[ewmb]

in reply to: Hyperthyroid due to Grave’s Disease or not? #1069113

I don’t know a lot about the TED. I think the bulging is a part of that. Others can answer that definitely. The antibody test is a blood test. I never showed any antibodies for either graves or hasimotos. My dad has graves my mom hashimotos. My endo says that it’s not unusual to have no antibodies show up as the test isn’t as sensitive as it should be. I think the RAI isn’t good for eyes. I asked my husband about the predisone before RAI for those with eye problems. He is a pharmacologist and works with radioactivity. He said that the predisone would have no effect on protecting the eyes from radioactivity but there might be a reason he doesn’t know for other protections.

Your parathyroid glands are not affected by the RAI as far as I know. You can look on webmd and find articles about the parathyroid glands.

There are others here who have had the surgery who would be able to tell you about the risks there.
Keep on asking questions, education helps you feel more in control.

ewmb

[ewmb]

in reply to: Newly diagnosed & have questions please #1069150

I only noticed that I had more hair on my pillow in the morning. It wasn’t big enough to notice but everyone is different.

ewmb

[ewmb]

in reply to: will the tremors EVER go away for good? #1069070

Emily,
I don’t know why the tremors are hanging on. They are in me too and I’m three months out from RAI. When I get stressed they seem to come back. I wish I could get them to go away too.

ewmb

[ewmb]

in reply to: 2 weeks post RAI my update #1069182

Lacie,
The itching is tolerable. I haven’t tried zyrtec. I have been taking otc generic claritin. I hope it has helped. It seems that the rash is spreading a little but I don’t think it’s taking over. My heart rate did go back down. The skies poured this afternoon with lots of thunder and lightning and I was able to sleep. It was cathartic that the earth cried and renewed itself after my bad morning. I have started using my little stationary pedals a little more. I wish I could do what you are doing. I used to walk a lot and do other things like yoga, aerobics etc.. It will take time.

Keep feeling better.

ewmb

[ewmb]

in reply to: allergies to thyroid hormones #1069309

I sent you a private message with the contact information for the Drug Information Centers in NY state.

ewmb

[ewmb]

in reply to: Hey GD family – I’m feeling better :) #1069089

Great news! I hope to join you in a few months and be celebrating my success with ending the bad symptoms. Hard days are still ahead though for me. Had my office taken out from under me today at work. Has to go to someone else who probably makes more money than I do I guess I had an adrenaline rush with the upsetting news and had to come home. HR up and BP and tremors came on really fast. I was hoping that that was gone since I have been having lower HR numbers in the past few days. Maybe it’s all part of the plan…… I will keep up hope hearing your good news.

Keep smiling at your small neck. It’s a great reminder of your success.

ewmb

[ewmb]

in reply to: recently diagnosed with graves #1069119

Hi again,
I am happy so far with choosing RAI. I am not hypo yet but hope I am headed that way. I actually had my tsh go down to almost nothing about 10 weeks out of RAI. My endo said he has seen this before and that I should eventually go the other way. I actually wanted RAI upfront but was talked into medication. My dad has Graves and had RAI with no complications so that’s what I wanted. I was actually a lot sicker than my dad. My mom has Hasimotos so I knew that starting replacement hormone is not that big a deal in the long run. My main problem with the meds is even when I was in "normal" range I felt bad. I went hypo on the meds too and that wasn’t very fun. The past two and half years haven’t been good. I think it was obvious a few months into the meds that they weren’t for me but I had made a commitment to them. I stopped them about a year after starting them and was hoping for remission since my levels were pretty good then. It took nine more months to go hyper again. I had to go through a really rough time waiting for my levels to be hyper enough for the nuclear medicine doctors to feel comfortable treating me with RAI. I wish I had held my ground when I was first sick.

ewmb

[ewmb]

in reply to: Generic Ingredient that might cause allergy #1069192

Hyperm,
Don’t know what aqua cream is. I’m guessing it’s a UK thing. Do you know what the ingredients are?

ewmb

[ewmb]

in reply to: allergies to thyroid hormones #1069307

I’d say try the other local endo. He may have experience that you need. I went to see another endo in the middle of my bad times. I didn’t even tell the other endo that I was going. The other one was in another town at a different hospital. Turned out that he didn’t understand my issues either. Do you have to have a referral to see a specialist? If so that may be an issue. I would still say that you are asking for a second opinion if necessary for the insurance to be happy. Then if you want to change permanently you will have permission if needed.

Have you been able to get in touch with a drug information center? They really do have access to things that doctors don’t and they can contact drug companies quickly for answers. The can do a literature search for you and have access to databases etc. Pharmacists are the professionals who understand drugs the most. Doctor’s really aren’t given enough training in school to be able to help you with a problem like this on their own. I will ask the DI Center here about what’s available in NY.

ewmb

[ewmb]

in reply to: Hyperthyroid due to Grave’s Disease or not? #1069108

Hi,
Sounds like you may have thyroid eye disease, TED. There are lots of people on this board who have that and can tell you about that. If you’ve had an uptake test then your endocrinologist may be talking about having the antibody test for Graves. Your uptake can be a diagnostic tool for Graves. Did you have a scan as well? That would show a picture of the thyroid and the fill in pattern can be another diagnostic indicator for Graves. Having radioactive iodine can make your TED worse so that may not be your best option for treatment. You can take antithryoid medications or surgery is another option. There are other things that can cause hyperthyroidism so I wanted to know if mine was Graves or something else. Good luck with your medication. It works for a lot of people. I was in remission for about a year and then it all came back. I chose RAI as I didn’t have any eye involvement and had it about three months ago.

ewmb

[ewmb]

in reply to: recently diagnosed with graves #1069115

Hi,
Welcome to this board. There are many people here who have used antithryoids for a long time to keep things under control. I tried that and was in a sort of remission for about a year when it all came back. I had RAI about three months ago. There are many good posts here about the three choices for treatment. Look for other posts about I’m new, just diagnosed etc.. The facilitators can answer lots of questions from their experience. Glad that you found the board.

ewmb

[ewmb]

in reply to: Radioactive Iodine prep #1069124

I’ve never heard any thing about taking predisone before RAI. I don’t think that’s standard. I had RAI 3 months ago. I would have had to stop taking the antithryoid meds if I had been on them. I was off for a year before the RAI. I’d get information from your endocrinologist. A lot of GPs don’t really deal with hyperthyroidism too much and don’t really know what’s what’s sometimes.

ewmb

[ewmb]

in reply to: Generic Ingredient that might cause allergy #1069190

Michelle,
I haven’t got hives. I have little red bumps that really do itch. In some places it looks like scaly patches too. It feels rough. It has spread to my arms but I don’t think my legs are getting any worse. I don’t like benadryl so haven’t tried that.I have been taking OTC claritin for a long time so I’d have to stop that. Did you try any topical creams or anything that helped?

ewmb

[ewmb]

in reply to: 2 weeks post RAI my update #1069180

Lacie,
I am off all thryoid meds right now. The doctor’s response through his nurse was that’s fine the RAI should be working over the next three months! Call us if you need us, we’re here to help. I appreciate the help idea but right now I’d like the itching to stop. The rash has spread to my arms and is itchy itchy itchy.

ewmb

[ewmb]

in reply to: Generic Ingredient that might cause allergy #1069188

The generics do have the same ACTIVE ingredient in them (that’s required by law in USA) but it’s the fillers, colors, binders etc. the INACTIVE things that change from company to company.

ewmb

[Author]

Posts