# Graves...dont know what to do?



## Linty (Aug 25, 2011)

Hi

I have been diagnosed with Graves. :sad0049:
Ok my prob is: We want to have a baby, so in SA we only have Neomercazole tabs which according to endo is not safe for ttc and pregnancy. RAI is out of the question (sort of) because of age we cant wait a year before trying. Thyroidectomy is the suggestion.

So what do you think????????? Is thyroidectomy the answer or what are you suggesting?

My results:
TSH (Beckham) 0.1mIU/l
T4 19.8 pmol/l

TSH antibodies very high.
Vt d and iron defiency.

Help please???


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## webster2 (May 19, 2011)

Welcome, and I am sorry about your diagnosis. I think it is possible to have a child being on thyroid replacement. I had several miscarriages and then the thyroid problem was found. I had a partial thyroidectomy, and almost one year to the day, I had a baby. I wish you the best of luck.


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## Linty (Aug 25, 2011)

Thank you, Webster.

How was the op? I am scared to death for the operation? Are you under the whole operation or is it only local anaest?

Dr said there is meds for Hyper but only available overseas, i think its PTU or something, that is safe for conceiving and pregnancy.


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## webster2 (May 19, 2011)

I have had the surgery twice. The most recent was 4 weeks ago today. I never found the surgery all that bad. Yes, there is discomfort for a bit afterward. I drank a lot of ice water to soothe the throat ache and dryness. I didn't need pain medication at home. Naps are a good thing for awhile. Yes, it is general anesthesia, thank goodness!

I am not sure about the meds you refer to. There are a lot of very knowledgeable posters on this board. I am sure they will be able to answer your questions more thoroughly.

I wish you all of the best!


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## Andros (Aug 26, 2009)

Linty said:


> Hi
> 
> I have been diagnosed with Graves. :sad0049:
> Ok my prob is: We want to have a baby, so in SA we only have Neomercazole tabs which according to endo is not safe for ttc and pregnancy. RAI is out of the question (sort of) because of age we cant wait a year before trying. Thyroidectomy is the suggestion.
> ...


Hi there, Linty and welcome!










I really think that surgery is the way to go here for many reasons. #1. You will be up and running soon and won't have to worry about radiation. #2. The pathologist will check the gland for cancer (this is important) and #3. On the long haul, it will be easier to get you to the euthyroid state (feeling good) and keep you there.

Let us know what you decide and by the way; "What is SA?" South America?

I am sorry you have Graves' and I know you don't feel well. You will get well and you will have your baby or babies as the case may be!


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## Linty (Aug 25, 2011)

Ohh thank you for the welcome, Andros!!

SA = South AFrica

I just cannot decide, gosh its so hard. I am already in the age difficult to conceive so the op is the most quickest way to sort this issue. But i am really afraid, more because of the op and the time i will be "under" and i cant remember anything - i know it sound stupid but only remove my tonsils when i was 5yrs old. :scared0015::ashamed0002:
But i understand what you saying and it make sense.
What is the procedure for the surgery?


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## Andros (Aug 26, 2009)

Linty said:


> Ohh thank you for the welcome, Andros!!
> 
> SA = South AFrica
> 
> ...


Others will help w/ the procedure as I have not had the surgery although I wish I had. I had to have RAI "3" times; believe that or not and I will always wonder if I had cancer.

Aha; well welcome from South Africa!!! We have a really really nice bunch here!


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## webster2 (May 19, 2011)

Linty said:


> Ohh thank you for the welcome, Andros!!
> 
> SA = South AFrica
> 
> ...


Hello again!

SA, I thought South America too. It doesn't sound stupid to be nervous about surgery at all but sometimes we need it to make our lives better. I will try to help calm your fears about the surgery by sharing my experience. Both of my surgeries were done at the same hospital, twenty years apart but the procedure was very similar.

I had a pre-op physical including blood tests. I do know the TSH was one of the tests.

On the day of the surgery, we needed to be at the hospital about 2 hours before the scheduled time. Once in the pre-op area, they took my belongings and I put on one of their lovely "gowns". They took vitals and started an IV with "something to take the edge off". It was very good. The surgeon, anesthesiologist, etc, visited, and went over what was going to happen and answered any questions we had. From there, my husband had to leave and I was wheeled off to the operating room. The room was very cold and bright. There was a team of 6( introductions were made) in the room getting things ready, and the doctors weren't in there yet.. They were a very well oiled machine. I was still asking questions (not related to my surgery but how things work in there), and getting answers. I was moved to a narrow bed, helped to get comfortable and then strapped in with 3 or 4 belts, for this I was happy. They covered me with a nice blanket. And, then I remember coming to in the recovery room. It was about 2 and a half hour surgery. Piece of cake, for me.

I was very happy that in the 20 years, sensors had been developed to let them know if they were anywhere near any important nerves. I was very nervous about this second surgery but wanted to feel better, so kept thinking of that and not what was going to happen.

Best wishes, and welcome!:hugs:


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## webster2 (May 19, 2011)

I forgot to add the the ENT doctor did a test to check out the vocal chords and wind pipe. It didn't hurt nor was it uncomfortable although, it made my husband gag which made me laugh...


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## AZgirl (Nov 11, 2010)

Sorry its very long but.......
Graves' Disease in Pregnancy
Treatment and Management of Hyperthyroidism in Pregnancy

Learn about the current views regarding treating Graves' disease in patients diagnosed with Graves' disease or who develop hyperthyroidism during pregnancy.

Graves' disease

Women with Graves' disease, a condition of autoimmune hyperthyrodism, have special concerns during pregnancy. Besides ensuring that their own thyroid hormone levels are adequate, during the first trimester they must also produce sufficient hormone for their baby's needs.

Concerns

Changes in estrogen and progesterone levels related to pregnancy also affect thyroid hormone levels, usually lowering them as pregnancy progresses. This makes regular monitoring of thyroid levels and regular adjustments to anti-thyroid drug (ATD) doses essential.

Immune function also changes in pregnancy and must be considered. Thyroid antibodies, which are usually increased dramatically in women who have had radioiodine ablation, can pass from the maternal to the fetal blood circulation causing transient conditions of hyperthyroidism. High doses of anti-thyroid drugs can also cross the fetal circulation contributing to fetal hypothyroidism. This article addresses these concerns and describes the latest findings on treating hyperthyroidism in women who have Graves' disease or who develop hyperthyroidism during pregnancy.

Treatment

Experts agree that the best approach is to treat Graves' disease and bring thyroid hormone levels into control before pregnancy occurs. The goal here is to bring patients to a euthyroid state in which their FT4 level falls into the normal or reference range.

A low TSH level doesn't mean that the patient is still hyperthyroid. Using anti-thyroid drugs, propylthiouracil (PTU) is the preferred medication because it is less likely to cross the placental barrier. With PTU, the dose is usually lowered after the first 6-8 weeks at which time patients are kept on a maintenance dose of 50-150 mg PTU daily. The lowest PTU dose needed to keep FT4 within the top 1/3 of the reference range is recommended and doses of 200 mg PTU daily or less are considered safe.

When Graves' develops during pregnancy

For patients who develop hyperthyroidism during pregnancy, experts often withhold treatment unless FT4 becomes moderately elevated. For instance, using a range of 0.8-2.0 ng/dl, many physicians do not treat hyperthyroidism if levels are below 2.5 ng/dl or higher in patients without symptoms of hyperthyroidsim. Since thyroid hormone levels begin to fall in the second half of pregnancy, and thyroid hormone levels are often falsely elevated in early pregnancy due to increased binding proteins, this is considered a safe approach.

A general rule is that while euthyroidism is the goal, thyroid hormone levels that are slightly decreased have graver consequences than thyroid hormone levels that are slightly increased. When hyperthyroidism develops during pregnancy, diagnostic tests and treatments requiring the use of radioiodine cannot be used. Thyroid antibody tests are used to determine if hyperthyroidism is autoimmune.

Stimulating TSH receptor antibodies

Levels of stimulating TSH receptor antibodies (TSI) should also be checked with blood tests in early pregnancy and again in the last trimester. In about 1 percent of cases where women have elevated TSI levels, these antibodies can cross through the placental membrane causing temporary conditions of hyperthyroidism.

Knowing that TSI levels are elevated, physicians can provide adequate fetal monitoring to detect and treat fetal goiter, increased heart rate or other signs of hyperthyroidism. For women on ATDs, this monitoring is also used to detect drug-induced temporary hypothyroid conditions.

Thyroid Function in Pregnancy

In early pregnancy, thyroid hormone levels rise to support the mother's needs and they may be falsely elevated because of changes related to increased estrogens. The hormone beta HCG, which increases in pregnancy, is very similar to TSH and can cross-react with TSH, helping to increase thyroid hormone levels.

Consequently, TSH levels fall in early pregnancy and are considered normal unless they fallow below 0.1 mu/L Symptoms in early pregnancy are also similar to those of hyperthyroidism, such as feeling hot, excessive sweating, emotional excitement, anxiety, nervousness, nausea, vomiting or a racing heart. Symptoms that suggest hyperthyroidism rather than pregnancy include a heart rate increased more than 100 beats per minute and weight loss.

Untreated, maternal hyperthyroidism is associated with premature labor, miscarriage, congenital malformations and premature labor. Untreated, maternal hyperthyroidism can also lead to heart problems and thyroid storm.

Hyperthyroidism that develops or worsens during pregnancy is usually treated with PTU although in patients intolerant of PTU, methimazole may be used. If thyroidectomy surgery is required it is safely performed only during the second trimester.

Immune system changes

In addition, the immune system may also become stimulated by fetal tissue although immune function typically slows down after the first trimester as it supports the growing fetus. The immune system of the fetus remains immature until about the second year of life. Consequently, it doesn't produce antibodies well and autoimmune diseases do not usually develop in infancy. 
Transient conditions caused by placental transfer of thyroid antibodies cause temporary conditions that persist for a few months until the antibodies are broken down and excreted by the body. In the United States, unless the parent refuses testing, all newborns are tested for thyroid function so that congenital conditions and transient conditions are diagnosed early.

Late Pregnancy and Postpartum Period

In the second half of pregnancy, HCG levels fall and estrogen levels rise. The immune system slows down. Consequently, thyroid hormone levels fall. Most women on PTU are able to reduce their ATD, and about 1/3 of all patients on PTU are able to stop their meds completely. Many women with Graves' disease experience spontaneous remission at this time. Of those, a small number will experience a return of symptoms or conditions of postpartum thyroiditis during the postpartum period, the period up to the first year after childbirth. Additional studies show that used appropriately PTU can be safely used while breastfeeding. ♦

Resources:

Thyroid Disease in Women, New York Thyroid Center at Columbia University 
Susan Mandel and David Cooper, The Use of Antithyroid Drugs in Pregnancy and Lactation, The Journal of Clinical Endocrinology & Metabolism, 2001; 86 (4): 2354*2359.


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## Linty (Aug 25, 2011)

Thx Webster, it seems not too bad. I really dont know why i am scared.

Thx Azgirl for the info.

I was wondering why PTU is not available in our country, but oh well.

Does anyone of you battled to coneceive while hyper/graves? Sorry i dont know how old everyone is and if this i applicable to everyone, but i really want to get pgies before i am too old (which i am - on the edge -lol) And this is really very new to me, although i had hyperthyroid for a few yrs now, but with lacking of knowledge and wrong advice from dr's i am sitting in this dilemma now!!


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## webster2 (May 19, 2011)

Linty said:


> Thx Webster, it seems not too bad. I really dont know why i am scared.
> 
> Thx Azgirl for the info.
> 
> ...


I am convinced that I was hyper while trying to conceive, and lost several pregnancies before it was identified. My kids are 11 years apart because of that. Best wishes to you!


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## Linty (Aug 25, 2011)

Webster, i am sorry about your losses, shame that must have been heartbroken. I was never pg, so i dont know if maybe even after problem is sorted if i will get pregnant. But if i decide for the op, then we will give it 3/4 mths and go to specialist.

Your are such a big help and so nice.


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## patient50313 (Aug 27, 2011)

Do you consume aspartame or any other artificial sweetner? You really have to read the labels because its sold under different names (Equal, Nutrasweet, aspartame, Phenyaline).

I had read that some doctors believe that aspartame is the cause of a lot of auto-immune diseases and neurological disorders and suggest that people with these diseases eliminate if from their diets. So, I thought I'd give it a try to see if it would help me.

I was taking 30 mg of methimazole a day for my hyperthyroid and when I stopped consuming aspartame my symptoms improved DRAMATICALLY in just a manner of a few days and I could no longer tolerate my thyroid medicine, so I stopped taking it. I now take a dietary supplement called L-Carnitine which gives you the same results as methimazole without all the side affects. Once I started taking it my hair stopped falling out and now I rarely find hair in the shower.

I would start there and you might be surprised you may not need any medication.

I continue to follow-up with my Endo Dr who recommends that I stay on the L-Carnitine since it's working. He says it's perfectly safe to take, so I've been taking 500 mg in the morning and 500 mg at bedtime.

Hope this works for you as well as it has for me. Good luck to you.


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## webster2 (May 19, 2011)

Linty said:


> Webster, i am sorry about your losses, shame that must have been heartbroken. I was never pg, so i dont know if maybe even after problem is sorted if i will get pregnant. But if i decide for the op, then we will give it 3/4 mths and go to specialist.
> 
> Your are such a big help and so nice.


Thank you, it was a sad time for us, and with the one that stuck...we were very cautious but he's almost 20 now! I hope all goes well for you! Let us kow how you are doing.


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## Linty (Aug 25, 2011)

Hi there

Webster, i'm glad you had your son without any probs.

Patient, i dont use any sweeteners. I'm pushed for time here so dont know if i must give the L-carnitine a go. Will find out from my dr, but i asked about diet and they said no it wont fix anything :sad0049:

So i've decided to go with the op....ok its out i said it :tongue0013:but it doesnt take my fears away. I'm still afraid for the "new" it will be my 1st op.

Do you think they will put me back on the meds untill the op to get thyroid normal before the cut?

Thx again for all your help!!!! This is so nice here...


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## webster2 (May 19, 2011)

Good for you on making a decision! I am not sure how the medical folks will handle before for you. I took anti-thyroid drugs and a beta blocker for about 8 weeks before. My labs didn't go down but I felt a little better. There are lots of posters here that will hold your hand, virtually, and help you through this process. "Keep your eye on the prize", and that will help too! Best wishes!


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