Hello! Looking for anyone out there who may have been diagnosed with Graves disease and had their thyroid removed putting them into hypothyroidism. Also, anyone who has sleep apnea that has caused a big weight gain. With the two combinations it is very hard to lose weight. I am struggling to find information that will help on the two, but so far not alot of luck. I have had Graves disease (beats me why they still label me as having that with no thyroid) 5 years and have run across a few people that have the same trouble. Cannot get a handle on weight. I take synthetic thyroid medicine, plus high blood pressure medicine and with the sleep apnea feel I am fighting a loosing battle. So if anyone can help, please feel free to e-mail at [email protected] or post here.

Believe me, at this point any help will be greatly appreciated.

Pam

Hi there Spam. While I dont have Grave's disease, I do have hypothyroidism, so I can understand what you're dealing with on that front. I take medication for it too (are you on synthroid?) and I've found that it helps me alot, with having more energy. Im afraid I dont really have much advice, but I wanted you to know that you arent alone

Hi Krispy:

Thanks for taking the time to say hello. Yes, I take synthroid, but they keep changing it trying to get it right. This one (.3) seems to be doing better. If they would leave it at that. But the doctors can't seem to get my dose right. The first doctor (after thyroid radiation) didn't put me on medicine. I finally went to another doctor after months and she said the first doctor could have killed me that way because of the thyroid storming I had been going through then my tsh level went down to nearly nothing. So it has been up and down the last 4-1/2 yrs.

With your hypothyroidism do you do anything special diet wise? Like are there certain foods we should not be eating? I am finding out that with no thyroid I should have very, very little salt, no msg, etc. Any pointers you have found would be greatly appreciated.

Again, thank you so much for writing.

Pam

I have had Grave's Disease since the summer of 1991.It is an auto-immune disease that causes your own body to attack itself (the thyroid gland).Think of it like diabetes,it can be controlled(in your case with RAI)but there is no cure.It can go into remission w/o drugs (happened to me twice)Two years ago I had RAI that went south,landed me in the ICU with a TSH of 98 (this at a world renowned hospital,no less!) It took until this spring to get my TSH to normal range.
Although the average wt. gain with Graves is 20 lbs.I gained 80 this led to depression, high blood pressure (currently on 2 meds for BP) and general all round misery and craziness in my life.
If this post hasn't sent you running for the hills, here is the good news I have lost 31 lbs. in the last three months.Graves patients have a slightly increased risk of developing diabetes,so I chose the diabetic diet with carb counting and saw a RD today to fine tune the diet.Although I am very unfit I force myself to walk every day for 75 minutes.I go at a snail's pace and stop to rest sometimes. I anticipate devoting less time daily as I become more fit and walk faster but accept it will always be something I must do the rest of my life.

Finally someone who understands what I am going through. I have had so many ups and down with this. I gained alot of weight plus the sleep apnea made me gain even more. The first time I went to the doctor about the sleep apnea he asked if I had noticed any significant weight gain. I almost laughed in his face. With the two I am really struggling. When I was first diagnosed with Graves Disease the oncologist I went to said I was "thyroid storming" which meant that it had already begun to shut down my major organs, heart, liver, kidneys and lungs. He said if I had waited any longer I would have gone into cardiac arrest. I am glad it was found and that most of the problems were taken care of, but like you, it is hard going. I hate to hear to your tsh was at 98. You must have really been out of it. Do you take synthroid? They just changed mine again. They can't seem to get my level correct. I've heard that the lucky ones who they are able to get the level right the first try really make good progress. I keep hoping. So you are following the diabetics diet. Have you found certain foods that seems to make the Graves disease worse? I have found that msg is really bad. And since it destroys your body's own natural autoimmune system that my joints are weal and overall strength is next to nill. Keep me posted on your success and if you hear of any good tips for this. If you know of a good site to go check out please let me know. I have been searching, but not many people deal with the Graves disease aspect of thyroid problems. My home e-mail is [email protected] if you would like to correspond.

Pam

Synthroid can be causing some of your problems. If you go to the www.thyroid.about.com site you can get a lot of info. It was never approved and now they are having to get approval. One of the problems is it is not stable and the dosage varies. My docotor switched me to Levoxyl and I'm doing much better.

I keep the carbs low and my fat about 25% for daily calories. I eat a little more protein. Use soy sparingly...it can inhibit your thyroid meds.

I am currently on .162 Synthroid,I had been on .175 but the dose is weight related and as I continue to lose,possibly my dose will be adjusted downward.I can relate to the aches and pains.At my worst I could not walk down stairs,my legs would shake uncontrollably.
At this point,I am still having my TSH,free T3 and Free T4 tested every couple of months.You need to have a bone density test done.It would be good to know FBS and 2hr.PP blood sugar levels,especially if you are on a beta blocker and/or diuretic
An Endo Doc can order blood/urine tests that can rule out other causes of your high blood pressure,cortisol, rennin and cushing's.
This sounds like a full time job but It can become routine.As you start to lose weight you will feel better and the past ups and downs will seem like a vaguely recalled nightmare.
There is a lot of misinformation on the net,be cautious.There are some Grave's Support groups around the country,they usually meet monthly.I believe The National Grave's Disease Foundation is in Boston and you might try the orphan diseases website to check for links
As for diet,I know of no foods one should specifically avoid.You must find a source of daily calcium,milk,sardines,herring and salmon canned w/bones are good sources.Finding fruit that you enjoy can help cut back on other less nutrious sweets.You may be able to find an RD familiar with Grave's if you live near a big city or a University Hospital Center.sometimes they practice in a group with Endo Docs I am 100 miles from the nearest one and since I am on the verge of developing secondary diabetes,seeing the RD yesterday was very helpful to personalize a meal plan and actually I do not think there would be much difference in diet between Grave's and Diabetes.I hope any or all of this info can help you.

Quilter brings out some good points.Best she describes the diabetic diet in one sentence.I forgot about the soy warning and have never researched its' veracity as I seldom eat it.I have researched that whole synthroid controversy and it seems more a gov./redtape SNAFU than with the drugs effiacy. synthroid and levoxyl are trade names for the same exact drug,levothyroxine.However each company uses different fillers and additives,which may make a difference to you.If you do switch,you will intially need your blood monitored more often,probably why some HMO and even Docs are loathe to try this simple step,because of the extra costs involved.
It is a very remote possibility that the brand you are using is causing your problems.My GP is fond of telling me that over his many years of practice he has had only one other patient that was so hard to regulate.Except for the fact that I am in NY and you are in Texas,I thought it could be you.

Thanks for all the input. My last tsh level was low so they raised my dosage. My doctor thinks my high blood pressure was due to the sleep apnea and I go back in the next two weeks to have it checked. If it is still in the 110/65 range she is going to reduce the blood pressure meds. I know some of them cause weight gain and tiredness. I have been thinking about going to an endo but have not found one close by. I will probably have to go to Dallas for one. That's the bad part of being in a small town, they just don't deal with a lot of this or have groups to help you. I will add more calcium to my diet and I don't do soy so that won't be a problem. I like sardine's so that will give me an excuse to have them in the house. I like all types of fish and love milk. (Milk is one of downfalls). Plus it would not hurt to have a bone denisty test as suggested since I had a hysterectomy when I was 29. Also, I noticed several times mention of diabetes and I know I have to be careful on that score as it runs in my family big time. When I went to the doc in June my blood sugar test 113, last year it was 116 so that was good.

I was once on the levoxyl and I actually did better on it, but my doctor said synthroid was the best and she didn't believe I felt better on the levoxyl. But I did and even started to lose weight.
The Grave's disease caused alot of depression and anxiety and she also put me on Prozac which I have heard can make you gain weight. Vicious cycle all this.

I am going to check out some of the sites mentioned and I want to thank all of you for the input. It helps to have others out there who understands what I am going through.

Pam

I was diagnosed with Graves Disease in 1993, I had the RAI done that same year and like someone who posted my doctor never put me on meds. I was tired all the time and gained a massive amount of weight. I went from eating like a fiend and losing weight, I lost 30 pounds, had night sweats,rapid heart beat, anxiety attacks, to haveing the thyroid killed, eating almost nothing and packing on the weight. My highest weight was 211 pounds and I sank into deep depression. I am on levothyroxine and they just changed my level to .15. There is a way to lose weight with this condition. I too followed a plan that was for diabetics and I had success. I have found (in my experience) that a higher protein diet and exercise ( I do Taebo and use toning bands w Richard Simmons) I feel better. I am now 155 and I have mantained that for almost three years. I would love to lose more weight...so I am looking into Body For Life program which stresses equal amounts of protein and carbs with exercise. I think that I am more sensitive to carbs than other people so I am hoping that this plan works for me. I am glad that I am not the only one who has gone through this, sometimes I feel like I am the only one. I have to workout twice as hard as other people to get results, but you can lose weight. I will check out the sites that were posted ..I can use all the info that I can get on this condition.

T wish everyone success!!!

God Bless

Iggy

Iggy:

Thanks for the information and hope at the end of this tunnell. I have talked to a few people who it seems has struggled for several years to lose their weight. I have been trying on and off since about 1999 since it started getting worse around that time. So, let me see if I have this straight, with the diabetic diet and excercise you were finally able to lose the weight? And you do Taebo along with Richard simmons. I just bought some Richard Simmons tapes and am hoping they will help. I can lose a few pounds and then its right back. I am at my highest 286 (was at 297 on July) and pretty well stay there. I think I can look at food now and gain weight. I tried slim fast and sugar busters and still gained weight and I did it by the book.

If you have more info and things that you did would you please share them. I would really appreciate it.

Thanks so much!

Pam

Hi I am so happy you posted.Walking and the diabetic diet are still working for me,the portions are small and you might be hungry at first but you adjust.Another idea might be Dean Ornish heart diet,it is way strict and you might lose faster.It is safe and healthy(probably why it didn't sell a gadzillion copies lol)You could find his book at the library.Mabye I will alternate between programs.
Just because you have graves'doesn't mean there couldn't be something else impeding your wt. loss a GOOD endo doc could help sort it out.
I recently found out that Gail Devers testified before congress due to her drs. misdiagnosis of graves' which almost killed her.There was a movie about her a few years back and she was gaining wt while training for the olympics and the morons thought she was trying to hide being pregnant,her husband even left her.I was not diagnosed for 4 years.It would take a book to tell you how many specialists I saw.One moron told me I had a rare blood disease that was going to kill me.After being told for the umpteenth time I was crazy,I went to a shrink after the first visit he said you are not crazy you have graves' and ordered the simple blood tests that ended my misery.I actually saw him for a few months to work out my anger at the medical profession.It helped me get over it.
Again be careful with any info on those .com sites,that ngdf.org.may be able to put you into contact with people that can help.Also take some action now do something different whether it is to go for a walk or try a new diet. I wish you well.
Peggy or mabye you better call me chatty cathy

A guy at work once told me that if talking burned calories that I would be so skinny I would be invisible lol PS Did anyone out there actually lose the last 20 lbs? I know former first lady barbara bush lost 20 and gained it back after RAI Gail Devers looks like her old self bush 41 looks like he put on a few lbs.What about that girl from the old murphy brown show? jane robelet from cbs news?since school starts monday our assignment for the week name all the celebs with graves'

Hi Peggy (chatty Cathy):

That is too funny!

The Graves Disease started the windfall I received in the weight dept., then last year I was diagnosed with the sleep apnea. The pulmonary specialist and my internest both said with sleep apnea you gain a ton of weight and with no thyroid I got the double whammy! But, I know (if my new synthroid is correct this time) with the correct dosage of Synthroid and getting the sleep apnea under control that (according to the doc's) I should be able to lose some weight. Now when that is suppose to start I don't know. I have been eating a lot of fruit and vegetables lately and trying to stay away from soda's, pizza, chicken (all the things I love of course). I bought some Richard Simmons tapes that I am going to start working with and an AB Doer II. Hopefully, something in the above combo will work.

I think I will look into the diabetic diet. I should be able to find plenty on that since my mother, her 4 sisters and their mother all have diabetes. I was surprised when I went for my physical in June that my blood sugar was 113. I figured it would have been high with my weight and all.

Thanks again for the tips. By the way, did you lose your weight after the graves disease? And have you been able to find Gail Devers book? I saw the movie and thought it was good, but I have tried to find the book and have been unable to.

Oh and I am a very chatty person also. Guess that's why at least my lips are thin.

Have a good night!

Pam

Pam you have lost some weight,so you know you can do it.It will be harder for us but don't compare yourself to others without these med problems.they are civilians and we are the Graves' Warriors.My son is an Ironman,so we were at lake placid again this summer,and I ran into one of his young friends(30's)and even though she is an Ironman.her Graves' went wacky and her BP was so high they were afraid of a stroke and she had to be in the hospital last fall.Last night DH came home and told me one of his sec.has gotten really skinny and was acting like me when I first got Graves',she has been seeing a local GP,who is not sure what it is ,may be glands,DH gave her the name of the Endo Doc and told her not to fool around too long in (we are in a small town also.)
How did they figure out the sleep apnea,'cause at the Docs yesterday,even though I am down another 5 lbs.My BP was WAY UP and he increased one of my meds.What do you do for it anyway,I am clueless.I would think your doc is pretty sharp,as 90% of HIGH BP is of unknown origin,many docs don't look for secondary causes and just give you meds.Have a nice day. Peggy