Hi everyone!
Im very new to this kind of stuff, so please bare with me. I am struggling and finding it very hard to deal with my symptoms, so this is my last cry out for help. I was diagnosed with Graves disease last May, and underwent the RAI treatment February 8th. I was not a candidate for Thyroidectomy due to serious symptoms with my heart I was experiencing. I have been feeling so horrible ever since I took the RAI and was just wondering how much longer I have to live like this. I developed chronic hives 3 months ago that come every single day. I also developed an eye disorder that is very painful and hard to endure. I am feeling completely helpless and miserable. Any information would be greatly appreciated!
i'm new to this also... but my advice would be to get your booty back to the dr. if the rai treatment killed your whole thyroid you will need to be on medication for hypothyroid for the rest of your life. if the whole thyroid was not killed there is a possibility that the remaining thyroid is still overactive. either way i'd see the dr asap.
Hi everyone!
Im very new to this kind of stuff, so please bare with me. I am struggling and finding it very hard to deal with my symptoms, so this is my last cry out for help. I was diagnosed with Graves disease last May, and underwent the RAI treatment February 8th. I was not a candidate for Thyroidectomy due to serious symptoms with my heart I was experiencing. I have been feeling so horrible ever since I took the RAI and was just wondering how much longer I have to live like this. I developed chronic hives 3 months ago that come every single day. I also developed an eye disorder that is very painful and hard to endure. I am feeling completely helpless and miserable. Any information would be greatly appreciated!
I had to aunts that listened to their MDs and went the RAI treatment route with out trying anti thyroid meds first. The RAI was insufficient to kill off the thyroid ANd instead destabilized it's functionality. After two years fighting to treat it and one undergoing a second RAI treatment, they had to undergo thyroidectomy's.
You need to be monitoring your TSh, FT3, and FT4 levels. To help with the skin issues you can research l-carnitine supplementation. For the eyes go to a neuroopthamologist. Unfortunately RAI treatments have been known to cause aggravation of graves eye disease.
Were you not offered the option to try anti-thyroid meds. You sound like you are still hyperT. My mom had a partial thyroidectomy to CURE graves. Her thyroid lobe grew back nastier than ever.
There are a lot of factors. You need an MD willing to listen and work with you as a partner. I agree get your booty to the MD and request more tests!
MG
__________________
If we learn by our mistakes, I am working on one hell of an education.
Hi and thankyou so much for you listening and understanding. I am currently taking 125mg of Synthroid. I was taking anti-thyroid meds for so long, but none of them were working.
Anyhow, I just went to the Dr. yesterday, and my levels are finally NORMAL. It has been over 2 years and it feels so great to have them finally normal. Now if I can just keep it that way, life would be much simply. Hives are my next thing to figure out, hoping they can be figured out!
Beware of NORMAL. Get a copy of your results and make sure you are in the OPtimal range of NORMAL. Being in NORMAL range while still exhibiting symptoms may not be quite optimal for you. What percentage of normal range are you?
Sincerely,
MG
__________________
If we learn by our mistakes, I am working on one hell of an education.
Hi everyone!
Im very new to this kind of stuff, so please bare with me. I am struggling and finding it very hard to deal with my symptoms, so this is my last cry out for help. I was diagnosed with Graves disease last May, and underwent the RAI treatment February 8th. I was not a candidate for Thyroidectomy due to serious symptoms with my heart I was experiencing. I have been feeling so horrible ever since I took the RAI and was just wondering how much longer I have to live like this. I developed chronic hives 3 months ago that come every single day. I also developed an eye disorder that is very painful and hard to endure. I am feeling completely helpless and miserable. Any information would be greatly appreciated!
Heavenly84,
I'm fairly new to this myself, but I wondered if "chronic hives" is normal with this?
Hi MG! Thankyou for your response again. I am on the lower side of "normal range" and that is where my Dr. said his goal was to get me at. I am still going to be tested every four weeks to make sure I don't have any other complications or troubles with my levels.
I'm not sure if "chronic hives" are normal with this, and I am in the process of trying to figure them out. I will be sure to put it on here as soon as I figure something out.
While my T4 levels were low I had chronic skin issues:
Hives
Rashes
The worst was on my face and around my eyes. I went to two dermatologists. Both told me my thyroid levels were too low. When I made it to 50% the hives and skin issues went away.
I truly think you are under medicated.
MG
__________________
If we learn by our mistakes, I am working on one hell of an education.
While my T4 levels were low I had chronic skin issues:
Hives
Rashes
The worst was on my face and around my eyes. I went to two dermatologists. Both told me my thyroid levels were too low. When I made it to 50% the hives and skin issues went away.
I truly think you are under medicated.
MG
Weird thing is I have hives right now and my levels are pretty high lol. The thyroid is a very tricky problem to deal with. I'm new to this but I'm already going hmmm so I was supposed to loose weight not retain it ummm nope my thyroid missed that memo!!
I'm not sure if "chronic hives" are normal with this, and I am in the process of trying to figure them out. I will be sure to put it on here as soon as I figure something out.
Heavenly84:
If you find out could you post it because that sounds vaguely familiar.
If you research giant uticaria in conjunction with Hashimoto's and hypothyroidism you find that it is an uncommon common problem. In other words some hypoT patients more commonly Hashi's hypoT patients develop giant hives in conjunction with dermitologicsl swelling. Treatment of such with high doses of antihistamines and steroids do not resolve the problem like in normal allergic hives. The only solution found is an increase in thyroid hormone supplementation. In most cases the hives disappear with in 1-2 monthes on the proper thyroid hormone dosage. True cause is unknown but it is linked most commonly to autoimmune hashimoto's symptomology.
NOW Graves and hives this is more common look into chronic idiopathic uticaria. This is a very common issue thAt resolves itself fairly quickly with a reduction in thyroid hormone. In GD you produce 10-100x the thyroid hormone you need. Your body tries to dispose of the excess as quickly and efficiently as possible with out killing you. There are Many thyroid hormones from T7-T1. T3-1 are the short lived hormones. T2-1 are the shortest lived and specialize in dermotological cell metabolism. Bet you are getting the picture your excess hormone is bring used to elevate your BP, temp, make your skin oily, sweat, and more. It does it's best to stress your surface area thus minimize the effects on your internal organs. Unfortunately the higher your levels the more the internal bits and pieces are stressed as well. You are now on tapazole you should feel a difference soon. With in a month many of the hyperT symptoms will melt away. It takes ten days to peak in your blood and body. Then it will take another 10-14 days for your symptoms to adjust. Thus you get more blood work evaluate your T4&3 levels and then adjust your dosage up or down accordingly.
Okay. Did that help? Or did it confuse?
MG
__________________
If we learn by our mistakes, I am working on one hell of an education.
The Following User Says Thank You to mkgbrook For This Useful Post: Gemsrite (09-03-2011)
Wow MG! As usual you have been very helpful and informative. I've taken in as much research on GD as possible and I've found nothing like that. I need somewhere to research that tells me all those things. I was just saying to a friend last night that I wondered how long the hormones my body has already produced will last. Do you have ESP? Lol
No ESP. But having lived through this before and begging for treatment, I know as soon as I started my meds I was waiting for a quick fix. As to research, I have access to more databases than mist due to my job and educational back ground. In addition I have family members in the medical field that take an interest in the ins and outs of thyroid disease.
One thing every one wants too know is HOW LONG TIL I FEEL NORMAL AGAIN. My chemist side has access to all the drug info and metabolic rate junk. I just pass it on like I did for my aunts and cousin. That was the reason behind my thyroid care and concern series. Pass on core info so I could stop repeating myself in posts. I am glad I could help.
MG
__________________
If we learn by our mistakes, I am working on one hell of an education.
You wrote there are options before having RAI treatment, I thought you could only stay on meds for hyper a short period of time. My Doc. told me they do not do the surgery to remove the gland anymore is this true?
I was dignosed in April after ending up in the hospital from symptoms related to heart issues after tests upon tests and a heart cath and so on, It was Graves. I've been on tapazole for 3 mths and he wants me to do the RAI uptake.
The following user gives a hug of support to Karenakm: Gemsrite (09-02-2012)
You do have options!! And please take it from me as I was in your situation, never ever stay with a doctor that tells you you don't have options or pushes you toward an option. You can stay on tapazole as long as needed and even receive remission, you can do RAI, or have part or all of the gland removed (and yes they absolutely still do that). I can't say that I feel any better now that I'm hypo than I did when I was hyper it just sucks in general but what makes it better is to have a doctor that actually listens to you!! I went through 3 before finding my current dr who is just a GP but he listens and he's letting me try the Armour thyroid and no one else would. Shoot my first dr refused to refer me to an endocrinologist. Not to scare you but, when I had my RAI I ended up hospitalized for a week with every joint in my body swollen including all down my backbone, a heart murmur, high blood sugar, all my inflammatory markers were sky high and morphine wasn't helping the pain. I couldn't walk, feed myself, or tend to myself in the restroom. They tested me for everything under the sun lupus, rheumatoid arthritis, etc and refused to believe it had anything to do with RAI because they'd never seem or heard of it happening before. I saw 6 dr's while I was there and I got released with no answers. I believe it was the RAI and from what I hear my dose was relatively low. I've also had to have a hysterectomy since my RAI. Again, I'm not trying to scare you but don't let anyone decide what's best for you but you!! Do your own research, get informed, and make an informed decision for yourself. If your dr won't go for it, find a new dr!! It's your body, you know what's right for your body and you know if something is wrong! I hope I've helped you at least some
I decided to cancel my appt. for the RAI, after reading so many posts about the side effects I would rather deal with being Hyper for now. I stopped taking my tapazole last Tue to prepare for the RAI I noticed my neck and low jaw has become so sore it felt so swollen although it didn't look it!! Since deciding not to go through the treatment untill I get a second option I started taking my Tapazole and odd enough the neck pain is slowly diminishing which makes me wonder what will the pain be like after RAI and no Meds. I also read some go on beta blockers for the Hyper racing heart after RAI ... My doc never said anything about it, just see ya in 6 wks.... The racing heart is the reason I ended up in the ER when this all began.
Yes beta blockers usually come with the tapazole to help control the heart rate. I hope you get remission really soon and if you don't that at the very least you feel much better very soon! I'm glad you didn't let your dr push you into anything. The thing is if tapazole doesn't ultimately work for you at least you gave it an honest try. When you do RAI like me or surgery that's it your thyroid is dunzo and there's no turning back and trying tapazole or getting remission. Those options are a one way street to hypo and synthroid (with most dr's some will write armour but most all start hypo's on synthroid). Way to go for you exercising your rights!!
Graves Disease post RAI 
