[Ski]

#1073589

Sorry, there’s no way to know "how sick you are" based on test results. Some people have levels off the charts, but they feel relatively well. Others have levels just a little bit out of range, but they feel awful. It has more to do with your symptoms than your levels. There is no "one-size-fits-all" for Graves’ patients, which is part of the problem in figuring out what to do.

In addition to that, one treatment isn’t better than another for "severe cases." All three treatments are available to all patients, and all are capable of bringing you safely back to health.

The MOST important consideration for treatment is what makes YOU comfortable.

Typically we suggest that beginning with ATDs is helpful because you are not choosing a permanent solution, you can bring your levels down into the normal range fairly quickly, and that can help you regain your composure so that you can carefully examine your options. It’s also good to see how you react to the ATDs ~ that helps you see whether you think they’ll be a good option going forward.

Write down ALL of your questions, and try to make sure you’ve got them all answered before you leave the doctor’s office. That helps a LOT. Let us know how your appointment goes tomorrow!

[BrendaK]

#1073590

I was diagnosed with Graves October 31. In seven months I went from 176 pounds to 112 pounds! Weight loss was the only clue. My energy level was off the charts and I felt good. Had an RAI six weeks ago – no problems. Met with the Endo on Monday, test results are: ALT (SGPT) 30, T4, FREE 1.8, both within range. TSH <0.04, out of range. Endo thinks it will take another five weeks for my thyroid to stop producing. I’ve gained 7 pounds and feel good! Just being diagnosed with Graves made me a little depressed, with the eye problems and all but I did the smart thing like you. I got on here and read everything written.
From what I have read, Graves is unique to each individual.
My Endo said he wishes all his patients had my attitude,
Happy thoughts help!

[judy]

#1073591

TSH (uIU/mL) 0.2-5.5 sept 2008
TSH (uIU/mL) 0.8 3.1 feb 2009

This is what I get in the mail nobody ever calls am I suppose to do something?

[VEGASGAL]

#1019711

I recently was diagnosed with Graves, after losing weight down to 99 pounds for my 5" 6" small frame. My blood tests were TSH .014, T4 19.4, T3 is 43, Free Thyroxine Index is 8.3, my Thyroid uptake after 6 hours was 54.1%, and my 24 Update was 55%. I am seeing the Endo tomorrow for the first time and I am on beta blockers prescribed by the internist who diagnosed me. On a scale 1 to 10 how bad is my Graves. I know levels are high, but how bad are they? I need some help with this so I know what course of treatment I should pursue. If I am mid range then I may opt for anti-thyroid medicine to give it a shot, but if these levels are on the 10 scale, I may have to go to radiation. Let me know what you think.

[hannahrose123]

#1073592

You didn’t put your lab ranges so its hard to tell what your levels are really at.

But other than that I agree everyone is different and should pick what treatment is best for them. But honestly I would try medication before RAI..i had to get the RAI done because I was 10 when I was diagnosed and allergic to both medications they put me on. After getting RAI you will become hypo and will most likely be put on synthroid like I was. And it just sucks…i went from 100 to 150 pounds in a few years and the symptoms of being hypothryroid are horrible. I was able to get the weight back off but it takes a lot of work. And its difficult to find a doctor who listens to you and your symptoms and knows how to optimize your medication to fit you.

[Ski]

#1073593

Judy:

The best person to answer your questions about lab tests is your doctor. Believe me, they will NOT take the initiative. If you are wondering what to do about your lab results, or what they mean, you need to get on the phone and get in touch with them. I think most endo offices operate on the "squeaky wheel" theory ~ if you aren’t bugging them, you must be fine. If you feel fine, and the lab results fall within the normal range (your test results should also include a range of normal, which is different for various lab methods), then probably you don’t need to do anything. If you notice the levels dropping or rising over time, even if they are still within the normal range, you should probably get in touch with the doctor’s office to alert them. They do NOT care as much about our status as we do (they can’t afford the energy, with the hundreds of patients they likely see on a regular basis). When our disease is active, and new, they may be able to keep track to some degree, but after a while, with longer time periods between visits, they lose that familiarity with our case.

[VEGASGAL]

#1073594

Thanks Ski, very sound advice. Off to the Drs. in a little while. I will let you know how it turns out.

[VEGASGAL]

#1073595

Well back from the Doctor’s on Friday. He said I wasn’t a candiate for long term medication and I needed RAI due to my levels being 4 times too high. I didn’t really care for this doctor. He was 5 patients deep in the waiting room and gave me about 10 minutes if that. He said my thyroid was swollen twice the size it is supposed to be. He did put me on anti-thyroid medicine for a month to get my levels down before RAI in 4 weeks. I of course and going to a different doctor to get a second opinion on 3/3/09. He did say that long term use of anti-thyroid medicine longer than 18 months was dangerous and not enough studies have been done. Anyone ever heard this before? Got any advice on treatment?

[phillyfan]

#1073596

i am looking forward to the reply to your last post–it sounds exactly like what i am going through! i was diagnosed in january, and have been on ATD and beta blockers since then. i am scheduled for RAI this thurs 2/26. i am very, very nervous about the permanence of it, and especially about getting stabilized and gaining weight. i lost nothing, but had lots of cardiac symptoms. my big complication is asthma, which has gotten much worse since starting the beta blockers. my pulmonologist wants me off of them, which is why i’m not waiting to see if the ATDs can work. i can’t be on the beta blockers for all that time while i try to get in remission. i really like my endo, she is very patient, responsive and kind. she seems to be pro RAI, but is not opposed to long term ATDS. she said my levels were also 4x normal, and thinks that eventually i would need RAI at some point. looking forward to seeing more posts.

[LaurelM]

#1073597

Hi Vegasgal & Phillyfan,

I read some recent posts where the facilitators talked about a recent study out of Europe that looked at long term use of ATDs (10+ years) which found them safe and effective. I am sure they could give you more information.

Also, regarding the betablockers, I too am an asmatic (now mild but terrible in childhood). I was started on propranolol when diagnosed and methimazole. I was able to taper off the betablocker after only a short while and then continued on ATDs for 18 months. I have been in remission since about 2/06 (stopped ATDs at that time).

Have you asked your endo how long you could expect to be on betablockers? It sounds like the answer to that question might influence your treatment decision.

Take care,

Laurel

[Ski]

#1073598

You should only need beta blockers until your levels get into the normal range, which would be MUCH sooner than the 2 years required to see if you’re in remission.

I just posted about long term use of ATDs ~ not a preference in the U.S., it has been the preference in Europe and Japan. The numbers are beginning to equalize across the two regions (meaning there is more long-term ATD use now in the U.S., and higher numbers of RAI and surgery in Europe & Japan), but the fact is that long term use of ATDs is not generally, for every patient, a dangerous thing. Check the last post I responded to as well, I put in some more information there.

In addition to that, neither of you are looking at "long term" yet, you’re just aiming to reduce your thyroid hormone levels and manage them for a period of time. That’s the best possible vantage point to decide upon treatment, because you will know exactly how you feel on ATDs, you’ll have some idea of the reactions your body is having to them, and you can also see how easy your levels are to manage. On top of THAT, your levels will be normal, which will bring you back to yourself and give you the opportunity to evaluate everything with less emotion. The fact that your levels are 4x normal should not define your treatment (except I’ve heard that surgery can be dangerous while your levels are that high). Odd that the doctor sees ATDs as a good way to bring your levels down prior to RAI, but no longer than that. Hmm.

[partygirl1]

#1073599

For starts, Is anyone having trouble logging on? I have to try two or three times before I’m logged in. Maybe it has something to do with the construction the site is under.

Congratulations on your remission and hopefully goodbye to GD for you. That’s great news and the kind of testimony I want to read more often.

Has anyone had to take a leave from work in the intial stages? Cause I’m feeling bummed.

[DianneW]

#1073600

Many people do take some time off work until they feel better, while others don’t. It depends on the job you have and how sick you’re feeling, and whether you can afford to take the time off. Doing so is certainly justified, and your doctor should approve it.

This bulletin board isn’t under construction—the Foundation website is, but it’s a separate entity. I’m not sure why you’d have to try several times before logging on. Perhaps there’s heavy usage in your part of the country or on your ISP? Is anyone else having trouble?

[Author]

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