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Hello I’m back! I finally finished my thesis all the while struggling mightily with my EDS!
I recently started reacting again to meds prescribed by a new endocrinologist. I thought I was getting hives, but the Dr. said it was acne and my MD said it was Acne and so I threw a mini fit and demanded a referral to see a dermatologist. Within a minute of looking at my skin the dermatologist said I had dermatographia and suggested histamine blockers. Due to reactions to some meds we settled on Claritin 2 x a day. I was almost speechless and in tears simply because the Dr. never even questioned the fact that I was having reactions. I have been so much better. Unfortunately I am unable to take any of the acid inhibitors due to severe restless leg like pain. I do not have restless leg symptoms unless I am on GERD meds. Amazingly I have not had even 1 incidence of heartburn or gerd since I began the Claritin 2 x a day sometimes I have gone up to 3 x a day. The suspicion is a mast cell issue in my gut. My IBS symptoms have also been relieved. I have gained a few pounds, but attribute that to switching diabetic meds not the Claritin.
Now I can work on my diabetic meds, the parathyroid/ thyroid issues, the low vit d and help for my low energy!
I am taking a VIT D3 liquid that I seem to be able to handle well if I take it every other day. At least the first week looks good. Here’s an interesting link regarding parathyroid issues. Certainly no endorsement just some alternative information that I’d like input on. http://parathyroid.com/
My magnesium levels always test okay, so do my son’s, but I’ll do some research.The zinc made a big difference.
It sounds like you are one of the people that gastric bypass went wrong for. Do you suspect your EDS may have had something to do with the outcome? I know that is a very complex question. If it is too big to answer, I get it. A simple yes or maybe will suffice..details if you want. Thanks again and hang in there..Thinking of you “being infused with health”
I also wanted to ask about parathyroid tumors, anyone had any removed? One Dr suggests looking for a tumor even if the levels seem normal another says no. I have found some pretty convincing literature that suggests the surgery is almost micro surgery and that many people with no sign of tumors(benign)even with ultrasound still had tumors and felt better when they were removed. The suggestion is that the tumors inadvertently cause the vit d to drop not the other way around. Any thoughts?
I suggested IV therapy to the endo, but he was not familiar with it and wanted me to check with my specialist. My insurance will cover IV therapy 100% and prescriptions at much less and I’m fine with needles. I do much better with any med I can get IV rather than the stomach upset or headache that goes along with ingesting meds and /or supplements. I have severe edginess and cardiac difficulties when I take the rx 50,000 units of vit D. I am now trying a liquid drop it seems to be much better although it does cause heartburn and reflux symptoms. The endo is concerned about secondary hyperparathyroidism, he has scheduled a bone density specifically of my left arm, he wants to check for osteoporosis.
Does temperature especially heat intolerance fit into this scenario? I am a well controlled diabetic( 15yrs as a diabetic and just started meds. Diet control worked for me) and I am about 20lbs heavier than I should be, but it’s all in the middle as expected for a diabetic. I think all of this is tied to hormonal systems that my body just does not handle well. I also have PCOS post hysterectomy with no supplemental hormones and do not have migraines any more or severe flares of ovarian cysts. If anything makes sense to you please share. This is genetic and my son has been on 50,000 units vit d for several years and he’s 22.
I recently added a zinc supplement and have noticed a dramatic change in my skin and hair. I don’t get compulsive all over itchyness anymore and my rashes have gone away. If I can get a handle on fatigue I’ll be thrilled. Thank you for the info,
Hello, I was just tested for Vit D again and it is very low. The Endocrinologist thinks my parathyroid is acting up because of the low vit d. Anybody have any thoughts on that? I do have absorption issues and I’m diabetic with lots of food allergies. I do feel better since adding antihistamines. I couldn’t do zrytec due to allergies to some ingredients. I’m using an generic Claritin that has fewer additives. I am much less constipated after a week or so..we’ll see if long term use makes a difference. My stomach certainly has calmed down and I’m on a low dose, so far so good.
My son and I have EDS III. We both have very low Vit D. He takes supplements fine. I have had a very hard time with Vit D supplements. I have severe cardiac “craziness” ..palpitations, pains, breathing trouble and overall feeling of having taken a bucket full of amphetamines whenever I take anything over 3000 units. My reaction alone makes me suspect an absorption problem. At first I eliminated all additives etc and tried Vit D drops I still found that I felt lousy with anything over 1000 u and felt crisis level/ go into ER awful with anything over 3000. What kind of Vit d etc. made no difference for me. I think the connection has to be there…
Because of my sensitivities to meds. I went back through my notes and looked at meds I have tolerated well. I have used Promethazine for migraines and nausea and several times when my stomach just went on strike…and I could not keep food down.(.Usually due to a reaction and then the cycle is hard to break.) I am drowsy if I take a mid size dose, but feel very rested if I do sleep and have absolutely no brain fog afterwards. I know that promethazine does not block the release of h1 but I think it interferes? Is it possible that this med could work like zrytec? I really would like to stick to something that I have used well. The inactive ingredients can be as big a risk for me as active..
I always thought the lack of brain fog and stomach issues after this med was just my body breathing a sigh of relief after a 3 day vomiting and migraine episode. I now wonder if I was actually experiencing my brain in a more normal state due to the meds. I also notice that I can handle the heat better and my sugar levels are more stable. I did check for cross reactions with my meds and there isn’t a problem. I have a current rx for Promethazine for nausea, but would not start using it daily without checking in with my Dr. I want to have good info before I pitch my case to him.. lol Thanks again for the opportunity to brainstorm.
EDS III, POTS, PCOS
I bet we are getting to a hormone link.which is the only thing all my varied symptoms share. If EDS, no matter which type impacts those parts of the “relay” system then it makes some kind of sense…?
newbie I have been writing my own grants and self creating jobs the last several years. The stress of not being able to control my own environment…no chemicals etc and having to be diligent about educating others at work was exhausting. Having to work an someone else’s schedule ie mornings was awful.
I am working on my endo about thyroid connections. I too have nodules and some of my levels are okay and some not. I don’t think this Dr is going to be a good dr to problem solve with, but He is great at testing and looking for the outside the box connections..So I am getting information that I can hopefully take to my specialist.
I had an acupuncturist from China turn me down as a patient because she thought I would be too sensitive for the treatments..She wanted me to start treatment when I wasn’t flaring. My TB tests always look positive at first because of my ” prick me and I will get a wheal” tendencies..
Controlling the stress that comes at us is crucial. So hard with family. Sometimes distance is the only answer.
Newbie We are extremely careful about natural occurring high levels of MSG. I show significant allergies to the broccoli and nightshade veggie groups among others. Turkey is a huge problem..Organic chicken not much. Mushrooms are okay because we don’t have large amounts when we do eat them. I would say diet is the biggest challenge about my life with EDS. From early childhood it was clear that what I ate could be a problem..I now think it’s not the what as much as
just my whole leaky gut and endocrine problems. My diabetes and early life hypoglycemia seem to complicate the food issues beyond..allergies.
We also have noticed that my son who has significant scoliosis and skeletal problems can have tremors when he is cramping up etc. I do not ever have tremoring. I do have balance problems that stem from similar muscle tension issues. I have an “stop and chill” routine. Every two hours I stop whatever I am doing and do some relaxation breathing..just to keep from tightening up. I do have to over compensate for my looseness so then I have to recompensate for that!
Bearcat..I will take a look for the study. Thanks for understanding why I feel the need to post those statements about being cautious about using meds. I always worry about someone being desperate and sick of Drs. and reading something like my post and making themselves worse. It’s the “middle school teacher’ in me.lol
I have lived the progesterone/estrogen conundrum. At this point I’ve had a hysterectomy and find I am better off with no hormonal support. It’s always a trade off. My androgens are high due to Polycystic Ovary Syndrome POS, but those symptoms are preferable to me than others. For younger women in the throws of PMS issues getting good support from an EDS knowlegible doc is crucial.
I too suspect that “my brain” is always a little waterlogged lol and so a little onslaught becomes a big cascade.
FYI I am meeting with a group of EDSers today in Mid Michigan.We are starting a group. I will direct people to this site.
I am having the worst time spelling and typing this week..and I can’t get spell check to work in my posts..so sorry!!!!
My son has that tall lean British Rocker look. Add in his brains and his 100 lb mobility support German Shepherd Lucy and the girls fawn..and he says he’ll consider dating when he’s about 25 and girls have chilled out. No drama for him!
The sense of humor is key to our resilience. My father and his sister both lost their sight to hereditary early onset Macular degeneration. They were both in their 20’s. I suspect EDS has something to do with it also. Our family uses humor to deal. Our blind leading the blind jokes are hilarious to us and hopefully not too offensive to others.
When my son was being tested for Marfan we were making lots of giant and alien jokes. One day that week I went to look for a missing cat of ours at the Humane Society. When I walked in there was a big cage with a big sign that said special needs puppy..can only be placed in special families..I laughed out loud because that’s how we got Macintosh our 3 legged Border Collie. No one would take him because he wasn’t perfect…You can imagine how quickly my kids said he’s the one! So I looked in the cage and lo and behold there was an Australian Cattledog puppy with dwarfism staring back at me. She was one of two dwarfs in a litter of 6 puppies. It was such a rare phenomenon that MSU Veterinary College did a complete work up on her. The prognosis was that they had no idea what would happen internally as she grew or how damaged her legs would be. She went home with me that day and I handed her to my son and said I thought if you were going to be a Marfan giant you should have a dwarf for a canine best friend. By the end of the evening she had been named Qubit..a small unit of measurement and something else in physics I don’t understand lol. So our sense of humor and a healthy dose of animal therapy has been how we cope. When my son got his diagnosis and there were serious concerns about his mobility he decided to get a puppy and train his own service dog. What an amazing way to cope. That’s that driven thing I see in EDSers..when they have a plan look out…
So life gets lousy and medical bills get high, but there is always a joke around here and you can’t help but smile when a 3 legged Border Collie and a dwarf Blue Heeler decide to play tag.
Your theory on “Endrocrines gone wild” is why I’m here I was on a research binge and found some of your info. I have it printed out in triplicate for my specialist who is a rheumatologist who encourages me to bring in information for she and her staff. If anyone will help me go forward on this it will be her. I don’t think we will be able to take Diomax due to sulfa allergies. I am checking with our pharmacist for any counter indications and crossover problems with Zantac/Zyrtex and my diabetic meds. I have a med mix at the moment that is good for me..but if I have a flare not much helps and I am totally incapacitated for awhile. I began taking phentermine a couple years ago based on a study I read out of mayo clinic. My pain levels were off the charts and I was reacting to everything. The idea was that it might work as a central nervous system analgesic for some people. READERS NOTE THIS IS A DANGEROUS DRUG >>DON”T READ THIS AND THINK TO TRY SOME. It is a controlled drug and can be addictive for some people. I did not have any of the heart issues and blood pressure problems that are not good with the drug so I was able to try it. It has been good for me, but I won’t even let my son consider it. It is also one of those drugs that can cause serotonin overload. I think it somehow helps me with the “lowering of pressure” you speak of. The difference with and without it for my POTS and fatigue is amazing. It would be great to go off a med like that if Zantac can help.
FYI I have requested my son’s head measurements from my doc. Crossing my fingers that they have them
See, That’s where I get in trouble. You need a detail. Msg turns into ? I’ll have to go with the bigger picture that I do understand. lol. Monosodium glutamate, and nutrasweet/ aspartame (oops those might be brand names) have properties that are called excitotoxins. These things go in and effect brain neural cells like jiffy popcorn kernels on the campfire.( Sorry I think in pictures!) The neural cells excite themselves to death. EXCITOTOXINS THE TASTE THAT KILLS is a book that was written by a DR. Dianalike doctor who’s name I can’t remember. His father had Parkinsons and he became driven like Dr. Diana to research the disease connections that effected his family. The book made the connection for me regarding brain fog after eating. Then I learned that Mayo clinic was recommending that MS patients and I think stroke or neuro patients avoid the sweetners in diet foods. My son and I have nearly immediate neurological symptoms if we ingest a “diet” food. My balance goes immediately. His tremors worsen and I cannot work through a number based or direction involved question. It is as if that part of my brain has been disconnected. It used to be so bad that we would get severe headaches and I would have trouble breathing. I almost always had flushing and hives. My son had agitated irritated cranky behavior..very unlike him. Very much like I can get if my sugar gets too low.SOOOOOO as I have begun exploring mast cell issues I was wondering if there was a connection. Your word “trigger” was perfect. I’m not sure who to ask or how to find out. This is where I loose it..those scientific details..I’m always missing one piece of the details so can’t ask a direct simple question. If you can translate the question for me I will start digging!Thanks again for offering the space for a research junkie like me to brainstorm.
I can so relate to your notes about hormone involvement. I have poly cystic ovary syndrome with my EDS and type II diabetes. When I finally got the EDS diagnosis my Drs. agree to a hysterectomy that I had requested 3 or 4 years earlier. The day after the surgery I felt better than I had in years. I have not had another migraine since and I was a frequent flyer in my local ER. It’s been about 7 yrs since and I have had a bad 6 mos, but still am better at 52 than I was at 20 yrs.. though when I do get bad I go down quicker and stay down longer. My endocrine issues continue to plague me..but I’m on it! This site will make that adventure much easier!