[Kimberly]

#1064380

Hello and welcome to the boards! I have to run out shortly, but wanted to get your message approved so you can start getting some responses. We do have several posters here who have been through the process of trying to concieve, so hopefully, you will get some good feedback. Keep in mind that we are all just fellow patients here, not doctors. So while we can serve as a "sounding board" as you work through your decision, we can’t *tell* you which option is best for you. A couple of quick notes:

You mention that you had antibody testing, but were these antibodies specific to Graves’? The most common antibody tests for Graves are TRab and TSI. There are a couple of other antibody tests that can indicate the presence of another autoimmune thyroid condition called Hashimoto’s thyroiditis.

Keep in mind that surgical removal of the thyroid does not *automatically* make the antibodies go away. However, one frequently cited study showed that patients who were treated with surgery or anti-thyroid drugs generally saw a gradual lessening of antibodies over a 12-month period. With RAI, the antibodies also decreased, but still remained somewhat elevated for up to 5 years. (The researchers weren’t sure what caused this effect).

Hopefully, you will get some good feedback…but I will check back later this evening.

[twnkletoez]

#1064381

thank you for your quick response. It in fact my my TSI that they were checking and that was the antibodie that has doubled.

[snelsen]

#1064382

Hi, I am writing as yet another patient with Graves’. No medical advice, just conversation.

This is a good question for your endo. My experience and what I am told by endo and neuro/eye docs, is that other than being supporting information that we have an autoimmune disease, these tests TSI and Trab, really don’t matter very much, and not at all when determining treatment of the PERSON. The TSH, T3, T4, p lus how we are feeling, determine our meds.

To put another way, from a quality of life and treatment point of view, it does not matter if there are/are not antibodies present after a thyroidectomy or RAI. But I realize you are just giving all the info you can.

Golly, I am sorry that both anti-thyroid drugs, PTU and methemazole, are not options for you. It sounds like you are going to well informed docs. There is so much different stuff you are dealing with! I did have surgery, did take PTU to get to a euthyroid state so that I could have the surgery. I was 24 at time. After the surgery, I got along well, remained euthyroid, regular periods resumed, and got pregnant (planned) about 5-6 months after the surgery.
Is your endo hoping that you become euthyroid again so that you can have the surgery? As he said, that cannot happen when you are hyper.

Seems like a good idea to go to the gyn doc, too. As Kimberly said, none of us are medical people, but patients who have Graves’ in all stages, plus thyroid eye disease. But one thought did occur to me. That is discussing with your gyn about taking pills to regulate your cycles, then you would know for sure when you were ovulating. But I really don’t know what I am talking about.

I am glad you are on this board, and extremely relieved that you are having docs who are following you carefully.
As difficult as Graves’ is to experience, either hypo or hyper, wanting to get pregnant adds a whole new dimension of complexity to an already complex life!

I do know that quite a few people on this site are in the same situation as you, trying to figure out conceiving and Graves’. The fact that you can’ take the anti-thyroid drugs is another confounding factor.
Welcome, and you will probably get more helpful posts that mine, and be hearing from our facilitators, who are wonderful.

[twnkletoez]

#1018380

Hello all,

I am just starting out on this forum. And was reading thru a lot of your wonderful advise and was hoping that I could obtain some of my own.

To start out I am 25 and was diagnosed with Graves Disease in October 2009 after having resting heart rate of 120-160, being anxious, tired, clammy, hungry and loosing weight, diarrhea, abnormal periods and sleeplessness. At that time they ran my levels and they were TSH <.01, Free T4 1.56 and my Thyroid antibodies were 235. They did and ultrasound of my Thyroid and found on side more enlarged than the other. My endo said my levels were not to bad but he put me on med first Methemazol at 10mg I tried this for a week and after 3 days I became ictchy with hives and chest tightness he said that I was allergic and should stop taking the medication. He then sent me in for a nuclear uptake to see exactly what my Thyroid was doing found the same information as blood that I was HypER and have Graves. After that he told me there is one other medicine to try and that was PTU I also went on that for about a week and found that I was also allergic and again broke out in hives and tight chest and it also became difficult for me to breath.

So those two options of medication are out the door and it was now December 2009 and my new options were RAI and surgery. To be honest I freaked out with the first radioactive pill I had to take and am not willing to take another. I also am trying to get pregnant, however it was put on hold until we could get thing under control. In regards to surgery I am frightened of needles and the thought of being under the knife. But I can learn to get over those fears. My one problem about the surgery is that my Endo. Said that I have to be in the normal range of my numbers before I could even consider that option and I clearly was not in the normal range.

I then asked my Endo. If we could “see what happened” I was praying every day that my numbers would go back normal and that I would feel better again. Well wish come true…. I was feeling better by mid March 2010 and my numbers were in the normal range TSH 1.08 Free T3 3.31 Free T4 .96. However by July 2010 I was feeling not normal for about 2 days and it passed but my periods were increasing in length between at 38 days. It was time for my labs to be repeated so I thought it was a good time to get them checked. In July 2010 they were TSH 1.44 Free T3 3.41 Free T4 .94.

Now here we are in August 2010 and I have been trying for a baby sense April 2010 as my numbers had been normal in March 2010 and have had no luck. I do understand that it could take quite some time to become pregnant and I only have one chance a month sense I am using a sperm donor. I do also understand that the abnormal periods could be something other than my thyroid however I have never had this problem except when my numbers were outta whack in October 2009. This month I got my labs done again and found that my numbers are TSH 1.09 Free T3 3.38 Free T4 .78 Total T4 .44 and my thyroid antibodies have doubled at 483.

I see as a pattern that in October 2009 my numbers for TSH were low, FT3, FT4 were high and my antibodies were high. Then they went “normal” in march. Now in August they are trending TSH lower and FT3, FT4 are trending higher as they were in October 2009. My antibodies also have DOUBLED. My endo. Said my numbers are still in the normal range and is not sure why I am having symptoms again. He also said that my period abnormalities could be cause by some other issue. However before all this I was able to conceive and my period were always normal for me. Never late and always consistent in flow. So I will be seeing my gyno as a precaution and have her check everything. But I the mean time I am not sure what to do about my symptoms.

Honestly I am new to this and a bit concerned that I am no longer feeling normal and am having problems conceiving.

My question is I know I still have Graves as my endo. said cause my antibodies are still high. But will I continue to have problems conceiving with these numbers like this. Will I still not feel normal what should I do should I get surgery and have my thyroid taken out to get rid of the antibodies? Please help me I am at a loss at this point.

[mamabear]

#1064383

I have some very personal questions so I pm’d you instead of putting it out on the board. Please look in your inbox, Top left where it says (0 new messages), you can retrieve it from there.

[Kimberly]

#1064384

Hello – Just wanted to add a couple of other notes.

Thanks for the clarification on the TSI. As Shirley mentioned, the antibody levels don’t generally have an impact on our course of treatment. This test is most useful (1) at the beginning stages to check to see if the patient does have Graves’ antibodies and (2) after the patient has been on Anti-Thyroid Drugs for a while, since this can help determine whether to discontinue the meds.

I would suggest getting copies of your labs and making a note as to whether your TSH, T4, and T3 were flagged as high or low…or whether they were in the “normal” range. Normally, during the initial stages of Graves’ (before treatment), our Free T4 and Free T3 will be out of range on the *high* end. Also, in determining whether the patient is a candidate for surgery, the important levels are the Free T3 and the Free T4, as those represent the *actual* amounts of thyroid hormone present in our bodies. TSH is basically just a “messenger” that tells the body whether to produce more or less thyroid hormone. Although a low TSH is *usually* a sign of hypER, TSH can remain suppressed for months – or even years – in Graves’ patients.

I do think it’s a good idea to get things checked out by a gyn as well and discuss your concerns about trying to conceive. Being in a hypO *or* hypER state can cause complications…so you would definitely want to have stable levels throughout a pregnancy.

Some docs will actually recommend Benedryl and allow a patient to continue using Anti-Thyroid Drugs despite hives/itching. Sometimes, it can be the hypER state that causes the hives, and the reaction will subside over time. *However*, if the doc has a reason to be concerned that the reaction is potentially serious/dangerous, ATDs will be eliminated as a treatment option.

Hopefully, you have gotten some good "food for thought". Again, we aren’t docs, so we can’t interpret labs or specifically tell you which treatment option to pursue…but we’re always here for general questions and support!

[twnkletoez]

#1064385

"Is your endo hoping that you become euthyroid again so that you can have the surgery?"

If you mean what I think you mean… That my numbers need to be normal in order to do surgery at this point the endo says that they are in "normal/borderline". Sense the last time I told him that I was uninterested in the RAI he has no talked to me about the surgery or changes the subject on me. In the past he also said that the surgery needed to be done when I was in normal ranges and was usually only done in pregnant women who go hypER. So he is really not one for surgery but has never talked me out of it. I am not sure if I should push it and tell him thats what I want done before I get pregnant or if being some what normal and being on fertility drugs to get pregnant would be better. I know there are so many different people here and so many different situations with each person. Just some clarity or insight on some one else’s story would be helpful.

Thank you all so much for the support it really is helping me understand more of what is going on and how other people deal with the same things i am going through.

Katy

[lhc11]

#1064386

I’m so sorry you are having these difficulties. I too am trying to conceive at the moment and hoping for success soon after months of no success that was almost definitely due to my being so hyper. (We are actually seeing a reproductive endocrinologist, but that is largely because I turn 39 tomorrow and we, ahem, have no time to lose; you are lucky to have time on your side in this regard). It is not true that surgery is only done for pregnant women who become hyper; more and more people are turning to surgery IF it is available to them and IF they are good candidates for it (which depends on factors only your doctor can really discuss with you). I am someone who chose surgery because I didn’t want to wait 6 months or more with the RAI before trying again to conceive and because I had access to (and insurance permission for) an excellent thyroid surgeon at a university hospital. I did briefly contemplate switching to PTU and trying to get pregnant without surgery or RAI, which some people on this board have in fact done. I didn’t want to do this because I have already had one miscarriage, and if something went wrong and I hadn’t done what I considered the safest thing for a child (that is, surgery), I would blame myself. (It was a very personal decision and I am not judging anyone else’s choices). My endo was also supportive of my choice and was the one who set up my original surgical consult. You can read about my struggle to decide what to do by searching for my posts with my username (lhc11) or just with the word "surgery" in the search box.

At any rate: my understanding is that ob-gyns and reproductive endocrinologists do not worry about the antibodies as a barrier to getting pregnant; the time they check the level of antibodies (after they’ve checked to verify that you have Graves’ disease) is sometime in your third trimester, because there is a very small chance (something like 3%) that the antibodies can cross the placental barrier to the fetus (this, too, is treatable, so there is no point in worrying about it–I have a good friend with Graves, who had RAI ten years ago and a beautiful healthy baby girl 2 and 1/2 years ago with no problems at all).

It sounds like you might need to force the issue and be really firm with your endo about what you want. But you also might want to ask why he is turning you away from surgery–it could be that there isn’t a good enough thyroid surgeon in your area, for example.

Good luck!

lhc11

[Author]

Posts