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Don't know what kind of specialist to see
My sister and I have been sick for 3 (me) and 4 (her) years and have not gotten a diagnosis. We are having symptoms from several different systems (neuro, gastro, cardio, etc.) and don’t know what to do. We have seen neurologists (I have seizures; my sister doesn’t), an internist, an endocrinologist and several family doctors, and they all tell us to go somewhere like the Mayo, but they are widely varied in their opinion of what kind of specialist we should see. We have no insurance, but we can pay cash up to a point. We just can’t keep going to different kinds of doctors without some kind of clue as to what we’re doing. ANY SUGGESTIONS?
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So sorry for all of your trials and tribulations. I became ill in 1981, thirty years now. After all the problems similar to yours, this is how I am doing. I am hypothyroid, After two surgeries to remove most of the thyroid gland, a small portion of the gland that was left started growing more tumors. I had digestive disorders, i.e., pain under the left rib cage, diverticulitis, diarrhea, horrible stomadh aches, joint pain, my skin itched horribly, unbearable fatigue and on and on. A pharmacist told me that I should look into an allergic reaction to the cellulose in my thyroid medication. Low and behold, after talking to the pharmaceutical companies, i found out that most of the thyroid medication has “acacia” sometimes called “gum arabic” in the pills that hold tham together. Years ago I was tested for allergies. The item I was the MOST allergic to was “acacia”. This is never listed in the contents of any medication. I am now on a medication called Westhroid(made by RLC labs.). As soon as I quit taking levothyroxine (a chemical) with acacia in it and went to the natural pork thyroid medication that has both T3 and T4 in it, my other complaints have subsided or begun to subside. No more indigestion, diarrhea, pain under the left rib, fatigue is getting better, my skin is healing, inflammation is rapidly leaving my body and on and on. I am finally getting better. You could have multi-chemical reactions to medications and food. Jelly beans, chewing gum, and many other foods have acacia in them. Read labels and eat fresh food. Cook from scratch. Incidentally, I was diagnosed with CFIDS; IT WAS THYROID. Look up STTP (Stop the Thyroid Madness) on the web. This may be of benefit to you. Best of luck.
This is just a shot in the dark, but I suffer a multitude of problems after eating ANY food that contains a dairy product. It has reached the point where just butter on one piece of toast starts it all. It couldn’t hurt to avoid milk, cheese, butter, etc., for a couple weeks to see if this helps. I use lactose-free milk, which seems to be all right. Last week I had “real” mashed potatoes at a buffet lunch. Sure enough, the miseries set in about 20 minutes later. I just didn’t think about the fact that they probably used milk in the mashed potatoes.
I have been going to Mayo Mn since 1998 and for 90% of the time I have been on either medicaid or medicare (medicaid you can get if you are disabled and are not eligible for Medicare yet). I live in Wisconsin. As a matter of fact when I first started to go to Mayo I was on state aid health. And what you can do is if you have a general practitioner go him or her and ask for a referral. If they cannot figure who to send you to have them refer you to a internal specialist and go from there. Also you do not need a full diagnosis all you need is a physician to say you are unable to work due to your undetermined illnesses. There are ways to work around it you just have to not give up and be your own voice and not to be rude but stop having your mom call for you. You need to be your own medical advocate.
a TSH level is in a Complete Metabolic lab test. TSH indicates how your thyroid is working.
Thank you for responding. My sister and I stayed sick—got worse, actually—after we went away to college, so if it’s something environmental, it must be a parasite or something that would stay with us after we left the environment.
Thank you for responding. My sister and I stayed sick—-got worse, actually—-after we went away to college, so if it’s something environmental, it must be a parasite or something that would stay with us after we left the environment.
We’ve all tested negative for Lyme Disease. Are there other tick-related illnesses that can cause serious illness?
Thank you. We’ve had TSH levels tested. They’re always normal, except my sister had an abnormally high 3rd generation thyroid test earlier this year at a health fair. She went to an endocrinologist and had it rechecked and it was normal again. The endo. told her the health fair probably mishandled her blood sample. Does anyone know if it’s possible to have a thyroid problem with tests that are sometimes normal?
I called and was told that, in order to get their charity care, our doctor here would have to tell a Mayo doctor that we are not able to get the care we need here, and exp[lain why. Needless to say, our doctors here are not willing to do that, even the one who suggested that we go to the Mayo!
Thank you. I did apply for SSI and am waiting to hear about that. Unfortunately, Missouri Medicaid requires a disability diagnosis, not just a doctor’s note.
Thank you. We’ve tried dietary solutions, like going gluten-free thinking we might have Celiac, and dairy-free, and vegan. Though we lost a bit of weight, the symptoms remained.