[smj78]

#1018155

Hi-I am new here and newly diagnosed with Graves. I am so confused and do not know where to get answers. My symptoms are puffy eyelids, shaky hands, and feeling hot all the time. I am on metepropolol for heart and methimazole 20mg. Recently I began itching, but I do not have hives or rash. I am fearful that I am allergic. Could it be something else? I really want to stay on meds to get this straightened. I am 32 and had my 2nd baby almosy exactly a year ago. I believe the birth triggered my Graves.

Here are my questions: Do people really ever go into remission? One doc said ti is unlikely. I really want another baby. I want to get healthy first, but was hoping this to happen as soon as possible. I do not want to put myself or baby at risk. What do you think is the best treatment if I want to get pregnant? Will it be hard to get pregnant? it look me half a year with my other two as it is. One doc said RAI, but then I read that I would be hypoT. Isn’t it even harder then?

Thank you for any advice!

[Bobbi]

#1062975

The itchiness could be a reaction to the meds. I have had that type of reaction to certain types of meds and it is consistent (in other words, if I happen to be prescribed a similar med later on, the itchiness returns immediately). There could be other reasons for the itchiness, as well. The best thing to do is talk with the doctor.

Remission. Remission is defined as a "temporary" (emphasis on that word) cessation of symptoms. It doesn’t mean "cure." It doesn’t mean the disease has gone away for ever. It does sometimes mean years without the disease returning; but for those of us with Graves a remission is defined as being able to be off the meds for a year or more without the problems returning. That is important for you to keep in mind as you are deciding how to go about treating your Graves. Approximately 20-30% of Graves patients experience a true remission. For those folks who have had one remission, however, the odds of a second remission become significantly less — about 10% was the figure I used to see when reading about this issue. So, what that means is that for every 100 people who get Graves, 20-30 might experience a remission. Of those 20-30 people, 2 or 3 would experience more than one remission.

As for getting pregnant again, once you have regained your health, you would be considered a higher risk pregnancy specifically because thyroid levels normally fluctuate during a pregnancy and ours have to be adjusted "manually," they don’t fluctuate properly without the intervention of meds. Having the proper, normal levels of thyroid hormone in our bodies during pregnancy is important in many ways, so it means we have to have more frequent blood tests than another patient might have. But women DO go on to have safe pregnancies and healthy babies after/while being treated for Graves.

You asked about "being" hypo after RAI. If you were not on any medication after RAI, you might indeed have too low a level of thyroid hormone and "BE" hypothyroid. But replacement hormone is thyroid hormone. It is chemically identical to our own, naturally occurring thyroxin. So, if you are on an adequate dose of replacement hormone, you would not be hypothyroid. You would have normal levels of hormone, in other words, and be "euthroid" like the normal population.

As to which route anyone else would choose — RAI, surgery, staying on the meds — that is truly up to you and your doctors to decide. Some women choose to stay on the meds during a future pregnancy. Some don’t think that is the safest choice for themselves and choose surgery or RAI to remove the thyroid, and then go on replacement hormone. You just need to thoroughly understand the pros and cons — the realistic pros and cons — of the treatment choice, and make up your own mind which one you would feel best about.

[smj78]

#1062976

Thank you for the input! I was against RAI, just out of fear mostly. It sounds like maybe my best option if I want another baby. I don’t know if I can handle the risks of being on the hyperT meds while pregnant.

Should I fear the effects of being HypoT after RAI?

[Bobbi]

#1062977

Should you fear being hypo after RAI/Surgery? No. You won’t "be" hypo — at least, not typically, or not for any length of time. Our doctors monitor us, and when we go into hypo territory, they prescribe replacement hormone, which, again, is chemically identical to our body’s own T4. Personally, I feel much better at the hypo end of normal, and I’ve even been technically hypo and not noticed any problems whatsoever. Other people drag if they are even close to the hypo end of normal. So, you just need to work with your doctor to find the spot within the normal range where you feel the best, if you are on any of the meds (whether the antithyroid meds or replacement hormone).

[lhc11]

#1062978

Hi smj,

I am sorry you’ve had reason to join this board, though you will find it a very helpful resource. I was diagnosed with Graves about six months after my first pregnancy in 2009 (which unfortunately ended in miscarriage); it is quite possible that that pregnancy triggered my Graves, as you think yours might have. One of my primary concerns about treatment options was exactly yours — wanting to get pregnant as soon as I was healthy again. I did a lot of searching of the word "pregnancy" in the search box of this website, which you may want to do as well; I learned a lot that way. One thing you should know that Bobbi didn’t mention is that doctors recommend 6 months of not conceiving after RAI because of any potential effects of the radiation upon the ovaries (they used to say 12 months, then 9, now it’s 6). I am older than you (now 39), and this delay factor played a large role in my decision to have surgery rather than RAI, because I was able to start trying again (this time, because of my age, with the help of a reproductive endocrinologist) a month after my surgery when my thyroid levels stabilized (I should emphasize that I would have waited until they stabilized no matter what, and I was lucky that they did so so quickly and that I got the go-ahead from my doctor at that point; it could have been a bit longer). I haven’t been successful conceiving yet and am probably moving to IVF shortly, but my lack of a thyroid is not a concern to my doctors other than the general need to keep a watch on my levels and make sure I stay euthyroid on the replacement hormone and don’t slip into hypo range (I only just had surgery in June) — but that’s a concern for anyone who has RAI or surgery, not just for those trying to get pregnant. For the record, while the "normal" range for TSH (thyroid stimulating hormone, produced by the pituitary gland) is anywhere from .5-4.5, for conception my doctors recommend as a ideal a range of 1-2.5. This is the number that will be very low (in my case, like below .003) if you are hypERthyroid, and will be brought up first with anti-thyroid drugs and then with either RAI or surgery. Some people on this board have chosen to stay on PTU (the other anti-thyroid drug) and get pregnant, and my doctor said he’d seen people do that, but ultimately it wasn’t something I was comfortable with, and it sounds like you probably aren’t either.

If you do a search for my username — lhc11 — in the search box, you will be able to read through my whole odyssey, my struggle with and anxieties about the decision, and ultimately my satisfaction with my choice of surgery (which, as I have noted to others, is really only a choice if you have access to an excellent endocrine surgeon who does a lot of thyroidectomies — as I did).

Hang in there and all best to you,
lhc11

[lhc11]

#1062979

One other thing I should have added to my note above is about your puffy eyelids. Before you make your decision about treatment, you may want to confer with an ophthalmologist who knows about/deals with patients with TED (thyroid eye disease, once called GED). It sounds like you might have some of that going on (as my new ophtamologist said, almost everyone with Graves has some eye involvement even if it’s not visible to anyone other than a doctor). The reason I mention this is that there is some small amount of evidence — Bobbi or one of the other facilitators on this board can speak more authoritatively about this than I can — that RAI can worsen already present eye issues while surgery does not (at least, not right away — there are people on this board who have had surgery with no problems and develop the eye issues much later in life). I am so sorry to have to add this to your list of things to think about — Graves gives you a lot to learn about all at once right when you are not in much condition to think about it well — but you want to get an opthalmologist familiar with the disorder in any case even if you don’t have eye involvement.

best,
lhc11

[LaurelM]

#1062980

Hi,

I also had Graves following my first pregnancy and went on to have a healthy second baby. I was still on ATDs when we conceived. The pregnancy or the ATDs put me into remission in my 1st month of pregnancy. I was sure it was going to come back post-partum but I am still in remission.

You can search for more of my posts/responses using my user name. I’ve written some lengthy responses about my experience. If you have more questions about my expirence that I didn’t cover in those other posts, I’d be more than happy to answer them!

It will all work out – eventually.

Laurel

[snelsen]

#1062981

So glad you are hearing from lch11 and Laurel. It helps so much to hear from people who have been exactly where you "are."
REgarding eye involvement, lch11’s second post addressed pretty much what I was going to say. There is some evidence of RAI exacerbating already present eye symptoms. That relationships does exist. It does not with surgery. So it is very good idea for you to go to an eye doc who KNOWS GRAVES’ (many really don’t have much interest in it.) Just another factor to throw in your decision making bucket! Generally, TED is diagnosed by an exam, symptoms, and an orbital CT for confirmation, and degree of involvement.

Regarding the chance of being hypo after treatment with either RAI or thyroidectomy. It IS possible. At first, you can feel hyper if there is much remaining thyroid circulating around. It will go away. But in the meantime, a doc COULD treat you with ATD’s for a short time until you thyroid hormone is used up. This would be uncommon, but if you were super hyper, it needs to be treated. This balancing act could make you hypo for a short time before replacement was started. OR, after treatment and before starting Synthroid, a replacement hormone (or a generic) BECAUSE you don’t have much or any hormone circulation, and ALSO have not begun replacement, you could feel a little hypo. I am only mentioning this because you asked the question. After my surgery, I felt fine, neither hypo or hyper. I got Graves’ after a baby, had the surgery when he was @4 months old, then got pregnant within 8 months or so with my second. But that was in the days when they left a tiny bit of thyroid gland to produce a little bit of thyroid hormone, so I was euthyroid after the surgery, with neither too much or too little. They generally do not do that now. Today, the intent is to knock out all thyroid production and use the replacement hormone to get us to the euthyroid state. Everyone ends up on thyroid replacement, including myself. It is necessary for good health and life. Fortunately, the replacement is cheap, safe, and the same as our own natural thyroid hormone.

Best wishes with all of this, you WILL get through it.

[Bobbi]

#1062982

As to RAI aggravating the eye disease — the jury appears to still be out. We "think" that RAI causes at least a "temporary" (and I never saw that defined) increase in symptoms of the eye disease, in 16% of patients. That was shown in a study published in the New England Journal of Medicine about ten years ago or so. The authors of that study thought they saw an increase in antibody action after RAI. Obviously, anything that stimulates the immune system, stimulates the antibodies that aggravate our autoimmune disease. That same study showed that in the test population there was no increase in eye disease symptoms with surgery, nor was there any increase in eye disease symptoms if the patient also was on a course of treatment with prednisone at the time of the RAI. I have since heard that questions have been raised about the findings of that study, but I know of nothing that replaces it. But, if someone presents definitive symptoms of the eye disease, they typically are given prednisone, or something similar, if they take RAI. But the eye disease occurs in people who have never had RAI, in people who were treated surgically, and in people who are on the meds, and in people who have yet to see wonky thyroid levels. Why it occurs, what aggravates it is still a mystery.

Puffiness around the eyes is not however one of those distinct eye disease symptoms that necessarily triggers the prednisone treatment. Soft tissue swelling is associated with eye disease symptoms, but can also be caused by other things as well. The only way to know if that is what is going on with you is to check with your doctor. The tissue around the eyes is extremely sensitive to all manner of issues — allergies, pollutants, etc., not just the enlargement of the eye muscles.

[cornelius]

#1062983

Hello! I thought I would share my story of my thyroid struggles and pregnancies with you.
I was diagnosed with hypERthyroidism when I was about 6 weeks pregnant with my 2nd child (most likely brought on by my first pregnancy). I was prescribed PTU while pregnant, which was scary, since it is a Class D medication during pregnancy. Obviously, I couldn’t have the RAI or surgery while pregnant, so I had to weigh the pros and cons of taking the medicine while pregnant or not. I had to choose to take it, since I already had a child at home and coudn’t risk my own health/life by not taking the meds. During my 2nd pregnancy, I was classified as "High Risk," had endo appts and ultrasounds monthly to assure that the baby was growing appropriately. I lost count after 15 ultrasounds! She was born very healthy, however, and is 6-1/2 years old today without any delays of any sort.
I chose to have the RAI done about 2 years after she was born (May 2006). In Oct 2006 I became severly hyPO and was placed on synthroid (levothyroxine), which I have been on ever since. In January 2007 I became pregnant with my 3rd child, whom was born super healthy (and huge–10.3 lbs). During this pregnancy, my thyroid levels remained in the "normal" levels. Shortly after having him, my meds had to be adjusted accordingly. I had a 4th baby Sept 09 and she, too, was very healthy.
I would definitely discuss ALL of your concerns with your dr…and even get a second opinion. Some endo’s will say one thing and others will tell you a differnt version (from my experience). But, yes, the sythroid is a natural replacement and is not at all a risk to your unborn child. However, the PTU and Methimazole is…so be sure you are aware of these things when you make your decisions!!

[pinky35]

#1062984

Hi–I believe my Grave’s onset was post-baby also, although I wasn’t dx until this past August. I had had 2 miscarriages, and was found to be hyperthyroid, and then dx with Grave’s. After MUCH discussion with both my endo and my reproductive endo, I decided on RAI. It wasn’t an easy decision (esp. knowing I would have to wait 6 months after RAI to try to conceive again and being 35). I felt like the benefits of having it done, rather then being on antithyroid meds during pregnancy, was the best option for ME. The endo’s both felt like having throid replacement during pregnancy, and even being slightly hypo, was much lower risk to mom and baby. I am only 3 months out from treatment, so I can’t speak to actually being pregnant yet- but I am told it will just be a matter of getting the replacement dose situated, and then we can try (after the 6 months that is). I will be followed with (likely) monthly blood draws and seeing the endo throughout pregnancy, as it is common for your body to require more replacement when pregnant- esp. the first trimester when the baby has no thyroid.
3 months out and my body JUST went "hypo", meaning I began having symptoms and then blood draw 2 days ago show all my levels in the hypo range. I was actually very glad to see that, as I can get started on replacement and get to a healthy place finally.
I feel TONS better then I did prior to treatment–like, a different person better. Actually, I didn’t realize how horrible I felt until I felt "normal" again.
Good luck to you!

[smj78]

#1062985

Thank you all so much for your thoughts and expereinces. It is SO helpful to speak with people who have gone through it. I have an appointment with my endo tomorrow and also a second opinion endo later tomorrow as well. This will be a very hard decision. While I really don’t like the thought of surgery, I am very fearful of possible effects of RAI given that my eyes are already bothering me. I feel so much more hopeful now though than I have in a while. Thank you again. Any other ideas are appreciated!

[lhc11]

#1062986

Hi smj78,

Glad these comments have helped you a little. Trust me, I did not like the thought of surgery either; in fact, I felt like I was caught between three unfair and terrible choices (continued ATDs, RAI, surgery). For what it is worth, it helped me to think of my ultimate decision to have surgery as a "parenting" decision; I think I wrote about that in one of my postings to this board back in May. And I can tell you that even though I had moments after I made my choice of thinking I was completely crazy to have chosen surgery when a non-surgical option was available to me, I have absolutely NO regrets about the choice I made. One thing to ask your endo tomorrow is for a referral for a surgical consult. That way, you can go talk to whomever would be doing your surgery should you choose to go that way and ask some more specific questions (somewhere on this board is a list of things to ask a surgeon about, or the folks here can re-constitute it for you). I found that very helpful in making my decision (even though the surgeon freely admitted that since he’s a surgeon, he likes to recommend surgery!). Let me emphasize again that surgery should really only be an option if you have access to someone who specializes in thyroid surgery and does 50 or more thyroid-specific surgeries a year (I think that is the general number); generally, that’s an endocrine surgeon, not an ear/nose/throat specialist.

If you are looking for my posts, make sure you search for lhc11 (not, as some easily confuse it, lch11).

Hope tomorrow’s appointment goes well.

lhc11

[smj78]

#1062987

OK- I just saw 2 endocronologists today and discussed RAI and surgery. They both seem to be more in favor of RAI. I had bloodwork, so hopefully I will get those results tomorrow. I will see an optomologist next week as well.

I keep flipping from RAI to surgery and back. While surgery seems to be the best in the end for me, I really don’t want to go under anethesia. Why do so many people regret having RAI? Are those just the people who seek out the boards for advice and support?

I have to try and take it day by day. At least once a decision is made I can just look forward and try to get stabalized.

[Ski]

#1062988

I think you may have it right ~ the people you see who regret having RAI are just more prevalent on the online boards. We had a fabulous presentation at a conference last year (2009, I mean) where the doctor outlined certain factors that may point a patient toward one treatment or another. Bottom line, treated is treated, and whatever you feel more comfortable with is what you should do.

I had RAI, it was (finally) successful (should have made sure my initial dose was high enough for full ablation), and I am now healthy and happy. ” title=”Very Happy” /> There are MANY others like me, I know it’s true.

[Author]

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