Maiysa

Thanks Lieze, Sorry you have to deal with this too. When Dr. Goodman's nurse called the other day, she said that she talked to the doctor and to tell me that low iron is a trigger for my condition. Boy, she wasn't kidding. So true. Hang in there! The difference in me today compared to last week is really a miracle!

I know you already know my story. But in 2009-my ferritin was as low as 1 but average was 3. It's unbelievable I know, but I also had valley fever which can feed off of the iron and my blood pressure was really off. And now the valley fever is under control but am at 10 for ferritin and saturation is usually 13% or lower. But I have orthostatic intolerance and autonomic neuropathy. Not sure if that matters. Thanks for the poll. Interesting to see how many have low ferritin.

I have had a very good experience with Dr. Brent Goodman at Mayo Clinic in Scottsdale. General appointment number is 480-301-6710. They also have a full autonomic lab.

I have this too, but I also have autonomic neuropathy. It happens more if I'm anemic or my thyroid isn't regulated or I have a virus. I'm sorry you have to deal with this. Good health to you.

Thank you for the support RockiesGirl and thank you for the article derekliz. That was very informative. Oh my gosh, my ferritin is normally at 10 and can linger between 1 and 3. They tried to give me a blood transfusion 2 years ago, but I just took the ferrous sulfate and red meat and it helped, but no one told me to take the pills for three months. Within 6 weeks my red blood cell numbers became normal and they told me to stop taking the iron. But they only check my RBC. I get so upset and tell them that the low iron shows up in my saturation and ferritin. My family doctor told me that 10 is fine for ferritin-even though my blood count test says normal is 10-220-it's still borderline, but she isn't concerned. I'm so confused. Ahhhhh... I'm like you derekliz, my saturation & ferritin can be low and my hemoglobin and hemotocrit can be normal. Hmmm. Yes, it's strange that we all have iron issues. What is it? I've had this even without heavy cycles as a young girl. Also, that article said spinach can block iron from absorbing. Wow. That's crazy. I eat tons of spinach each day-I will eat it still, but not with the iron pill so it can absorb. So glad to know that now. Also, I don't take the iron with thyroid pill. I was told, don't take it within 4 hours of each other. I had thyroid schmanser in 2009, so I have to take a lot of thyroid. Thanks again!

Hi! Just wanted to tell you what happened. For weeks I was so sick. The headaches were the worst along with neck pain that my largest dose of what I can take didn't even touch. I had to stay off of the computer for awhile, it was painful to type and even laying on my pillow felt like I was sleeping on a cement curb. I was passing out just about everywhere we went. Then the numbness came in my feet and hands and the pain in my legs was a throbbing ache and it kept me up for several nights. Walking became a challenge. If I didn't eat every few hours I would start feeling flushed and nauseous. And the fatigue was more than I've ever experienced. I have not been able to drive, only now and then and I don't go very far because I'm so dizzy. Recently I have developed an intense burning all over my body. Actually, I have all of these symptoms on any given day, but somedays I can function because they are not as intense, but my husband noticed that I had not had a good day in months. But at the end of September, it got to be where there wasn't even a few good hours. I really wanted to give up. Then every muscle became very very stiff and the pain was at an 11. Walking to the bathroom was a challenge. I was so scared, so I called my local doc and didn't get any help, they just told me to go to the hospital, where they usually just scratch their heads at me, so I didn't go. Instead I called Mayo and Dr. Goodman knew what the problem was right away. Anemia. I assumed I had been fine since I was on a children's vitamin with iron and liver, but I guess after having 3 menstrual cycles in 40 days...it wasn't enough. Anyhow, I was not able to get the iron test for a week, so in the mean time I started an even stronger iron intake of 83 mg. of ferrous sulfate/iron along with a large spinach/mango smoothie and buffalo burgers everyday. I can't eat one more burger.Ugh! Anyhow, the first few days I got so sick from the iron, but within 2-3 days the stiffness and numbness lifted and the bad headache is mostly gone. Thank God and thanks to Dr. Goodman! It's been over a week and I can tell I'm getting stronger and stronger. But I just got my iron blood test back and my levels are all exactly borderline low. My ferritin is always low, but not as low as I thought. Would the iron I was taking show up in my blood that fast? I've been more anemic and never got that sick before. Can a person with autonomic neuropathy/autoimmune and orthostatic intolerance become more sensitive to low iron? Thank you for listening. Sorry this is so long. Good Health to You!

I am with Volley 9. I get serious reactions to meds and supplements, even pepto bismol can cause a severe reaction. I get sweaty, severe nausea, dizziness, blood pressure fluctuations, black outs- it's quite violent. But, this is so weird but true, if my family puts me in an ice cold tub of water, it can cause the reaction to stop. But I think next time I'm going to do what Leize says- I'm going to just go to the ER and take the pill there since I eventually end up there anyhow. But sometimes it can take 4 hours for a reaction. I also make sure I'm never alone and I always start out with a sliver of a dose and work my way up. Good luck and health to you!

I meant to post on my last reply that I went from idiopathic autonomic neuropathy to autoimmune autonomic neuropathy. My brain is so fuzzy today. Sallys, that is great advice and will look more into these supplements. I, unfortunately had a terrible reaction to magnesium, a half teaspoon, and ended up at Quick Care. My body is so reactive-so I'm a bit afraid of supplements. I did read about the alpha lipoic acid and have doing just a half dose a day=50 mg. So far so good. What does the B1 do? I will look at that also. Thank you very much for your reply. Potsgirl-I too am having so much pain lately and seems to have come with all the burning up and dizziness. I think I'm getting worse. Such a bummer. I fainted at the Apple Store today....so flippin embarrassing. Luckily my son's girlfriend was with me and was able to get me out of there. Thanks for the reply. Hope you are feeling okay too. PS I don't know what small fiber neuropathy is. Will have to check it out. Thankful-I noticed I can feel a little better with children's claritin. So I will try it tonight. Thank you!

Hmmm....I thought about the iron turning the feet black and thought, wow I am lucky to never have had that. Haha. Black teeth makes much more sense.

So sorry to hear. ANA can be elevated due to inflammation, autoimmune or medication. But there are other tests to be done to confirm any diagnosis. I have had false positives years ago before I got really sick. I hope it's a false alarm for you too. Hang in there. I don't know about the testing for mast cell and whether or not it will show a positive for that. But good question. Feel better!

Thanks for the reply Dani and Chaos. At least I know I'm not the only one, but I feel for you both. Chaos, I see you have autonomic neuropathy too, and I see we have a lot of the same symptoms. It's a challenge isn't it? I also get more of the hyper orthostatic situation. They just diagnosed me from idiopathic to autonomic, although we have no known autoimmune, I guess I'm giving all the symptoms. Also, can I ask...do you have a lot of neck pain or fibromyalgia? It seems to be kicking me down lately. Dani-that's interesting because I don't normally have the heat, but it started after being exposed to a cold or flu bug a few weeks ago and now it won't stop. I would love to be near a snow bank, but instead I'm stuck near a sand dune! Ugh!!!

Hi, I have a new symptom and called Mayo to ask if it's normal to feel like I'm burning up-I guess it is. Unfortunately, they don't think I can take the medication for this condition due to side affects. Anyhow, can someone explain why this is happening? It starts up with just the most simple startle, maybe a knock at the door or if I get too excited about something good or bad, and it seems to happen right after I eat most of the time. I have had hot flashes and it doesn't feel like this-this is very intense and lasts for a long time. After I did the QSart test, I was told I don't sweat and usually there is a little bit to measure but I had zero amounts of sweat. Anyhow, now I feel like my feet are sweating during these episodes and my kids say I feel really hot and clammy. How is this possible if I don't sweat? Any ideas would help. Thank you.

Lieze, Yes, ferritin is iron storage. Your red blood count/RBC is where the iron should come from but sometimes it steals from the warehouse/storage house first. Sometimes RBC can be normal even if your ferritin or saturation level is low. There is an iron liquid supplement called Herbal Iron that is very good too-it's a syrup and doesn't carry B12 which can cause panic for a lot of dysautonomia patients. Although, B12 is important for those who have low amounts-it helps iron absorb, but I found out the hard way, B12 can do strange things to blood pressure and heart if you don't need it. Also, be careful of Floridix liquid iron supplement-it has ALOT of B12. But that's only if you don't need it. Have you had your B12 checked? Don't worry, if you can't get the iron drip right away, you can help yourself through your doctor with supplements. There are alot of options. It sounds like you have an overwhelming situation happening. Sorry to hear. Hang in there.

Hi Lieze, I'm new to the forum & dystauonomia, but am not new to iron deficiency. My ferritin level (iron storage) was down to 1 not long ago and they give blood transfusions at 2 or 3. I refused that and the iron drip, since I can't even take a simple iron tablet, I didn't think it would be a good idea. It's been a battle for five years and mostly all of my life. If you can take iron pills, ferosol is the easiest on your stomach and take it with some form of red meat to get it to absorb quicker. I have found... and I hate it with a passion, I have to eat liver. YUCK. But the doctor told me I have no choice. But the iron in liver is 100% immediately absorbed. When you take an iron pill it only absorbs about 10% of the dose, but liver has anywhere from 10 to 18 mg. of iron and is not hard on your liver and has lots of other vitamins. Also if you eat spinach with it, it causes the spinach to absorb 300% of the total iron in spinach. So always eat liver with another iron source. I find that if I cut up bite size pieces of liver and fry it with potatoes and add a little bit of soy sauce and salt and possibly onions or onion salt, I can't taste the liver. Also, I take a children's vitamin from Target (it contains iron but not niacin which I can't take) and it carries 18 mgs of iron for wimpy stomachs like mine. Within a few days I can start to feel better. I'm anemic right now from a few terrible cycles, so I just ate the liver and potatoes. But before I realized I was anemic I was very dizzy, so tired, my legs felt hollow, I have terrible headaches, nausea and my muscles ache so bad, and it causes every symptom of the dysautonomia to worsen. Mayo told me to never let myself get anemic because it is a huge trigger for dysautonomia. Now, you might feel better in a few days, but that doesn't mean that you can quit taking the iron. Once you have depleted your iron levels it can take 3 months to a year to get it back to normal. Sometimes I don't feel anemic and then I start to feel terrible and sure enough I go to the doc and my levels are low low. So don't get too confident that it's passed if you feel better, keep up with iron. Also, buffalo burger has the highest amount of iron in the red meat category. And it makes a tasty burger. But be sure to eat some fruit and lots of water as iron can cause constipation. Also, you have to get your liver levels checked if you take large doses of iron. If you have any questions let me know. Good luck and good health to you! Hang in there.

I was diagnosed with AAN (autoimmune autonomic neuropathy) this summer at Mayo in Scottsdale. Although nothing in the autoimmune panel showed up positive, I was told there isn't a test for all autoimmune diseases. But my body will literally attack itself often from anything from food to emotions. I can get welts, sweat, get a burning feeling all over my body and feel quite sick, sort of like my body is being over stimulated and over reacting. I was told I have several unexplained issues, so it's a wait and see game for me. I unfortunately can't take any of the medications for AAN so far and the main medication I can't take because I have had a severe case of valley fever (fungal infection in my lungs) and it can be flared up from the medications that help AAN. It must be a steroid or immune suppressant of some kind. But the doctor is working very hard to help me, but no luck so far. But he is very supportive and trying like I said. I hope and pray that you have better luck than I do with the treatment. Feel free to contact me with any questions. Good health to you.

I hope by the time you've read this, that you will have already gone to the ER. Hives and a rash all over is nothing to mess around with. I had hives for a few days and thought it was nothing and on the 3rd day, I am not trying to scare you, but it went into anaphylactic shock and barely had time to get to the hospital. Now, this is not always the norm, but it's just not worth it. I can say that before this, I would just let it go for a day or so, but now I wouldn't chance it after my experience. Good luck and I hope that all is well!

HI WyomingGal, Oh, you went to see Dr. Goodman in Scottsdale. He's great isn't he. Actually now that mention it about the POTS, my situation did get better. But I didn't have it as bad as some of the patients on this site did and it wasn't my main symptom. But my heart was so messy and all over the place with crazy sweating and then not sweating. I had fevers all the time. To say the least, I was sick. But I had a toxic thyroid which is possible that it was from the severe lung infection I had a few years prior. I was told it wasn't the thyroid schmanser that was making me sick, but the toxic thyroid lobe on the opposite side. Everytime my thyroid released, it was putting poison into my system. It was left untreated for 2 years or more. I am a thin girl and I lost about 17 pounds. Within hours of having my thyroid removed, I looked human again and gained all my weight back within a few months. My heart is much better, but I still have some days where it's messy, but not like it was and the not being able to stand up, got much better-but I still have the severe black outs occasionally. Unfortunately, I still get pretty sick on some days from the autonomic neuropathy. But I just felt better overall getting rid of the thyroid and my fevers have cut down alot! We obviously have different situations, so I don't know if it's going to fix your POTS issue, but it would be nice if it did. I will keep you in my prayers for that. But I think you will probably have more energy with the medication since you are hypothyroid. Fixing hypothyroidism can also help you feel better mentally. Some people get a little depressed with hypo. So there will be some positives for sure, some I forgot to mention. I feel terrible that I can't give you more on this and wish I could tell you it will fix the POTS, but I'm not sure about that. Please keep me updated as to how you are feeling. I hope they told you it can take a few weeks to notice a difference. Did they ultrasound the goiter to make sure nothing bad is in there? Did you have to have a biopsy with this condition? So sorry you have this on top of everything else. PS No I didn't see the Big C with Laura L. Does she call it schmanser? Schmanser sounds way less threatening and makes me feel better. haha.

Thanks AZgirl, I will look for your old posts. I'm sure you don't feel too great right now with what you've been through this week. Feel better soon. Thanks for telling me what SFN stood for. It's all new to me. Thank you. Naomi, I'm sorry you're having the trouble you are having. The doctor wasn't sure what tomorrow brings for me. But I've been reading a lot about alpha lipoic acid. I'm drinking the natural and organic smoothies and adding the alpha lipoic acid. I only drink a small glass daily as too much elimination can make me feel woozy and those vege/fruit drinks can do that. I don't know if it's going to work, but I keep telling myself it will. We will see. What did help with my nausea and a few other mild symptoms was to eliminate wheat. That was hard to do!!! I gave up after 4 days of not seeing any results. haha. But then read it could take up to 6 weeks to feel better and they were right. IT seemed to help a bit with the dizziness too. I am having terrible anemia right now, so the dizziness will be back in a day or so, and am back to craving a good wheaty donut! I go back to the Doc at Mayo as soon as I can, and I will ask that question as to what hope he gives this. I never asked because I didn't want to know the answer. But he did say he wasn't sure which way this was going to go. I didn't want to know any more-cause me's a chicken.

Thank you so much for your post AZ girl and Mack's mom. AZ.. so sorry about the IVIG and the headache. Also sorry to hear about the Lupus. My best friend has it, I know it's not easy. Since she was first diagnosed, ten years ago, I'm happy to say, she is doing better than ever. I hope the same for you AZGal. But I know it's not easy. Wish I could make it better. It's a tough journey isn't it? Thanks for asking all the questions Mack's Mom, they are good ones. I did have a tilt table test, but was negative which didn't make sense since I passed out all the way to Phoenix from Nevada. I even ended up in the hospital from the drive in Kingman...but the tilt table showed nothing. Go figure. I did the EMG?? test 6 years ago before I got sick and that was semi abnormal but nothing to worry about. I have not had a skin biopsy. I don't even know what that is. Hmmm. Before Dr. Goodman I had extensive blood work for 5 years after a terrible bout with Valley Fever. Mayo did the Qsart test which was abnormal, so he did another round of extensive blood work to find the cause of autonomic neuropathy and nothing showed up. I remembered that i had burning in my spine during the valley fever. So he ordered a spinal tap to rule out meningitis. Ugh!!! Thank Heavens that was negative. So it was concluded that the valley fever damaged my nerves and autonomic nervous system. I was never the same since the day I acquired valley fever- It wiped me out. I was having a lot of mild autonomic issues since I was a little girl but nothing that took me down, except the occasional black outs every few years. Which we are still trying to figure out what they are-since my blood pressure can drop so low I can have a seizure, but not often. One neurologist here called it Dysreflexia. I'm pretty new to the diagnosis-so we are still working on it. Dr. Goodman did say that I have some unexplained issues going on. They called today and told me to come back down when I can. Our insurance doesn't cover Mayo, so I will go when I can. He has been great about only ordering tests I can afford and trying to do the majority through my insurance carriers. May I ask who you are seeing AZGal? Sounds like you're in good hands. Also, Mack's Mom, I have low...IGA? I can't remember, it showed up on a celiac test. I have wheat gluten sensitivity and the IGA?? showed up low. My family doc said I am susceptible to infections. So weird that you have the same thing. Hmmm. We all have the same issues. I guess it makes sense. Wish they knew more about this stuff. Good health to you girls. Thanks again.

Hi WyomingGal, I just wanted you to know that I do take Levoxyl. I was taking 125, but am down to 88. I had thyroid schmanser, (I don't like the c word) so I have to take it to keep my TSH levels at hyper level, to keep the thyroid from growing back after I had it removed. I'm telling you, I can't take any meds, not even pepto bismol, flonase, children's allery pills, or vitamins, but I did fine with the levoxyl. I gues your body naturally produces it, so it shouldn't be too hard on it. The only thing with thyroid medication and POTS, I used to have a case of it for a year or more, now I only have occasional orthostatic intolerance, but you don't want to get too hyperthyroid as it can mess with dysautonomia. It won't happen right away but gradually. I can tell when I'm taking too much thyroid medication, my heart gets a little racing and I get hyper. But now my endocronologist is trying to taper me down to a more normal thyroid level, he said it can worsen my autonomic neuropathy symptoms. Does your dysautonomia doc know about the thyroid meds? And vice versa, does your endo know about the POTS? I also notice if I wait the entire hour to eat after I take the medication I get too shaky, so my doc has me eating about a half hour after I take it. My body is very used to it now. But I did get a little shaky at first, but nothing too out of the normal. Just eat if that happens. I'm down to mostly just protein for breakfast since any sugar made it worse. Feel free to ask me about any thyroid issues-just learning about dysautonomia. I hope this helps.

Maia and Mack's Mom, Thank you so much for your replies- very helpful! Yes, alot to wrap my brain around. Maia, the article was very informative, now if I can just remember it. And you are right, I think I did put a semi question in there about my severe black outs-one neuro is calling it dysreflexia. I will save that for a different post-It gets so complicated. Sorry about that. Back to the POTS question-that does clear things up. I thought people who had POTS just autonomatically had Autonomic Neuropathy or vice versa, but I see it is a form of Dysautonomia. I'm trying to keep it all straight., wish me luck. Mack's Mom, yes, that's the word I was looking for-orthostatic intolerance. I have it, but didn't know exactly what it entailed- your quote of it being an umbrella makes sense to me. Thank you. I have had a slight form of dysautonomia since I was a little girl and at 42 developed a sudden onset of Autonomic Neuropathy that came along during a terrible lung infection. My auto neuropathy is the autoimmune type. I took all the tests at Mayo and am thankful that I didn'tt have any of the causes you mentioned. So my autoimmune source is unknown. I was told that there are several autoimmune disorders that are undiscovered. But they believe the Dysautonomia was intially started when I was around 8 after a severe stomach infection that landed me in the hospital for quite a while. After that I fainted occasionally and had more health problems. I never thought I would be here talking about it. We never know where life will take us. And I'm so sorry about your son. This has to be terrible for the little ones and the parents. I don't know what GI neuropathy is, will have to look it up. Thank you both!

Hi All..I'm new- so I have so many questions. Can someone tell me the difference between Autonomic Neuropathy and POTS. They seem to be similar. I don't faint as much and only occasionally. Sometimes my fainting turns into a full black out and I can turn blue. During the mild ones, I just look drunk. (my local neuro thinks it's a form of dysreflexia-but I don't have a spinal injury, so I don't understand it) Anyhow, is orthostatic hypotension and orthostatic hypertension the same as POTS? I can sometimes stand for a while, but if I'm not well, I can't-my blood pressure goes up not down. Thank you!

Thank you Issie. I will definitely have to prop myself up when I sleep when I'm feeling like that. I did better last night. I also have a bit of hyperthyroid, so that might be doing it also and my husband reminded me that I took a bit of B12 earlier that day. It's mixed with my iron. Sometimes it affects me and sometimes it doesn't. I'm sure that didn't help. I only took a tiny 1/4 teaspoon of the iron and there wasn't that much B12, but enough. It's definitley an adventure everyday to see what my body is going to do next.

Thank you for the welcome Tinks. Wow, that is strange for you to have that happen to your arms in the middle of the night. Hmmm..that's a head scratcher. I hope you can find out what is happening to you. But thank you for you reply.

HI Shoegal, I had 8 bariums in 2 years, sometimes my body would react and I would get rid of it instantly and it would be white. But sometimes it would hardly have any change of color at all when it would take awhile to get rid of. They say you want to get rid of it as soon as possible since it can be toxic. I ate lots of lettuce and drank a small portion of smooth move tea. It usually helped.