RAI and Graves afterwards

[bradybunch]

Not one doctor that treated me after my RAI was done ever told me that I had the chance to pass Graves along to my child, it's passing in a infant, but it can also kill them if it is not DXed soon enough. It seems that it is rare, and I think anyone that has RAI needs to know that if they are having RAI you can still pass this along, even if you go hypothyroid. Don't let the doctors make you think just because your hypo means you don't have Graves, because that also isn't true. I'm hypo and still have the effects of Graves going on in my body! Not the thyroid issues, but the others such as the eye disease, and the skin problems! All this many years after the RAI was done. So RAI isn't a cure to Graves, it's just a fix to the thyroid problem, kinda. I mean most everyone that has RAI goes hypo, so then your really not fixed there either, just easier to treat. So I hope this information helps others. These are tid bits of info I wish I had known during my journey.

[GD Women]

Graves' disease is genetic. Once doctor knows a women is GD, wouldn't the doctor monitor the baby for GD? I read that now days they check babies for hypothyroid regardless of mothers back ground and more so with hypo mothers. I would think they would do the same for Graves'.
I don't know much about passing GD to babies. I only heard of two cases, yours and from another mother in a different forum a years or so ago.

Your info and experience will help those future mothers, I'm sure.

I hope your baby is doing ok, as well as yourself.

[bradybunch]

The doctors do test a infant right after birth for hypothyroid, but who's to say what right after is. Right after for my child was 12 days. The doctor that treated me, didn't pass along my medical information to the hospital that was caring for my premature baby, so they didn't test her right away, as there was so much going on with her. Out of all 5 doctors that worked the NICU unit in the hospital only one had ever had to treat this before, or even knew what was going on. That doctor had been in practice for over 26 years. So I was lucky and so was my daughter. She is doing fine now. She is now 2, with no problems from Graves other than her eyes, which had became affected, but the older she has gotten the better they look. So she is out growing that. It only took two months for her to get over it. I just thank god she had a good doctor that knew what to do.
Now my doctor never did monitor the baby for Graves, don't ask me why, because I myself didn't know that I even needed to be monitored, no doctor had ever told me. My thyroid levels were always monitored, and kept in check, but nothing else. I don't know what they should have checked to monitor the baby, but really wish I did since I am pregnant again. I know that her heart rate was really high and that is what caused all the concern, but that took the doctor two weeks to act on. I just wish I had had more information about Graves. I've learned alot, but not near enough. The only thing I can find about any testing done during pregnancy is TSI levels might(they say it's not really an indicator)be elevated. After the baby was born last time mine was still elevated two weeks later, double what they should have been.
Now as for me, I am doing good. My thyroid levels are normal, and that feels good, my eyes are just now starting to feel alot better after high doses of steriods for almost two years, and radiation on my eyes. I still am having small problems with my eyes but hey, they don't hurt like they did. As for the skin problems they bug me, I think more because it's really ugly lookin. I would rather have the skin problems than all the others, like I had in the past. The eye and thyroid part of Graves really does suck! I feel for all those out there that are having to deal with all of that.
I really wish that Graves would just run it's course in my body and stop messing with me.LOL wonder how long that will take. Do you know if Graves can go back to attacking the eyes if it has already stopped? I know you have Graves no matter what, but does that mean that us GD people can look forward to having to deal with all aspects of this disease after we had dealt with it already?

[GD Women]

It had to be a scary situation for a while with your daughter. Glad she is doing well and the same with you.

Different Antibodies cause the eye disease.
TED (Thyroid Eye Disease) is caused by separate but very similar antibodies to Graves'. Although the thyroid gland and the eye may be under attack by the same immune system, it is felt that both conditions remain independent of one another. TED is related to Graves' Disease, but it is not the same disease. A person can have TED and not have Graves’ disease so they are two different diseases. The antibodies that cause Graves’ and TED are similar enough to be first cousins but they are not the same disease.

We are at risk for developing TED anytime. TED can come only once or visit us many times over our life. We can have multiple flair ups through our lives. Each time we have a hot phase we need to deal with what damage it is doing during that phase. I have read where people have had four hot phases, so far, and needed corrective surgery after each bout of inflammation.

In autopsies done on Graves' patients doctors have found SOME changes to the eye muscles in nearly every patient whether or not they had already been identified as a TED patient. So the fact is that we all probably have some level of TED but if it's not enough that our eyes are markedly different or uncomfortable, we don't identify it as such.

Researchers at the University of California, Los Angeles have found new clues about what causes Graves' disease.
The UCLA team identified defects in the infection-fighting T-cells of immune systems in people with Graves' disease. The study was published March 1 in the Journal of Immunology.
In the new study, the UCLA researchers examined T-cells from Graves' disease patients and found that the cells contain an abnormal surplus of the receptor targeted by the previously identified antibody (Healthy people do not produce this antibody) The scientists believe the antibody latches onto these receptors and disrupts the programming of the T-cells, which triggers a sequence of events that causes the immune system to attack its own tissue.
"The antibody provokes the receptor to signal the T-cell to grow and multiply -- long after the cell was programmed to die."

Thyroid hormone levels do not affect the course of TED, they do not have an impact on the antibodies. The hormone level do not cause problem but can aggravated it. However,Thyroid antibody levels do have some effect on the TED antibody levels since they are so closely related. So when the thyroid function fluctuates it can have an effect on the eyes in a round about way.

Prednisone does not derail the eye disease. It can alleviate the symptoms, sometimes, temporarily, but there is no way prevent the eye disease from occurring in those of us who are predisposed to getting it. Not, at least, with today's medical knowledge.

The only way to minimize any risk is to keep our stress levels down. TED is another autoimmune disease so the same rules apply as with the thyroid symptoms. Keep stress down and the symptoms will be less severe. However keeping stress levels down does not guarantee that we will not end up with severe TED.

Ophthalmopathy benefits from a nutrient-rich diet and an avoidance of environmental triggers, including iodine found in salty and processed foods.
Plenty of rest, vitamin/mineral supplements, eating more of the omega-3 oils found in flaxseed and fish can help prevent and relieve the dry-eye symptoms.
It has been reported that taking 100 mg of grapeseed extract, a great antioxidant,
twice daily protect against free radical damage and to help improve circulation and strengthen blood vessels and benefit TED. If you are using OTC eye drops you should use Lubricating eye drops with natural ingredients /no perservatives (expecially if you have TED)not something that gets the red out those can be more drying to the eyes . Colloidal silver is also involved in suppressive functions and has been reported by others to help other ailments as well.


I suffer slight TED in one eye. It appeared 2 years after RAI and it hasn't gotten any worse. I use eye drops, wear sun-glasses summers/winters/year round and take the grape seed extract and when I can find it, the Colloidal silver, and vitamins/minerals.

[bradybunch]

Thanks so much for the info, It has answered some of my questions. As for the eye drops, I have been using those for sometime now, and I also have to use gel at nights, not every night. I also use an eye mask, as my lids don't close all the way. I wear sun glasses all the time as well. The doctors recommended cold packs, I only did those when my eyes were burning so bad it seemed nothing would stop it. I have double vision, but it is only when I am laying down. So I close one eye. What a big fix hu? I have learned to live with the limits my eyes have given me. I can't look to the far left or right without pain, so my kids are always having to stand right infront of me!LOL, they hate that. I have had to learn to move my head instead of my eyes. If I forget it only takes a moment of pain to remind me. Other than those things, I deal it's not to bad. I just hope that if I have to deal with TED again, it isn't too bad. The doctors talked about doing decompression surgery on my eyes, but because I was still in the hot phase the doctor said he wouldn't do it. I have my regular Doc dealing with every aspect of my Graves now, and she was having to do research as well as talking with other doctors to find what she thought was best for me. We desided that high dose steriods would help, as they did help it feel better. I was on 100mg of steriods to start, this was all prior to the first dose the eye specialist gave me, which caused it to come back stronger(so I thought). The eye specialist didn't really know what he was dealing with so he refered me to other doctors they all seemed to just give up on my treatment except my primary doctor. I came to feel that Graves isn't something any of these doctors were willing to deal with at all. I saw an Endo, an opthamoligist, and then the Orbital Surgeon. They all just seemed to throw me away. I even had to see an Oncologist for the radiation treatment. I begain to feel like a guiene pig. After all the treatments it still didn't stop it, it just helped it feel better. Now that it seems it's not in the hot phase I am so very glad. I never realized how much my looks mattered to me. Now I look at myself in the mirror and think about how weird I look, because of my eyes.
I thought that TSI was an indicator for whether or not the Graves disease was active in the body, is that wrong? I'm going to try to read your story but my puter is acting like it has the flu, it's slower than Christmas.LOL I really would like to see what you have had to deal with. Thanks again for the info.

[GD Women]

You certainly have gone through a lot with TED. The disease and the doctors. Looks does matter to us, nothing to be ashamed of, its only being human.
The other Graves' site I belong to has a member who went through all the eye operation for TED. She is now so busy volunteering in her town on TED that she never post any more. But the last time she did, she and her eyes were doing fine and she was so happy and satisfied with the out come.

High levels of TSI and TGI ( which are thyroid growth immunoglobulins) are indicators of Graves'. It is recommended to do all 5 of the pertinent antibodies. TSH Receptor Abs: TSI (stimulating), blocking, and binding, as well as the anti-TPO (thyroid peroxidase) and the anti-thyroglobulin.
Because hypos can have low TSI, which can cause temporary bursts of thyroid hormone, which cause transient hyper symptoms. If TSI levels steadily increase they cause the patient with Hypothyroidism to move into hyperthyroidism and Graves’ disease.

Likewise, people with Graves’ disease who start producing more blocking than stimulating antibodies eventually move into mild hypothyroidism. Like the hyperthyroidism, the hypothyroidism can resolve as the immune system heals.

I don't believe they know the exact antibodies that causes TED. However, people who have high levels of both stimulating and blocking TRAb have a higher risk for TED.

I wish you success with your eyes and Graves'.