low vitamin d and protein levels

Discussion in 'Fibromyalgia Main Forum' started by srollins, Jul 27, 2006.

  1. srollins

    srollins New Member

    this is from test i had 3 months ago and the dr. just informed me. however that is another story. i was wondering if anyone could shed some light. dr has sent me back for another cbc, esr, serum immunofix electrohor, cpk and vitamin d 25 hydroxy.
    besides the usual he is looking for monoclonal gammop and osteomalcia. i have tried looking this stuff up on the net but everything is just pig latin to my fogged up head.
    i wou8ld appreciat anyone with simple short info on this.

    shirley
  2. dononagin

    dononagin New Member

  3. Dainty45

    Dainty45 New Member

    I also have low vitamin D, I read somewhere that is common with Fibro people. I had two blood tests, that is all, he put me on something to make my bones stronger, it was only for a month. I also have osteopenia, so that is why he is concerned about it, but no further tests have been done. I have had quite a few Dexascans, to test bone density, it is usually low.

    Good Luck to you!!
  4. winsomme

    winsomme New Member

    there is an autoimmune condition called Sarcoidosis, and with this, people can have low levels of Vit D.

    there is something called the Marshall Protocol that was designed to treat sarcoidosis by a scientist who actually has this disease.

    he also believes that other autoimmune diseases like lupus and RA and even CFS would also benefit from his treatment.

    there is info on this site and if you google "Marshall Protocol" you should find lots of info.

    the basic reason for the low Vit D as i understand it is this.

    there are two forms of Vit D (Vit 25-D and Vit 1,25-D). the latter is involved in the inflammatory cycle. Dr Marshall believes that tiny bacteria trigger an inflammatory reaction and the body as a result converts the Vit-D25 to Vit D 125 at too fast a rate thus we end up with low levels of Vit D.

    it is a complicated theory that i can't begin to do justice, but may be worth looking into.

    if you have trouble finding more on this let me know.

    thanks
    bill
  5. srollins

    srollins New Member

    i appreciate the imput. special thanks to bill. i am going to google right now.
    shirley
  6. srollins

    srollins New Member

    post about this in the last few days.
    i am beginning to believe there is something to all this. i did find it strange that when my dr(whom i have been going to for 18 yr or more) sent me for these blood test that the lab said i'd never had ordered before and they said so to point out that my insurance wouldn't pay for them.always before he just sent me for a cbc and the drug side effect thing every 3 months and all of a sudden out of the blue he adds something different. well when they told me that i'd have to pay this out of my pocket i started to tell them to forget it, but then i thought as sure as i refuse this test that will be the very one that could help me. so i told them to just do it.

    i am beginning to see there might be some light at the end, i am not expecting a cure but it sure would be sweet to have something that might be the answer to this dreadful fatigue. thats the part i can't deal with. the longer i have this and i am talking 30 yrs the tougher it is getting. making a pot of coffee most days feels like climbing a mountain.

    sorry i didn't mean to get crazy........................

    hugs to all,
    shirley
  7. srollins

    srollins New Member

    i read those post you mentioned and i feel so much better informed now, almost as if someone has turned on a light bulb. thanks ever so much.

    hugs(gentle),
    shirley
  8. Maggielena

    Maggielena New Member

    I just wanted to mention that I, too, as a RA and FM patient (and new to this message board), went to my rheumatologist and was sent for Vitamin D bloodwork. It indicated my Vitamin D was too low, so she put me on a 50,000 units per week for 8 weeks. I was tested at 3 week intervals. By the second or third day I knew we were onto something. By the second week I had little pain compared to my normal, my energy soared, my not-too-severe depression was alleviated, even my constant diarrhea changed to almost normal. But when the 8 weeks were up, she cut me back to just one 800 unit over the counter Vitamin D, and it's just not enough. So I am presently working my way up to find the best level for me, and my family dr will run blood checks on me. I am now up to 2,400 units daily, and I am beginning to have relief again, I guess it takes awhile since it is stored in the body, but we're getting up to where I need it. When I first noticed that the over the counter level was not enough, I called my rheumatologist and asked how much I could safely take. The nurse called back and said that I must take only the one 800 units daily. I explained, very upset yes, that it wasn't enough...that was why I was calling. I asked why I should revert to all that pain, diarrhea, etc, when there was help. She said, "You are misunderstanding something. We sent you for the blood work to bring up your Vitamin D level, and it did that. We were not treating those other symptoms." Duh.... did I not already know that? I've not gone back to this dr yet, and I don't know if I will if they are going to throw explanations like that at me and expect me to accept it. Also, I want a doctor who will let me work with him/her on this problem. Anyway, this is just one more report on the wonderful affects of Vitamin D on FM and RA.
  9. bigmama2

    bigmama2 New Member

    I also had bloodwork done and it revealed low vit D. I think this is common with us CFS and Fibro folks if we don't get enough sun. I am trying to get out there each day for just long enough for my skin to start to get a bit pink. I am very fair so it doesn't take long!!!

    Moral of this thread---- get your vit d levels checked, get some sun, and take your vit D supplements!!!!
  10. KarenZee

    KarenZee New Member

    Hello Shirley:

    The importance of Vit D and it's impact on how we feel is not too well understood by some of the medical community that we see.

    I'll try to make this as short a story as I can. My history has been this: I had active Epstein-Barr Virus, Hashimoto's Thyroiditis, Adrenal Fatigue (sluggish adrenals), Osteopososis (since I was 19), Iron Deficiency Anemia, all kinds of GI distress (much later I discovered it was a bleeding ulcer, hiatal hernia, and a gallbladder that wasn't working and by then I needed surgery). I went to a naturopathic physician because aside from periodic treatment for anemia and proton pump inhibitors to reduce acid in the stomach, I wasn't being helped by my internist regarding the other symptoms I was having. Re: fatigue and muscle weakness he kept saying well you are anemic! Some doc's just assume you know nothing about your body.
    We just go through the day not paying attention to how we feel. Some doc's also do not appreciate our input but look at it as interfering! Interferring with our own healthcare....that's interesting! What do they think about their patients who are oblivious to what is going on with theri bodies and their health??? I have to wonder what the happy medium is.

    Anyway, after the naturopath did simple common bloodwork she discovered that my thyroid and adrenals were not functioning well. The active EBV also showed up and I was anemic again. The symptoms that I have that are that of Chronic Fatigue are those of the diagnosis above. Therefore I am not diagnosed as having CF because there are other reasons for the symptoms. Naturally, with proper treatment and rest things began to slowly improve for me, but I was still a very sick person.

    Probably about a year later my Vit D level dropped and I was treated with mega doses of Vit D. This is the standard procedure when your levels are this low. Getting some sun each day is good advice, but the levels must be brought back up to within normal levels and you need mega doses of Vit D to do this. If memory serves, 50,000 units weekly for several months, then 50,000 units biweekly for several months did the trick for me.

    Interestingly though, after 4 or 5 months the Vit D level dropped back down even lower and this time my calcium was low too. Back on the mega doses and they haven't been able to discover why this happens to me. I am monitored every 3 months to ensure that the levels are safe.

    As for information about Vit D deficiency I encourage you to get this book. I found it cheaply on www.amazon.com. It is called THE UV ADVANTAGE by Michael F. Hollick, PH.D. MD. Dr. Hollick is an expert (you can goodle him) on Vit D and understands how moderate exposure to sunlight (UV) is needed to provide us with needed Vit D requirements. This book is important for us to read because he explains how critical adequate Vit D is to our health.

    It is a must read for you. He talks about bone conditions related to Vit D deficiency...osteomalacia, osteoporosis, how to treat Vit D deficiencies, and how the muscle aches, weakness and fatigue (symptoms of fibromayalgia anad CF) can be related to Vit D deficiencies.

    Even though you should read the entie book, I'd start with Chapter 4 because that is where your 'story' is and you will be able to relate to it immediately.

    Get a copy of your past lab results and from now on request that you receive a coopy of all lab testing either from the doctor or with the doc's permission from the lab itself. You will need to track your levels yourself to keep tabs on how things are going.

    Dr. Hollick emphasizes that the "within normal ranges" for Vit D is broad. He recommends 30 to 60 ng/ml as a health 25-vitamin D level. This varies of course, patient to patient which is why you should monitor your levels with how you feel. I heard this concern in your post. You need to know though that it takes time to restor your Vit D when it has been low/depleted. Even after intense mega dosing of Vit D is complete, it may take months for the symptoms of Vit D deficiency to resolve completely.

    Do yourself a favor and get this book. It will helpl educate you and maybe even your medical providers about how proper levels of Vit D are necessary for ooptimal health.

    Dr. Hollick is well known for advocating for appropriate sun exposure to keep aor Vit D level up where is needs to be. Therefore, the dermatologists and the sunscreen manufacturers treat see him as a threat to their causes. Preventing skin cancer is equally as important in maintaining good health, but Dr. Hollick thinks our society has gone overboard with the cancer scare that we are eliminating needed daily exposure to the sun that is critical to healthy Vit D levels. Read the book, you won't regret it and it will answer many of your questions.

    I think it is impportant to be as well informed as we can be about out health. It has been my experience that some medical doctors are threatened by patients being proactive regarding our healthcare. I really don't understand this attitude and defensiveness on that type of doctor. We can only be helping ourselves to be a healthier, knowledgeable person, and helping the doctors by being informed about about bodies and the changes we experience.

    Anyway, enough said. I wish you well in your quest to be an informed, enlightened person who takes responsibility for her own health.

    Best wishes.
  11. Marta608

    Marta608 Member

    We need to supplement vitamin D since few of us are out in the sun daily anymore because we're heat intolerant. My doctor has me on 2,000 i.u. of D every other day. We'll check blood levels next month. My chiro advises 4,000 i.u. daily but I felt that was a bit too much.

    Vitamin D supports bone health as well as mood.

    I'm sorry but I don't know what those other things are. Did you ask him? Did he give you the time to ask?? lol

    Marta
  12. winsomme

    winsomme New Member

    in addition to the Marshall Protocol theory that i posted, Vit D also fits in to part of the theories that i have posted about in another thread about a Dr AMy Yasko and her research on Autism.

    she believes there are genetic mutations that are at the root cause of Autism (and CFS for that matter). and the you can get the different cycles in your body functioning again by supplementing the parts of these cycles where you are deficient.

    she uses a genetinc panel to find these mutations and then recommends the supplements based on the results. there is more to it than this, but that is the bascis.

    and one of the things she looks at is a gene that has to do with Vit D, and the result is that some people need to supplement extra Vit D.

    do a google for "autism, answer" and you will find her site.

    thanks
    bill
  13. srollins

    srollins New Member

    this place is just a wealth of information.

    i have ordered "the uv advantage" so i am looking forward to that arriving. when i get finished here i am going back to the site of amy yasko.

    my dr called today to tell me that my blood work all came back okay accept for the vit.d so he is starting me on a supplement, but i am put out with him. that is another thread though. maybe i will post about that in order just to vent, lolol

    anyway, i just really feel that this vit.d thing might be an important factor for me right now. i have had this dd for so long but never have i been in the shape i am in now for the last few months. at this point i would be happy just to get back to where i was 6 months ago.

    to all who replied to my post, thank you so much. it means so much to be validated.

    shirley
  14. KarenZee

    KarenZee New Member

    Shirley:

    Call the doc's office back and get the results of the Vit D testing from both dates. You want to know what the numbers are and which direction they are going. Then ask them to mail you copies so you can start to keep your own lab work file.

    If I didn't mention it already, the book also talks about osteomalacia. I know you will find this book very informative.

    CPK is a muscle enzyme. I just had mine tested and it was normal. You get to the point where you almost want to see an abnormal test (not really, but...) because then it might answer the million dollar question we all have, "Why do I feel like this?, and Can you help me feel better?".

    Hang in there. Yes, it is important to know that you are not alone in all of this. Do your best to keep your spirits up and don't give up on trying to find answers.

    Have a nice weekend.

    Karen
    [This Message was Edited on 08/11/2006]
  15. srollins

    srollins New Member

    that is wonderful advice.

    you are right about wishing fo an abnormal test result.
    it's not that i want to have anything wrong with me but
    if you're going feel like dirt it would be nice to have some answers as to way and what to do for it.

    it would be nice to have something that the dr. just says "do this and do that and you'll be all better"

    but no we have to have the "everyday mystery" that takes over our lives.

    thanks again,
    shirl