July 27, 2011 at 12:52 am #1343
Hi Momcat7, It sounds like everyone’s advice here is excellent! I was just going to throw in that if you can’t tolerate Zyrtec, but are responding to antihistamines, I would talk to your doctor about starting Gastrocrom (a mast cell stabilizer). The better we can clear our gut of mast cells (or keep them from degranulating), the better absorption we’ll have. And Drats, apparently, we can show “normal” levels of magnesium in our blood, but intracellularly, we are still low, so the docs suggest magnesium supplements, no matter what our blood tests show. :ohh:August 22, 2011 at 2:21 pm #1399SnapCracklePopKCParticipant
My vit D came back low at 20 something but raised to 56 in a few months after taking 2-3,000 IU every other day. Seems my body responds fairly well by comparison. Having it checked again. Going to be seen re EDS diagnosis…so don’t count me an EDSer YET…will update when I have dx or specific lack of one!August 24, 2011 at 7:24 pm #1404
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?
Hi MomCat, you may want to start a parathyroid thread. I haven’t heard much for patients about this, but it would be great to know. Thanks for posting!September 18, 2011 at 8:23 pm #1478dawnrulostParticipant
last appt. this was mentioned to me, my level D3 was only 4. taking 50,000 units per day.September 19, 2011 at 3:10 pm #1482
last appt. this was mentioned to me, my level D3 was only 4. taking 50,000 units per day.
Wow, that’s low, and wow, that’s a lot! Don’t forget a little sunshine, too! Most people are kicking around 4,000 units as a maintenance dose, once we get it into range. That works for me! 🙂October 24, 2011 at 4:05 pm #1554
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.
Hi Momcat, would your very understanding doctor let you try a mast cell stabilizer like cromolyn sodium? That may make a huge difference for you (and I’ve never heard anyone complain about any side effects with it… Let us know? 🙂 DianaFebruary 13, 2012 at 1:31 pm #1741Meg kateParticipant
Okay so, I posted in a different thread about a sudden weight gain issue and after getting my labs back for thyroid, acth, glucose, b-12 and folate among others the only one that came back abnormal was my vitamin D. My doc told me normal levels should be around 40-50, 8 months ago I was sitting at 35, a week ago I am now sitting at 13 or lower. My docs think that the sudden weight gain could be due to my lack of vitamin D, any ideas??? I’m a really tiny person, I’m short and skinny and although the weight I’ve gained puts me in the middle of the average scale – it’s overweight for my frame and wreaking havoc on my leg joints.April 4, 2012 at 1:12 am #1937Bee in ozParticipant
Hi, I too have vit D def (19) and on 5 tablets/day (5000units). Makes me wonder if a lot doesn’t circle back to chronic ICP pressure issues. Compression leading to “pseudo tumor” like conditions. ? Neuro control of digestion, thyrois, parthyroid, ovaries, you name it, if central disregualtion occurring than it is possible that these effects are secondary to the underlying structural problems of connective tissue???
Interesting discussion, Thanks BeeApril 6, 2012 at 9:23 pm #1956ourfullhouseParticipant
My doctor is starting to think is might have to do with having an inability (genetic?)to absorb fat soluble vitamins. I’m low in all of those (esp. K) and can barely keep in the middle of the normal range of D on 10,000 IU of D3 (I use Thorne Research D3) for years now! I think there is some kind of test he is thinking of running to check for this, but I don’t know what it is yet.
I have come back with other genetic mutations that make me unable to absorb other vitamins (I have the folic acid/Vit B6 and B12 gene defect, so I have to take activated forms of these vitamins) so I guess this wouldn’t surprise me. Makes me wonder, if this is all genetic, if it is somehow linked to the EDS, since it is genetic. ???April 6, 2012 at 9:34 pm #1958Bee in ozParticipant
Seems there are some common associated conditions?? located near the collagen gene locus that’s affected??? or just correlation doesn’t equal causation??? I suspect there is a genetic problem with CYP6D2 (that’s for memory… ha ha… not so good at pres)the metabolism of some substances affected and adverse/strange drug reactions. It’s so very complex and we dont have any concrete research looking at the whole person with EDS. We are victims of sub-specialists who can only focus on one system… may be a gross generalization, but how I’m feeling (I have a dream… every capital has a center for connective tissue disorders, where the medics can spell Ehlers Danlos and know more about it than me!!! Lucky I like puzzles!!)
All the best with finding a good doctor. I’ve just found the most wonderful GP/PCP who is just amazing. Gives me hope. Hope you are all OK. Bee (::)April 6, 2012 at 10:04 pm #1960ourfullhouseParticipant
I agree with you, Bee. And, love your “dream”. =)April 27, 2012 at 11:10 pm #2068Bo728Participant
I saw Dr Michael Holick, an endocrinologist, earlier this year. He is very big on vitamin d and wrote “The Vitamin D Solution”.
Over the last two months I have been using a ‘Sperti Vitamin D lamp’ almost every other day. I just had my levels checked this week and they were a 41. I am very excited as this is the highest they have ever been. I have previously taken supplements for years, but because of malabsorption issues my levels stayed in the teens / low twenties.May 3, 2012 at 6:41 pm #2103whatsreallygoingonParticipant
My Vit D came back a 8! im on 50,000 units a week.May 3, 2012 at 6:50 pm #2104mommy2seanpParticipant
My 4 yr old son and I both have EDS and are also vitamin D deficient. We can not tolerate supplements but have found success with the “Sperti Vitamin D lamp”. My level went from a 10 to 22 in two months by using it five minutes every other day.June 21, 2012 at 10:36 am #2465EDS99Participant
Glad to hear the Sperti is working for you. I was wondering
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