[Anonymous August 2, 1997 at 5:55 pm Post count: 93172]

#1054430

Why dont all of us wrte down questions and maybe some nice perosn that is attending the conf would print them and take em ????

What do you think?

then someone could post resonses on bb?????

only a thought

[Anonymous June 11, 2004 at 12:02 pm Post count: 93172]

#1158669

Thank-you for all who answered my first response. I only get on line every few days. I’ve let things sink in for a bit, and have some questions…

And please forgive me if some of these have been answered in previous posts…my mind seems to be in a fog!

–Oh, and I also know everyone ‘responds’ differently to treatment. I guess I am trying to get a good ‘pitcure’ of things to come.

I know some of these may sound a bit cheesy, but my husband and I really want to feel we know a little something before going on. (and we are going to the library to check out some books this afternoon!)

My thyroid doctor gave me four options:

1) Surgery (to which he said he is not in favor for, and just stopped at that).
QUESTION: To those who have had the surgery, would you do it again? Or would you seek another route? Are the side effects less pronounced when surgery is involved?

2) Start taking meds (I am sorry, I don’t remember the name. I was kinda in shock) to try to level out the hormone. I could be doing this everyday for years to come, if not for the rest of my life. He said this does not always work, and there would be side affects (like a skin rash and weight gain, not to mention the fatigue).
QUESTION: Has anyone chose this route? If so, what were some of the symtoms as a result to the meds?

3)Radiation Iodine. If I choose this, he said I would be killing the thyroid, and would be on a chemical hormone the rest of my life. He said I would have to stay away from my husband and the children for five days.
QUESTION: To those who have taken this route, would you do it again?
Are we looking at total hair loss? (For relgious reasons, I have long hair, so I am some what concerned –trival I know!) What are some of the side effects? When did you feel better?

4)Do not do anything. My doctor did not advise this one, because of past family history with heart conditions. He said that studies have shown that people who choose this route, 1/3 do correct themselves in time, where as the rest die within 15 years because of weakened heart muscles. (This kinda hit home, because my mother died at 56 with heart problems).
QUESTION: Has anyone done this, or chose to do it for a while before going on to other options?

My own personal question would be to those who have families: Any tips on how to survive going through this with family members in the home?
(I have a VERY supportive husband, and we foster parent. Right now, we have 3 sibling brothers 8 years, 4 years and 18 months.) I am a little worried how this may effect them.

Also, from what I have read, there is not anything I could do to ‘naturally’ treat this. Is that true? Our family is not hard core natrualist, but for the most part, we eat and treat minor aliments as naturally as possible. Has anyone out there tried the natural approach?

I know this is long…thank you all for being patient with me. Any words of wisdom would truly be apprechiated!

[Anonymous June 11, 2004 at 12:36 pm Post count: 93172]

#1158670

Hello. I am not the most familar with all the different types of treatment. I was on medicine for a few weeks then had the radioactive iodine treatment. I was told the radioactive iodine pill is a very very small dose and would not cause side effects such as hair loss. I have not had problems at all in that area. I did for 3 days after taking the pill have to sleep away from my wife, wash clothes seperate and I was able to use a different bathroom. We were in same house just avoided contact for the 3 days. Others on this board have told of using other treatments such as surgery or continuing on Medicines. Have a good talk with your doctor about options and talk to those on this board. They are vey informative especially the board administrators. I hope and pray all will go well for you. Gary

[Anonymous June 11, 2004 at 1:37 pm Post count: 93172]

#1158671

Mrs. Harrison,

Hi. I don’t post here much, but I wanted to try to answer your questions about the meds since I am one of the few around here who has chosen them as my long-term treatment.

The meds are called anti-thyroid drugs (you’ll frequently see them refered to as ATDs) and they work to slow down your thyroid and reduce the amount of hormone it produces. There are three kinds that are used in the US – PTU, Tapazole, and methimazole. Methimazole is also called MMI and is just the generic equivalent of tapazole.

There is a small chance of having side effects on atds: raised liver enzymes, a decreased white blood cell count, or an allergic reaction that may include rash and itching. My doc says that in her experience, allergic reactions are usually caused by taking too high of a dose and go away when the dosage is decreased. As for the liver and white blood count problems, she said these are very rare, but she checks mine every three months just to be sure. Also, PTU and tapazole are different chemicals, so if you have a bad reaction to one, it doesn’t mean you can’t try to take the other. If you can’t tolerate either drug for whatever reason, you can always opt for RAI or surgery later.

As for the weight gain and fatigue, those are not side effects of the drug, but of your thyroid hormone levels. Usually when you choose to take ATDs, you start with a high dose to bring your levels down quickly and then the dose gets reduced as your thyroid slows down. If your thyroid levels get too low and you go hypo, that is when you may experience weight gain and fatigue. Keep in mind though, that being hypo from RAI or surgery will have the same affect on your body.

I personally am very happy with my choice of treatment. Within about three weeks my hyper symptoms had improved dramatically and in 8 weeks I was back in the normal range. The only problem I have had is that we didn’t reduce my dose fast enough, so I went a little hypo. After reducing the medicine, my levels came back up and now I’m feeling much better. It is annoying sometimes having to take the pills everyday, but I know that with RAI or surgery I would have to take pills everyday for life anyway. At least with the ATDs I still have my thyroid and have a chance of one day being med free!

Well this turned out to be pretty long, but hopefully I have answered some of your questions about the atd treatment option. It is great that you are taking the time to learn about the disease and ask lots of questions before you choose a permanent treatment option. Keep reading and learning and talking with your doctor, then choose the treatment that you feel is right for you. If you have more questions about atds, I’ll be more than happy to try to help.

Take care,

Susan

[Anonymous June 11, 2004 at 2:07 pm Post count: 93172]

#1158672

After reading your posting and the replies, I wanted to also offer my experience. I also chose to take ATD’s, as that then left me with the remaining options, should the ATD’s not work. Susan (swh) seems to be very close to the same as myself in her experience (thank you Susan! Like others, I am not alone in this!) My ATD’s took me a little on the hypo side, then leveled off for awhile. We thought I may be going into remission, but alas I found out a few weeks ago that this in not the case, my levels are rising. So we have increased my dosage slightly to see how that works. The side effects are not from the meds so much as from the disease itself in it’s various stages. I guess my message is to educate yourself first. This website has several books it suggests, and I personally bought a couple. What livesavers in addition to this bulletin board. Then choose the course that you, your family (as they will be very much affected), and your doctor feel is best for you. I wish you health and happiness!

[Anonymous June 11, 2004 at 4:14 pm Post count: 93172]

#1158673

No, there is no way to treat this disease “naturally”. It is much, much too dangerous to even contemplate 1) ignoring it or 2)trying concoctions that have not been demonstrated (as our other three options have been demonstrated) to “control” thyroid hormone levels.

I know you are asking people to respond if they have done a treatment, whether they would do it again, etc. for valid emotional reasons, but regardless of the responses you get, the ONLY way to determine whether you should do a specific treatment or not should be based on consultation with your own, private doctor. You will find people across the web who have had good and bad experiences with all of the treatment options. What you need to know, however, is that all three are safer than remaining hyperthyroid. Lots safer, in general. But any one of them might not be safEST for you, based on your own individual medical considerations. Your doctor is the best person to evaluate those issues.

Hair loss occurs because of thyroid hormone imbalance, and not the radiation pill. Therefore, you could see more hair loss than normal using any of the treatment options. Once we get back to controlled, normal levels of hormone, excess hair loss stops.

As for the foster children, what they need to know is that you are ill, but that there are treatments that will make you well again. Illness is a part of life, and none of our children can be protected from the insecurities that go along with it. Foster children undoubtedly have lots more insecurities than kids raised in secure homes and that can make things more difficult, obviously. But I usually recommend being up-front with explanations to kids — all our kids. They tend to have great “prevarication detectors” built into their nervous systems, and they know when we are upset, or being deliberately obscure, trying to hide a topic. Their imaginations, once they detect prevarication on our parts, often lead them to much greater horrors than the reality we are trying to protect them from. In the case of Graves’ disease, that is particularly true. Yes, it makes us pretty sick, but we do get well again. And make sure to tell them that the name of the disease is based on the name of the doctor in England, who identified it. Children can pick up on the name, and they need to understand why it is called what it is called.

Bobbi – NGDF Online Facilitator

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