[Russelline]

#1018005

Hi, I’m new here and can’t believe I never found this site before. I have so many questions but I’ll start with a couple. ” title=”Smile” />

First, in the FAQ is says: "In Graves’ disease, the immune system makes antibodies called thyroid-stimulating immunoglobulin (TSI) that attach to thyroid cells. " I have had the RAI. Does this mean that my immune system no longer makes the TSI – thus, no longer have Graves?

Secondly, has anyone tried the Low Dose Naltrexone?

Thanks!

[Bobbi]

#1062154

No, your immune system still makes the antibody that caused the problem. But if you have had RAI to remove your thyroid, and it successfully eliminated the hyperthyroid issues, this antibody can no longer make you ill. Think of it like this: the TSI antibody is a key, and it ONLY works on a specific lock called "thyroid cell." You have thrown away the lock. The key still hangs around, but it has no effect on the rest of your body. That is a bit of a simplification, perhaps, but essentially true. We don’t quite know whether or not the TSI is the culprit with the eye disease, or the skin problems (TED and pretibial myxedema). It may cause problems there, but most of us do not experience those problems, so there may be some other antibodies involved there.

[Russelline]

#1062155

(TED and pretibial myxedema)… have not heard of either of these. Do either cause an intense itch? I ask because I get this horrible itching in my arms that sometimes requires me to ice them to get any relief. It never happened until the Graves (both pre and post RAI). All of the many doctors I have seen, tell me I’m crazy as there is no way the itch is related to my thyroid issues. I’m not convinced.

[Ski]

#1062156

TED is Thyroid Eye Disease, and pretibial myxedema affects only the skin on our shins, and sometimes the feet. If the itching you are experiencing comes from extremely dry skin, then that could be related to hyperthyroidism, but that’s a pretty big stretch, especially in the way you describe it. It’d be pretty constant if it were related to your thyroid hormone levels.

[PattiMeg]

#1062157

Hi there – I was diagnosed with GD in early Jan 2011 and had RAI on 2/25…the symptoms that got me to the doctor were an awful itch that was a total body itch and was unbearable. Yes, I was having heart palpitations, insomnia, anxiety, muscle weakness but the itching was the worst. Anyway, when the labs came back and my thyroid levels were off, the doc kept saying "your itching as nothing to do with the thyroid". The endo says the same thing…NOT TRUE!! I am 7 weeks out from RAI and my HR is starting to normalize, my anxiety is much better, i am feeling like I have a little more energy, and best of all the itching is almost gone!! So I definitely think there is a correlation with the itching and Graves…just wanted to chime in ….Good luck to you!!

[Ski]

#1062158

If you are actively hyperthyroid, then yes, that can cause dry skin and resulting itch. If you have begun treatment and your levels are normalizing, it’s rare to have the same issue occurring, and even rarer to have it intermittently.

[Russelline]

#1062159

Hi, Thanks for all of the responses. the explination on the TSI makes perfect sense to me. As for the itch, I can’t pinpoint it to a certain TSH level. I’ve experienced the itch both when it is high or low. I can say that it occurs when my TSH levels are "off" in either direction.

I took the RAI in Jan 2008. Apparently my thyroid is still dying as I have been on 125 Synthroid for about 6 months and my recent blood work showed that I am definitely in the hypo range again. Is it normal for it to take over 3 years to level out?

I know that the one thing that I’ve read here that really makes sense is that Graves’ effects every cell in the body. I have struggled with every imaginable symptom since day one. I think my biggest struggle has been to get a Doc to listen. I’ve seen a total of 6 different doctors for my Graves. Not one of them wants to look any further then TSH. I haven’t been able to get a single one of them to test the other markers (T3 T4 etc.). They are insulted by my questions and most have become downright beligerant when I ask. So, I start with a new doc soon. My appt is in 2 weeks. In the meantime, this site is great! ” title=”Smile” />

[ZachB]

#1062160

I’m also new to this site, i found it while debating to take my 2nd dose of RAI in the car outside the radiology building. I saw some of the possible side effects of long term Hyper (the bone and muscle loss) and this helped me decide to do it. I also saw some Auto Immune disorder connections and I recently got diagnosed with Sarcoidosis which i felt was somehow connected as I was slacking off of getting my labs and probably needed 10mg of methimozole instead of 5. I still almost bolted without taking the RAI because I always saw it as over kill and I was going to arm wrestle my Dr to give me a partial again…but they’re the Dr’s and they seem to all be in agreement that they mainly only do a full burn out.

Three years sounds terrible with being Hypo, I hope you get your levels set. For me I liked being Hyper, but now i’m 2 weeks Hypo and I can’t take it because i’m so light headed. To think this could last for a long time is scary.

Does anyone know if being really light-headed, foggy is a syptom of being Hypo?

Also has anyone had a delay with Synthroid starting to affect them? I thought it would be right away.

[susan]

#1062161

I am thrilled to have found this site. I had a RAI treatment three days ago. Feeling a little tired and my heart is not trying to escape out of my chest! I am on 160 mg of beta blockers. I took a blood test because of a flu feeling that never went away and never progressed. My doctor called a day later and asked if I was on supplements- she had never seen anyone with a T4 level. The endo confirmed GD and here I am. I am fortunate not to have many of the profound symptoms. In reading the posts I am starting to realize how complex GD is and I will take it as a sign to take better care of myself. Thank you for all the info and for finding a place among kindred beings…….Susan

[Ski]

#1062162

ZachB: Feeling foggy can be a symptom of hypo, but where you stand with treatment, it’s really hard to say, by symptom alone, what might be going on. Blood tests simply must be run before you can evaluate ~ things can be VERRRY strange for a while after RAI, and some of the effect is our body readjusting to "real" normal, rather than what we saw as "normal" while hyper. I thought I liked hyper too (everything was getting done for once!), but once I stabilized at normal thyroid hormone levels, I could see in hindsight how very sick I’d been. Even slight imbalance can make you feel awful over time…

Susan: So glad you found us! I’m also glad you’re finding some relief right away, that helps ~ keep in mind that it can be time-consuming to get back to normal and stable, but please continue to celebrate each improvement, no matter how small!

[Russelline]

#1062163

Zach,
I can’t say I’ve ever felt light headed but Brain fog is definitely a symptom I get when I’m hypo. Basically it is a feeling of being so darn tired I can’t focus. I haven’t been hypo the entire three years. My thyroid is dying off slowly and my symptoms cycle with it. After RAI my doc started me on synthroid. That made me hyper at first but with time (as my thyroid died off) I would go through a phase of normal and then finally I’d go hypo. So the doc would up my synthroid, I’d be hyper at first, go through a phase of normal ….. you get the point.

Basically for me, it has been a long haul with periods of feeling good and periods of feeling real crappy. My problem is that even when I’m in period where my TSH levels are in the "normal range", I still suffer from muscle cramps and digestion issues. Basically, my new "normal" has never felt normal to me.

As for the synthroid delay, it usually takes me about a week to feel a difference from it. My doctors (and I’ve had many) have always insisted that is doesn’t work that fast. They insist that it takes 3 months to level out. For me, within 3 months I would have gone from hyper symptoms to to hypo again. sigh.

Susan, you are very blessed to have minimal symptoms. I’m glad you posted on this thread. It is comforting to know there are others out doing fine.

[lammie]

#1062164

hello! i was relieved to see from the post above that you could feel a difference after a week of taking synthroid because i had RAI in Jan and went hypo about 2/3 months later and then took thyroxine for a month but i was still overactive. So now I’m on a lower dosage since friday and I’m just hoping that i feel a difference within 2 weeks at least since the stupid anxiety came back! i was feeling so strong after 3months (before that was killer for me) and my anxiety was gone basically but i knew i was feeling a bit uneasy & edgy lately and so after seeing my results, it all made sense! so i do feel like i’m back to square one again dealing with the "dumping" stage which is the worst! They say it takes roughly 6months for the RAI to be fully effective so i know i am so close which is what is making me get through all this a tad easier because i am sooooo close. Just want these 2 weeks to go by quicker of course but we all know how long everything takes with GD. it’s all good i can do this! ” title=”Wink” />

[susan]

#1062165

Thanks, Russelline for the comment. Day 4 after RAI and the itching is driving me crazy. I take Benedryl at night and sleep well but the itching isfreaking me out. It was very embarrassing on an airplane. The woman next to me gave me dirty looks. My friend told me to switch to Allegra, so I wouldn’t be so drowsy. I am a teacher and since RAI is only 4 days ago, I have to stay 5ft away from my students. There is a pregnant teacher a few doors down from me- should I stay away from her for the rest of the school year?
I also wanted to know how long will I still be hypER? I read the posts about the weight gain and it has been years since I have much weight. I know it will come back but I am on Weight watchers and plan to start writning down every morsel so the gain is minimal. Today I felt like I was moving in slow motion and felt really warm- can’t tell the difference between this and menopause! Is that the hypO kicking in? Also I know GD effects vision- should I get my vision checked and my glasses changed?…I am sooooo glad I have this board to get answers and feel informed and calmed. Thank you!

[Kimberly]

#1062166

Hello – The American Thyroid Association just released new guidelines regarding radiation safety, and for the highest RAI dose in the table (30 mCi), it said to keep a distance of at least 6 feet from pregnant women for 5 days.

It can take anywhere from several weeks to several months for the effects of the RAI to fully kick in. Common symptoms of hypO include fatigue, joint pain, weight gain, slow pulse, hair/nail changes, intolerance to cold, and constipation. If you feel these symptoms coming on, it’s definitely worth getting a set of labs done.

As for the eye checkup, that is *always* a good idea, especially as we age. The most serious eye complications that occur with Graves’ are compression of the optic nerve and double vision. Dryness can also cause other complications, so it’s important to use preservative-free drops to keep the eyes lubricated.

[susan]

#1062167

Thanks so much Kimberly. I am still in a bit of denial as to the seriousness of this disease. That being said, it explains many past conditons and physical ailment:the change in my eyesight, the nastiness that creeps up on me(so unlike me)the flulike feeling. I was diagnosed with Thyroiditis many years ago after having many doctors comment on how "shotty" and swollen my neck looked. I was sent home with the suggestion of Tylenol for the times I felt exhausted and remember one doctor telling me nothing was wrong. I cried in the waiting room.
I really want to get back to the gym but my endo won’t let me till my numbers are better and I come off the propanolol.( I have my first set of post RAI labs at the end of the month.) I had to put my trainer on hold. I know the weight I lost was partially muscle so I need to know how to get it back. I seem impatient as we all can be but I so want that feeling of energy and health back.

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