[Ann1960graves]

#1060014

Now Ive been DX’ed as severe Graves. I am lined with paper towels to help with the sweating. Oh, I dont sweat all day, the times I am not a self contained shower I have the chills. My temp is all over the place with a high of 101 degrees. I am shaking like a leaf. I bought 3 dresses today so I could change often.

The doctor said it all relates back to the hyperthyroidism. So she has suggested upping the Methazole to 20gr a day. 10 in the morning and 10 at night.

Tick tock for another 4-6 weeks…really? “My symptoms will tell them if I am improving.” What no tests along the way?

And I am close to being hospitalized. Please wait 3 more weeks…school will be out and I can be in the hospital with my son. My husband is a physician at the Keck medical center in Los Angeles. We will be one happy snuggled hospital family.

Cant wait till I improve…remember “be patient.” Ya, Im sicker than I have ever been, I need to take care of my special needs child, I have a husband that lives at the hospital and no options, and I work. Fortunately I work for myself and can act like I am working.

Question: is it true they have to get the thyroid under control before the can do the pill or surgery?

BTW….I am losing weight and I love it. Ok so I tried to find a positive. I would give anything to feel myself again.

[karenz516]

#1179684

Dear Ann, oh boy do I remember feeling that way just a few months ago. I had all the same symptoms (at first I thought it was menapause, I’m 57), I too enjoyed the weight loss, but the insomnia, sweating, muscle wasting, on and on was too much. I ran to my first endo appointment during my lunch hour, he took one look at me and said I am hospitalizing you, today! My heart rate was 180 bpm and I was in a-fib. I was admitted 12/6/12 and had the RAI on 12/14/12. I love my endo, he had my blood drawn every morning at 4:00 AM and was at the hospital at 6:00 AM, seven days a week, he answered all of my questions and my families questions. My endo kept me in the hospital for 3 days after my RAI for the thyroid dump. When I finally went home it took a good two months of ups and downs before thing began to turn around and this April I went hypo and began Synthroid. My endo said my liver enzymes were slightly elevated (probably from the statin meds for cholesterol) and he would not give me the anti-thyroid meds prior to RAI. He did put me on a steroid and the cardiologist had me on Lopressor and Digoxcin to bring my heart rate down. I still have days that I do not feel well, but at least now I can go up and down the stairs, I can sleep and I am not sticking my head in the freezer!

Karen

[Ann1960graves]

#1179685

That endo sounds like my husband. If I get a phone call back from the endo Im in shock.

My husband is looking at my results tonight, well that is if they send them to him. Unfortunately USC doesn’t really have their act together. If you go in as an outpatient the hospital has no access to records. So If the good doctor decides to postpone her date night for a moment and gets those results over to my husband he may pull me into the hospital tonight for more tests if he thinks more should be done.

Yes, I am really lucky to have medial access like this. I feel so sorry for others out there that don’t have someone in the medical field to lean on. Although, lol, if my husband doesn’t get me fixed his beautiful dinners are a goner. Picking up the socks and underwear…done! The primary holder together’er will be a thing of the past!

[karenz516]

#1179686

Ann, the reason I love my endo is that he is all business. One morning they were taking my blood at 5:30 AM and he came in and said “my orders are for 4:00 AM not 5:30 AM”, he wasn’t mean to the IV therapy girl but definitely firm! Maybe if your husband has you admitted to the hospital they can get the ball rolling already. How is your heart rate?

[Boomer]

#1179687

Howdy Ann! A message so nice you posted it twice!

It was just about three weeks ago I felt just like you do. I wanted thngs fixed and to feel better NOW. Unfortunately that’s just not the case.

As it was explained to me I need to have my levels low, maybe even slightly hypo, because I have to stop meds for 5-7 prior to RAI and they will begin to rise (go hyper) in that time. My Endo also told me that once the RAI begins to shut down the Thyroid it will go hyper again as a last dying gasp. Therefore levels MUST be under control beforehand.

My case is deemed ‘severe” as well. My timeline is as follows after 2.5 weeks on meds: We raised my MMI dose from 10mg every eight hours to 20mg. every eight hours. Blood work in ten days, adjust meds as needed, with a projected date of August 6 office visit, do RAI uptake test that week, and take RAI 5-7 days later.

I’m sorry you’re disappointed in your Endo’s communication. If you have concerns regarding your treatment talk to your Endo. Remember- they work for US!

Anyhow… Hang in there and be patient (as IF you have a choice right?). I began to feel a bit better within a week of starting meds and although I have a bad day here and there I feel significantly better already after about three weeks.

Stay strong and keep us posted along the way- no sense enjoying all this good stuff on your own!

Peace and health to you and yours,

Boomer

[Naisly]

#1179688

Quote:

karenz516
My endo said my liver enzymes were slightly elevated (probably from the statin meds for cholesterol) and he would not give me the anti-thyroid meds prior to RAI.

It is very normal for anyone with GD to have elevated liver enzymes before any type of treatment. It is part of the disease.

Boomer
Your saying that your taking 60mg of MMI every eight hours? I also had severe GD and now close to remission 8months later. My GD was so bad I had to take 240mg of propranolol and my TF4 was 54.

Ann1960graves
It takes about 2-4 weeks for the TF4 stores to leave. And during this time you will begin to feel better. But this is why it is important you get labs run if your symptoms start to change and why I don’t understand your doctor checking again in 4-6weeks because A LOT can happen within that time.

I went severely hypo with 3weeks and still climbing out of that hypo-hell.
I went from:
Oct.3/12
TSH 0.09
TF4 7.6
TF3 2.4

To

Oct.25/12
TSH 73.8
TF4 <5.0
TF3 <1.69

I would also talk to your doctor about taking your MMI 3x a day instead of twice. The manufacture suggests 2-3x. This is because MMI has a fairly short life. Some people really feel the yo-yo effect of hypo/hyper during the day if they are on it 1-2x a day.

Please do read the post I made – A few things to help you feel better.

I also have a 2 sons who have ASD. My youngest is 17 and it’s hard enough he is a teen lol. He is also graduating this month, and bound and determined to move out this summer. I also run a retail store and just recently opened a manufacturing business. So I hear ya!

[Boomer]

#1179689

@ Naisly

Typo on the MMI dose! I corrected my post for accuracy- thanks for catching that.

I was taking 10mg every eight hours and am now taking 20mg every eight hours making a total of 60mg per day.

Health and peace to all,

Boomer

[Naisly]

#1179690

Boomer
Well I am glad it is not that much! But even still, 60mg a day is a HUGE amount to be taking. Please please, watch your symptoms. The recommended dose was lowered a couple years back from 30mg to 20mg because of too many adverse affects. As well as being very hard on the liver. Also please make sure your doctor is dosing according to your TF4 and TF3’s, not the TSH only.

That is the mistake my doctor made and seems to be all too common.
When my doctor made that mistake, my levels were TSH 0.09 TF4 7.6 TF3 2.4. He kept me on 30mg because my TSH was still 0.09 even though my TF’s showed I was HYPo, hence why I jumped so fast as I showed in my previous post.

At that point he should have lowered my dose quite a bit to stop me from falling any farther. I would really hate for this to happen to you. It is very very painful and I could barely get out of bed let alone walk up the stairs.

The best thing anyone can do is to get hard copies of your labs and learn how to read them yourself so you can discuss it fully with your doctor. Then and only then can you understand what he/she is talking about.

Edit: Sorry I have to stress this point. Please don’t assume your doctor is looking at all your levels, ask him straight out. It was only a couple years ago that doctors became aware that treating GD with only TSH was wrong. So quite a few doctors don’t know this yet, even endo’s.

[Kimberly]

#1179691

Ann1960graves wrote:

Question: is it true they have to get the thyroid under control before the can do the pill or surgery?

Sorry for the bad day. The preference before doing *any* surgery is to get thyroid hormone levels stabilized in order to reduce the risk of thyroid storm. If that isn’t possible, there are additional steps (such as administration of beta blockers and potassium iodide) that can be taken if needed to reduce this risk. RAI can also be done if needed while hyper, but the latest recommendations are to use beta blockers and methimazole both before and after RAI if patients have very high Free T4 levels.

Hope you can see some relief soon!

[allie]

#1179692

Sorry you are having a rough day Ann…sending good thoughts and prayers your way!

[Stymie]

#1179693

Hi ann

Hope you’re having a better day today.

Big hugs

Diane

[Author]

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