LindaJoy

Thanks, everyone, for your responses. I appreciate the support and suggestions. Yes, acromegaly is the thought, but I passed the GH suppression test, so my endo doesn't know what to think. My IGF-1 continues to be high, there is something funny going on with my pituitary shape and size (it's been called bulged, domed, prominent, enlarged, with a deviated stem), and I have symptoms, but he says if the suppression test is normal, he just doesn't know what to think, so I'm being sent to Cleveland Clinic's top pituitary doctor. That makes me nervous, as I've never had a good outcome on anything at CC. I read a study that showed that 16 out of 18 people with acromegaly passed the GH suppression test, but I guess these endos are sticklers for textbook. Anna, I've never heard of MEN 1. My docs have never said anything about it to me, I guess because mine think my problems are all in my head, literally, with whatever may be wrong with my pituitary (tumor, most likely). I'll have to google MEN 1. Thanks for the information. Again, thank you all. Take care, and Happy New Year. Linda

It's so funny (not funny ha, ha) that this post was here, because I, too, am feeling so heavy this Christmas. In fact, just got home from my mom's, and it was absolutely horrible. My family doesn't get along, and I usually don't go to Christmas (many years, I've been too sick or even in the hospital at Christmas), but this year, I thought things might be different. Everyone's older, maybe they'll all get along. No, it didn't happen, and my husband and I were right in the middle. First thing, my daughter tells me off because she tried calling my cell phone, but we never heard it ring. Then, I ask my brother to say grace before everyone eats, and I get told off about that (he apparently didn't want to say it). Finally, my nephew gets snappy with me, and that was it: my husband went off on him. My nephew threatened to leave, my daughter took my nephew's side, my mom didn't know what to do and was wringing her hands, I was bawling, and that of course made me really sick (I have Addison's and can't take stress), and it just went from there. It was awful. I feel so alone right now. I'm mad at everyone: my daughter, my brother, my nephew, even my husband, who finally stood up for me, but it made things worse. I just want to crawl in a hole. I understand when you all talk about being sick and how it's made it hard to stay close to people and others just don't get it. I've gotten distant from my family, but maybe that's a good thing. I don't know. It sure makes for lonely holidays. Take care, everyone. Hey, a good CD to have, I got it today from my hubby for Christmas, is the Susan Boyle CD. She talks in so many of her songs about getting through life. It's great inspiration, commiseration, you name it. Love to you all. Lindajoy

Thanks, Firewatcher. I have a pineal cyst, too. Took it to a neurosurgeon and he said it was nothing to worry about. Yeah, I thought my pituitary looked "blobbish," too, not like I saw in other MRI's I found on the internet. Hmmm.... My first endo, years ago, showed me a distinct tumor on my pituitary. Then, a few years later, he said it had a coating on it and didn't know what that meant. Then a few years later he said that the tumor was gone but that the pituitary was now bulged and didn't know what that meant (guess I should have found someone who knew what these things meant). Now, my docs have all used the words "bulged," "domed," enlarged," "deviated," "prominent," to describe my pituitary. I guess all agree it's a bit too big, and with all the other stuff going on--high hormones, growth hormone being the most serious (my feet and hands are growing, plus I'm getting some pretty good migraines and jaw pain) and other symptoms--maybe I'll soon have some answers. I sure hope so. Thanks, again, and you have a good holiday, too! Linda

Hi, everyone, I haven't been here in awhile. It's always nice, though, to come home to this place for support. I hope this finds all of you doing well. I've been doing okay. I think I told you last, that I have Addison's disease. I've been dealing with that for months and doing okay with it. Now, my endo thinks it may have been caused by a pituitary tumor that I've had for years but has gone untreated for awhile as it no longer shows on MRI's. Long story short, the tumor may be "hidden," becoming as dense as the tissue around it, yet still active, so it doesn't show on MRI's but still wreaks havoc. That havoc is that my growth hormone is high, I have Addison's, glucose intolance, dysautonomia, you name it. Should the tumor be there, I may need surgery to remove it. Anyway, I've downloaded four MRI pics of my pituitary gland. I've had sooo many differing opinions about it by radiologists and endos over the years, that it's driving me nuts. While they all sit and wonder what it all means (symptoms, hormone problems, odd blood work, illnesses, MRI abnormalities), I continue to have health issues. I want it to all just come to some conclusion. I will leave my address of my pituitary pics, so that if any of you can read pituitary MRI's, you could take a peak and let me know what these people are talking about when they say my pituitary looks enlarged, or bulged, or domed, or that the stalk is deviated? My pituitary measures 14 mm, and I read that it's only to be 10 mm. The dome apparently is on the right aspect, wherever that is. I'm really confused and can't see where my pituitary looks all that different from some I've seen on the internet, yet it does look a bit bulged. Thank you, all who take a peak. I appreciate it. And, happy holidays to you all. Lindajoy http://s1017.photobucket.com/albums/af299/lindajoy17/

Hi, again, In all honesty, my nephrologist never found the cause for the kidney problems. I think I go in and out of kidney issues due to my malnutrition, Addison's and dehydration issues that become severe at times. My kidneys are really responsive to all of this. I hope you get some answsers soon for all that's going on with you. Linda

Hey, Firewatcher, you sound like me. My hematrocrit usually runs 47.5, my hemoglobin 15.8. In January, both were low. Weird. I have kidney problems (was in failure for six months last year), so that could be it. Thanks for the responses. Linda

Hi. Just wondering if there are other causes for high hematocrit and sometimes elevated hemoglobin, other than polycythemia vera and dehydration? Can autonomic dysfuntion cause it somehow, or can it be a part of POTS? Thanks. Linda

Hey, Miriam. Good to hear from you. Hubby's not well. Looking at Hemochromatosis. How are you? Would have called the prescribing doctor today about all this, but he's out of town and the doc covering for him knows nothing. So, we called my neuro who seemed to know more about the vitamin's effects than the prescribing doctor. I'm glad he's in on it now. I went over and had a B6 test then, so we can get a base-line. I think that was a good move. Take care. Again, good to hear from you and hope you are well. Linda

Hi, again, I'm sorry to bother you all again about B6, but I wanted to tell you what's going on and see what you think. My husband just spoke with my neurologist (hey, I found a good one!), and he said he's heard of the symptoms I'm getting with B6. I'm wondering if any of you have. The symptoms are getting worse, even with lowered dosages (I'm currently just taking 12.5). The neuro said to stop it, and I'm going for a B6 blood test today. (Icthus, I got the idea for us to call my neuro from your posting stating what your neurologist said about B6. Thank you. I wouldn't have thought to call him otherwise, and he's been a big help today.) After taking it, I have severe muscle tightening in my chest and shoulders, making it hard to breathe. My throat feels tight (not swollen, and I can still talk fine), and my tongue feels tight (not swollen). I have terrible GI problems: heartburn, throat and tongue burning, stomach pain, chest pain. I have headaches and feel fluish. I was up half the night, can't sleep. I get anxiety, bordering on mania and paranoia. I get very ansy. My eyesight goes off, blurry. Ramakentesh, my bp goes up when I'm having these symptoms. My feet turn cold and blue, and my hands are cold. My feet get clammy, but I'm not sure about my hands. Anyone ever hear of these things with B6? I have never taken vitamins in my adult life, so I know absolutely nothing about them. Thanks. Linda

Hi, again, I've continued researching B6 and found that it also increases serotonine and norepinephrine levels. Can this affect POTS, trigger episodes? Linda

Oh, and the B6 that I took was made by my compounding pharmacist. It's actually a liquid, nothing added, just C-pyridoxine and pure water. Linda

Thank you for the responses. We called my pharmacist today (he's a doctor of pharmacology who specializes in the endocrine system), and he said that B6 stimulates the adrenal glands. I have Addison's Disease and have little to no glucocorticosteroid function (that's why I have to take hydrocortisone three times a day), but I can still produce adrenaline. He thinks that the B6 is stimulating my adrenal glands (and I've seen, all over the internet, that B6 does stimulate the adrenal glands and is used in adrenal fatigue a great deal), and since they can only produce adrenaline, that I'm having rushes all the time. Very uncomfortable, scary, and debilitating. He thinks lowering the dosage may help. I'm on 50 mg right now, the dosage they use for people taking Isoniazid. Thoughts about what my pharmacist said? Linda

I have problems with vitamins. I have to take B6 with one of my meds. I had to start it yesterday. After taking it, I developed a bad headache. In the night, I had a POTS episode. The pharmacist said that B6 is for nervous system health. Anyone had any negative or other experiences with it with their POTS? Thanks. Linda

Hi, Mack's Mom. Thanks for the Doxipen suggestion, but I can't do it--I have long QT syndrome, and it's on the bad list of meds that could kill me with this condition. Linda

Thanks, Flop, for the response. What is the connection between MCAD and your POTS flares when coming down from steroids, if I might ask? I've never heard of a relationship between these two (heck, I'd never heard of steroid withdrawal syndrome until today, and I've been experiencing it for years), and I have MCAD. I'm sorry your luck with the immunologist was lousy. That stinks. Take care and I hope this finds you doing well. Lindajoy

Hi, everyone. Quick question. Weaning my steroids. Having tachycardia. Is that "normal" with steroid-withdrawal? I have a lot of other symptoms that I can find in my research of what to expect with steroid withdrawal (abdominal pain, headache, tremor), but I can't find tach, and I'm in it, alot, today, with palpitations. Wondering if I can contribute this to the steroid withdrawal. What's weird is, it starts in the most when I drink water. Thanks in advance, Lindajoy

Hi, Nina, Your dad will certainly be in my thoughts, prayers and on my heart. So will you. Keep us posted. Lindajoy

Actually, I've gotten literally hundreds of opinions over the years, and the latest opinion, the one who has me on this limited diet right now, is one of the world's top allergists/ immunologists, believe it or not. She's at Boston's Brigham and Women's. She's not saying my diet is healthy, by any means, just that this is what I can eat, without having to go to a TPN line, which I've had and gave me blood clots, or elemental formulas, which I've been on and couldn't tolerate, and without anaphylaxis. As I said before, we were trying new foods two months ago when I began having Addisons symptoms. My diet was put on the back burner after I went into crisis and nearly died. Now, it's been found that I have TB and will start medication for that this week. On top of all that, I am on such high doses of HC that I've gone into Cushings, and we're concentrating on lowering the HC, which keeps sending me into adrenal episodes. I really wasn't posting about the potatoes to discuss my diet. I know it's absolutely, totally unhealthy, but it can't be helped right now. I was just wondering if anyone had ever heard of solanine poisoning from potatoes, and if you had, if you believed in it, or if it was hype. Thanks. Linda

Hi, again. While in hospital, a neuro was called and some tests done. He looked in my eyes quite thoroughly, but didn't say what he was looking for. So, we called him to come back in to see us last night before I left the hospital. We talked with him about intracranial pressure specifically, and he said that's what he had in mind when he was looking in my eyes. He saw no swelling, and he was also looking for my blood vessels to be pulsating (I guess in 80% of IH cases, the doctor can see pulsating vessels in the eyes), and he saw none. He said he's not saying I don't have it, because I am at risk due to the high steroids, and at risk because I'm weaning, but if I do have it, it's mild to moderate. He wants to continue to follow me, and I see him in two weeks. He mentioned a spinal tap to be sure, but he's fairly convinced that my symptoms are from the high dose steroids. Thanks for the postings. I do want to hear people's experiences with this, so please, let me know if you've experienced this and what your thoughts are. Thanks again. Linda

I was diagnosed with POTS back in 2005, and yes, I suffer with postural hypotension and tach. Some are saying it's from the Addison's, but it's still POTS symptoms, so... The intracranial hypertension comes, I think, more with the high steroid use, and with withdrawing from it when you begin to wean, which I'm doing, than from Addison's, though many in my support group have it, but we're all on steroids. So, which came first, or is a single condition, I don't know. Is it the Addison's or the steroids? I talked with a specialist on it yesterday, and he said it's probably more the steroids and weaning, causing the condition, than the Addison's, as steroids are one of the risk factors for IH. I'm sorry I don't know more. Thanks. Linda

Thank you, everyone, for your suggestions here. Yes, I've tried over foods lately, and I did have some major problems, so it's back to only lamb and potatoes. Pre-Addison's, we were working on this. Hmmm... I didn't know that about microwave cooking. I seem to be holding my own with potassium, which is a blessing since the hydrocortisone can sap it pretty quickly, so is that a good indicator that the potatoes, even though I nuke them, are still somewhat nutritional? I am so lame at so much of this. Too, it's been found (did I tell all of you this?), that I have active TB somewhere in my body (did that new Gold standard blood test). I've tested positive for years, through that skin test and I have calcified granulomas in my lungs. No doctor ever seemed concerned, so I was never concerned, until my new pcp, who is infectious disease, nearly choked when I told him, "Oh, by the way, I test positive for TB." "You WHAT??? And, you're on steroids!!!" Anyway, I have it, have to begin treatment this week, and my doc thinks this may have caused some, if not many, of my health problems. We're reading that it can cause Addison's, autoimmune urticaria, things I am suffering with now, oh, and if it's centered in your GI, it can cause all of the pain, diarrhea, bloating, malabsorption, etc., that I've been experiencing. I never knew. I have fluid in my perinteal (??) cavity that shows on CT scans all the time, and this can be indicative of GI TB. (The docs never knew why I had it and pretty much ignored it.) A lot going on. Anyway, again, thank you for taking an interest in this question. I know it's bizarre, but I have to explore all possibilities right now, and blessedly, I've found a doctor who is willing to look at things with me and not blow me off. Take care, Linda

Hi, Thankful. Thank you for sharing your mom's experience. Yes, boredom is the norm with this, I think. I don't eat for enjoyment anymore, that's for sure. What other starchy foods can she eat, may I ask? I'm wanting to try a few new foods and am looking for suggestions. Thanks. And, thanks to all who wrote. I appreciate the suggestions. Yes, a rotation diet would be good. I'll be talking with my doc soon about it. Linda

That is awesome! I'm a writer and have written for the local paper and some local magazines, but every writer's dream is to write a book, and YOU"VE DONE IT!!! Congratulations!!!! Good luck with the sales, and don't spend all your money in one place. Oh, that's an old, bad joke, I know. Lindajoy

Hi, everyone, Well, here I am again. My Addison's support group members are concerned that, due to my high dose steroids and with my symptoms, that I have intracranial hypertension. In all honesty, after reading up on it, I think so, too. The pressure in my head becomes unbearable at times, with headache, vision disturbances, etc. Those of you who have this or have had it in the past, could you tell me your experience with it: ie, symptoms, treatment, if any, how you are now, what caused yours, etc? This group has me terrified (not meaning to, just concerned) that I am going to have a stroke or am at risk to die with this. I and my husband have been researching it, and the most we've found is that it can be horrendous, symptom-wise, which I know, and can cause blindness. Can I die from this? We're trying to get the neuro here to call us back and address this concern, but we all know how that can go at times. Thanks. Linda

Sophia, I have a mast cell disease, and my major reactions are to all foods. I can only tolerate lamb and potatoes right now. It's all I'm allowed to eat, per my mast cell doctor in Boston, until I get situated with the Addison's and we trial other foods. Trust me, it's not by choice. Linda