[Sleepyhead]

#1017891

Hello everyone!
I am new in this forum and hope to get some advice.
About a year ago I was diagnosed with Graves disease causing an hyperactive thyroid. I lost lots of weight and I don´t think I need to describe the way I felt. Everyone here will know… Because I refused to wean off my daughter at this stage I apparently had no other option but taking Propylthiouracil. The tremor and the weakness disappeared but I continued feeling miserable, on top of it I developed severe panic attacks. I felt in a different way just as bad whilst my blood levels improved. When I weaned off my daughter we switched to Neomercazole. My blood levels are fine now, no more overactive thyroid but I continue feeling bad, this absolute feeling of pure exhaustion, ALWAYS tired no matter what. I didn´t have any panic attacks since about one month but lately I start to feel depressed, probably more because of this constant exhaustion whilst running after my two little kids. Why do I feel like that when my blood levels seem to be fine? I have some good days but not many and I never feel 100%. My Doctor thinks I just react sensitive and my levels should be more on the higher side in my case. This answer is not good enough. Yesterday he suggested considering Radioactive Iodine treatment since I am getting close to one year of treatment. He was hoping things would sort itself out within 6 to 12 month but since it didn´t happen we should go another route. Also because it would be easier to manage my levels?! My question is, would you agree on this decision? I am just confused why I feel so bad whilst my blood levels are apparently fine since 6 month at least. Is that really the way I should go after "only" a year of treatment? Can I still develop an underactive thyroid on this? I understood my endo that he wants to switch off my thyroid completely but need to ask more questions on that too. Didn´t have much time to process everything yet.
Thank you in advance
Silke

[Kimberly]

#1061491

Hello – I am guessing you are overseas, as Methimazole/Tapazole is generally used instead of neomercazole in the U.S.. I mention this because the American Thyroid Association and the American Association of Clinical Endocrinologists just came out with some guidance that suggests a 12-18 month period of Anti-Thyroid Drugs before weaning off the drugs to check for remission. The guidelines where you are might be different.

Would you feel better after RAI? This is a very personal decision that no one can answer for you. There are patients who do *great* on RAI, and others who find themselves struggling to find the “sweet spot” dose of replacement hormone several months after treatment. Another issue to consider is whether you have eye involvement. The ATA/AACE guidance that I mentioned above notes that Methimazole or thyroidectomy are the preferred choice of therapy in patients with active and moderate-to-severe or sight-threatening eye involvement.

While you are making this decision, have you had an opportunity to look at your last few lab results to see if you can spot any patterns between how you feel and where your levels happen to be? The “normal” range is fairly wide…and some patients feel better towards the upper end of the “normal” range, while others might feel better in the middle or lower end of the range.

Best of luck…please keep us posted on how you are doing!

[Sleepyhead]

#1061492

Hi Kemberly,
Thank you for your reply. Yes, I live in Australia; English is my second language so I need to repeat you to be sure I understand.

Kimberly wrote:the American Thyroid Association and the American Association of Clinical Endocrinologists just came out with some guidance that suggests a 12-18 month period of Anti-Thyroid Drugs before weaning off the drugs to check for remission.

That means before I decide pro or con RAI I should wait up to 18 month and although my levels might be still only in check because I am on medications I should then stop meds to see if I go in remission?

I don´t have any eye problems at all.

The patterns I might observed is, but its something I just noticed, that I feel more miserable when I get my menstruation and a week after. Its not the typical pms thing, its an increased symptom of my acutal problem I have since my issue- if it makes sense. My cycle is out of wack as well. We are doing some hormone tests as well now.

Kimberly wrote:The “normal” range is fairly wide…and some patients feel better towards the upper end of the “normal” range, while others might feel better in the middle or lower end of the range.

Ok, thats what my endo probably was trying to tell me just that you described it in better words. Makes sense. Thanks again. ” title=”Smile” />

[Kimberly]

#1061493

Sleepyhead wrote:That means before I decide pro or con RAI I should wait up to 18 month and although my levels might be still only in check because I am on medications I should then stop meds to see if I go in remission?

Hello – The 12-18 month range is just a guideline from U.S.-based endocrinologists. Some countries (such as Japan) are more supportive of longer-term therapy on ATDs. The Australian Thyroid Foundation might be a good resource for determining whether these guidelines are different in Australia.

Of course, you don’t *have* to stay on ATDs. Some patients choose to bypass ATDs altogether and select surgery or RAI as their treatment option. All of the treatment options have their pros and cons, so it’s important to do your research and make a final choice that you are comfortable with.

[Jessa]

#1061494

Hi, I’m new to this board and newly diagnosed with graves disease (last week). I’m wondering if anyone can point me to some useful resources on the relative risks and benefits of RAI vs. long-term ATD treatment. My dad also has Graves disease and has been on methimazole for 20 years without going into remission, but without any problems. My endo recommended RAI, but I said I wanted to at least try the drugs for a while to see how things go. She was fine with that and I’m now on methimazole (60mg) and propanalol. Started feeling better immediately! I know (from research and the posts above) that doctors outside of the US tend to be more supportive of long term ATD therapy than doctors here, but I’m wondering if anyone knows why that is. I’m looking for some good resources yet that clearly lay out the benefits/risks of RAi vs. drug therapy. I have 2 young children at home so I hate the idea of being quarantined from them for 7 days if I did the RAI, and I’m not planning on having more children, so that’s not an issue.

Since I haven’t had any bad reactions to the drugs yet (knock on wood), I’m sure I have plenty of time to research the various options, but would love to get started. Any suggestions of resources to start with would be greatly appreciated!

Thanks everyone!

[Author]

Posts