[npatterson]

#1071254

Dear Pam,

It looks like you have a bunch of things that you and the doctor need to sort out. That said, the things that I can comment on are that you are correcvt that you will need new testing done. I will assume that the uptake scan was done when you were originally diagnosed?

The Standards of Practice (AACE) iindicate that the appropriate tests for a Graves’ patient include (but not limited to) TSH, Free T3 and Free T4. I don’t think your doctor will be insulted if you ask her what the difference in these is from the T3 and T4 you have had in the past. You probably know already that we don’t interprete tests.

The muscle wasting in Graves’ occurs when one is very hyper, (read: untreated or undertreated). That may not have anything to do with your current night time leg spasms. I would have suggested diet–taking a look at calcium and potassium–what do you do during the day? If you are sweating a lot, you may be depleting these. Bannanas, and orange juice are good for that.

When you talk to your doctor, let her know what, and how much, you are taking as supplements, so you can both understand how they interact with your prescribed medications.

I am sure you will hear from others. Best wishes for your appointment next week.

[Pam]

#1019374

Hi,

Just joined this board. BTW, I’m on several boards connected with Graves. The reason why I joined this one is because something new has come up to add to my thyroid problems, and I feel that this is the board I should direct my questions to.

I was diagnosed with Graves in Nov., 2006. (It runs on my father’s side of my family) I have been through several doctors, none of whom is an endo (Very few in my area). Recently, the palpitations started again, and I was directed to a heart specialist that has just joined the clinic I go to. I explained to him that I haven’t had palpitations in over a year, and I was worried. He looked through my file, and commented that he didn’t think I had Graves, and that he thought I had Thyroiditis, because the RAIU showed very little iodine uptake. ” title=”Confused” /> He said that he didn’t want to over-step, and any questions should be directed to my other doctor (Internal medicine). He put me back on beta blockers.

I have my next appt. with her on Tuesday, and I am at a loss, wondering what I am going to say … Obviously, some new tests need to be done, which will confirm – Thyroiditis or Graves. She has been a very good friend to me, and the best doctor (believe it or not!) that I have ever had. I don’t want to insult her intelligence or anything. What are the definitive tests?

My last labs:
TSH – .065
T4 – 9.1
T3 Uptake – 33
Thyroglobulin, Quantitative – 282.0
Antithyroglobulin Ab Siemans ICMA Methodology – < 20

I have been euthyroid for several months. I take PTU (50 mg. 2x daily), Lisinopril, and Metoprolol (25mg.)

Also, I have on again, off again leg spams (left leg only) that wake me up in the middle of the night. Sometimes, they are so bad that I think I am going to pass out from the pain. Sometimes, they are just bad – but tolerable. I have tried all of the pills – Lyrica, Soma, etc. Nothing helped until I began taking more vitamins, minerals, and supplements. It still happens, but not nearly as much as before. Is this due to the "muscle wasting" associated with Graves?

I am so upset. Just when I thought everything was getting better, the palpitations return, the leg spasms return, and I don’t even know for sure what is wrong with my thyroid!

Any input, any help would be so welcomed …

Pam

[Pam]

#1071255

Hi, Nancy,

Yes, I had the Uptake shortly after being diagnosed with Graves. Later, they scanned (Ultra Sound) my thyroid, and found it had no nodules, it was just swollen.

After reading about "The Calcium Myth" (about all of the problems excessive calcium does to the body), I dropped my dosage of calcium to 630 mg. I am post-menopausal, BTW. I take 400 mg of potassium every day, along with 4000 mg of vit D (I am deficient), 3000 mg vit C, etc. The only thing that I do "forget" to take is the calcium sometimes. I am very worried about taking too much. Other than that, I try my best to see that I am getting everything that my body needs.

No, I don’t usually sweat much anymore. I cannot handle heat.

About an hour ago, my leg started to spasm. I had been lying down, watching TV, and I got up to go to the kitchen. I just couldn’t believe it … I don’t understand what is happening. The palpitations and the spasms are just freaking me out. This all just started. Today, I have begun thinking about surgery, something that was out of the question, until now. My sister recently talked to a surgeon that does lots of thyroidectomies, and he told her that he follows a procedure that goes around the parathyroids, and leaves them intact. Sounds good to me. I just worry about the weight gain, and all the other problems that go along with Hypothyroidism. I just didn’t want to trade Hyper for Hypo.

Thanks for your help,
Pam

[cathycnm]

#1071256

Pam – One thing to remember is that if you do need to proceed with having your thyroid removed or radiated, you will not be hypo for very long. Once you are normal thyroid (with replacement) then weight gain is more about diet and exercise than anything. I have not gained any weight since RAI – in fact, I believe I have lost a couple of pounds. It is very individual and does not need to be permanent.

As far as calcuim and too much – I am not sure what information you are referring to. We know that more than 3 grams a day is probably too much. Depending on your age – less than 1,000 to 1,500 is too little. Osteoporosis is epidemic in our country (partially due to increased use of sun screen). It is good you are on the vitamen D. The national osteoporisis foundation has info on their website about recommendations for each. The latest research on vit C is not very promicing and it may even increase risk of some diseases – so you may want to check to see if you want to be taking that much.

Other than calcium, warm baths might be of help.

I am sure it is frightening (when I have palpitations I always have that question flash through my head about = what if my heart stops!)- and it sounds like you are doing the right thing to see your doctors. It is also good you have a positive relationship with your doctor. You have lots of positives going for you. Keep us posted.

[mamabear]

#1071257

Hello and welcome.

I have a question..why hasn’t your dr. put you back on PTU since it worked the first time? How long were you on the medicine for before he took you off? You said you were Euthyroid for a few months, so did he have you on meds then take you off and you were ok off them up until now?

I ask because sometimes going back on the medicine for a period of time will give you what you want and then going off of it will work again. Please dont let the dr’s give up trying PTU again, sometimes they see that you come out of euthyroid and say oh well lets try RAI or surgery.

I did PTU a few times and was fine and now am currently in remission for almost 2 years now. The difference with me was that I didnt have to take PTU for long periods of time. It was short courses.

Just wanted to note about Lyrica…This is my opinion only and has nothing to do with this site or anything. I know someone who used it and watched her become a zombie on it. She was depressed and the idiot dr. thought well lets just suppress her feelings so she doesn’t have any emotion at all rather than deal with her depression. Well finally she realized that I was right when she didn’t have anymore of it and had to wait to get more and she was a completely different person once off the meds. NOW she is dealing with the depression and why she had it. I dont say this word very often but I HATE Lyrica. It is a temporary bandaid for a condition and that to me is just wrong. I don’t mean to sound like I am an overbearing pain in the butt kinda person but….ummmmmm wait a minute..what am I talking about? I am an overbearing pain in the butt person so yeah I hate the stuff and wanted to let you know what it did to her. I am sure it is a good drug for some things but I didn’t like her on it, not one bit.

I would seriously get tested again asap.
Start the PTU again, tell your general dr. that you are having hte same feelings you did before and want to start right away. Since you all ready have had to deal with this before you know that this is your thyroid and shouldn’t have to wait for the tests to come back to get your prescription from the dr. Make sure he gives that to you BEFORE you leave the office. Don’t let him tell you you should wait till you get the tests done THEN have to go back to his office just for that.

I would get to an Endocrinologist if you can. But you can have your general dr. prescribe the PTU first while you wait for an appt. wiht an endo. You said there aren’t many around so it might take some time and the longer you wait the worse you might get. Make sure he prescribes the rest of the meds as well, if you need them.(the ones for your heart and such)

Keep us posted.

[Author]

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