[wilson68944]

#1060488

Hello all,

As you read in my title I’m a new member to this site. I thought I would brief you all on my struggle with severe Graves’ Disease. I’m a 28 year old male and I was officially diagnosed in 2007 when I was 21. Although the earliest I remember distinct Graves’ symptoms was in 1999 when I was 13 in 8th grade. The year before I was diagnosed I knew something was terribly wrong. I am 6’2″ and I weighed 107lbs when I was diagnosed. I was eating 4,000 calories a day and would throw up nearly daily, too. I had severe intolerance to heat, I had bad heart palpitations and felt like I was going to collapse from exhaustion just from climbing the steps. I had so many symptoms, almost all of them with the exception of severe thyroid eye disease. I say severe because when looking at pictures from years ago I can tell my eyes have become more prominent but I definitely don’t have clinical TED.

I have been told that women suffer from Graves’ much more than men but when men do get it, it is almost always more severe. I don’t know how true that is though. So, since 2007 I’ve been hard headed and avoided any permanent treatment because I thought I was too young to do anything permanent to myself. Because of that flawed logic I have yo-yoed for the past 7 years on Methimazole. Fluctuating from Hyper-Hypo. I am currently on 40mgs of Methimazole a day which is a normal daily dose for me. Has been for years. However, I have fluctuated anywhere from 20-60mgs per day depending on my labs. I can never stay on a dose lower than 40mgs daily for long though because my TSH and FT4 will always swing hyper and then I have to again take 40-50mgs of Methimazole daily to correct my levels.

Recently, I threw in the towel after even 40mgs of Methimazole daily wasn’t enough to control my Grave’s anymore. At that point I told my Endocrinologist I was willing to submit to RAI. To my surprise, my Endo told me I was no longer a candidate for RAI and I would almost certainly need Total-Thyroidectomy. This was confusing for me because for years my Endo had been pushing for RAI and I resisted. Then, after one really bad lab she told me it was no longer an option after 5 years of advocating RAI. I insisted I wanted to try the less invasive RAI first rather than jump right into TT. So I went for a second opinion and that Endocrinologist agreed RAI would be a suitable first line treatment. I was told that I may need it more than once due to my severity but that my doctor would see to it I would get a large dose to hopefully knock it out on the first shot. So I received RAI on 6/19. The weird thing was that when I was ready for my RAI dose the Nuclear Medicine doctor told me she and my Endo agreed on a dose of 10.5 millicuries, which if anyone is familiar with the dosing that is a very low dose of RAI. I was dumbfounded that after going to that particular hospital because my doctor said they would be more liberal in their dosing that now I was being told because my thyroid iodine uptake was so high (80% uptake) that actually in my case less was more because the majority of the RAI was being absorbed by my thyroid. I was told normally patients with Graves’ have an uptake of 50% give or take so they need a higher dose because they are only absorbing a fraction of the iodine. Has any one else heard this before?

So it’s been about 7 weeks since my RAI. I’m on 30mgs of Methimzole daily still. I stopped all Anti-Thyroid Drugs for 2 weeks to get my RAI but I couldn’t bear it any longer so I had to resume ATD’s. My last labs were 3 weeks ago at the 1 month point from my RAI and I had a TSH of 0.04 and a Free T4 of 1.4, keep in mind this is whilst still on 30mgs of Methimazole daily.

I see a few people on here who are on 2.5 or 5mgs of Methimazole daily and it makes me feel like I’ve got it bad if I’m on this high of medicine after all these years.

I feel like maybe I can feel Hypo symptoms creeping on because I have no appetite but I’m still losing a lot of hair right now. My hair loss always ceases when I swing Hypo.

I am interested in everybody’s experiences, similar or otherwise!! Thanks for listening to my novel! Sorry I wrote so much!

[Kimberly]

#1182919

Hello and welcome! Yes, there are two methods for determining a dosage of RAI. One (called calculated dose) does factor in the results of the uptake test into the dose; higher uptake means a lower dose of RAI and vice versa. The other option is for the doctor to estimate the thyroid gland’s size and give a “fixed” dosage.

We do have more women than men here, but we do have a handful of gentlemen who have been through RAI or thyroidectomy. (In fact, if you read thread from AZGravesGuy, which is a few posts below this one, he went through both!)

Not sure why your first doc refused to do RAI. The biggest potential reason for avoiding RAI is in patients with moderate-to-severe or sight-threatening eye disease, as this increases the risk of worsening. Also, if hyperthyroidism is severe, there is concern that this can increase the risk of thyroid storm, but it sounds like you had no issues with that. (Pregnant and breastfeeding women cannot do RAI, but that obviously wouldn’t apply in your case!)

Wishing you all the best!

[wilson68944]

#1182920

Hi Kimberly!

Thank you for taking the time to read my long post about my journey! I can tell you actually read the whole thing and I really appreciate it. I didn’t think anyone would since it turned out to be so long when I finished. I tried to edit it down but I really thought what I wrote was important in explaining my story and how I got to where I am today.

I’m glad to hear you have heard of this method of RAI dosing before. On face value it makes sense. However, when your doctor tells you for months they are going to give you the largest dose the Nuclear Medicine doctor will allow and even suggested a specific hospital to go to have it done because they typically dose higher, and then turn around, do a 180 and give me a low dose through me off a bit.

My first Endo said she was refusing now because I would need possibly as many as 3 doses of RAI and she said that could expose me to cancer possibly down the road when I’m older. If she had been consistent about that it would have been fine but she really changed her tune over one really bad lab and my history in general.

I’m still young but in my brief but thorough experience with doctors of all specialties, I’ve found inconsistency from one doctor to the next to be the biggest frustration. When you’re young you think doctors are superhuman geniuses functioning on a higher level. As you mature and have more experiences with them you begin to come to the uneasy realization that while they are highly educated they are just people like us that are “winging it” and guessing what will be the best course at the end of the day.

I will check out AZ guy! Thanks again!!

[Kimberly]

#1182921

Hello – This is an older thread that has links to 3 studies on RAI for Graves’ disease and cancer. The results were somewhat mixed, although I’m not sure if they looked at patients who needed repeat doses.

(Note on links: if you click directly on the following link, you will need to use your browser’s “back” button to return to the boards after viewing, or you will have to log back in to the forum. As an alternative, you can right-click the link and open it in a new tab or new window).

http://gdatf.org/forum/topic/42443/

Take care – and keep us posted!

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