[Anonymous]

#1058526

Hi,
I am looking for information and research concerning the links
between Graves Disease, swollen lymph glands preceding the onset of
Graves Disease, and any connection to cortisone treatments.
A very close friend of mine has been diagnosed with this illness,
and she is pursuing alternative treatments to killing her thyroid
through radioactive iodine or surgery. Her doctor saw no connection
between these things, and she is sure that there is.
Any information or sources would be greatly appreciated. She is a
wonderful, loving, young woman, and I am worried about her.

Sincerely,
Rob Wandell
wandellr@endvm5.vnet.ibm.com

[Anonymous]

#1168717

Rob, Graves is a problem of the immune system, so to me if a different part of the functioning of the immune system goes haywire, that makes sense to me (lymph glands, i.e.) STRESS is a major reason that Graves shows up, & I would say that stress comes in a lot of forms, not just mental as in my case. I understand that the hypothalamus sends too much TSH to the thyroid when under too much stress. I believe that even if you eliminate the thyroid, you must still deal with the too much stress that the hypothalamus is still screaming even if the thyroid isn’t there to recieve the message. What a muddled sentence. Write again if this makes sense to you Karen

[Anonymous]

#1168718

Karen,
Thanks for the info. My friend is moving to Florida to reduce the stress
in her life. She feels that escaping the winter here and spending more time
in the sun and swimming in the ocean will help her health. She is also
very diet aware and is taking vitamins and herbs that are supposed to help
the immune system.
She is not following the doctor’s advice to take the radioactive iodine
because she feels that the root problem may be something else, something that
first showed up as lymph node swelling and became grave’s disease later on.
This root problem is what she is seeking diagnosis/treatment for, but her
doctors can’t seem to figure out any connection and have no answers to her
lymph node questions.
She also does not have all the symptoms, such as swelling eyes. She does
suffer from a protruding neck somewhat, due to the swelling of the thyroid.
She also has had periods of racing heartbeats and large appetite with no
weight gain. These 2 symptoms seem to have subsided somewhat.
She is looking for information about any connection between graves, lymph
problems, and cortisone treatments. She had long periods of cortisone
treatments for skin problems in the past, and is wondering if these treatments
my be part of the root problem.
I am wondering about the long term prognosis of a person with this type of
thyroid problem that does not undergo thyroid surgery or radioactive iodine
treatment. Has anyone recovered from this without becoming hypothyroid and
needing thyroid supplements for the rest of their lives? Any information
will be greatly appreciated. Thanks.
-Rob

[Anonymous]

#1168719

I was diagnosed with Graves Disease in July and they killed my thyroid in August. I also have swollen lymph nodes that are extremely painful. If you recieve any infomation, please pass it on. I have not read anything to connect the two nor have I found a Doctor who even cares to try. Good luck!

[Anonymous]

#1168720

Hi Sandy,

I was diagnosed with an overactive thyroid when I was about 14 years old or so. I’m 39 now and I had the operation and RAI when I was 16. I do remember having swollen glands behind my ears and I think it was before I was diagnosed with the thyroid problem. My mother took me to the local doctor who just said it was swollen glands. I had the mumps when I was much younger so that was ruled out. I remember I looked like a pumpkin and it only lasted for a couple of days or so. I had forgotten all aboutit until I read your posting. I may have been on something to control my over active thyroid at the time. But most of that time is a blur to me so I can’t say for sure.
Just thought I’d let you know.
Bye,
Kathy

[Anonymous]

#1168721

I have been diagnosed, six months ago, with the “beginning” stages of Graves Disease. After blood tests revealed a normal reading it was determined that I had and still have as far as doctors can tell me the eye form of the disease. Namely swelling behind the eye. After having gone to at least 6 doctors now I am totally frustrated at their inability to give me solid answers on treating the disease and not just the symptoms. I also believe this disease like most is brought out by STRESS! I am further frustrated by virtually every doctors refusal to acknowledge the part stress plays in this disease. After all my research through books and the medical sources on the Internet, including this message board, I am convinced beyond a doubt that stress is a major factor. Personally I know the stress I have endured over the last 3-5 years of my life and its a miracle that I don’t have the disease in its worse form. Sorry to ramble on but I wanted to acknowledge someone else who feels as I do that stress plays a major role in this disease. I am currently researching both better traditional medical help and alternative methods. Please let me know if you or anyone on this board hears of anything helpful in the way of alternative treatments to this frustrating disease. I had one doctor actually tell me my eye disorder was “just cosmetic”. This was after I complained of not only pain and pressure from the swelling but blurred vision. Anyway sorry for the long message. If I find any helpful alternative methods and/or resources I will share them on this bulletin board. Frankly I am both frustrated and disgusted with the medical help and treatment I have received so far. Thanks for listening and providing a place to post.

[Anonymous]

#1168722

Michel- Like you, I have just the Grave’s eye disease with no thyroid problems(Euthyroid Opthalmopathy). You really need to find a Opthalmologist that is familiar with Grave’s who will measure your eye proptosis with an instrument called a “Hertel” and also watch for secondary Glaucoma that can come with the disease. Hopefully he (or she) would know a good endocrinologist you can also see. The main thing is that no matter what the treatment, they can keep track of your eyes for improvement or deterioration. Changes can be so slow that it’s hard to notice.

I tried just about all the alternative treatments and had some luck with acupunture, but it had to be along with the “normal” medical treatments as I was rapidly losing my sight.

I I just recently had a doctor (not even an endo) ask me if I had any mental trauma, etc before the Grave’s came on so they are starting to learn.

Please feel free to email me and I can give you more info on what treatments I’ve gone thru in the past few years.

Patience is the word here Michele! There is no quick cure for this and time can help. Don’t rush into anything like surgery without several professional opinions.

Best wishes, Bruce

[Anonymous]

#1168723

I have graves disease. I have also been using cortizone cream on my face for the last 22 years

[Anonymous]

#1168724

Bruce:
Thanks for your response. Yes I have been to three different Opthalmologists. I am frustrated because they all tell me there is nothing they can do for me right now. They want to wait and see how bad it gets before they recommend any surgery. I guess truthfully my biggest frustration and fear right now is that my eyes will get worse and that I won’t ever “look” the same or normal again.

What alternative methods/treatments did you try. I have also considered accupuncture/accupressure, am just now investigating this route. It is very interesting that emotional trauma/stress has been linked to this disease. In fact the last eye doctor I saw described this disease as being one of the auto-immune disorders in which the body “attacks” itself. Apparently what causes the eye swelling is the thyroid producing too much thyroid which causes antibodies in the body that shows up as eye swelling around the eyes causing the eye disorder of this disease. I am very concerned about the double vision I have been experiencing so yes I am seeing eye doctors on a regular basis. Its just so frustrating to learn they can’t do much for me right now. Thanks for your reply and advice. I am trying to learn as much as possible about this strange disease and it is truly helpful to hear advice from other patients going through the same thing.

Take care,

Michele

[Anonymous]

#1168725

Hi Michele!

That’s probably true that they can’t do anything just yet. If the eyes get too bad they can put you on Prednisone (a corticoid steroid). It really worked for me but there are side affects to it. They can also do “Orbital Irradiation”, which I had, to stabilize it.

They do think its an auto-immune disease attacking the muscles of the eyes, similar to rheumatoid, etc. Some think it may be triggered by a virus.

I have done acupuncture, kinesiology, different herbal regimes, and self-hypnosis with some help but it got too expensive at times. I love acupuncture! My body just says “ahhhh” when they put the needles in and relaxes. Like a good drug.

Your job now is just to learn as much as you can and hang in there for the duration! It may take lots of support from those closest to you. Be sure and ask for it!

Best wishes! Bruce

[Anonymous]

#1168726

Pam–It won’t hurt to read Dr. Stoll’s information about Graves’; just know that he is in error about what happens to the hypothalamus, pituitary and Thyroid Stimulating Hormone in Graves (my TSH was .002 on diagnosis, almost non-existent). His whole argument is based on that wrong information (check it out with any doctor, or with your lab results!), plus the unproven contention that Graves’ is caused by stress. Stress MAY be a factor in Graves, and perhaps there is information in his website that is helpful. Regardless, Dr. Stoll doesn’t know what Graves’ IS, so do you want to take his advice on how to treat it?

I agree that it would be much better to get to the cause of the disease. Doctors all over the world have been trying to do that, for years! I hope you continue to learn as much as you can, and consider all possibilities. My personal decision to take the atomic cocktail was based on a desire to go on with my life in good physical health, as soon as possible. I wasn’t willing to go through years of trying things that might not work. For those who are, more power to you. It might work!

According to the information I have (Dr. Gordon, Loyola University), a small percentage of Graves’ cases will go into permanent remission spontaneously. The majority of cases of Graves continue to get worse until something has to be done, and other cases are characterized by periods of exacerbation and remission. Eventually, untreated, the thyroid will wear out and you’ll become hypothyroid, if you don’t die of the hyperthyroidism first. In the meantime, the thyrotoxic state contributes to heart disease and osteoporosis, among other things. I understand your reluctance to take a permanent treatment, Pam. The thing I thought hardest about before taking the I-131 was what would happen if our social order collapsed and thyroid replacement became unattainable. Since I’m now suffering the horrible symptoms of hypothyroidism, I can tell you first hand, the quality of life would be nil.

Your treatment choice is very personal; only you have to live with the consequences of your decisions. This message board exists to share information and support. Hopefully we confront erroneous information. Let us know what you choose and how it’s going for you!
Dianne

[Anonymous]

#1168727

Pam. . .I enjoyed your post, and would love to hear what you find out when talking to Dr. Gordon. Can you find out more about the relation to estrogen and let us know?

Certainly, those of us who were “nuked” are dealing with doctors and their textbook “normal”, and all the other problems you mentioned. No doubt, a better solution would be to elminate the disease at the source. Do you think that’s an option that’s being kept hidden somewhere?

I really admire your desire to find a way to do that, and your open-minded but intelligent efforts to learn everything you can. There’s nothing about your messages that require “putting up with”. . .so keep them coming!
Dianne

[Anonymous]

#1168728

Okey dokey, Dianne – remember – you asked for it!

On two websites in the past week, (I’ve been up almost all night, every night since my diagnosis, researching) there were references to estrogen, although the associations were never explained beyond mere mention. So…I went around to the back door. Estrogen and thyroxin both have an impact on bone density, weight gain/loss, emotions, et al. Graves’ Disease is many, many times more prevalent in females – what do women have that men don’t? (sorry, guys – bear with me, if you will) The other factor that made me question female hormones, is the fact that my breasts are SORE- all the time! My entire life, until the stress that I thought triggered the weight loss over a year ago, and ultimately, this diagnosis, I never experienced any breast pain, even with pre-menstrual symptoms. From my mother’s bout with breast cancer, I learned that there are estrogen receptors in the breast. After her mastectomy, her surgeon asked her if she had ever noticed breast tenderness before her period. The doctor then prescribed the drug toTomoxafin to inhibit the over-absorption of estrogen in the breast tissue. Graves’ MUST have something to do with my symtoms, since they both apeared at the same time. Understand, I’m having problems tying all these little pieces together, but it would seem to me, that there is a little sex hormone monster lurking in the shadows. Dr. Gordon mentions hyperestrogenism in his discussion of hyperthyroidism. He also cites elevated ratios of free testosterone in men. He mentions a connection with the pituitary gland in relation to excessive thyroid hormones. There are TSH-producing pituitary tumors, and as far as I know, my current doctor hasn’t even done any pituitary or other hormone tests. All that appears on this single sheet of paper from the lab, is thyroid info (which is pretty bad) and a CBC. There is no mention of FTSH, or other levels that are discussed in various articles.

Needless to say, I will be taking up alot of Dr. Gordon’s time Wednesday morning. I’ll jump on here directly after, to post any information that might be of interest. I’m grasping at straws, I realize, but some of you are going through agony, dealing with callous medical “professionals”. The doctors are performing a service for us. They darn well better listen to us when we notice changes in our bodies,or emotional status from day to day. I think it’s a shame, when a doctor tells a young woman not to be concerned with her weight gain, as I read here in an earlier post. Even if he takes no measures to correct it, he should certainly realize that self esteem is vital to successful treatment of any chronic illness and at the very least, offer her some comforting words. The only way we are going to erradicate this type of insensitivity, is to take our health care matters into our own hands, and insist that we get the attention and compassion that we deserve.

Gawd, I’m sorry for all this psychobabble. It’s 3:03am and I am sleep-typing. Believe it or not, I never have much to say in person.

Pam

[Anonymous]

#1168729

Hi Pam.
Interesting set of questions about hormones. I forgot to say that along with complete thrroid tests & hair & blood tests, my chelation doc also was suspicous about hormones. I have about 0 progesterone, & low amounts of DHEA, with other hormones playing at being normal. I wonder if is cause, result, or significantly related. He recommended a cream for the progesterone & a low level of DHEA suppelments. I had a second mineral IV treatment earlier this evening. So far, more improvement in muscle pain, almost none now. Oh, but I did get an unexpected good bit of info: my cholesteral hdl & ldh & ratios are excellent. (I was always borderline high. Up to now I attributed it to changing to eating more veggies, & raw veggies. Now I wonder is it to do with the progress of Graves.)
I feel better in general, but too soon to think that Graves has changed.

Perhaps the imbalance of the hormones contributes to the suseptability to develope Graves. I understand abt the stress, & in my case, my ugly marriage ended at about the same time mom had a major stroke, added to diabetes & parkinsons. I’d been caring for her for a year prior, as well as now, & of course working. Not much different of a story from a lot of others, from what I’ve gleaned here on this board. Karen

[Anonymous]

#1168730

Hi,

I’m a newcomer to this bulletin board. I’m finding a wealth of expertise in your messages.
I too, have a reaccurance of hyperthyroidism. I went to my family doctor because I could tell the symptons were back(after 5 years). He said he doubted it but I was right, unfortunately. Last time I took anti-thyroid drugs. I have been seeing a chiropracter who specializes in TBM (Total Body Modification). I have been trying diets and vitamins, but after 2 months there is no change. Does anyone have any esperience with alternative approaches that you could share?

Thank you.

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