[goodcheermom]

#1060234

Hello!! I have just been diagnosed with Grave’s Disease. I have been doing some research online. I have a question that I can’t seem to find the answer too. My doctor has recommended that I be put on medicine for a couple of months and then either have RAI or have my thyroid removed. I know I will most likely become hypothyroid after but what else happens? Do my symptoms start going away when I start the medicine? Do they go away after the RAI or surgery? Do they not go away? Since I have read that there is no cure for Grave’s what else can it affect in my body after the RAI or surgery? Can it start attacking other parts of my body?

Thanks!!!
Karen

[Kimberly]

#1181405

Hello and welcome! The “Treatment Options” thread in the announcements section of the forum has two nice links that go through the risks and benefits of each of the three options. The third option in addition to RAI and surgery is longer-term use of anti-thyroid drugs. The medical guidance recommends a period of 12-18 months on anti-thyroid drugs, although some doctors (including my doc) are now supporting longer-term use of ATDs. It’s important, though, for you to understand the reasons why your doctor is recommending that you proceed straight to RAI or Surgery, as no two patients are alike!

In terms of symptoms, you should start to see some relief once your levels are normal and stable. If you went for some time without a correct diagnosis, then the healing process can take a little longer.

You are correct that RAI or surgery will take care of your hyperthyroidism, but will not cure Graves’ itself. The eye and skin issues *mostly* occur in conjunction with hyperthyroidism, but they can occur either before or after hyperthyroidism is treated. And with RAI, there is an increased risk of a worsening of eye issues.

[goodcheermom]

#1181406

Thank you!! I am going to call the doctor tomorrow and she wants she wants to do now that I will be finished all the testing she wanted.
Karen

[adenure]

#1181407

Hi Karen,

I’m guessing by your user name you’re a mom! Me too! I have 4 boys- I’m not a cheer mom, but I’m a gymnastics mom! I was started on methimazole (an anti thyroid drug) for 7 weeks- 5 mg. a day. It helped get my thyroid levels normal, but I was one of the few who had issues with the medicine because it escalated my liver enzymes 8 times the normal range, so I had to stop it right away. Six weeks later, I had a thyroidectomy. That was over a year ago, and I’m doing pretty well now! I would suggest asking for liver enzymes labs to go with your first set of labs to check your thyroid levels after being on the meds. for 6-8 weeks. It is a good precaution.

My symptoms started to go away on the methimazole – about 2 weeks after I started it. It wasn’t perfect, but it was better. I must say that I feel better after my surgery than I did on methimazole. I’m on Synthroid now and have my life back, homeschooling my boys, living life, exercising, and enjoying life again. So, yes you do get better! I had terrible anxiety, panic attacks, insomnia, weakness, slight tremors, diarrhea, quite a bit of weight loss and didn’t eat anything. All I “ate” was Ensure drinks; if it wasn’t for those, I would’ve starved as all foods, smells made me gag. All of the above symptoms are now GONE! Yay!

I didn’t choose RAI because I didn’t want to be away from my family, I also was (and still am) nursing my youngest. I didn’t want to wean him. I was concerned about possible eye involvement and also didn’t want to wait for my thyroid to die out or be dead inside me. I wanted to move on with life sooner than later so I opted for surgery. There is no “right” answer though as everyone is different.

I haven’t had any other complications from Graves and am hoping it will continue that way. I know eye complications can happen at any time. I have a little bit of dry eyes off and on, but I use Systane eye drops (the non preservative vials) and that helps quite a bit.

Start with the meds., get labs done, and then go from there- that would be my advice.

[goodcheermom]

#1181408

Thanks!!

[barbra]

#1181409

Hi Karen,

After my diagnosis I was on Methimazole and beta blockers for 3 months and then had RAI. I went hypo and am now on Levothyroxine, 75mcg. After a couple of adjustments I have been feeling fine. Now, all I’m taking is the Synthroid, a blood pressure medicine and something for sleep. My doctor’s appointments are now 3 months apart and I’m hoping the 75mcg dose works for me. I’m not going into the not so swell times before the RAI or even the hypo period. Finding out what the problem was and starting the medicine made a huge difference. There was relief from the worst symptoms. Of course we are all dependent on blood tests so what’s down the line is hard to tell. It’s different with everyone. What happens to one may not happen to someone else but this forum is a pretty good guide. Like I said before someone has always “been there done that”.

Take care and keep in touch.

Hugs.

Barbra.

[KristenB29]

#1181410

I joined this forum just a week ago and received some great advise which led me to start on methimazole. The Endo did push for RAI right away, but I decided to give the ATD a try first for 2 reasons. Most important reason is my 2 small boys and having to be quarantined from them. I do have the help if it comes to that, but the specialist recommended 5 days away from them. Which feels like an enternity, but also makes me wonder if the 5 days was long enough. The second is that I was feeling rushed into a decision and wanted to just digest everything before running into something so permanent such as RAI. Well I’ve been on it 8 days now along with a beta blocker and I do feel better. I’m not sure if the ATD can help that quickly (I am on 40mg/day, which I split in 2 doses) or if it’s the beta blockers actually blocking the symptoms. I am very diligent and take my doses at the same exact time every day and set up alarms on my phone for the reminders. My only symptom left right now is that I get tired easily and feel weak by the end of the day. So I just take it easy as much as I can. I do work full time and have an 11 month old and a 3 year old to take care of. So my schedule is very busy, but I am managing. I am looking forward to blood work in 3 weeks to see if the ATD is working and if I have any side effects.

[Kimberly]

#1181411

@KristenB29 – I had a lot of fatigue the first few weeks on methimazole — and I didn’t have small children to keep up with! Hopefully, you will start to get your energy levels back soon!

[Shugie53]

#1181412

I am new too. Dont know what all the abbreviations mean.
I went for my 3 wk blood test after taking 15 mg methamizone and within hours after coming home from the dr. I broke out with the most severe case of hives I couldnt have imagined. The endo. said it was co-incidence and it may or may not happen again. I just took the last of the prednisone pack and on pins & needles as to whether it will reoccur. The nurse told me hardly anyone has an allergic reaction to methamizone.
thanks

[Kimberly]

#1181413

Hello and welcome! The issue with the hives is tricky…some patients do have this type of skin reaction as a side effect from anti-thyroid drugs. However, in other cases, the hives/itching are actually caused by the hyperthyroidism itself and will resolve once thyroid levels are stabilized. The latest medical guidance notes that for “minor” skin irritation with methimazole, you can keep taking the drug in conjunction with antihistamines. Definitely stay in close contact with your doctor on this issue, though, as you want to catch this ASAP if it becomes more severe!

[cmac]

#1181414

Hello Goodcheermom, After 14 months on Methimazole, I have just discontinued it, with my Endo’s consent. I will have labs in 2 moths to check on my levels, but they’ve been fine for 6 months on a small dose of MMI. I started at 15mg and recently was just 2.5 mg every other day. My point is it is far too early for you to assume you will eventually have to choose between RAI and TT. You may be like me and many others who get better on the MMI and then have remission. Time will tell, I know. Lots of people have remission and then relapse years later. I will always have to watch myself, but right now I feel like I did before Graves. Perhaps you will have a similar experience. Good Luck.

[goodcheermom]

#1181415

Just finally got my prescription for methimazole. 10mg 3 times a day. Next appointment with the doctor is Dec. 11th. Can’t wait to start feeling better!

[DIY]

#1181416

goodcheermom wrote:

Just finally got my prescription for methimazole. 10mg 3 times a day. Next appointment with the doctor is Dec. 11th. Can’t wait to start feeling better!

I took Methimazole for 8 years before having a TT just this past Monday. I never had any side effects from it, but they were always in the back of my mind. I never felt great on it but got through the day. I just always had a hard time coming to grips with removing my gland so I stuck it out. This summer it got more difficult to control, so I did it since I knew after 8 years remission was not happening. Educate yourself and learn what your body is telling you, best of luck to you.

[Corky]

#1181417

I am newly diagnosed too. I decided to get the surgery right away, so that I can address this quickly. I’m scheduled to have it next week. I am worried/bothered that I won’t have a thyroid anymore. How will this change the rest of my life?

[Chrissiesmom]

#1181418

Hello all,
I was recently diagnosed with Graves’ also. Not sure what to think or do yet. I was told I had both Hyper and hypothyroid (didn’t know you could have both!). But had lost about 30lbs. rapidly, but felt more energetic, though eating was not an interest at all! Now gaining weight, fatigue is back, and my TSH very high, but my T4 and T3 are low. Endo put me on Methimazole at first, but removed me from it due to results, and now taking nothign while they monitor my levels for the next 3 months. Not sure about this roller coaster ride. Just wanted to express some frustration with those of you who have been dealing with this. Diagnosis of Graves fairly recent, but the thyroid has been an issue for about a year, but was taking Armour thyroid, but they switched me because they said I switched to being hyperthyroid. I’m just now starting to explore issues of diet, what to eat/not eat, etc. Guess I’m in for a long haul of health issues???? A bit overwhelming and depressing from all the stuff I am reading. The doctor has not discussed any surgery or radiation treatments at this time though.

Is anybody willing to tell me how long they have battled with this before they tried the surgery/radiation route?

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