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Hormone Problems Message Board

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Hello Allyson831, I registered on this forum especially so that I could respond to your post. I don't know if you are still checking this forum.

I am another person who has exactly what you describe. I thought that I was the only person on Earth with this condition. I have many other signs and symptoms (I think) than you, but I would like to ask you some questions, because I have a hunch that we may have some similarities in our conditions. I, too, have gained lots of weight, and my doctors, also, have suggested perimenopause and other totally stupid hypotheses. I, too, have had a whole bunch of tests that all came back normal. (Gallbladder studies, CT scans, etc.) Abnormal have been: colonoscopy ("lyphocytic colitis"), kidney stones, enlarged fatty liver, enlarged spleen, too-small red blood cells, elevated white count, mildly).

First, are you running a low-grade fever at all? The best way to check this is to use an old-fashioned mercury thermometer and check several times a day for a week or so. (I have never gotten an accurate reading from the new digital thermometers, and have read that they read low by at least a degree or more.)

Second, I suspect that you, like me, might have an inflammatory condition somewhere in your body. I am having internal troubles (liver, spleen, small intestine, pancreas and gallbladder are all enlarged and inflamed, plus I had kidney stones), which is probably where my low-grade fever is coming from. I have had a terrible pain under my right ribs for six years. I once asked an ultrasound tech what she was pressing on at the moment, and she responded, "the left lobe of your liver."

About 8 years into my illness I became diabetic (I suspect that my pancreas, in close proximity to the other inflamed organs, has become inflamed itself, knocking out the islet cell function). This happened nearly overnight. I went from normal blood sugars to very little remaining islet cell function and on injected Lantus/insulin, so how to explain that? Yet, the doctors now wanted to use the diabetes as a scapegoat to get all the blame for my illness, even though I had only been diabetic for a few months and it was totally under control. How stupid is that?

I also have swelling in my feet and ankles, and another swelling above my left clavicle. Do you have any swelling anywhere? I went to see a vascular specialist recently. I almost didn't go! (To think that I could have missed the best chance to find out what's wrong!) After much testing, he told me, "There is nothing wrong with the veins in your legs. The valves in your veins are working fine, so your swelling is coming from your lymphatic system. It's called lymphedema." Similar to what women who have had a mastectomy get in their arm after they have had lymph nodes removed, in that when your lymphatic system stops moving (i.e., there's a discontinuity somewhere, or a blockage).

I am going to go see a lymphatic specialist (hematologist), but as it turns out, my mother and father both had lymphoma, my mother in the small bowel (she had nearly identical signs and symptoms for many years before that), my father of the spleen. I researched some of the causes of lymphedema, and one of them is a bowel condition called lymphangiectasia. I won't go into detail, because you can find info about this online, but suffice to say that it's something that causes fats to pour into your bloodstream (I have had high triglycerides going back to before I got really sick) and also causes you to lose protein from what you eat (I have tremors and arthritis and muscle spasms, which I have just now figured out are due to my body stealing proteins from muscles, connective tissue and myelin sheathing in its attempt to "normalize" blood albumin levels).

I suspect that fats in the bloodstream might have something to do with the sweating. The one time I had a remission (for nine to ten months or so) was when I was taking high-strength samples of a cholesterol-lowering medication. An internal medicine doctor had given me a whole bunch of them, enough to last for months and months. There was a point when the sweating suddenly stopped, and I felt normal again. How nice that was! Sadly, though, it didn't last.

At any rate, at around the same time I saw the vascular specialist I had a biopsy of some growths that I have suddenly started getting all over my lower legs. They are hard lumps that are red on the outside margin, but have sort of waxy, yellowish centers. They are hot to the touch. I am getting a zillion of them. At a glance they look sort of like infections (boils) because of their yellowish interiors. They look awful! The pathology report came back calling it a very deep granulomatous dermatitis, with three options listed (drug reaction, inflammatory disease, mycosis fungoides). The report says, "Correlate with clinical findings."

I was almost ready to say "thank God it's benign" when I happened to look up mycosis fungoides online and found out that it's another name for cutaneous T-cell lymphoma. Now, put together with the lymphatic swellings and the lymphocytic colitis, and the fact that both of my parents had lymphoma, and the fact that I keep getting sicker (I have now developed a persistent, productive cough, and the pain under my right rib is now radiating through to my back), is telling us that perhaps I do have a cause for concern, and that I am NOT just some psychotic premenopausal diabetic woman, as previously insinuated.

So, anyway, to wrap up, I don't know what other things are going on with your body, and whether it is possible that you have some inflammatory condition (inflammatory bowel, Crohn's disease, rheumatoid arthritis, etc.) causing a low-grade fever that might cause your "hot" feelings and sweating. But keep researching various conditions. Learn as much as you can about how the body functions. I have come to the conclusion that patients today must be proactive and almost do their own diagnosing, or at least come up with plausible hypotheses. However, I have also come to the conclusion that some doctors get irritated when patients "know too much" and ask questions. We are supposed to just shut up and listen, as they tell us how we feel.

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