[saumya]

in reply to: Symptoms back after 2 years in remission :( #1063949

Hi Julie,

I’m another member of the Phoenix support group and just wanted to say hello. I hope you can make the meetings, Kimberly does a great job running them! ” title=”Very Happy” /> Hope to see you at the next one (I’m actually in Tucson, so the trip is sometimes iffy).

All the best,
Saumya

[saumya]

in reply to: Chest pain but normal numbers #1063282

Forgot to mention that I later had my TSH drop to undetectable and I didn’t really notice. But my docs dropped my synthroid at that time.

– Saumya

[saumya]

in reply to: Chest pain but normal numbers #1063281

Hi Shannon,

Yup, it was definitely scary! ” title=”Wink” /> Actually, I don’t think that I was any more stressed out than usual. There really wasn’t anything in particular that my doctors changed… just a lot of monitoring. They thought it might be similar to esophageal spasms — and there’s apparently nothing you can do for that either! ” title=”Very Happy” />

– Saumya

[saumya]

in reply to: Back to the drawing board… #1062071

Hi Shirley,

Sorry that your hand hurts! Hope it feels better soon. Recently, I also found myself fending off multiple vegetable-knife fiascos unsuccessfully. What is it about onions that makes cutting yourself easier? ” title=”Smile” />

Thanks for putting the reference from the NIH out! Its a great place to find info and is always my number one recommendation for medical facts. And I’d like to reiterate the comment about my previous posting not being an approach for classic Graves’ patients. As Shirley put it, "to realize have multiple autoimmune diseases….many of the meds in [my] specific health situation relate to your other issues. and not be regarded as appropriate for Graves’."

Incidentally, are there any other people out there facing something similar? I hope I’m not hijacking the thread, but it’d be nice to compare notes. ” title=”Very Happy” /> (Facilitators, please feel free to dump this posting in another thread if its appropriate).

– Saumya

[saumya]

in reply to: Chest pain but normal numbers #1063279

Hi! Sorry for the delay in replying and a big thank you, Shirley and Bobbi, for the posts. ” title=”Very Happy” /> I monitored my BP and HR over time (and at multiple points within each day) and couldn’t really find a statistical variable that could be controlled (i.e. my HR went up if I stood up).

So I’m just waiting. I’ve brought my concerns to my team multiple times but there’s not a lot they can do right now with my situation being as complex as it is. I’ll keep you updated!

Thanks again,
Saumya

[saumya]

in reply to: Back to the drawing board… #1062069

Okay. While I appreciate the information and facilitators’ messages, I’d like to point out that the initial request from Jenni was for information on autoimmune disease treatments (which includes Graves’ but is not restricted to it like hyperthyroidism treatments are).

So, based on that, here’s what I’ve got…

While admitting that autoimmune treatments do NOT target anti-TSH receptor antibodies or any other specific auto-antibody, they are able to treat autoimmune diseases by removing/stopping the production of excess auto-antibody. Autoimmune treatments vary in intensity and suppression methodology…. they do not put autoimmune disease patients at immediate risk of having all immune response suppressed. In fact, a number of autoimmune diseases (RA, MG, MS, etc.) use these treatments regularly with good results for the patients. If you are interested, please contact a RHEUMATOLOGIST, not an endo, internist, or anyone else. Please remember that specialization in any field causes perspective restrictions. For example, endos in the US have a tendency to focus on diabetes (which does not respond well to immunosuppression) and treat all diseases, including Graves’, in a similar manner. Rheumatologists tend to focus on musculoskeletal and autoimmune diseases and have their own "faves".

People claim all sorts of things on websites and the such, it does not mean that the methodology gains/lacks scientific or clinical merit. High dose naltrexone is used to treat opioid addiction. Low dose naltrexone has been shown to help certain autoimmune disease patients. There are many doctors familiar with Graves’ disease that would prescribe naltrexone in the right situations. For example, I am on it right now.

I have been treated for over 8 months with a focus on immunosuppression of my autoimmune diseases which includes Graves’, Graves’ ophthalmopathy, fibromyalgia, and inflammatory peripheral neuropathy. I am currently on low-dose naltrexone treatment (3mg each night — $11 copay for a month’s supply) and undergoing monthly whole-body exchange plasmapheresis treatments. I have also undergone monthly IV-IgG (IV-immunoglobulin G) treatments and immunosuppression through naproxen, mycophenalate, hydoxyzine, plaquinil and multiple (over 6 separate and increasingly aggressive) steroid treatments.

As you can see, my team has been trying to suppress my immune system for awhile. If the plasmapheresis fails, I will move on to the big baddies, methotrexate which can cause lymphomas with continuous use or azathioprine which can cause all sorts of cancers ” title=”Sad” /> . I am not in a similar situation to other posters. I have a very strange form of Graves’ in addition to other aggressive autoimmune diseases. There are a few of us (multiple-SOL ) around and we depend on the fact that immunosuppression methods (such as rituximab) have been shown to treat autoimmune disease including Graves’.

I have no other options at this time than to suppress my immune system. Jenni, I wish you luck in processing all of your stressors and hope that you will find a treatment option that works for you.

All the best,
Saumya

[saumya]

in reply to: Graves and Acne #1062427

Hi!

I definitely have had a few breakouts of acne due to Graves’ or its side effects. I found that 2.5% benzoyl peroxide (can be found in Neutrogena’s On-The-Spot Acne Treatment (vanishing cream formula)) cleared up the underlying acne and allowed my skin to heal properly. That and following the old-school rules of washing your face 2x day with a light cleanser, moisturizing after the acne treatment has been soaked up, not touching your face, etc. Hope this helps!

[saumya]

in reply to: Eye disease issues #1063136

Whew! Its nice to hear a clear description of what’s going to change before I get into the cold phase! All my doctors keep on telling me to "wait and see". I give myself extra pats on the back (or would if my neck and shoulders weren’t so sore!) for not pointing out to them that I can’t "see" anyways!

I do feel like a broken record, though, in describing how severe my symptoms are with respect to the disease progression. This disease should come with a certificate stating that we’re not crazy. ” title=”Very Happy” />

Wishing everyone a very Happy New Year!

[saumya]

in reply to: Do any natural/alternative treatments work? #1063331

Shirley,

Thanks! I’m glad to know my comments were so well received. ” title=”Smile” /> As to the eyes, deciding on a graft is pretty tricky. Good luck either way! I haven’t had any surgeries yet – my ophthalmologist has no idea why I keep developing new symptoms. So I’ve gotta wait for everything to settle down first. Its so weird, the diplopia comes and goes (though the photosensitivity is perpetual!).

Take care and happy holidays!

[saumya]

in reply to: Hi Everyone #1074188

Annie –

Welcome to the boards and I’m so sorry you’re having a rough time. This disease SUCKS and seems to suck your life away from you sometimes. It is debilitating and demoralizing. ” title=”Neutral” /> I have gotten to a point where I live in the moment – just putting one foot in front of the other – and have stopped thinking about the future or past. This might not have anything to do with it, but have you had your levels checked? I had a really bad spell when hypO and getting levothyroxine has at least alleviated some of the fatigue.

I hope that knowing there are a lot of people reaching their hands out will help you cope. We are all here for you.

[saumya]

in reply to: Do any natural/alternative treatments work? #1063322

Hi all!

Apologies in advance for hitting a lot of the previous comments at one time. Its the engineer in me!

I’d like to point out a few things about definitions:
Vegan = no animal protein
Vegetarian = includes dairy, may/may not include eggs
Pescatarian = includes dairy, eggs and fish
Omnivore = everything that moves or doesn’t move ” title=”Very Happy” />

With regards to the China Study, as a vegetarian for 19 years, I can assure you that living in moderation is far more effective than becoming an unbalanced vegan. So, please, please, if you decide to become a vegan make sure you watch your protein, vitamin and inflammatory marker levels. Please understand that I am not against any particular dietary plan, instead I’m against the massive over-ingestion seen in most American homes. A lot of the reason why people who are new converts to a vegetarian/vegan diet see so many improvements in their health is that these diets have the added benefit of curtailing caloric over-indulgence. Mostly ’cause you’ve got to cook so much!!! Oh, and President Clinton is not a vegan; he eats fish periodically.

On another note, It is NOT true that the body responds to animal proteins by "attacking" them. Instead, the breakdown products of EXCESS animal protein (which is the standard in most American diets) can make molecules that in some cases may be somewhat pro-inflammatory. Do you see the issue caused by "can", "some", "may"? The same molecule that is attacked in a number of these books/studies (arachidonic acid) is ESSENTIAL to life. You cannot survive without this molecule and it is not available from most plants. And, along the same lines, removing all iodine from your diet is not good for you in the long run. While EXCESS levels of iodine can negatively affect hypER, your body requires iodine to function normally.

With respect to Ewenme’s comment about acupuncture… it must be remembered that "alternative" medical treatments are only alternative HERE. These treatments (acupuncture, Ayurvedic, homepathy, etc.) have been in existence for centuries, even millenia, in other countries and have always been highly individualized. So the "proven effectiveness" theory doesn’t really hold water for a number of these treatments since it is impossible to apply research study standards to patient-specific therapies. Incidentally, the biomedical engineering and pharmaceutical fields are facing that same dilemma as more and more of our cutting-edge therapies have improved by becoming patient-specific.

I am currently working with an integrative medicine team at the University of Arizona medical center. They have all been trained in classical Western medicine (which is primarily an allopathic approach) and have then specialized in how to add more holistic treatments. A number of institutions and hospitals across the U.S. have similarly trained physicians who can direct and monitor your treatment. Since they are board-certified M.D.s, you shouldn’t have any problems with your insurance.

Hope this helps! Sorry for spewing so much info, but my good eye days are few and far between. ” title=”Sad” /> Good luck to everyone and happy holidays!!!

[saumya]

in reply to: Headaches?? #1063244

I had migraines before my Graves’ and have had bad headaches all this year. If you don’t have any heart issues, you might want to ask for a calcium channel blocker (like verapamil) instead of propranolol. CCBs have fewer side effects than BB and you don’t build a tolerance to it like you can with BB. However, I do realize that its not the "typical" first line against migraines. Its just an option. ” title=”Razz” />

[saumya]

in reply to: TED AND PUFFY FACE #1063347

I’ve also felt the "puffy face" symptoms. It was weird because I wasn’t taking steroids at the time and I kept on feeling that my glasses were tight on the sides. Like everything was swelling. My experience with under-eye bags has had more to do with my eyes drying out at night – leaving me with disrupted sleep. I’ve been trying Oil of Olay’s Regenerist eye gel and seem to getting good results. I know its made for wrinkles, etc. but I find it very soothing after a rough night. If nothing else, it leaves my skin very hydrated and supple. ” title=”Smile” />

[saumya]

in reply to: Remission after 5 months?? #1063500

but he claims that all my symptoms are not thyroid related since the my lab results felt into normal ranges 2 months ago. I had nausea for two months that now is suddenly gone and he claimed that it is not GD as well . I slowly see the improvements and I know he is not right.

I’d be highly tempted to sit him down with some biology textbooks and have him explain exactly what GD does NOT affect. If he can find something in the body that neither autoimmune abys nor thyroid-based hormones can alter, he might be up for the Nobel Prize.

Recently, my internist mentioned that GD w/o TSI can cause headaches; which were happening 8 months before my ANY of my numbers became "abnormal".

[saumya]

in reply to: POLL: what positive things have come about in your life… #1072393

I’ve learned that I can get through more than I ever thought possible.
I’ve learned patience.

I know that keeping a good outlook is imperative when fighting a disease. But day after day for the rest of your life?! Now I know I can do it. I can smile and be cheerful even with my pain. A part of me does get grumpy when other people exclaim "Oh, you sound so cheerful/look fine/are smiling, you must be doing well!" — that just gets me to be more patient. GD sucks but I am happy and will be in the future.

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