Graves Disease x 3 years pending RAI treatment--long

[Jenoveva]

     I was diagnosed with Graves Disease 3 yrs ago. I had no signs nor symptoms that I could detect. I did have a slight goiter, but that was/is difficult to see as I am very overweight. I have been on PTU off and on during these past 3 yrs. I have tried now four times to see if I was in remission, but each time I reverted to hyper status after 2 mons of being off of the PTU. I felt nothing when I was severely hyperthyroid. I still feel nothing different when I fluctuate between my euthyroid and hyperthyroid states. I DO have symptoms of HYPOthyroidism--dry skin, cold intolerance, weight gain. My doc told me that it is possible to have paradoxical symptoms. I worry because my daughter had extreme symptoms of Graves. She has since gone through the RAI treatment several years ago---and now when she goes hypo, she goes through HELL! She has what seems like every textbook hypothyroid symptom! Depression and fatigue mostly. As I had no physical and emotional signs of Graves disease, I would hate to have to go through the same hell as my daughter after I take the RAI treatment. I don't know if I could handle it--the change would be a total shock to me. I also am scared about the weight gain thing. It scares me to think that I would have even MORE trouble losing weight than I do now! Does anyone know if there have been cases of paradoxical symptoms of hypothyroidism, like I had with Graves disease? I kind would at least like to hope that I would follow my usual here and have the opposite signs and symptoms of hypothyroidism , like I do with Graves...
    

[GravesLady]

The more times in and out of remission, the less chance and harder to achieve another remission. Plus possible chances for health damages from the prolonged use of thyroid drugs.  Liver damage, blood cells, etc.

It is not all that unusual for Hyper/Graves' to gain weight nor is it unusual for Hypos to lose weight.  It just depends on the body's make-up. Cold, I have been cold all my life an do not contribute it to any  specific thyroid condition (Hypo or Hyper), if any.  And dry skin, normal thyroid wo/men have problems with dry skin.  All the above are not mainly exclusive to thyroid. Also fatigue and depression has no favorites between hypo's and hypers.  

If you and your doctor paid attention to your levels and symptoms after RAI, by frequent testing (every 4 weeks until levels suggest thyroid hormones and I wouldn't wait to far into hypo levels if possible, even it levels show slight hyper I'd start the lowest dose), getting on meds as soon as possible, and finding optimal level for you to feel your best, there should be no or very little experienced,  "hell".  This might take work on your doctors part and cooperation on yours, but once achieved it will be well worth it. This also take a doctor who listens to you, hears you, and who is willing to work with you, and both of you working together as partners.

Sounds like your daughters levels are not optimized. On the other hand, some people have harder times than others, and the younger the harder it is, with more symptoms.

GL
Hyper/Graves'/RAI

[Jenoveva]

Thanks! I appreciate your comments. I feel better knowing that there are cases where the signs and symptoms can "overlap," for lack of a better expression right now. In nursing school, you learn classic textbook signs and symptoms, but real life and real humans aren't like that! I would be in HEAVEN if I could lose a little weight once this all gets straightened out.

I have never had trouble with PTU--I know it is a potent drug. Odd thing, I hated studying it in school (it is a pain to spell out! haha)..I remember thinking that I never, ever wanted to deal with that drug or the conditions it treats...and here I am! lol ....

The problem with my daughter's situation was that her doc took her off of Synthroid and tried Levoxyl. The Levoxyl didn't work as well for her. Plus, she was undergoing a couple of new stressors--training for marathons and applying for her first teaching job. Add to that two little ones under the age of 3.... Once her doc got her back on Synthroid and Cytomel again and get the dosage adjusted correctly, my daughter is back to normal..:)

My endo is a numbers only man. I pay him good money for him to ask me what dosage of PTU I have been on since our last appt, look at the labs for a couple of seconds and then tell me whether or not to continue the PTU. I can do that much myself! grrr...I think I see him all of one minute's time. Ask questions and he defers to whatever other doc or specialist he can! He is NOT an educator. If I wans't a nurse, I would be lost!!! Our insurance doesn't have too many area endos on it. My PCP tried to find me one who is the "least of all evils"--she knows I will ask questions and seek information. If he is the least of all evils, yikes! The good thing is that she herself can regulate my meds, etc. once I am euthyroid again. I wouldn't have to deal with him much after that.

[GravesLady]

Normally, once  thyroid levels have evened out at the level where you feel your best, weight will adjust and normalize.  Perhaps not to a 100% , but every little bit counts, wouldn't you say(?)
Although, I believe that I read where some ATDs, weight gain is a side effect.
I tried both synthroid and levoxyl which I am taking now and found no difference between the two.  For your daughter it probably was the cytomel that was better.  And stressors will certainly play havoc with our system which is no good for us GDers.  Stressors will aggravate symptoms and the disease, for sure.
It is suggested that we get copies of each and all test with Labs reference ranges, in which we can know for sure ourselves where out level are.

Regardless that I took your first post as that you nor your daughter was doing good, in this post you sound like you both are doing well, as to be expected anyhow.  However you need an endo. that works with many thyroid patients per year, most work with diabetic patients. Plus a endo. who listens to you,  hears you, and works with you in partnership to better thyroid/health.

Continuous Good Health and Remission!

GL
Hyper/Graves'/RAI

[Jenoveva]

Oh, I totally agree with you about finding a doc who is compatible! I have been very picky with my docs for over 20 years. I have just tolerated this one because I kept hoping that I would go into remission and wouldn't have to see much of him...but it hasn't turned out that way. And, yes, right now both my daughter and I are doing well. I tried to explain to her that stressors, whether good or bad, can wreak havoc with our hormones, including thyroid, but she hasn't quite gotten that concept down yet. She thought I was telling her a bunch of garbage! So much for my nursing knowledge, huh? :)

How soon after I take the RAI treatment should I expect to notice any changes in how I feel--physically and emotionally? I want to be as prepared as possible. From all I have read about people's experiences, it may not be anything to look forward to!

[Jenoveva]

Oh yeah, I forgot to mention that I have gotten ALL of my lab reports from all of my docs for the past 20 years! It is something I have demanded, in a nice way, from each of my docs. It is the only way I can keep track of where I am--plus it helps to have the labs so that the docs all can have a record of the labs I have had done.

[GravesLady]

Changes in how you feel after RAI is a individual matter and also depends on many factors.  How soon the hypo is caught and how soon meds are started.  The more hypo you go the more the symptoms and their effects.  The longer it will take to  get to the right level for you to feel your best and heal.  Regardless of which treatment, it takes time for our body to heal.   The longer you were hyper before being diag.,  it will probably take just as long to heal. All three treatments cure the hyper side of Graves', but not Graves' itself.  There is no treatment or cure for Graves' nor its antibodies. Graves' disease comes with its own symptoms similar to that of hyperthyroid.  So health might not be a 100%, a 100% of the time, but pretty darn close, close enough to have a happy functional life.   And of course other facts play a big part in our disease and healing process, such as stressors, other illnesses,  other health conditions, smoking, and so many, so on's and so forth's.  As a nurse, you understand all the health factors and issues .

What I do with my Lab copies, is that I keep like a health diary on the back and refer to them at doctor appointments so I won't miss the littlest of issues.

Continuous Good Health and Remission!

GL,
Hyper/Graves'/RAI