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Speaking of diets... (Dr. Z your opinion would be appreciated)
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lupylisa44 posted:
I went to get a second opinion about my thryroid yesterday...

I went to endocrinologist on Monday and he adjusted my dose of synthroid. He said my symptoms were not from thyroid but from adrenal insufficiency. He sort of blew me off and didn't want to hear what I had to say. I was a little miffed so I decided to get a second opinion.

The doctor I saw yesterday is a family medicine doctor who specializes in integrative medicine. I asked her about my hormones. I have been wanting to try bio identical hormones but my Gyno doesn't believe in them. This new doc gave me an Rx for them to try for a month, which I think will be a good thing.

Then I asked her about my thyroid. She agreed with Endocrinologist and thinks my biggest problem is adrenal insufficiency. Her approach is different than the Endo's. She wants me to take butt-loads (insane quantities) of expensive supplements for adrenal support but doesn't want me to try to get off the steroids. (she sells the supplements herself which, to me, is a huge red flag.)

Just for an example: She told me to take 5, 1000mg fish oil tabs 2-3 times a day! In parentheses it says: to avoid fishy burps...what? YUK! I hate fish to begin with. The first time I have a fishy burp would be my last!!!

The Endo wants me to start trying to lower my steroids very gradually until I can get off of them. There has to be a middle ground here somwhere. All I want is to get all my hormones, thyroid and adrenal glands balanced.

Then the integrative med doc went into her shpeel about the no yeast diet and how it can get rid of my lupus (My lupus is under control and not even bothering me right now) I read "The Yeast Connection" years ago and did the diet for a long time (not quite as drastic as the one she laid out) and it didn't do a damn thing!

The diet she prescribed is beyond drastic. It pretty much eliminated all food and any taste from my diet! No Garlic, no onions or tomatoes?..What??? I cannot live without my spaghetti sauce!!! LOL! No blueberries, pomegranite, "colored spices," the list goes on and on. All foods I have been told to eat for years, that are supposed to be good for someone with lupus is suddenly very bad. She gave me a recipe for hummus and told me to take the garlic out of it...Ok, so she wants me to eat bean paste...that's just gross!

I look at it this way: food is a large part of the enjoyment of my life, why on earth, after all the suffering I've been through, take one of the last thing I enjoy away? I try to eat very healthy diet. I have eliminated anything processed and all partially hydrogenated oils.

I've also done the gluten free thing and tried every supplement under the sun at one time or another. I have seen naturopaths, alternative, Chinese med, accupuncturists, chiropractors-you name it, I've been there! Guess what they all had in common? The all had something (supplements) they wanted to sell me to fix all of my woes.

Well, I am not buying it! Trying alternative therapies along with conventional medicine is something I believe in strongly. Some have worked wonders for me! But a line has to be drawn. There is a point when you have to say (WTF?), is this really good for me or is it a bunch of garbage? One must use their common sense! And mine is calling it BS!

Lupylisa
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David Zelman, MD responded:
well lupylisa, for all that you do for this community you deserve a direct response. From my perspective you are responding correctly to the quirky recommendations given to you about faddish inclusions or exclusions from your diet or recommedations for megasupplements. They are not supported by evidence. Fish oil is useful though primarily I believe for cardioprotection and health, not hormone regulation. I don't know what all your symptoms are but if your endo says your thyroids are normal then the numbers are the numbers. If you take prednisone chances are the symptoms are not from adrenal insufficiency per se. MD could do an ACTH stim test to test for that. Patients on prednsione may become adrenal insufficient in times of stress (like surgery) though chances are do not experience day to day symptoms.
I agree that it is always good to take the lowest dose possible of prednisone consistent with the control of the disease that is being treated.
Finally, I am not sure at all that you have a hormonal problem without looking at the numbers. You may be interpreting your problems as such but the tests may not support it.
I hope this helps
David Zelman MD
 
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lupylisa44 replied to David Zelman, MD's response:
Thanks Dr Z!!! I really appreciate you taking the time to read and anwer my post!!!

Just to clarify:

All of my test numbers do support my complaints.

I have been post-menopausal (due to cytoxan treatments) for 10 years. I have taken HRT for 9 years. Due to inconsitencies in the generic version of Estratest, my hormones need to be adjusted. I want to try bio-identicals to see if I fare any better on them. If not, then my OB/GYN and I will go back to the drawing board!

My fthryoid numbers are off right now which is why they have re-adjusted my dose of synthroid. The first adjustment (from .05 to .75) was too much. The new dose is .05 mcg for 5 days and .75 mcg for 2 days. I am waiting to see if it works at this level.

I will ask my doctor about the ACTH stim test. Since I am osteopenic and have already had cataract surgery because of the steroids, getting off of them is something that I wholeheartedly support! But unfortunately, it is easier said than done! It is a very slow and painful process!

The mega-dose fish oil is not for hormone regulation, but for adrenal support (according to that doctor ) But there is no way that I am taking that much of it! All of the stuff she wants me to take isn't covered by insurance and it costs a small fortune!!! I'm on disability and can barely make ends meet as it is!

Again, thank you so much for responding to my post!

Lupylisa
 
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bjjazzy responded:
when you mentioned the hormones and the thyroid stuff, the drugs you take now are synthetic crap, the other hormones balanced...well you need to go to an endrocronologist that deals in BIO_IDENTICAL Hormones....they work wonders for me. They have to take your blood and balance those. I take Armour Thyroid, which is natural and that is the only one that actually works and makes you feel less run-down. My city only has one doctor that is a bio-identical dr. Most others GYNs/Endo's don't deal in those drugs and the insurance companies don't becaust they don't make as much money at natural as they do the crap that doesn't work. All the other dr's drugs don't really work. I have to pay out of pocket to get my natural bio-identicals, but they are the only ones that work...they only things, not the supplements or most dr prescripts. They don't care about the people suffering, all they care about is their selves and that almighty dollar...MONEY!! I take Armour Thyroid for thyroid, testosterone cream I rub on my skin mode at a compounding pharmacy, Prometrium for my progesterone, and an estrogen patch I wear on my belly. The gynocologists and family drs. are USELESS!!!
 
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bjjazzy replied to lupylisa44's response:
also, about the adrenal problems, again my bio-identical endrocronolgist saw mine was low and she prescribed me DHEA, I took that for a while, it got my blood levels back up, and than she said I no longer had to take the DHEA. I get my blood checked once a year by her now for thyroid, DHEA, testerone, estrogen, and progesterone. I would, if I were you find and endo that deals in bioidenticals in your area....though there are not many out ther for doc's like that, it works, you have to pay some out of your pocket, and some is covered by insurance. just go to that kind of endo. mine is also a urologist at the same time as the bioidentical endo. dr. she is at the medical college....check out the medical schools in your area...because they are teaching doctors over there, so they have to be good. I hope this helps you. hit me back and let me know if you found anything or tried it or not yet, sounds like you tried everything else. You heped me too on here already,....because I am now getting desperate and was on line looking for Chinese medicine and suppliments....my sister keeps blaming me for the Lupus and that I should be on that and maybe it would all go away....but now I know yousaid the diets and Chinese stuff was bogus...thanks..se I am afraid to go on Pregnasone, cause I have drug allergies and am afraid of dying... I lost trust in meds and doctors now...the only drugs I seem to stay on are the natural and the bioidentical stuff...the only thing that doesn't send me into anaphlaxis, or has any side effects and yet they work!!! Please go on the bioidenticals..please.


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