[Anonymous April 7, 2008 at 7:58 am Post count: 93172]

#1075822

Hi, Andrea, and welcome to our board.

At the top of the bulletin board page there is a menu called “Reading List.” There are books recommended there that can help to answer your questions. I found “The Thyroid Sourcebook” to be extremely helpful: it’s written in everyday language, and it covers just about any questions you might have about the thyroid in general, and Graves disease in particular (along with other thyroid topics). It discusses the radiation treatment (we call it RAI here), as well as PTU (propylthiouricil) and surgery, which are the major ways of treating Graves.

In a nutshell, Graves is an autoimmune disease. Antibodies have attacked your thyroid causing it to malfunction, pouring out too much thyroid hormone. The drug you have been put on (PTU) acts as a chemical barrier to the production of thyroid hormone, so by taking the right amount of it, your thyroid levels are controlled in the ‘normal’ zone.

It is very common for someone with thyroid disease to have an enlarged thyroid gland (a goiter). It is not a tumor. My own, amateur, explanation of it — since it happens with both hypothyroidism and hyperthyroidism – is that if the thyroid cells are being commanded to work overtime, the gland grows. I’m not sure what the medical explanation of it is, but that is my guess.

As to other tests: a blood test is definitive for showing that someone is hyperthyroid. There is either too much thyroid hormone or not. As to “why” someone might be hyperthyroid, there can be several causes, and doctors work their way through a diagnosis by discussing history and also by doing an uptake and scan test. If you have had this test done, what the radiologist saw on the scan was that every bit of your thyroid took up the test iodine; every bit of your thyroid is over-active. This general pattern (called ‘diffuse’ in medical terms) is the defining characteristic of Graves. But, unless your excessive thyroid levels are caused by an infection (and you would have other signs of infection: elevated white count, fever, etc.) the treatment options are the same. So, it is not necessarily mandatory to have the uptake and scan.

Because thyroid hormone is used in most of the body’s cells, it is called the “master gland” — and if the thyroid is malfunctioning, everything else is on the fritz too. Anxiety, night sweats, hyper-bowel, rapid heart rate, etc. etc. etc. are all well-documented symptoms of hyperthyroid. So, yes, as your doctor suggested, getting your thyroid well under control will, most likely lead to you being able to give up on all those other medications. They were undoubtedly given to help with a symptom being caused by the elevated levels of thyroid hormone.

I know that the wait for an endo can seem way too long, but since your GP (or whomever) has prescribed PTU, you ARE being treated right now for your Graves. Some people do stay on PTU for a long, long time. For some folks,depending upon other health considerations, it is a treatment that is preferable to others and they stay on it forever. Or until the thyroid conks out — whichever comes first. Most of us get either RAI or surgery to remove the thyroid because then we only have to take one pill a day — replacement hormone. It’s easier than taking multiple PTU pills every few hours. But rest assured, you are receiving treatment.

The problem with any of our treatments is that it takes time AT normal levels of hormone for our bodies to heal from the effects of too much thyroid. So, we do not necessarily FEEL “normal” right away, even if our levels are “normal”. Think of hyperthyroidism as a hurricane. Once the wind is gone, there is still a lot of rebuilding to do. It is the same way with the body. It can take a good many MONTHS at normal levels of hormone, before we can feel more ourselves. And the longer someone has been hyperthyroid, the longer it can take the body to heal.

But we usually do heal, and do get our health back.
Bobbi – NGDF Online Facilitator

[Anonymous April 7, 2008 at 11:18 am Post count: 93172]

#1020044

Hello everyone! I was so happy when I found this website and this support group! Words cannot even describe how relieved I was to see that there are people out there that I can talk to about this! This disease has all but ruined my life for over 5 years now. I suspect that I have had thyroid problems my whole life. It has been a hard, emotion filled road so far! I have been seeing one doctor after another for over 10 years now trying to find out what is wrong with me! Just this past November, I was diagnosed with Graves Disease. I have had so many health problems and each time I would start listing them to the multiple doctors I’ve seen, they would look at me like I was CRAZY! A few of them even told me it was all in my head! My symptoms are: fatigue, depressed, anxious (& anxiety attacks), muscle spasms, all over body pain, 8 miscarriage in the last 3 years, insomnia, fast heart rate (had 2 heart attacks already but they couldn’t find the cause at the time but are suspecting thyroid now), tremors, hot flashes, weight gain, severely irritable and angry, sensitivity to (light, sound, temperature, and touch), constant bowel problems (alternating diarrhea and constipation), muscle deterioration, can’t concentrate or remember things, low blood pressure problems, swelling & tingling in hands and feet. I’m sure that’s not all of them but you get the general idea — I am completely and totally miserable ALL the time and cannot get any relief! I am on so many medications, I have to carry an extra purse just for them – propylthisuracil (thyroid), paxil (depression), xanax (anxiety attacks), hydrocodone and oxycodone (pain), soma (muscle spasms), klonopin (sleep), toprol & florinef (blood pressure), zantac (GI problems), naproxen (swelling & inflamation), and there are a few more that I can’t think of right now! It’s CRAZY!!!! And I’m tired of it! Of course, now I have a dependency issue with some of these medications which makes matters even worse! When I finally found a doctor in November that told me that I’m NOT CRAZY, I just burst into tears and laughing at the same time! I was so relieved! When she told me that once they get my thyroid under control I would be able to get off all those pills, I couldn’t believe it!

Now, I have some questions and would GREATLY appreciate anyone’s time if they would help me! My interternal med doc has referred me to an endocrinologist, that I still haven’t seen and have been waiting since November of last year! I am seriously upset about that and am considering having her refer me to someone else. I was told that I need to have a radiation treatment and then would be on thyroid meds afterwards. Nothing has been explained to me by any doctor yet. What I know about the disease and the treatments, I found on the internet myself! I have a huge goiter. Could it be cancerous? What tests should my doctors be running (all they’ve done so far is check my thyroid levels)? Is there anything I can do before the radiation therapy to help lessen or stop some of the symptoms? Please someone help me???? Is there anyone out there that needs a friend to vent to about this and would be willing to let me vent too??? My email address is andrea_kay@windstream.net and if you would like to talk, send me an email and maybe we can talk over the phone – I have free long distance within the US! There is no one around me (friends or family) that has any idea how bad this is for me sometimes. I feel so alone and scared! I need someone to talk to that understands what I’m going through, someone I can talk to that doesn’t think I’m making it out to be worse than it really it, someone who knows just how bad it is at times! I’m not getting a whole lot of support from friends and family – they just don’t get it and I think they get tired of listening to me so I’ve just stopped talking to them about it! Anyway, I hope to hear from someone soon! Thanks for listening and thanks ahead of time for anyone who responds! ~ Andrea in Arkansas

[Anonymous April 16, 2008 at 11:39 pm Post count: 93172]

#1075823

Andrea,

Welcome! I am pretty new to the board and have found it a wonderful support and I know you will too! I have experienced many of the same symptoms you have and I would love to talk to you sometime- I could use it too! You can e-mail me anytime at angie.passons@verizon.net
Angie

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