Graves - weight gain, itching, scaly ears

[musicteach]

Ok - I was diagnosed with Graves Disease about three years ago.  My only lab test that was out of range for the thyroid was that my thyroid antibody test was 225.  The symptom that alerted my doctor was that one eye was bulging slightly, and the other was drooping.  I have never taken any treatment, and my eyes are somewhat better, although fatigue makes things look worse - both in my appearance, and in the fact that I sometimes experience double vision.  NOW, I am experiencing itchy ears, with scaling skin around the opening of the ear.  Could this be related to the Graves?  Also, I am REALLY have trouble with my weight.  I gained 35 pounds during the year that I was diagnosed, and can't seem to lose more than a few pounds.  In short, I'm a mess!   I went to an Endocrinologist two years ago who told me that there is nothing wrong with me except for eating too many cheeseburgers.  Yes, that's what he said.  My cholesterol jumped from 167 to 359, and that is what he told me was wrong with me.  He said that my thryoid tests were all in the normal range, and told me to eat nothing but vegetables for a month and I'd see my weight come down.  I did exactly as directed and GAINED four pounds (his soup recipe).  I am not a cheeseburger eater...
I decided to just try to get healthier on my own, try to keep busy and see if I'd get better.  It's not happening for me.  Any suggestions?  Is the ear problem connected with Graves?  Was that doc a quack?  Am I nuts???  Thanks---

[dancerfromparis1]

Nope your not alone I have graves and feel like shite! I ache from head to toe, my ears drive me bonkers and I have actually lost some hearing, I have had the radioactive treatment it didn't work so I am now back on Carbimazole I have gone from *8st to almost 10st in three months so people with an overactive thyroid can put on weight not just people that are under, I eat like a bird so it's not what is being ingested and I don't have an overactive imagination. It's there and feels horrible. I am also waiting for a kidney transplant so it's all a mess really and I don't find the Endocrinologist at all helpful. Your not alone believe me and thats without the sleepless nights, the feeling hot and the cramps in your legs and feet and on top of that the muddled thinking and depression. It's a horrible disease.

[AR-10]

Did not know that so many people could experience TED.

Thanks for correcting me.

[GravesLady]

TED is found in persons with Hypothyroidism, Hashi, Hyperthyroidism, Graves', persons taking Armour, and in people with no other evidence of thyroid dysfunction, and, is more severe in people who smoke.  For that reason, the preferred name is now
Thyroid-Associated Ophthalmopathy (TAO), or Thyroid Eye Disease (TED) rather than Graves' Ophthalmopathy (eye disease).  

There are certain variations, some which are connected or related  to Graves' or hyperthyroidism, however are separate issues.  It's also possible to have the eye disease with normal thyroid levels.

Treating the thyroid may not improve the course of the eye disease, though having abnormal thyroid levels can make eye symptoms worse.  

An ophthalmologist who deals with many TED cases is the best eye doctor for TED.

[AR-10]

The eye symptoms are caused by a condition called TED, or Thyroid Eye Diseaes.

It is said it is not related to Grave's disease, but it is found only in persons with Grave's Disease.

The scaley ear thing is a symptom of either Hyper or Hypo, but to be honest I don't know which. I have the same problem, but I have been both hypo and hyper. Dry itchy skin on your face and arms is often a symptom of Hypothyroid.

Weight gain is often associated with Hypothyroidism, which is the opposite of Grave's.

I assume your thyroid antibodies must be Grave's anti-bodies, since that resulted in a diagnosis of Grave's.

I wouldn't put too much stock in what the Soup Doctor had to say. Some Endocrinologists are Diabetes specialists and know very little about thyroid conditions.

High cholesterol is often seen in Hypothyroid patients.

I would go back to your GP and ask him to run a full thyroid panel again. Ask him to check you for ALL thyroid anti-bodies, and TSH , Free T3, and Free T4.

Something is going on. Some of your complaints could be from other problems, but when you throw in the eye problem, the other symptoms make it look like your levels may be going up and down, or you are technically "within range" but out of balance enough to cause symptoms.

You may be having trouble converting T4 to T3, possibly.

It would be a good idea to have your adrenal glands checked as well. Adrenal problems often have symptoms similar to thyroid conditions.

Test ranges for thyroid tests are overly broad, and it is possible to test "within normal limits", and still be off enough to make you sick.

If you show "high normal" or "low normal", you may need treatment or further testing or closer monitoring of your TSH to see if it is going up and down slightly.

I'd get your thyroid and adrenal glands checked out fully. I'd also highly recommend you ask for a copy of all the tests and take them home and look them over very closely.

"Within range" does not always mean "no problem".

Best of luck figuring it out.

[stella5349]

If you had a solid Dx of Graves Disease a while back and some endo is telling you to stop eating cheese burgers.  I think it's time to move on to a new doctor. Maybe someone you has a better interaction with their patients.  Your cholesterol is way out of range. Did anyone treat you for that at least?

It looks as if you have a background in education as a music teacher. I would be singing another tune to a new doctor that would give you the help you really deserve.

Good luck