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06-06-2007, 06:55 AM | #1 | |||
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First was my family doc, I do actually like him, yet I rarely see him, it's always a PA, unless you book way in advance. The first time I saw him, he did blood work, no fasting, and a Doppler nerve conduction test. The office called me, said I do have neuropathy in my upper body and that my cholesterol was high, adjust my diet! Any time I went in for pain of some kind, they would say, it's because of my neuropathy. Then in Nov I was having terrible stomach pains, I thought maybe an ulcer and the PA told me I was depressed and anxious, take Celexa, all will be better soon--they also did blood work, a thyroid panel, told me everything was fine. Come March, the stomach pains are gone, yet still anxious, terrible fatigue, weight gain, temp fluctuations, brain fog, etc, the doc increased my Celexa I requested an antibody test, which came back high, so I was sent to an endo. The endo said my thyroid numbers look fine and excused me--come back when you have visible symptoms. Not satisfied with that answer, I tried a new doc recommended by a good friend. A gyno who offers emotional help, diet and fitness center--called A Woman's Way. She put me on a 1200 calorie diet to reset my metabolism, 100 calories every 2 hours. She tells me to eat 1 of my ricecakes and peanut butter for breakfast and 2 hrs later, a piece of WHOLE WHEAT BREAD .Wants me to see her nutritionist, @ $50 a visit, no coverage from insurance because I am not a diabetic. Well, that's out, I have so many intolerance's, I would be wasting my money. Add to that, now I need a D&C and probably a hysterectomy.
She sends me to a neurologist to get an official diagnosis from him for the neuropathy, I guess my earlier diagnosis wasn't good enough--to which amazingly, I called for an appt just as they had a cancellation. I saw Dr. Mebrahtu, unhuh, I can't say it either! He says my reflexes are too good for me to have neuropathy, he wants to do a new nerve conduction test himself, doesn't believe the 2 I had done before. He has ordered 2 MRI's, the nerve conduction, and a brain scan. I told him I have to have an open MRI, he asks if I am claustrophobic, when I replied I am, he says he will give me xanax. I said no. He says, I am writing you a prescription for valium, I said, NO. He thinks I have a cervical problem, probably in my neck and shoulders, which is pinching nerves and causing the neuropathy symptoms. Yet when my reg doctor was sure I had a pinched nerve, he ran a nerve conduction to find it, they didn't find any. Dr. Mebrahtu also told me that if I am a self-diagnosed celiac, then I am wrong. So, I remained calm and told him, "If it makes you feel better, you can call me gluten intolerant, but, I can't have gluten! AND, what difference does it make to him? When I saw the gyno again on Monday for a sonagram, she tells me she had 2 women come in the same day as me and tell her they were just diagnosed with celiac disease by a blood test alone--why don't I try that. I tried to explain to her that I have been gluten free for too long for that test to work! She thinks I am being difficult! When I have requested the gene test be done, it never gets done. If it didn't come back with 2 definite genes they wouldn't believe me anyways. And--when I told the doc I work for about the polyps, prolapsed uterus (which I have had to deal with for years now) and the probable hysterectomy--guess what he said! This has probably been your problem all along. Why is it so hard to believe someone can't have gluten and the damage it causes before figuring it out? Vent over, maybe!
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Deb We urge all doctors to take time to listen to your patients.. don't "isolate" symptoms but look at the whole spectrum. If a patient tells you s/he feels as if s/he's falling apart and "nothing seems to be working properly", chances are s/he's right! |
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06-06-2007, 07:51 AM | #2 | ||
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Oh man... I get your frustration. Just RUN from doctors. Get alternative therapies and then go back to someone different for the GYN issues after you've had a chance to self-heal. Start with a Chiropractor, find a Nuropath doctor, anyone with 1/2 a brain steeped in logic will do. What I did was run from the medical community for 2 solid years. I returned to get thyroid testing, symptoms like you and the endo mailed a hand written note (barely readable) that states my thyroid levels are all within normal limits. The endo will not see me again (I had to have a referal from the testing doctor to even get in to see this endo). He has written down that I should be tested next year by my GYN. It was the GYNs test that showed abnormal thyroid levels, the endos test did not I'm probably low normal which is abnormal for me. I called the office to ask for a copy and they said we sent them to you. I as calmly as I could said I received what they sent and it was not the actually lab reports but rather a hand written summary that levels were normal and I wanted actual numbers. OH, shocked and amazed tone, we'll get those out to you tomorrow... I'll hold my breath! NOT. For myself, I'm done with docs. I got what I needed which was the blood tests. I will do Julia Ross's Diet Cure with Amino Acid therapies, self prescribed. I want those numbers first to see if I need thyroid grandulars added to the amino acids. On the Gluten issue. If you change doctors and say you are Celiac, they should not ask for a biopsy report. Go without records, don't allow them to access your old records that probably say "patient states they are Celiac, no biopsy". I got the pedi to write a letter for a nutritionist that states Celiac Disease, I can loose everything else and I've got my proof. (DS2 is not biopsied). I just need to change doctors again sometime, actually just take him in to see the Family Doctor and state he is Celiac. I have a Pedi and a FP with records on my children (FD is local for quick stuff, Pedi is an hour away). Note the nutritionist visit was a total waste of time - "don't give him anything with more than 5 ingredients listed, it is just too hard" this coming from a Celiac!!! I know more about nutrition than 2 "professionals". Good for you to say no to drugs. That is the answer for everything these days. I do hope you find out what is causing your pain. I would think the GF diet would have cleared up the neuropathy, but that is just what I've read here. |
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06-06-2007, 12:31 PM | #3 | ||
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Junior Member
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I am hypothyroid too, and I had to ask to be put on thyroid meds back in 2000 when I got too symptomatic. (e can do that here).
TSH was 2,5 but ft4 was 11 with a range of 10-20 which really explains the symptoms, and positive antibodies. I am on thyroid forums ad they have these problems all the time, doctors saying thyroid is normal even though TSH is 3 or 4 oer even 5, and many endos even refuse to believe that anyone can have symptoms with a TSH below 10. They even wrote a consensus about that at a meeting. The dissenting endos are for a lower range, 2,5 to 3. In Germany, some labs have lowered the ranges to 2,5 and to 1,12 after some new studies of the normal range. On the thyroid forums, they sometimes say go to a gyn, not to an endo. And if you have a Doctor of Osteopathy, try one as they see the whole picture, all he symptoms, and are much more inclined to treat you for hypothyroidism even with numbers still inside the range. BTW, normal TSH is very close to 1 and often people will have symptoms if their ft4 and ft3 are in the lower half for a lo time (they forget the time dimension....) Gluten is known to trigger thyroid antibodies. nora |
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06-06-2007, 04:27 PM | #4 | ||
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Magnate
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06-06-2007, 05:14 PM | #5 | |||
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Thank you everyone. I can't go the neuropath way because of financing, I must use my insurance.
I am positive I am hypothyroid with adrenal fatigue. When the gyno and I were talking about thyroid, she told me my numbers are well within range, the range being .40 - 5.50, to which I said, "The new range goes to 3.0" and she said, THE RANGE IS .40-5.50. I read a veryinteresting approach to this the other day. A person said, you have to look at it like women's shoes. They are size 6-10 with an average of 8, but if you where a 10, you can't fit in an 8--makes perfect sense to me. Why can't the doctor see that? I am scheduled for a D&C on Monday. I keep questioning my decision, but the "Tons and tons of polyps" must be dealt with. I am tired, so exhausted. I am not looking forward to the EMG either. I asked him to explain my symptoms if I do not have neuropathy and he can't. The neuropathy in my upper body will show, but I have small fiber in my lower body, so I will be ignored, I'm sure. Thank you.
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Deb We urge all doctors to take time to listen to your patients.. don't "isolate" symptoms but look at the whole spectrum. If a patient tells you s/he feels as if s/he's falling apart and "nothing seems to be working properly", chances are s/he's right! |
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06-07-2007, 11:40 AM | #6 | ||
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Junior Member
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Truly read The Diet Cure by Julia Ross, it will inspire you and quite possibly give you the tools to treat your conditions yourself.
Also start reading on GlycoNutrients. I've just begun that reading and I'm blown away (despite the 20/20 program that bashed glyconutrients and a major seller of such a product, but not the only seller). My FIL is a Massage Therapist and I value his opinions, he is the one who gave me the first weblink and article on glyconutrients. He was trying to help me in my thyroid quest as I helped him in his heart quest (mega doses of Magnesium and he's cured). |
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