Dieting with Obstacles - Diagnosed with Graves disease (hyperthyroidism)




Steelslady
03-02-2009, 01:45 AM
A couple of weeks ago, I was rushed to the hospital with racing heart and feeling off emotionally. I was told my thyroid numbers were all over the place. Several days later, it was confirmed that I have Grave's disease. Now, they also think I am going through the change as well.

I am going crazy. I cannot stop eating, and the funny thing is, I am not gaining weight. I also have hemorrhoids to boot. Emotionally I don't feel right, either. I am told that this will all start to go away when either A. the endocrinologist figures out how much medicine I need and my levels are correct, or B. they decide to take my thyroid out and put me on Synthroid for the rest of my life.

My question to anyone that has been through this is- does this really settle down? Can you still lose weight with the medication?

Family members tried to "correct" me, if you will, saying I must have heard wrong and have hypothyroidism. They can not believe that I have the hyper kind because "only skinny people get hyperthyroidism". Lucky me to be the first person that they know to have it while being fat. :(

Any help or advice would be appreciated. Thanks.


chrissyriss
05-09-2009, 10:53 PM
hi I just read this so thought i would reply. I have graves, i was dx'd 4 years ago, we were shocked as well since i have always had a weight issue. i have never been skinny. i have been on the med, mmi for short, since then. I have gained some weight because the med slows down the thyroid. if you can avoid it ,dont destroy your thyroid. the med IS safe for as long as you need to take it. I am on a very small dose now. just wanted to share that you are not the only one fat and hyper, lol,,,

Dria
05-10-2009, 12:52 PM
I also have Graves. I am currently in remission though which is good because I was on the meds for a years time.
Some of the medication they give you for graves is not a safe long term solution. The meds I was on are not very safe after a years worth of use. Starts harming the other main organs. Lungs Heart Liver Kidneys etc.
Once they found the right combonation of drugs for me I started feeling better, but even with that said you really have to watch yourself. Thyroid Storm is fatal if not recognized right away.
Im not trying to scare you!!! But information is your best defense.
WHen on my drugs I gained 10lbs over a year and noticed even with trying to diet I wouldnt shed an ounce. I am off the pills for now and if my levels go back.. only 25% stay in remission....... They will look at removing my thyroid. I am not a good Candidate for the RAI because I have T.E.D
The Thyroid Eye Disease. Which if you have that... and then have the RAI can really speed up progress of the TED.
Arm yourself with knowledge. Get yourself a good endocrinologist and listen to their advice.
Good Luck and try to stay relaxed Stress is graves worst enemy!!!!


Dria
05-14-2009, 12:52 PM
I just wanted to also mention that if you are on facebook....... there is a very awesome group on there with LOTS of information. Including weight loss issues how others have done it..... rai total removal. on and on........ Group is called Graves' Disease

Steelslady
05-29-2009, 11:36 PM
Thank you so much, the both of you! I waited for days, even a few weeks, hoping someone would reply to this or help me with it. I can't even find a Grave's disease support group around here.

I've gained 30 pounds back now, since the medication was re-adjusted. He just lowered it as my levels came down very nicely, he said. My options for now are to stay on the medication for another year, then try to go without it again, or the radiation.

I chose the meds for now, but I have to tell you, I did try (with doctor's encouragement to try) to stop using the beta blockers unless absolutely necessary, but unfortunately, within 8 or so hours of not taking it, my heart starts racing like crazy. Been through more tests than anyone ought to go through for this, just crazy stuff. Explains a lot, though, such as why I was wearing tank tops in the middle of the freezing cold weather, hot all the time!

Thanks so much for your help and I will check out the Facebook group. :hug:

Niecy
05-30-2009, 10:42 AM
I don't have Grave's but I do have Hashimoto's. My father and several of his siblings, aunts and cousins have it. He has never in a day over his life been considered even close to overweight. He is about 5'10" and weighs approx. 140 lbs. and this is all while being in very hypo phase (TSH was 9).

Hashimoto's tends to swing back and forth from hypo to hyper until the gland finally keels over. During the times my labs showed I was in a hyper phase (this was before hypo meds) I also had trouble losing weight. I don't seem to lose the weight until I am clinically euthyroid.

Your family members are obviously uninformed about the fact that not everyone has the same symptoms. Not much you can do about that except to read as much as you can and try to help them understand (since the autoimmune diseases are considered hereditary, they too could either have it already or develop it later in life).

I don't know much about Grave's because my reading only consists of mostly Hashi's related topics, but my impression is that most people with Grave's end up having RAI sooner or later and as a result are hypo and sometimes have problems finding the right dose to treat the hypo.

For now, I hope the meds do the trick until you are ready to make a final decision :)

Dria
06-02-2009, 10:43 PM
I hate the talk of weight with thyroid.... Its simple.. just read lol
Hypothyroid is usually suggesting someone will be overweight as it slows the metabolism...... right this is the general category when someone says HYPOthyroid
Now HYPERthyroid. Well if you WERE Hyperthyroid you would be skinny.... Uh.. B.S ladies and gentlemen! It really does happen for some people but what it all comes down to is this.....
If you have graves or Hashimotos. ( I was praying to have the hashimotos(less severe) Not that Im trying to write you people with Hashimotos off or suggesting you have it easy thats not what Im doing.... ANYWAYS
Having Hashimotos.... or graves...... Or Hypothyroidism or Hyperthyroidism... you have heard these 3 fun lil things.......
T4
T3
and TSH

Now THAT being said......
T3 is the more ACTIVE thyroid hormone..... (metabolism)
If your T4 is the HIGH reading.....It usually means you will likely have a little more weight.. GENERALLY now.... not always (just to cover my butt) The T3 needs to read high for you to be a skinny HYPERthyroid. And if your TSH is low same game.... chunky monkey.


That being said.... also talking in graves...... Best thing you can do is get your friends and family to read up on the issues we deal with. Having us try to explain seems like we are whining... or looking for pity or trying to make excuses for being an all around witch :)
I hope you can get your levels good.
I am now out of remission and we are watching my levels again. When they reach the highs I was at again I will be going to get my thyroid removed as stated earlier.... I have the Eye problems of the graves and Will NOT be having rai as is right now my eyes dont bulge out of my head and I do not intend for them to. But getting the RAI will certainly speed up bulgy eyes :)

Hope some of this has been helpful :) As said check out the graves groups on facebook... lots of fabulous info on everything graves!!! Better then googling it even!!

SPIRITANGEL
06-03-2009, 12:17 AM
I have Graves Disease. It's not as terrible as you think. I was put on PTU for it and am now -1 year later almost in remission.
Start taking selenium everyday- my endo told me it seems to help
I also take carnitine and co enzyme 10
Check out elaine moore on google- she has an amazing website

Dria
06-03-2009, 12:27 AM
Spiritangel I have to respectfully disagree with your post.
I would not encourage anyone to start any meds herbs supplements without ever first checking with the endocrinologist.

Also Graves is not terrible for all and for others..... well for others it ruins lives.....
AM I being dramatic well that depends on what symptoms how many of the symptoms your having..

Thus coming from someone who has been on several of the meds...... been in remission and coming out of remission :( I wanna be in remission sadly my body has other ideas

My Personal opinion of Elaine is she is just another us.... she is simply someone who has graves...... and has written about it. Sadly the lack of books written on Graves pushes people to read books like hers... Like I said IM very sorry to disagree so much with your post I really do not mean any disrespect.

I have included a link for the graves group on facebook... thus again is simply many discussions from people who have lived it are living with it or are living with it through family members... lots of convos... if IM not mistaken Elaine is also discussed on this page

http://www.facebook.com/group.php?gid=2396171664

sindy9001
06-23-2009, 04:12 AM
I am sorry to hear that you have this kind of Grave's disease. But I can't give you any suggest. Sorry!

Happy Canuk
06-23-2009, 01:50 PM
I don't have Grave's disease, but my daughter did. She was 20 yrs old at the time. I knew her thyroid wasn't right, but the Dr. said it was her age. All of a sudden, she went from being a very skinny kid to being overweight. Dr. said it was hormones (she was 16 at the time). I believe her thyroid was malfunctioning, even at that time.

She lost 50 pounds without trying and was really happy, until they diagnosed her with Graves Disease. Her heart was beating a resting speed of 150 beats a minute. They were concerned, gave her the radiation treatment and she has been on Synthroid ever since. She is now 41 yrs old. Her thyroid still gives her problems now and then, but she knows what to expect and how to deal with it.

Like you, she was so hot. I remember it was -30 outside and she was sitting at an open window trying to get cool. Also, at her wedding she could only dance the first dance, and then she was soooo tired she had to sit. As for weight, well she did gain back the 50 pounds, but then joined WW 10 years ago and lost 75 pounds. She looks terrific, but of course, she still can gain easily - just like the rest of us if we don't watch our diet.

There is hope and the thing that I am most concerned about is that no damage was done to her heart.

Look after yourself.

cathyxxx
06-24-2009, 12:42 PM
Steelslady - please please please check out the info at www.stopthethyroidmadness.com before you do anything as drastic as removing your thyroid.

also you mention not feeling right emotionally - that is a common symptom of thyroid problems and a lot of people find that they do better on Armour Thyroid rather than synthroid bec the Armour contains the direct T3 and synthroid does not.

again - please check out the info at stopthethyroidmadness and let me know if i can help with any of it.

take care,
cathy

Me Too
07-09-2009, 09:36 PM
What would be the lab results numbers for Graves Disease?
my TSH last year was 1.47, then went down to .89, I just had another test last week. I am getting a little worried, but like others have said I am not losing weight either, emotionally I am a wreck but nothing new there.
Any info would be helpful to calm my nerves.

cathyxxx
07-09-2009, 10:24 PM
Me Too - are you taking thyroid meds? if so what are you taking and what dosage?

Me Too
07-09-2009, 11:50 PM
I'm not taking any meds, Dr doesn't seem to be to concerned, or at least as concerned as I seem to be. I feel like Oprah here with her problem.

Dria
07-14-2009, 04:29 PM
Me Too your levels are fine.
Let me show you..

TSH Normal is anywhere from 0.5 - 4.2 So as you see your ok there.
T4 Normal is anywhere from 9-21
T3 Normal is anywhere from 3.62- 5.79

For Example my levels when I was diagnosed?!??!
This isnt also graves for sure with these levels. But def HYPERthyroidism

But in my particular case was diagnosed with the Graves.

My T4 was 36.1 normal (9-21) SO clearly very hyper.
My T3 was 21.3 Normal (3.62-5.79) Again.... very clearly Hyper.
And My TSH was 20.01 Normal (0.5-4.2) Again very clearly high

Your levels are very normal Id say.

cathyxxx
07-14-2009, 04:59 PM
just gotta jump in and share a few things....

new lab ranges for the TSH are 0.3 to 3.0
you can read about it here at:
http://thyroid.about.com/cs/testsforthyroid/a/labs2003.htm

but there are also many docs who believe that anything over 2.0 indicates hypothyroidism.

with the TSH the higher your result means you are hypo (low thyroid) and the lower your result means you are hyper (high thyroid). I know that is backwards from normal thinking but that is the way they measure that one.

my TSH was never higher than 2.70 and I take 5 grains of Armour daily. the TSH alone can be very misleading.

I'm not sure which T4 of T3 tests Dria had done, as there are many thyroid tests, but the FREE T4 and FREE T3 thyroid tests are really the more accurate ones, along with the thyroid antibodies tests.

again, the TSH alone can be very misleading, but by Dria's TSH result of 20.01 that would indicate hypothyroidsm as it is a high result, but yes the results on the T4 and T3 are above the range and indicate hyper.

MeToo - if you have hypo (or even hyper symptoms) I would have the more accurate thyroid tests done. Not just the TSH.

you might want to check out the info at about.thyroid.com and at stopthethyroidmadness.com

Dria
07-14-2009, 05:07 PM
I also think there is difference in numbers depending if you are in usa and canada. Such as diabetes results. Different number scales.
Mine to clear up are the free t4 and free t3

cathyxxx
07-14-2009, 05:16 PM
Dria - that's great that they are running the FREE T3 and FREE T4 tests on you!

Also, I wanted to mention that I wouldn't be too concerned by any TSH result - I would be more concerned about symptoms and the trick is to find a doc that is more concerned with symptoms also ;-)

Dria
07-14-2009, 05:34 PM
Oh Ive been doing this awhile... nothing new here..... I dont really worry about my levels at this point. I let my endo worry about it.

Dria
07-14-2009, 05:34 PM
Also wanted to share this chart
Also if concerned ask your doctor for an uptake test.......


TSH T4 T3 Interpretation
high normal normal Mild (subclinical) hypothyroidism
high low low or normal Hypothyroidism
Low normal normal Mild (subclinical) hyperthyroidism
Low high or normal high or normal Hyperthyroidism
Low low or normal low or normal Nonthyroidal illness; Rare pituitary (secondary) hypothyroidism

Me Too
07-20-2009, 10:30 PM
Sorry, I have been away. I am going to get my resent lab results tomorrow and will see what my TSH T3 and T4 are then.
I do have some of the symptoms and thinking it may contribute it to my inability to lose weight, even with a good diet and exercise for the past 6 months.
thank you all for your information and advice, its mean the world to me to know I am not along.

Me Too
07-21-2009, 10:06 PM
Latest test results
TSH 1.00
Free T3 3.00
Free T4 0.96
all with in normal range, now I have to figure out what else is going on with me and my not being able to lose weight no matter what I do.

cathyxxx
07-22-2009, 10:09 AM
Me Too, different labs use different ranges. could you please post your ranges for the Free T3 and Free T4 tests.

I'm thinking your results are low in the range, which could be showing you the problem. Just bec results are "within" the range doesn't mean you are optimized yet. Most people find they need their Free T3 result to be in the upper 1/3 of the range to treat their hypo symptoms. But yes, with a TSH of 1.00 (without taking thyroid meds) you would have a hard time getting a doc to treat you with thyroid meds.

Also, have you have tested your thyroid antibodies?

What does your body temperature normal run?

Me Too
07-22-2009, 01:15 PM
Range for Lab work

TSH 0.47-5.01 mine 1.00
T3 1.6-5.6 mine 3.0
T4 0.71-1.85 mine 0.96

cathyxxx
07-22-2009, 01:23 PM
yes Free T4 is very los in the range. and your Free T3 is about midway. you would probably feel better if you could get those a little higher but granted it would almost be impossible to get a doc to treat you unless you have thyroid antibodies or a reverse t3 problem, etc.

do you happen to know what your body temp usually runs?

Me Too
07-22-2009, 07:24 PM
I usually have a slightly high temp, at times I feel feverish and really run down, but then the next day I am fine.

Dria
07-26-2009, 12:41 PM
Me Too
Please go back for more visits to your dr once a month if possible and ask for the free t4 t3 tests as well as the antibodies..... levels can change drastically in only a short time. So if your feeling off keep getting those numbers checked.

canadianangel
07-30-2009, 01:11 PM
although i dont have graves, my 9 year old has just been tested for it. right now she is eating 8000 cal a day trying to maintain her weight, but she is still lossing. we should have the results in by tommorow. she is now wereing a size 5 clothing and very skinny..

im glad i found this thread..great info

ang

cathyxxx
07-30-2009, 01:21 PM
CanadianAngel - you might want to check out the info at www.stopthethyroidmadness.com and at www.thyroid.about.com and there are several yahoo thyroid groups that may be of great help to you.

canadianangel
08-01-2009, 05:26 PM
cathy..thank you for the links..i will check it out. i can say that her last test results are
free t4 normal is between 9-23 and she is 77
tpo normal is less then 35 and she is 124
antitg normal is less then 40 and she is 201
tsh is only .05 and should be between .35 and 5.0

and her numbers are raising with each test we get done

ang

cathyxxx
08-01-2009, 09:09 PM
Hey Ang - a couple of questions,,,

does your daughter use any aspartame products?

and also do you have autoimmune thyroid disease?
have you yourself been tested for thyroid antibodies?

also i ran these test results by a friend of mine that I consider an expert on thyroid - she mentioned that you can not be diagnosed with Graves from these test results alone. This can just diagnose “autoimmune thyroid disease’...and “hyper”. She could just be Hashimotos.

To diagnose Graves...she would have to have the TSH receptor antibodies....TRabs....with TSI (thyroid stimulating antibodies) dominating...

Have y'all by chance done that test?

canadianangel
08-04-2009, 05:26 PM
Hi,

she acyully had a thyroid scan and all the blood work done, and it was confirmed this morning that she has graves..her peds doctor said its one of the worst cases she has seen, we started her on meds, and in 2 weeks will do anyother repeat of testing and every 2 weeks after that for about 3 months. Im just glad she was finally diagnosed, she was getting really bad..even violent..

ang

cathyxxx
08-05-2009, 02:50 PM
Hey Ang,

I don't mean to bug you to death with this stuff but I'm just trying to help....

feel like I need to mention that the scan doesn't diagnose graves, it diagnoses hyperthyroidism and a lot of docs just don't get that hashi's and graves both can cause hypo and hyper. It's the antibodies that tell the story on what it is.

did you get copy of the bloodwork that was done? that is always a really good thing to do. if so would you mind posting the TSI results - and the lab ranges that go with it?

thanks,
Cathy

canadianangel
08-05-2009, 05:28 PM
hi cathy,

your not bugging.. i dont have acopy yet of the blood work as her final one done about 2 weeks before the scan was completed was done by a peds specialist. her tsi(i think that what it is) was way over the limit..as i was explained to on the phone..from what i remebr correctly..she has anti bodies attacking her thyroid, and in turn its proucing to many hormons that are being released into her system..does that make sence? Both the scan and the blood work showed graves. and im hoping its the right diagnoses.

she also has igg/iga deficient, celiac, high blood pressure, ashma, and allergies

ang

cathyxxx
08-05-2009, 06:10 PM
Ok then it sounds like they did the TSI antibodies and if they are way over the limit, then it is Graves.

katdog
08-17-2009, 07:37 PM
Hi there,

I was diagnosed with Graves about 3 years ago and have just been weened off of medication for the second time - pretty sure I'm in remission.

There are consequences to every form of treatment and the best thing you can do is read, read, read. I think I have a pretty good endocrinologist, but the truth of the matter is the docs simplify things and upon diagnosis, usually recommend RAI. There is a lot of information on hypOthyroidism because the most common treatment in the U.S. is to destroy the thyroid, rendering you hypo.

The weight you lose while in active Graves is MUSCLE - including smooth muscle, which is one of the reasons it's so dangerous.

There is a book called Living Well With Graves' Disease and Hyperthyroidism and it's the most informative book I've found so far for people who choose not to destroy their thyroid to treat the disease. The U.S. is the only country that does this, I think, because of the financial reasons.

I hope you'll do a lot of research and decide what's really best for you, which isn't always what the doctor recommends.

sunflowergirl68
08-20-2009, 02:38 PM
A couple of weeks ago, I was rushed to the hospital with racing heart and feeling off emotionally. I was told my thyroid numbers were all over the place. Several days later, it was confirmed that I have Grave's disease. Now, they also think I am going through the change as well.

I am going crazy. I cannot stop eating, and the funny thing is, I am not gaining weight. I also have hemorrhoids to boot. Emotionally I don't feel right, either. I am told that this will all start to go away when either A. the endocrinologist figures out how much medicine I need and my levels are correct, or B. they decide to take my thyroid out and put me on Synthroid for the rest of my life.

My question to anyone that has been through this is- does this really settle down? Can you still lose weight with the medication?

Family members tried to "correct" me, if you will, saying I must have heard wrong and have hypothyroidism. They can not believe that I have the hyper kind because "only skinny people get hyperthyroidism". Lucky me to be the first person that they know to have it while being fat. :(

Any help or advice would be appreciated. Thanks.


I don't have a thyroid due to thyroid cancer and had to have two surgeries and am on Synthroid, but it's very very difficult for me to lose weight.

laural5
07-04-2010, 11:28 AM
I don't know if anyone is still watching this thread but I too was just diagnosed with hyperthyroid and I'm fat...fatter than I've ever been at 220lbs and I'm 5'6". I don't understand how I can be fat? And of course, I fear that going on medication will only make me fatter.
So, to the person who first posted....how has it been going?

Steelslady
07-09-2010, 11:40 PM
I don't know if anyone is still watching this thread but I too was just diagnosed with hyperthyroid and I'm fat...fatter than I've ever been at 220lbs and I'm 5'6". I don't understand how I can be fat? And of course, I fear that going on medication will only make me fatter.
So, to the person who first posted....how has it been going?

Sorry to say, I feel absolutely horrible again. Had my levels rechecked after being so called in remission, only to have it back as bad as it was last year. I've gained back all 50 pounds that I so proudly worked off. After I had worked it off was when the Grave's disease started kicking in- I was and am again hot all the time, emotionally feeling funky, have diarrhea all the time, just to name a few symptoms. Today my heart was racing so fast I had to lie down, as it was giving me a headache.

This is just so miserable. I was just starting to lose weight again recently, when this damn thing acted up again. Ssssssssoooooooo frustrating to deal with this, especially during the heat wave. Family has no idea just how hot I am- I've tried to explain to them that I MUST have the air conditioners on at all times, or I will pay dearly because of the heat intolerance. Some didn't believe me and kept shutting theirs off over the 4th of July weekend when I visited them with my family for three days. I am still paying for it today, being hot and miserable all that weekend.

Oh, and the muscle weakness? Just brutal. Lifting a stock pot full of water is painful to me. All this from a very strong, independent woman- I feel like a damn freak now.

Brendansmum
07-10-2010, 02:50 AM
I was diagnosed at 19 with hyperthyroidism and was overweight as well. I chose not to have the RI and was told that a hypothyroid was easier to treat. I have a "hot" or toxic nodule..not Graves. My mother had a goiter removed and was hypothyroid and I saw her struggles with weight loss so opted for treatment with medication. I wanted to give it a try before killing my thyroid completely.

It has worked really well for me. There are days that seem like I need a little more meds and days that I need a little less but I've managed thus far. I haven't had any trouble losing weight and my docs are pretty happy with my levels.

I have been on PTU for 13yrs and have carried two pregnancies without incident, except a 10 pounder. Just my two cents. I hope everything works out for you and your docs get your levels under control.

hpnodat
07-12-2010, 04:46 PM
I was Dx'd with Graves Disease about 8 years ago. I started out taking the anti-thyroid meds but I didn't tolerate them well at all. The made me very sick. I looked into alternative methods and learned there was really none other than RAI and Surgery. I'd rather have surgery than RAI, I will NEVER, EVER have RAI. Every doctor I ever went to pushed me to have RAI and one even told me I would die if I didn't have it. Don't let Doctors scare you into believing something, remember you are paying them and you have the right to make you own decisions about your healthcare. Make sure you learn about it and get your facts strait before you make any decisions. I finally have a doctor I can trust.
I decided to do something crazy and try natural therapies, my doctor supported my decision and I was under his care the whole time and still am! I went to acupuncture and took Chinese herbal medicine & I'm proud to say that I'm finally in remission, I hope I can stay in remission. I don't suggest the natural method if you are severe Graves unless you are under your doctors care, you could go into a thyroid storm and that is very dangerous. I was mild to moderate so I took a chance and we kept a close eye on my levels to make sure nothing serious was happening.

The only thing I can suggest is please, please do tons of research on this disease before you decide to have RAI. RAI is permanent and can create a whole new set of problems to deal with so you'd better be damn certain that's what you want to do.

Also, hyperthyroidism is just a SYMPTOM of Graves Disease. IF you kill or remove your thyroid, you still will have Graves Disease.

Oh and I was fat when I was Dx'd too, I haven't been skinny since I was 8 years old! I would always jokingly say. "leave it to me to gain weight with a disease that would commonly cause someone to lose weight, that is just my luck!"