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About dyankeetoo

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  1. Dear Georgie: I could write chapter and verse on thyroid disease. It's the only diagnosis I had for over 20 years, and I researched it to death. I'm convinced that TSH test, and even FT4 and FT3 don't really give the whole picture. Armour DOES help...no doubt about it, but getting it fine tuned is another topic. I presently take all 90 mg first thing in the morning, along with my levothroid (doc says that there are plenty of T4 receptors, as well as T3, and you need both. We experimented for a year, with me getting tested and tinkered with every four weeks before I found a combo that seemed to work. More Armour without thyroxine seemd to send me hyper without resolving many of the symptoms. Anyhoo..... The osteo is another topic I know a bit about, because I had hyperparathyroidism (one adenoma removed in April of 2005). I have osteo, no surprise there, because of the overactive parathyroids. We are tinkering now with the idea that it was secondary hyperparthyroidism...due to vitamin D insufficieny. That's where the possibility of Celiac, and the inability to metabolise nutrients comes in. In my youth (!) I was a major sun-worshipper...undoubtedly maintained my vitamin D that way. Now I'm trying to manage it by taking 4,000 mgs of vitamin D a day, after a blood test produced virtually no vitamin D. I tested positive for another adenoma a couple of months ago (though the odds are only 10%). If I do indeed have Celiac, that explains a whole bunch of things docs have never been able to get a handle on. At one point in my life I was so anemic that I required two blood transfusions. DUH! Best, Laurie
  2. Hi, Ursula: Hmmm...soy and dairy. I have eliminated soy...never cared for it except in soy sauce, and I haven't used that in months (there's always wheat on the label). I don't drink milk...started having cramps from it 'way back in grade school, but I do love cheese and it's become a staple since I went gluten free. Is there something about cheese that make it digestable? I ask, because it hasn't bothered me in the slightest...in fact I eat cheese first thing in the morning because it's one of the few things that staves off the nausea without putting me to sleep. I have a strange reaction to sugars and carbs...just want to sleep, so I usually try not to consume much until my day is over. Needless to say, I've lost 20 lbs in the last couple of months (mostly in my ankles ~smile~). This is scary stuff, having to be eternally vigilant, even reading lables on vitamin pills and antibiotics (BTW, do some antib's have wheat fillers, too? That would explain why I react so violently to some of them). I am so grateful that you, and folks like you, are so willing to explain. My cousin, who is a confirmed Celiac, was really wicked helpful, too. We compared sores! Best, Laurie PS...Thanks for the link to the lab. Do other docs accept the results? L
  3. Thanks, Tarnalberry. I'd only seen this information once, on a doc's commercial site, so I wasn't sure it was accurate. Guess that means giving up the tuna, darn it, not to mention all that salt. Do you perchance have any links to research/abstracts that explain it in more detail? (I'm not a bad researcher, and I like to know the medical explanation. Boy, the more I look into this, the more restrictive it seems to become. But I'd give up a heck of a lot to get rid of the holes I have all over my body (not to mention the scarring). My immunologist gave up...says that its excema. I've doc hopped so often now I've got records all over creation, and I need to stick with someone for the next time I get pneumonia or sinusitis. Thanks again, Laurie Dear CarlaB: It seems that there are darn few docs who really understand this...in fact, it has become clear to me that there are few docs who can consider themselves experts on ANY particular disease, including the specialists. No, as far as I know the biopsies that were done were for bulous pemphligoid/Mersa. The sores didn't respond to antibiotics (three courses of different ones, now), and they barely respond to steroid cream. I turned down the prednisone, as I have too many hormonal issues already. I'll have to gather up what optimisim I have left and make an appointment. My primary will give me a referral to any specialist I want. Which, in your opinion, is the most likely to know what to do? A gastro, a dermatologist or? Thanks so much...I really appreciate your taking the time to respond. Best, Laurie
  4. Hi... Don't have a diagnosis yet, but I have some odd deficiencies, and am trying for a DH diagnosis first. I've been gluten free for three months, going on four, and I've lost 20 lbs without ever missing a meal. For me, the odd thing is that I began to gain weight, FAST, after the birth of my 21 yo. I had been between 118 and 128 lbs until my 38th year. I could gain or lose 7 lbs in a day, so I knew it was waterweight. Edema in my ankles and feet was so gross I went up two shoe sizes, and still couldn't stand to wear anything but slippers. Couldn't tolerate water pills (I fainted into my bathroom sink). I gained weight until I hit 180 pounds in three short years. I HATE the way doctors treat you...it didn't matter what you said, it was what they saw; and they were so intolerant. At one point I fasted for three days and gained 5 lbs. Of course, I wasn't believed. Three weeks into gluten free and I could see my ankles again. I lost 10 pounds the first month. Now my rings slip off my fingers and....I can hear again. No more ringing in my ears and the room spinning around. My feet have stopped screaming, wonder of wonders, though I doubt I'll ever be able to wear fashion shoes again. So for me, it was the gluten that turned the key of the edema, and I don't miss the constant stomach upsets, either. (or the emergency trips to the jon, either). I can see my eyes again, and the constant toothache from my sinusitis is gone. I knew, in my gut, it was the edema in my face that was causing all my sinus problems, but I just couldn't get docs to see it. Let me tell you, I wish you well. I definitely feel better, and I look better, too. I didn't wait for a diagnois when I began to read about celiac...all of a sudden all the pieces fit. I've had blood transfusions for anemia in fact. Best, Laurie
  5. Hi, and Thanks for the Information: Actually I do take Armour...a combo of 90 mg of Armour and 50 of Levothroid (after a year of experimentation to see what worked). Yes, I did used to take $ynthroid, but it quit working for me about fifteen years ago...either that or my body quit metabolizing T4 into T3...and I'll never know. Both my endocrine surgeon and my endo told me to never, ever take biophosphates...with my calcium metabolism gone wonky, I'd be at risk of actually causing more problems. So I guess I'm free and clear on that topic. I've heard this in other places, too. I'm eternally vigilant about what I take for medication because I live on a knife-edge of exhaustion. I thank God for every day with enough energy to get the things I have to do, done. I don't trust the pharmas one little bit; altruism is not a word in their vocabulary and I suspect they've done untold harm with their stranglehold on medical practice. Did you know that the FDA relies on the pharmas own testing to approve drugs? Talk about the fox in the henhouse. Best, Laurie
  6. Hi to All: A heartfelt thanks so much for your replies. Took me awhile to figure out why I wasn't getting replies in my email. Duh! I am going to go back to my primary and demand testing for DH...I've been on three courses of antibiotics now, and am about to try Diflucan (from my holistic doc). The Immunologist won't see me anymore for what he calls excema (his only solution is to put me on Prednisone, and I've done that before and don't like what it turns me into; a screaming, bitter virago). The holistic doc is the one who's seem me most recently and he is really, really concerned that some of the sores will turn into an infection into my bloodstream, I've had them so long (one of them since January). The itching is almost more than I can stand. I must have about a hundred of them now, and new ones appear almost daily. Any pressure point; the wastband of my pants, the top of my kneehi's and I have new blisters under. When I wake in the morning the itching is darn near more than I can stand. I had two of the tests done last January...and both were negative. I wish I had the exact description to hand, but I don't. I THINK I've been gluten free for several months now...just eating meat, potatos and vegetables and avoiding anything prepared. I don't eat out, so that's not a problem. Tell me, is iodine a problem for any of you? I read on one internet site that exposure to iodine can make DH worse. Is that true? I'm a salt freak, I'm afraid, but I could go to Kosher salt if I had to. Best, Laurie
  7. Hi, Brizzo: I'm pretty much a lurker here, but I have to tell you...I've had the scalp problem my entire life, and I'm 59 years old. Only recently developed the blisters all over, and I haven't had the biopsy yet. I'm betting on a positive, though, as I've been gluten free for three months, and I've begun to see a positive difference in my energy level and...HOORAY the constant nausea and stomach aches, running like a crazy person to the jon are gone (except for one instance when I made meatloaf with corn chips and paid dearly). Apparently I'm one of those who can't tolerate corn either. Do the scalp itchies clear up when you take antibiotics? Mine do, but come right back as soon as I've finished the course. Thank goodness I have thick hair. Best, Laurie
  8. Hi to All: I've had a bit of a different take, coming in from the other side of Osteo. I was diagnosed with hypothyroid back in my twenties, and I'm 59 yo now. Always had stomach problems (had my gall bladder out at age 25), but I really learned to live with them, because my exhaustion was uppermost in my mind. I still don't have a confirmed diagnosis of Celiac, but I've improved a great deal on the diet (three months, going on four now). However...I've had consistent high calcium testing for a number of years, and a year and a half ago they check my parathyroid hormone and it was out of sight. I had a parathyroid ademona removed in April of 2005. Had one terrible year, I can tell you, trying to recover from the surgery. Now they tell me that I have a profound Vitamin D deficiency and...another adenoma. I'm going with the secondary hyperparathyroidism at this point (due to vitamin D deficiency). And yes, I have osteo. My mother is currently in a nursing home because her kyphosis (that's dowager's hump to the uninitiated) has narrowed her throat to the point where she can't swallow without aspirating her saliva. My Mom, Grandmother and Great Grandmother all had this extreme kyphosis. Kyphois is due to bone loss (osteo). Bone loss is due to disruption in calcium metabolism. Calcium metabolism is controlled by the feedback system of the parathyroids; when you don't have enough calcium in the bloodstream, the parathyroids will become overactive to the point where the demand for calcium is so great that the body will give up the calcium in your bones to maintain the calcium in your bloodstream. If you aren't getting enough vitamin D, your body cannot process the calcium you ingest. My cousin is a confirmed Celiac. Now, hyperparathyroidism can cause extreme exhaustion and a lot of other symptoms that can mimic a whole bunch of diseases. So I thought I was home and free. NOT. A year later and I'm back in the same place again. I could write chapter and verse about hypo and hyperparathyroidism. It's not a place you want to go, and believe me, you want to look at every other possible diagnosis before you opt for surgery. I didn't and I've wasted yet another year of my life imprisoned in my bed, yorking over a basin. And I still have osteo. Best, Laurie
  9. Hi to All: I'm a newby here...with lots of questions, but the one paramount question is...how can I convince my doctors to give me the testing? Follow are my list of health issues/diagnosis: - cousin with confirmed Celiac - Hashimoto's Thyroid Disease - Hyperparathyroidism (surgery for one adenoma in April 2005) - Vitamin D deficiency - Igm Deficiency - Stomach and bowel problems - Huge weeping, itchy sores all over my body...first diagnosed with Staph, and when that was unresponsive to antibiotics, bullous pumphligoid, negative at biopsy. I should mention that I've seen an Infectious Disease Specialist and an immunologist. Both tell me that I do NOT have Celiac because of one set of antibody tests done last January. But nothing else seems to fit. I'd appreciate any suggestions. I'm at my wits end...so exhausted I can hardly put one foot in front of the other...and it's been 15 years now that I have looked for answers. I've been trying to go gluten free for about three months now. Every now and then I think I've overlooked something, and I get horribly ill. I don't vomit, but I feel like I should, but it sends me to bed to sleep and sleep. Best, Laurie
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