[cmclark19]

#1017915

Hi!!

So back when I was 14 years old they found I had a large goiter. Then a year later they diagnosed me with Graves one o te youngest paients they had seen at the Children’s hospital. I had a total RAI removing all of my thyroid in 1994. Being so young I did not pay attention to anything they told me an my mother was too busy with her career to really have time to focus on it. So it was truly treated like it was done and over with no big deal. We treated very much like a broken leg that had a cast and was now fixed. I have taken the same amt of synthroid my entire life and yearly get my TSH T4 T3 tested. I have never had an issue I thought. I have always struggled with weight afterwards, miscarriages, depression, dry skin and truly thought it was just me. Until recently I have put a focused effort on my weight loss working out with a reduced calorie in take and I’m actually gaining weight!! Then I read an article about thyroid issues and started doing some research. Wow what an interesting disease! Wish I would have know half of these before. So this very long question short…. Once you have a RAI are you cured? Or could the issues I’m having have anything to do with Graves?? Also are there any effects from long term use if synthroid? I’m on 250mcg a day

Thanks so much

Christina

[Kimberly]

#1061616

Hello – I have occasionally heard doctors use the word “cured” in response to patients who have been through RAI or TT. However, Thyroid Eye Disease can still occur at any point…and in rare cases, thyroid tissue can grow back and eventually cause another cycle of hypERthyroidism. So personally, I don’t agree with using the word “cured”. In fact, there was a very “spirited” debate about this topic at our 2009 conference!

To my knowledge, there aren’t any long-term effects of Synthroid, as long as you remain on the correct dose for your body. There was a study done recently with individuals aged 70+. The researchers discovered that the body’s need for replacement hormone changes as we age. Many of the patients in the study were actually on *too high* of a dose, which put them at increased risk for bone fractures.

There was a study done in Europe recently that showed that women with Hashimoto’s Thyroiditis (another autoimmune thyroid condition) often have symptoms that affect quality of life *despite* having “normal” thyroid hormone levels. The reason for this is not understood, but it’s possible that antibody levels can have an impact on symptoms. So it’s certainly worth seeing if you can find another cause for your symptoms – that could potentially be treated and give you some relief. But it’s certainly possible that these symptoms could be Graves’-related.

[JennaV]

#1061617

You have quite a few hypothyroid symptoms, so I would suggest looking at those TSH, FT3, and FT4 labs that you have done yearly. There is a range for normal, and your doctor might be happy with your dose of Synthroid as long as it is within the normal range, but you might like it to be a different place within the normal range, especially if you are symptomatic of hypothyroid. For example, FT4 (remember that Synthroid is a synthetic T4, so this is a good indicator of your replacement dose) range for normal is usually (.8-1. or (.7-1.9) where I live (ranges can be different depending on the lab and the geographic region). However, I notice a HUGE difference between being .8 and being 1.8 (I have been both recently). You might be on the low end of the range, and plenty of people experience hypothyroid symptoms while being at the low end of the normal range. Just something to check out. Hope that helps!

[mamabear]

#1061618

Sorry to hear about all of this for you…
Have you seen a Reproductive Endocrinologist(RE) for your miscarriages? I think you’re about 31 and I would assume that since you tried for babies that you are also married. It is not easy on a man or woman when a woman has a miscarriage and adding that you don’t know where it is coming from hurts even more.

When I was Hyper I found out that my eggs were not a good quality for getting pregnant. Good quality in the sense of to be fertilized. I saw an RE and she tested me throughout different stages of my cycle and was able to help me get pregnant with my 2nd and 3rd children. (1st and 4th were without help)
I have never had a miscarriage but I think that you might be able to get some help through a GYN who deals with infertility or an RE who also does the same. Sometimes ins. companies wont allow you to see an RE so you might have to go to a GYN who specializes with it. It’s the same kind of dr. it just depends what their specialty is and what degrees they have. My RE was also a general Gyn as well.

You should get your lab work and look at the ranges because your levels might be within range but might not be good for getting pregnant. An RE or Gyn will do tests to check on that.

On another note: Please do not blame your mom. Years ago Dr’s didn’t say to moms well your daughter has GD and this is the issue and this is what the options are and this this this…. They said she has this and this is what we are giong to do to treat it. Regardless of your mom working or not the dr. would still have said those things. It’s just how they spoke back then, 17 years ago doesn’t seem like a long time but Graves disease knowledge has come a long way and dr’s aren’t being allowed to get away with "just using RAI", most of them do give options now and it’s up to us to choose what we want. Some do use the RAI and like you their levels have been fine. But clearly your body is having other effects as well and that needs to be addressed.

I would speak to your general dr. or gyn and ask them about getting tested for other issues like low estrogen or to high estrogen. If during your cycle after you ovulate your body isn’t producing enough Progesterone your body will miscarry. It is sad but true…these are things that they should look for. I remember being tested on days; 3,5,7,14,16,18,21,27 30… yes I was poked and prodded but it was worth it. Even if I hadn’t gotten pregnant at least I knew the reason.
They will probably ask your dh for blood work too and other things he might not like but to be honest he should be checked as well in case there are issues with him too.

Good luck

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