Low Vit D and High Cholesterol

Hi I have EDS and my blood work keeps coming back low on Vit D after taking 50,000IU weekly for 8 wks and my cholesterol is 285-the less I eat in that category the higher it goes. Does anyone have the same issues? Is there a connection?

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Hello Karen,

I don't think there is a connection between Vitamin D deficiency and high cholesterol. It is known that most EDSers (and humans) are Vitamin D deficiency. Since we may have difficulties absorbing it, it is best to take D3 instead of D2. It also may help to take smaller doses throughout the day instead of mega-doses once a day. There are also some who have to take the presciption strength of Vitamin D twice a week while some of us can take 7,000iu a week successfully. It takes trial and error plus careful work with your doctor.

The high cholesterol could be high due to genetics as it runs in families...though it is not a part of EDS. Even with genetically high cholesterol, there are many ways like lifestyle changes and statins which can control it (http://www.everydayhealth.com/high-cholesterol/high-cholesterol-are-genes-t o-blame.aspx)

Take care....

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Hi Karen. I've been eating healthy all my life but bloodwork always showed high LDL levels. I recently did 23andme genotyping profile and learned that I'm an APOE4 carrier. It has nothing to do with EDS, but it's a very important gene that impacts how your body metabolizes cholesterol. It has all kinds of other consequences too, i. e. increased risk for cardio vascular problems and Alzheimer's.

I also read somewhere recently that having certain alleles on 3 SNPs on the GC gene has been linked by sevral studies to different levels of vitamin D serum concentration. You will need your 23andme or similar genome profile done in order to look them up. PM me if you need more info on this.

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One more thing, it took me 4 months of 10,000 iu per day to get from 7 to 51. Then I took 5,000 per day as a maintenance and my levels dropped to 37, so I'm back on 10,000 iu per day again.

I take my vitamin D supplement in the morning -- I read somewhere that it can cause insomnia if taken late in a day. Not sure if it's proven, but I already have insomnia, so I did not want to add anything extra!

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Thank you both for your responses. I am trying to figure out what is specific to me and what is typical for EDS I was diagnosesd by Dr F in 2008 but she was not blood testing at that time. I have a physical Friday and an appointment with Dr Davis at Weill Cornell. I don't know if she does genetic testing but I'll find out. I haven't tolerated statins in the past and I have been taking Vit D in ever increasing doses and still come up short. Hopefully I will figure out which way to get it under control. Thank you again

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Hi Karen,

Were you diagnosed with EDS-Vascular Type or one of the more rare types of EDS? The diagnosis of the Classical type of EDS and the Hypermobility type of EDS still are done by clinical examination, medical history, and family medical history. All of the genetic mutations responsible for the Hypermobility type of EDS have not yet been identified therefore there is no genetic test. There is a genetic test for the Classical type of EDS though it is still considered to be 50% accurate and so is usually only given in research situations.

I was just curious what genetic test you were hoping to have....

Gentle hugs...

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Mast cell activation syndrome is found in EDSrs

http://www.ashg.org/genetics/ashg07s/f21352.htm

and is associated with high cholesterol:

http://www.ncbi.nlm.nih.gov/pubmed/18662284

and is associated with malabsorptio (reference 16 on the word "malabsorption")

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3033552/

I've done everything to get my cholesterol down to no avail. But my index is high as my HDL and tryglycirides are good. I can't possibly do any more than I do (except maybe exercise even more and lose even more... but I'm within range and exercise has increased with no difference in cholesterol).

Be careful with statins. They can cause muscle issues.

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There is one study that shows a correlation between EDS and high levels of LDL cholesterol. Even though I am a vegetarian, I have to fight to keep my total cholesterol under 200. Other member of my family are having similar struggles and have had to use medication. I don't want to, but I don't know if diet is enough.

http://www.ednf.org/index.php?option=com_content&task=view&id=1481&Itemid=8 8888988

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Oh, thank you Sugar twin! I was not aware of this!

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HI,
Thank you eh and sugar- I will take your data to my drs appointment. I have tried statins and had unbearable back pain. On the other hand I take care of an elderly aunt with PVD and dont want to end up in her shoes. I really appreciate your taking the time to share your research with me.
Smile-I have heard people refer to blood testing so I thought there was something new. I believe I have classical but I am not 100% sure. My older sister is very hyper mobile and had surgery for occult tethered cord and had her neck fused to c6. She then had her ulnar nerves rerouted and has had most of her surgeries reopen. My symptoms were confusing since I had been hit in 6 car accidents from the rear ( you can only get so lucky), and I had a prior back surgery. Dr F said without my sister she would have been on the fence diagnosing me. Then in 2011 I needed surgery for occult tethered cord but while all my joints are loose I am not hypermobile. In fact many of my muscles are in spasm. I feel like I need to "manage" my health better and am hoping Dr Davis can be the Dr to direct my EDS. I don't feel qualified to be the one connecting the dots.

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Hi Karen,

The Vascular type of EDS has a blood test that is 98% accurate...so it can be used to confirm clinical diagnosis but not rule it out. The Kyphoscoliosis Type of EDS has a very accurate urine test used for diagnosis in combination with its diagnosing criteria. The Arthrochalasia Type of EDS uses a skin biopsy with the diagnosing criteria as does Dermatosparaxis Type. Neither the Hypermobility nor the Classical types of EDS have genetic tests used for diagnosing yet. Here is the method and the criteria for diagnosing each type of EDS: http://www.ednf.org/index.php?option=com_content&task=view&id=1352&Itemid=8 8888970.

Regardless of the type of EDS, it is still treated/managed based on the symptoms. So, if joints are unstable, then PT with a therapist experienced with patients like us is necessary. If healing skin is an issue, then making sure doctors know that stitches must be done differently for us is crucial. In addition to handling the symptoms, all types need regular monitoring of their heart with an ECHOcardiogram.

I hope Dr. Davis is able to provide the support you are looking for.

Gentle hugs...

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Karen, don't let me steer you to or from statins. But be careful. MDs give a set amount to start with and then may check in 3 months. Ssatins can cause serious muscle issues. When one has EDS, how does one check to see if the cause of the pain is EDS or statins? Well, there is a blood test to check on the muscles but if the MD is just going to see you complaining of the same ol thing and brush it off as EDS, well that is when there may be a problem. I would want to know it is NOT the statins regardless of whether I have EDS and the doctor thinks is it is the same pain. If I have muscle pain now and I have it later with statins, where is the proof that my muscle pain went away or lessened but the pain for statin caused muscle issues set in. The latter is a serious matter and needs to be attended right away.

I was probably too short in my warning. Just wanted to clarify that you may need to stay on top checking on your status if you take the statin.

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Thank you again for your information. I will read the diagnosis differential in more detail tomorrow. I was in a car accident today on my way home from PT. (hit from the rear) This is my first car accident since I am in pain management, I am now trying to figure out how to determine if I am injured while I am on meds. So since I am shook up and upset, I will just thank you for all your effort on my behalf and curl up and take a nap.

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Ouch! I'm so sorry. What EDSr needs that? Take care.

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My daughter had a full blood work up with a nutritionist/bio chemist. It turns out her cholesterol was higher than normal for her age. She had been complaining of fatigue for years and her pediatrician recently did a standard thyroid test; came back fine. After the in depth blood panel mentioned above, it turns out she is hypo thyroid. A new MD tells us hypo thyroid can cause inflammation in the the body and higher cholesterol. She is starting thyroid medicine today with the hope that she will have more energy, less pain, and lower cholesterol. We will retest her blood in December. Will keep you posted.

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aall kids should have a cholesterol screening before college. Most PCPs will pass that one over in my experience. My daughter's was required as part of the health physical for college ... women's college.. LOL ... (I just kind of find that funny that one has to go to a school where woman are promoted .... which gets boring but is good for woman at that stage of their lives... what does that say about the general world where the cholesterol is not done.... sorry my humor is warped but I find that funny..)

Anyway, I am older but correcting my thyroid did not correct my cholesterol..... it helped a little but it is still high. Do be shure tht the physician has done a thyroid antigen test. If the TSH was normal and then up and then down............. it sounds a lot like Hashimoto's thyroiditis. To my knowledge, lw pthyroid is steadier. It is important to know if she has ANY antibodies (some but below threshold indiacate elevated risk) because it can be associated with other auto-immune disorders and it would change a providers perspective and possibly screenings going forth.

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Thanks for the info. I agree! Our daughter is tall and thin so an assumption was probably also made that thyroid couldn't be an issue.

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I have high triglycerides; but HDL and LDL are "ok" and a little on the high side but not "high"
congenital absence of a thyroid - been on synthroid singe age 6 weeks, monitored by my endocrinologist every 6 mos.
low vit d - prescription strength for a few weeks, now just on 1000IU a day, but still on the lower side
I see Dr Francomono in October for my consult. Hoping she pieces is all together!

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I have been on synthroid for years. Now for another question. When I had the car accident-I am taking Diladed and Fentanyl very low doses but enough to keep me almost pain free. How can I tell if I have been injured in an auto accident? This sounds stupid but I almost don't know what to do.

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Zipper: A journal entry of mine https://www.inspire.com/EhDoSomething/journal/news-endocrine-society-announ ces-vit-d-guidelines/

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Karen, I don't understand your question.

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