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I was reading some of the replies under dermatographia and there was a comment on hormones and EDS with possible links. Both my son and I have been diagnosed with EDS type 3 but suspect it may be borderline classical. Both of us also have Vitamin D 25 Hydroxy deficiency despite taking Vitamin D3 (Cholecalciferole) supplementation. My sons levels are 21 on 50,000 IU daily and out in Mid day sun for 20 min daily no sunscreen and mine is 16 on 150,000 IU daily and can not be in sun as I have sun sensitivies and rash swelling right arm gets worse. With me I also many other vitamin deficiencies so in a week start IV multivitamin infusions with extra vitamin D, C, and calcium because my serum ionized is also slightly low. I do have secondary hyperparathyroisism but PTH levels are 110 and not responding to Calcitriol.
I was wondering since Vitamin D is really a hormone, do those with EDS have a problem with levels being low or any correlation possibility?
Also are there others that also have Vitamin D deficiency?
Oh boy, have you opened up a great topic! YES! Vitamin D deficiency is very common in both EDS and MS, and heaven knows what other neurological conditions. In the MS world, patients take as much as 10,000 units per day. It took me a long time to get up to normal levels, but I finally did. Our son’s actually went a bit too high, and we had to back down (oops). Now that my fingernails are becoming funky (flattened, longitudinal ridging, some curling under, some white spots), I know there are certain vitamins/minerals I’m not absorbing well. Heaven knows I have more supplements in my body than the Sunday paper (ha), but absorption seems to be an issue. Because Vit. D is an anti-inflammatory, a lot of folks are jumping on the vitamin de jour (guilty!).
I belong to a POTS support group as well. All that have been tested in this group have found their D3 is low. I’m not sure why??
Gail
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…
I belong to a POTS support group as well. All that have been tested in this group have found their D3 is low. I’m not sure why??
Gail
Wow, Gail, was everyone able to bring it up? It took us a while, but we did it. Do you think this indicates the chronic inflammation we have?
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…
Absolutely. and then we have to worry about the electrolyte balance with potassium, calcium, and magnesium. Getting those out of wack can make the heart craziness go into overdrive (been there!). It sounds like you are listening to your body, which is one of the best things we can do if a cardiologist is not willing to live with us for a while (eeks. Imagine the bill!). 🙂
Some had problems increasing their Vit D when they were taking D2. Switching to D3 helped.
I think the low D3 and the Mast Cell problems indicate our Immune Sys is out of balance. The Mast Cell mediators can be very inflammatory. The question is why the imbalance?? Hopefully, I will find that answer one of these days. 🙂
Some had problems increasing their Vit D when they were taking D2. Switching to D3 helped.
I think the low D3 and the Mast Cell problems indicate our Immune Sys is out of balance. The Mast Cell mediators can be very inflammatory. The question is why the imbalance?? Hopefully, I will find that answer one of these days. 🙂
I agree that our immune systems are low. Did you know, though, that people with mast cell disorders have abnormal mast cells? They don’t know when to stop growing (not unlike cancer), and their shape isn’t quite right. Apparently, some have abnormal KIT receptors, too. So it may be more than an imbalance issue. The mediators are VERY inflammatory. It DOES make me wonder if that is why we need so much Vitamin D3… Thanks for your thoughts. 🙂
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.
Momcat
My D has been low for years. Low vitamin D is associated with a condition called secondary hyperparathyroidism. This is where the parathyroid does not work right and the body also does not absorb calcium very well because the parathyroid tells the small intestine not to absorb calcium. It is a way the body thinks it is protecting itself. One test that is usually done to check the parathyroid os a blood test called PTH Intact. This will measure PTH (Parathyroid) and also tests your calcium and serum ionized calcium levels. This helps to determine if the parathyroid is effected but someties it is even with readings close to normal. There is a medication that is a form of Vitamin D 1, 25 hydroxy that is used to help lower PTH levels. Your case may be a bit different. Good thing you have an Endo that will help with this.
I also suffer from malabsorbtion with many vitamin deficiencies. I have trie the supplement route and my levels are still crap. I now get Multi-Vitamin Intravenous Infusions. This was just started at 1 time month but is being changed to one time week. They are also adding extra vitamin C, Vitamin D, and Calcium to my infusions. I had gastric bypass surgery in 2004 with complications since day one one. It is believed I developed what is known as short gut syndrome where the small intestine was shortened for surgery somehow should have still worked okay because only a smaller area was bypassed and the area left sort of stopped working.
I wish the best for you and hope you feel better soon. If you have any questions I will share more if you need on my story.
Also can read more under the heading under Skin titled Weird changes in my nails
mother1991 aka christina
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,
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?
zinc and magnesium both help with d absorbtion. the burning of hands and feet can be part of secondary hyperparathyroidism, Skin itchyness, and rashes but may not be all attributed to it. I do not know about the parathyroid tumors but if offfer to have scan do it to make sure or ask. Tiredness is a big one too. I feeel tired all the time.
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”
It could very well have played a part in the gastric bypass i had. I know the surgeon seemed to do a good job and that was confirmed from an enteroscopy i had in may at UCLA. The intermittant intusseption is beleived to be from EDS, and some of the gastric issues and malabsorbtion may be interlinked with other things as well. I am also looking into mastocytosis and the symptoms from it with me and seems to also be good match. Luckily I will see two specialists at UCLA this next week that i can broach the subject to because one of them will be a new one I see in dermatology and the other is my endo at UCLA as well. He is one that loves challenges. I also know some things have been found in the last year from going to UCLA and others still a mystery and will continue to persue what i can. If need arises I have an auth in place for for UCLA hospitals and clinics that does not expire until July next year so can see other doctors there if need be and explore new avenues. I can also see too have the IV vitamin infusions will do and if if I feel any better. I am willing to share my story anytime and more can be read under the Skin Wird changes in my nails where my whole hystery is mostly posted. I was not diagnosed with EDS until November last year at age 40 but think it has a alot to explain alot of things iin my life. My son also has a d deficiency despite taking supplementation and it seems that many with EDS also have d deficiencies as well. D plays a major in many aspects of our lives. A good website I have found is http://vitamindcouncil.org this has a wealth of info with many many articles and studies on vitamin d in varied subjects. Hope this helps as well. I will relook at the site you posted, I had been there before and read before but need to refresh memeory and think and will answer more by morrow or later today.
If you ever have any questions feel free to post here if want more private chat can email me at rightmerca@live.com
thsnks mother1991 aka christina
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