# Need some advice!



## blady329 (Mar 12, 2011)

I feel so lost sometimes in this mess of Graves' disease and I thought I would finally get some advice from people who have "been there, done that." I was diagnosed with Grave's disease last July at only 19. I started on PTU and did okay on it for awhile, but pretty consistently I started developing low white blood count (agranulocytosis). I hit rock bottom in January with a WBC of 2.5. The highest it ever was was 4.6. I was switched to Methimazole but even though my thyroid levels are in normal range, my WBC is hovering at 3.5. I have seen the best surgeon on the west coast (He does 12 thyroidectomies a week), and he said he could do surgery. But, singing is my life and I am extremely fearful of messing with the vocal chords. Beyond that, his first opening for surgery is in May. He said to me, I am not sure your bone marrow will be able to handle this much longer. So that means to me, make a decision now.
I am looking at radiation which also has it's many cons, and especially scares me because I am only 20. If anyone has experience in RAI or having agranulocytosis, I would appreciate the input.


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## lavender (Jul 13, 2010)

I have Graves disease, and did not feel well on methimazole. It was just too much for my system to handle. I was only on it for about 4 months.

I had my thyroid removed in August. My voice was a little bit weak after the surgery. It took about a month for my full vocal range to return. Permanent vocal damage is pretty rare, and even less so with an experienced surgeon. Sounds like yours is very experienced. How did you feel about him?

I am glad I had the surgery. Felt tons better afterward. Finally got my thyroid replacement med right in January, and feel better and better all the time.

My surgery lasted about 3 hours, and I was in the hospital a little over 24 hours. Was on pain meds for 4 days after surgery. Kept an ice pack on my neck for a week. Drank a lot of herbal tea with honey.


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## Andros (Aug 26, 2009)

blady329 said:


> I feel so lost sometimes in this mess of Graves' disease and I thought I would finally get some advice from people who have "been there, done that." I was diagnosed with Grave's disease last July at only 19. I started on PTU and did okay on it for awhile, but pretty consistently I started developing low white blood count (agranulocytosis). I hit rock bottom in January with a WBC of 2.5. The highest it ever was was 4.6. I was switched to Methimazole but even though my thyroid levels are in normal range, my WBC is hovering at 3.5. I have seen the best surgeon on the west coast (He does 12 thyroidectomies a week), and he said he could do surgery. But, singing is my life and I am extremely fearful of messing with the vocal chords. Beyond that, his first opening for surgery is in May. He said to me, I am not sure your bone marrow will be able to handle this much longer. So that means to me, make a decision now.
> I am looking at radiation which also has it's many cons, and especially scares me because I am only 20. If anyone has experience in RAI or having agranulocytosis, I would appreciate the input.


Hi there, Blady and welcome!! http://img.photobucket.com/albums/v129/LuLu1471/welcome.gif[/IMG

This is a conundrum. Even RAI can cause some voice changes because the thyroid dies off but remains intact in the form of a shriveled up prune. I had RAI and I can feel my shriveled thyroid and it does bother my voice sometimes.

And what our Mod Lavender has said is absolutely in track about the surgery.

So................the bottom line is that you must make the decision after you do all the information gathering and do what you think is best for you.

I am sorry this happened to you!

Do you have a goiter, exophthalmos, pretibial mxyedema, thyrotoxicosis..................all clinical symptoms of Graves'?

Have you had RAIU (radioactive uptake scan) to check for cancer?

What antibodies' tests have been run? How about your liver? Antithyroid drugs are hard on the liver so I wonder if doc has run liver enzyme tests?

Are you male or female?

We are here to help you get through this by hook or by crook.


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## blady329 (Mar 12, 2011)

I am female, and yes I had RAIU and a ultrasound and was diagnosed with Graves through that means. I get a full CBC w/diff everytime, and TSH T3 and T4. I have something called Gilbert's syndrome and it causes high bilirubin numbers, but with the meds they have been higher and fluctuating. I have a small goiter, but did not have any major eye symptoms like bulging thankfully, but my eyes constantly tear up and I have to blink alot. But that has gotten better. I had the hair falling out, lost about 30 pounds in less than 2 months, didn't sleep because my heart was pounding out of my chest, couldn't walk up a flight of stairs, etc. Also a gross symptom was my poop was kelly green! I attribute that to the fact my body was in high gear and everything was being processed out so fast no nutrients were being taken out. And I shaked. I always had a tremor, but I had such a bad one during the height of my graves I couldn't hold a fork. Thyroid disease runs in my family, mom is hypo, uncle is hypo, aunt is hypo, cousin has hashi. I am the black sheep of the family, but once I have RAI or surgery, I will fit in .

I feel stuck with RAI though, because in a matter of a month for me everything changes so fast. I may be stable right now, but in 2 months time waiting for surgery I could be out of range or my WBC could drop... 
He is a fantastic surgeon but no bedside manner. I don't mind that totally, because I don't want BS from the doctor I want to know how it is! lol
But because he implied that I have had such a rough time on the meds, the decision should be made now. And since things change so fast for me, I don't feel like I have the time to wait.
I am nervous though about the thyroid "dump" with RAI.


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## Kendak (Jan 25, 2011)

Hi Blady-
I would not worry about the thyroid dump too much. I had severe hyperthyroidism with my Graves. My Free T3 was undetectable and I had RAI on Jan 28th. It has been 6 weeks and my T3 is still 15. I had two bad days after RAI so that is not really too bad. It CAN happen, not saying it WILL happen. Also, the worst was the itching that seemed to get 10 times worse for me, and I was a little short of breath on two different days, but for the most part, it was pretty simple. My symptoms seem almost exactly the same as yours!


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