[Bobbi]

#1075105

Hi, Kim, and welcome:

I have Graves, and I am healthy. The treatments available to us are effective, and much safer than hyperthyroidism. So, while I know it is scarey to be diagnosed with something like this, know that it is very treatable.

There is a list of recommended reading on the main/home page of the NGDF. The books recommended there can help a lot when it comes to understanding what is happening, and what the treatment options mean. If you read up a bit in one of those books, you’ll be able to whittle down your questions for your endo, so that you get the biggest bang for the $176 visit!

Bobbi — NGDF Online FAcilitator

[zanymom4]

#1019935

I wanted to say hi & that I’m glad I found this board. I have so many questions and am really worried about what to expect with this Graves disease. Let me start by telling you a little about myself- I also have Charcot-Marie-Tooth Disease which is a periphreal motor and sensory neuropathy that is categorized as a form of muscular dystrophy. Basically it kills the nerves that control the muscles in my feet, legs, hands and arms and also kills the sensory nerves. Ones the nerves die the muscles start to atrophy. I have really went downhill over the last several months. My feet and legs hurt cosntantly and I’m starting to have trouble with my hands and fingers spasming like my legs have for years. I fall very frequently and have been lucky so far that I haven’t broken anything other than my wrist. I can’t stand nor sit for long periods and I stay tired and even have to nap sometimes during the day.

Now on to the Graves disease- On Nov 11 I was sitting listing things on ebay and all of a sudden it felt like my heart turned upside down and started pounding. I headed to the ER and when I got there my heart rate was over 200 and my blood pressure had gone fairly high also 185/110. They did an EKG and said I was in AFib. They did a blood workup and automatically diagnosed Graves. I was transferred to another hospital by ambulance where I was in Cardiac Intensive Care for several hours then moved to a stepdown unit once I came out of AFib on my own with a Cardizem (?) drip. They kept me in for 3 days where I was supposed to have the uptake test but some smart person at the hospital gave me PTU when I wasn’t supposed to have it yet til the test was done. They sent me home from the hospital since they couldn’t do the test til I was off the PTU for at least 5-7 days. I’m on aspirin 1Xday, PTU 50mg 3Xday, Lopressor 100mg 2Xday, Ativan 1mg 3xday. I’m not taking any of my meds for the CMT right now.

At my 1st appt with an Endo on Monday of this week, ($176 just to walk in their door) he is upping my PTU to 150mg. I have no idea what any of my levels are and really don’t know much else either as he sure did not explain anything and didn’t really answer any of my questions, just sort of assumed I should just do as he says. I have paperwork to have blood work done in Feb then to see him again in March. I do know that in the hospital plans were to do RAI before I was released after they had done the Uptake test. My big problem is- I do not have insurance. My hubby works 2 jobs and makes too much for me to qualify for TennCare (TN equivalent to Medicaid) and I have been fighting for disability for over a year. Luckily one of his jobs is with a pharmacy so I get all my meds at cost.

Although it is nice to finally know why my heart races all the time, why my eyes just ‘hurt’ , why I’ve really lost all my strength in my extremities, I’m really scared and confused about all of this. If anyone has any insight, advice, or anything else that may help I’d greatly appreciate it!

Thanks & looking forward to being a part of this board!!
Kim

[ohiolady]

#1075106

I just wanted to make you feel better in spending $176 – My first visit at the endo (no tests – just visit) was $309.
I think you got a bargain!!!

[zanymom4]

#1075107

Hi again everyone! I wanted to give a quick update and find out about some things. I still haven’t gotten anywhere on trying to get insurance I have only seen the endo once and wasn’t happy with the way that visit turned out at all. He put me on 150mg of PTU 3 times daily and I am due to go back in March. In the meantime I have been seeing the heart specialist monthly- he is very concerned because of the endo not keeping a closer eye on my thyroid levels after them being so off the charts when I ended up in the hospital and has been testing my levels himself. Today’s results were T4-6.7 and TSH-0. I don’t have a clue what the levels were when I had my ‘thyroid crisis’ but what do these levels mean anyway and how far off from normal are they? He (heart specialist) had me on 100 mg Lopressor twice a day and had told me last month to cut back to 50 mg twice a day for 2 weeks then to 25 mg twice a day. When I was in there today he said to stay on the 50mg and not cut back anymore because of the thyroid levels. He told me they should have straightened out after a few weeks of being on PTU.

How long does it normally take for the PTU to level things out and does it ever ‘level’ out if you are not able to have RAI?
I have been told that the longer you are on beta blockers the less effective they become? Does anyone know about that? I am really scared to have my heart act like it did before and end up once again in Afib. With my thyroid levels being what they are now should I call and let my endo know? I know he wanted to do the RAI but it just wasn’t feasible at this point with me not having insurance.

The only difference that I have physically noticed at this point is that I am getting some strength in my legs back and my energy level is a little better but I really bottom out in the afternoons and have to have a nap most days and I’m to the point of needing to go to bed really early. I have stopped losing weight unfortunately because I could really stand to lose another 40 lbs to be at an ideal weight. The hand tremors seem much better but I am getting ‘eye twitches’ fairly often and can’t seem to read for very long periods now. Any thoughts or help would be greatly appreciated!

[DianneW]

#1075108

Hi Zanymom,

I’d love to answer the questions about your blood tests, but that’s beyond the scope of this board. I’ll try to explain the important numbers though. The TSH is thyroid stimulating hormone, which is a hormone from the pituitary gland that in normal circumstances tells the thyroid either to produce more hormone or to produce less. A typical "normal range" might be something like (0.5-4.5), and someone who is hyperthyroid might have a TSH of something like 0.002 because the hypothalamus-pituitary mechanism has sensed that there’s too much thyroid hormone and has shut down production of TSH. I want to stress that I gave those numbers as examples ONLY. Each lab has its own reference range, and the only meaning "normal" has is within the range of your lab, because scales are different as well as the reference population.

The active thyroid hormone is T3, but T4 circulates in the blood and is stored in body tissues where a molecule of iodine can be removed and it can be turned into T3 as needed. A healthy thyroid produces mostly T4, but also some T3.

When you have Graves’ Disease, thyroid hormone production is no longer driven by TSH, but by TSI, or thyroid stimulating immunoglobulins (antibodies), which attach to both the thyroid and to the pituitary gland, mimicking the action of TSH. These antibodies not only cause production of excess thyroid hormone, but can cause the pituitary gland to stop making TSH even when the patient has been treated and thyroid levels are normal again. Since doctors usually use the TSH reading to tell whether a patient has a proper amount of thyroid hormone, that can make it difficult to tell for patients with Graves’ Disease. For that reason it’s important to know the Free T4 and Free T3 levels.

Free T4 and Free T3 levels are different from Total T4 and Total T3 levels in that they measure the amounts of those hormones in the blood that aren’t bound to proteins. Any amounts that are bound to proteins are essentially inactive in the body.

It’s a good idea to make a habit of asking for copies of your blood tests, and there you will find a "reference range" for each value of the tests your doctor orders. You’ll probably always find a TSH, and either a total or Free T4 and usually T3 also. There are many other possible tests your doctor might order, but these are the most important for you to know to begin with.

Radioactive iodine is a permanent treatment for destroying the thyroid, and once that’s done you will be hypothyroid the rest of your life and dependent on thyroid replacement hormone. Most doctors in the U.S. recommend this treatment, because it’s safe and effective. It’s not the only reasonable choice there is, however. In fact, many people choose to treat with antithyroid drugs (PTU or Methimazole) because it gives them a chance to live the rest of their lives with a functioning thyroid gland. Somewhere around 15-30% of patients (depending on whose numbers they are) will have a permanent remission (defined as no return of the disease when antithyroid drugs are stopped). Others choose to treat long-term with antithyroid drugs even when they don’t have a lasting remission. In many cases the thyroid will gradually become underactive over time due to the effect of other kinds of antibodies that become more numerous.

You asked how long it takes to notice the effects of PTU. It sounds like you are already noticing some effects, and that’s probably typical. By 4-6 weeks most people are beginning to feel noticeably better. What you want to avoid now is becoming hypothyroid, so I hope your doctor will monitor that carefully so that doesn’t happen.

The point I’m trying to make is that you don’t need to feel pressured to have RAI. It’s a choice you have for the future if you’re not happy with your current treatment and if you’re able to afford it. The PTU is a perfectly good treatment, and when you’ve been on it long enough to feel well, and if you’re properly managed, you will have a chance to heal from this disease. Antithyroid drugs have an advantage over some of the other treatments in that they actually help bring down the levels of antibodies that cause Graves’ Disease. Researchers have been working for years to discover the mechanisms behind this because they think antithyroid drugs may be of use in other diseases. They know now that part of the effect is simply from lowering thyroid levels, but there is a separate immunomodulatory effect as well. I know many people around the country who were treated with antithyroid drugs 10-12 years ago and are still doing well. You don’t necessarily ever have to have RAI if you decide in time that you’re doing well enough on PTU.

I want to say also that I’m familiar with Charcot-Marie-Tooth Disease, as it’s a diagnosis that was considered for me. I also have a nasty sensory and motor neuropathy so I know about the pain, cramping and muscle weakness, etc. I have to sleep with my feet out of the bed because they can’t take the pressure of the mattress or covers. Send me an email if you want to talk, and best wishes with the Graves’ treatment decisions!

Dianne W

[TaraPetit]

#1075109

I am really concerned with your lack of medical insurance. I am sorry that you aren’t able to get disability, or disability yet anyway.

Have you tried going to any of the civic (like the Lion’s Club for example) or Church organizations (Kof C or St Vincent Depaul come immediately to my mind) ? They might not be able to help you with paying for ongoing Dr visits, but they might be able to direct you to doctors that will work pro bono, or for a reduced rate and may-be one or more groups would be able to pay for the RAI for you?

Most people have NO IDEA about Graves, so I would make copies of information on what Graves is, and why it is dangerous to remain hyperthyroid and educate them. IMO, and I’m no one really, this would be a life saving project for them.

Gosh, I really wish you the best of luck.

TP

[zanymom4]

#1075110

Thanks so much! I just keep on fighting the fight and hoping for the best! I did get good news that my 2 hospital stays have been forgiven by the company that owns both hospitals. That has been a blessing! Now I just have to work out some sort of payments with the doctors, ambulance service, labs and the others that were brought in as consultants. That is managaeable ” title=”Very Happy” /> Hopefully my disability will go through so that I will be able to qualify for Medicare. Fighting this Graves Disease is a fight in itself not to mention the Charcot-Marie-Tooth disease on top of it. Thanks again everyone for the advice, information and words of encouragement! They mean a lot!

[Author]

Posts