that would help decide the best opton.

I really don't envy you; I suspect I will end up with these options myself at some point, and will find it difficult enough to make the decision for myself. Having to make it for someone you love must be so much more difficult.

[Marz]

I have heard of Downs Syndrome people being susceptible to being Hypo rather than Hyper. Do you have copies of all blood tests so you are able to check which anti-bodies were tested prior to diagnosis ?

[pingpong]

I have been on Carbimazole for nine years and am currently taking 15mg - this has varied over time being as high as 40mg when things were out of control. I would never advise RAI (but that is my personal view). I have read many articles and differing views from people but it does seem that a leaky gut can cause big problems. I am trying to get my gut in good order and am feeling good about it at the moment. Coeliacs disease would point to this also. I take Milk Thistle to counteract any liver problems but have had none. If the weight starts to go on then I reduce my Carbimazole, likewise if the weight falls off quickly and I am continually starving then I increase it slightly. Hope this helps.

[Bluedragon]

Hi, how difficult this is for you both. As others have said, don’t rush into anything, research and read. Hashimotos can swing in hyper and back again.

I would consider seeing a herbalist- there are herbs that will support her thyroid but also her liver and digestive system.