I understand that the several symptoms I have are NOT necessarily tied together and could represent a few different issues. ie: severe prolonged Diarrhea could be related to IBS? but I also know that IBS is kind of a "we don't know" diagnosis. My overall pain could be "fibro" as I have been told, but again, I feel fibro is a "I don't care or I don't know" diagnosis rather than someone really thinking about what all of this means together.
Hashimoto's hypothyroiditis has flipped to an "undetectable TSH" with free t3 and t4 either high or low. (I believe it is ha****oxicosis. Dr. told me I had thyroid cancer after seeing me for 6 months. I had a scan, it was negative. she never saw me again.) I went on a total "anti-inflamatory" diet : no sugar, no dairy, no sugar substitute, no processed foods, no caffeine, no gluten or wheat products and no corn or anything with high fructose corn syrup. After 4 weeks, I had dropped 25 pounds and my TSH was almost normal on Synthroid 1.25 - the least amount I have been on in my life. BTW, even on synthroid .625 (half a 1.25) tsh was STILL undetectable. have been on this diet for 7 months with a few "cheats". thyroid seems better. problem number one potentially helped.
pain: severe pain in my feet at night if I have been up walking very much during the day esp if I leave the house during the day. (I live on disability so I spend many days just in bed because of pain.) severe pain and burning esp on bottoms of feet, in large joint of great toe and new thing where both my ankles crack (really loudly) many times a day. Pain is so severe I sleep with ice packs taped to the bottoms of my feet! and take ultram. I hate meds and I am taking meds. (ps. I have had 4 back surgeries and it's lately been suggested that it could be neuropathy? I have had RSD/causalgis in left foot for 20+ years that was fine until I had a knee replacement in that leg two years ago. Can the RSD, which is reactivated, be speading to my right foot? RSD pain has never been on the "bottoms" of my feet.
low platelet count for the last 4 years with dr's ignoring it. I've been told it's "low but stable" so it's "ok"? no body has ever tried to figure out what it is and I know it's mildly low. average 110,000 - 120,000. MVP always elevated which I have discovered probably means my body is creating lots of "baby platelets" and then killing them?
recently started checking my temp a few times a day with sweats. usual temp for me is between 97 - 97.8. morning and evening, it's between 99.2 - 100.2 Last night it was 99.6 and I had no reason to believe it was elevated, I just took it. To me, a constant low grade temp means something?
constant slightly elevated BUN
constant slightly elevated liver enzymes. (don't remember which ones, can look it up if need be). findings discarded as non-alcoholic fatty liver disease.
Triglicerides: very very low.
cholesterol: very very low - below the range of normal.
HDLs: very high end of range of normal.
LDL: very low end of range of normal many times below the scale.
(physician told me "people would kill for your lab results". I have since found out that abnormally low - when I eat a high fat diet and have most family members on treatment for HI trig. and choles. - means something. and is not "a good thing" like my previous dr. said.
severe fatique with poor sleep. usually sleep 4 hours with sleep meds. some days, sleep 18 hours. Such severe body pain and fatique, if I leave my house, I end up the next two days in bed without energy to even eat some days.
night sweats. severe diarrhea some days can equal 10 times an hour with incontinence upon sneezing!
I am only 56. I believe I have an adrenal issue that has affected my thyroid. The physician AFTER the one who said "you have cancer" suggested having my thyroid removed since it seemed so out of control. I decided to NOT have it removed. I have had toooo many surgeries in my life. and I would rather know what it is, rather than just remove it.
• my younger sister has Lupus. Now 53, diagnosed in mid 40's.
• My older sister and I have epilepsy. I am ten years off antiseizure meds and seizure free. She takes dilantin for the last 40 years. She is 59.
• younger sister and I have both had surgery for catarracts in our 40's.
• all members of my family have either hypothyroid or hasimotos. Father and MGM had thyroidectomy for goiter.
I know this is a lot of info but I am stumped and have been sick for 4 years and at this point, I have NO medical care. I have medicare and can't find a dr. to accept a new patient on medicare. Physicians for the last 4 years, since my symptoms have been out of control, dismiss me or send me to specialists (gastro) who can't find anything wrong or also just dismiss me.
How do you dismiss someone when there are actual abnormal lab results?
I am afraid I have lupus but my ANA, according to my dr was "normal". I work at getting my actual lab results now since for 4 years I was told it was all "normal" when my platelets were low, bun high etc. I do not have the actual results of the latest group of tests my "old" dr. did. She also gave up and shrugs her shoulders and says "I don't know". Meanwhile, I spend 2 out of every 3 days in bed and I feel I am young! This is NOT ok.
I need to know what is wrong. whether related or not. even who do I see now? neurologist? foot dr?
I have had a severe vitamin D deficiency treated with prescription D. At present I take 4000IU daily and are in the very low normal range. I think that's a lot to take daily and still have a very low - and slightly normal - results. but it's just told to me "normal". they seem to ignore the amount of replacement I have to take to keep it barely in the range. which I know can also lead to fatique.
btw, since I live on disability, I have no money to pay for more tests that are meaningless. I am close to bankruptcy for testing that various dr's have repeated over and over rather than thinking outside the box.
when I mention lupus, they say "you don't have the rash". My sister did not either.
I am concerned and just want a diagnosis - or a few if need be (ie plantar fascitis OR neuro? big difference.) and treatment so that I can have a life again.
overall pain and esp bottoms of my feet esp at night if I leave the house and in the morning - sleep with ice taped to my socks/feet, severe fatigue, low grade temp morning and evening. low platelets.
any thoughts where to go from here? please help?
what tests do I need to do? where do I go from here? help. I am losing my life...OR ready to give up my life. I can't keep living this way anymore. esp without physician assistance. It seems when they give up, I get told to just go away...
I am a Nurse. I don't believe I need to feel the way I do and I hate medication. I take many supplements right now just on my own, am seeing an acupuncturist for some possible assistance and an "energy healer". I am doing all I know to do at this point. HELP Please?
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