The 12th Invest in ME Research Conference June, 2017, Part 2
MEMum presents the second article in a series of three about the recent 12th Invest In ME International Conference (IIMEC12) in London.
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Just diagnosed with osteoporosis - ideas welcome!

Discussion in 'Skeleton, Skin, Muscles, Hair, Teeth, and Nails' started by mermaid, Dec 30, 2016.

  1. mermaid

    mermaid Senior Member

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    I am a bit shocked by the result to be honest. I have 2 results of minus 3.2 (osteoporosis) and one result of minus I.9 (osteopenia). I have never had severe ME, and really am improving re what I can do with weight bearing exercise (but have had spells of some inactivity over the 10 years+ I have been ill), and do a lot of gardening in the summer and am part of a dance/theatre group. So not completely inactive ever.

    I am 64 and now 15 years post menopause, so am now in the high risk category but only for my age, and no other reasons. My diet is good I feel, and I have some useful supplements like Vit D. I have now added in Vit K2 (recently) and am about to buy strontium.

    My bone density scores are far worse than I expected, and were ordered by an endocrinologist who believed that I had overdosed on T3 only, over the 4 years I have been on it, as my TSH was below range. I did not agree with him, but now I feel he could have been right but I cannot know for sure. I have already reduced it, by 15mcg just in case. I had no other symptoms of being overdosed (low BP, and pulse OK, low temp) and was on T4 for 17 years prior to the change.

    So... what do I do? Do I go for the bisphosphonates which I am sure I won't be able to tolerate orally anyway, and which seem to have a bad press other than mainstream. There are a couple of useful threads I have found from the past on PR on the subject. I feel sure it must be a problem longterm for many with ME/CFS for all kinds of reasons - lack of exercise, difficulty with diet and gut issues........
     
    Last edited: Dec 30, 2016
  2. Mary

    Mary Senior Member

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    @mermaid - I would definitely avoid the bisphosphonates (it's more than just "bad press" - see this, e.g. https://www.drugwatch.com/fosamax/)

    The K2 and strontium are good. Also, this is supposed to be very good: https://www.amazon.com/Jarrow-Formulas-Bone-Up-Promotes-Capsules/dp/B0013OUJIU?th=1

    I haven't been able to exercise at all for 18 years and have expected the worst bone-wise but only have mild osteopenia. Anyways, a few months ago I started taking the Bone Up plus strontium, (had already been taking D3 and calcium and magnesium for years). Silica is also supposed to be good for bone health. I'm not sure if the Bone Up has silica, one of their products does, or you can just a silica supplement.

    If you read the reviews on Bone Up, you'll see people gaining bone density on it.
     
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  3. mermaid

    mermaid Senior Member

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    Hello @Mary thank you for posting on this. Yes, there are some unpleasant things listed there, and even my local health Trust in Cornwall seems to have some possible bad side effects mentioned. I am just so worried both ways and not sure what to do for the best.

    That is such good news to hear that you 'only' have osteopenia. That was all I was expecting to be honest, at worst.

    Thank you for the suggestion of Bone-Up - you are the 2nd person who has suggested it today! I will give it some thought and look at what I am taking already if I buy it so I don't double up. No, I don't think silica is in Bone-Up so I will get some of that too!
     
  4. Kati

    Kati Patient in training

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    Hi @mermaid personally I would go with what the doctor recommends. The reason for that is, it only takes one fall to completely change he course of your life, broken hip, broken back, or broken hip.

    If you can't tolerate the oral treatment I believe there are IV alternatives.
     
  5. mermaid

    mermaid Senior Member

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    Thank you @Kati Like so many things there is no right answer I fear. All things come with risks. I recently had eye surgery and have to have more in 2017. Also the colonoscopy has risks. I have not completely made up my mind on it really, but as you say, the results of a fall could be very bad. I will take extra care re that, and not take any risks when I do my dancing.

    My thoughts currently are either to possibly try the bisphosphonates but maybe not have the full 5 years of it. Maybe just for a year, while I do all the other things that I plan re the supplements which I hope will also improve things. Plus if it was the T3 affecting it, then I have reduced it now, so hoping the damage will reduce.

    Or do just the supplements for maybe 2 years, and then pay for a private retest and see if it's improving. If not then definitely go with the bisphosphonates. I will see what the GP says re the possibility of the IV sort if necessary.
     
  6. PatJ

    PatJ far and free I gaze

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    Vitamin D alone may not be well absorbed. The following site has a lot of good information but I've included some here.

    Cofactors to take from: http://www.easy-immune-health.com/pain-while-taking-vitamin-d.html

    Take with: K2, A, B2 (Riboflavin), Magnesium (very important), boron, zinc

    These cofactors, and other nutrients, are critical in the absorption and conversion of vitamin D into its active form in the blood and also help to deposit minerals in the bones where they belong, instead of allowing the calcium to be deposited in other tissues where they cause calcifications, such as hardening of the arteries.

    It is HIGHLY recommended that with any Vitamin D regimen, you also take a full spectrum of multivitamin and minerals that include Vitamins A, K and magnesium in adequate doses that will allow you to avoid the side effects of vitamin d that are due to lack of these necessary cofactors.

    Bone pain:
    from: http://www.easy-immune-health.com/is-kidney-soreness-a-side-effect-of-vitamin-d.html
    When a person with somewhat spongy bones takes vitamin d, it allows your body to absorb calcium quickly -- and with that calcium fluids go into the bones too, just like a sponge. And when this happens, it actually can make your bones swell against the outer covering of your bones. And because this outer covering of your bones is not flexible, you can experience this swelling as pain.

    and:
    It's very simple. Intake of Vitamin D + Kidney stone/pain = low magnesium!
    Vitamin D requires Mg, low Mg = kidney stones!
    ...

    http://www.easy-immune-health.com/pain-while-taking-vitamin-d.html
    One of the problems that occurs when someone is deficient in vitamin D for a very long time is that they have loss of calcium and minerals from their bones. Over time, this leads to a condition called osteopenia or osteoporosis. But loss of bone minerals can occur even if your Bone Mineral Density appears ‘normal’ to doctors.

    However, if you are experiencing pain while taking vitamin D, then your bone mineral status is definitely not normal and your pain proves it. You see, when your bones are seriously depleted of minerals, and you begin to take vitamin d, the vitamin d will help you start absorbing minerals and depositing them into the bones where it is needed. But water always attaches to minerals, and when your bones begin to remineralize, it will also draw water with those minerals.

    Unfortunately for many, when this happens, the periosteum, a thin layer of tissue that surrounds the bones, will swell with the water, causing pain similar to the pain of a bone bruise. This pain is ‘temporary’, meaning that it can last weeks to months, sometimes even up to 6 months or longer, depending upon how long it takes for your bones to stop remineralizing at such a high rate.

    [Wait it out]
    The best thing to do when you experience pain while taking vitamin d is to just wait it out. While no one likes to experience pain, it’s relieving to know that there is nothing wrong with you and that your body is actually healing. Some people want to decrease the dose of their Vitamin D, or stop it completely and justify this by saying that they are ‘listening to their body’ or that they believe they are experiencing a Vitamin D Overdose.

    While your body IS trying to tell you something, it’s actually telling you that you were extremely deficient for a long time and it’s trying to heal you. What it’s not telling you to do is to stop remineralizing your bones!
    ...

    VitaminD and Magnesium must be taken together

    from: http://www.easy-immune-health.com/magnesium-and-vitamin-d.html
    Since magnesium is required for the conversion of vitamin d into its active form, it's also true that taking vitamin d _may not raise_ Vitamin D Blood Levels in those who are magnesium deficient!! Be sure that you read this again and understand this magnesium and vitamin d interrelationship:

    Magnesium is 'Used Up' when Vitamin D is converted into its active form in the blood
    Magnesium is 'Required' to convert Vitamin D into its active form in the blood

    It works BOTH ways. Magnesium is not JUST depleted, but you won't convert vitamin d unless you have enough magnesium in order to allow vitamin d to BE converted!! In many cases where large doses of vitamin d are taken but the vitamin d level does not come up, both the person deficient and their doctor believe that they are having Vitamin D Absorption problems.

    [Deficiencies, induced]
    from http://drcarolyndean.com/2014/06/no-clear-role-for-vitamin-d/
    So, if you take Vitamin D in high doses and don’t have enough magnesium, zinc, Vitamin K2, Vitamin A or boron, then Vitamin D isn’t going to work. Or in the worst case scenario, the excess Vitamin D gives you symptoms of deficiency of these nutrients.

    When someone is low in magnesium and they take high doses of Vitamin D (above 1,000 iu per day), their magnesium is further depleted and they experience symptoms of magnesium deficiency. People have told me about 6-week migraines, seizures, angina, heart palpitations, and muscle cramping when they take Vitamin D. Some very magnesium deficient people can get symptoms when they lie out in the sun because the Vitamin D they are making uses up what little magnesium they have.
     
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  7. Helen

    Helen Senior Member

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    Many years ago I had the opportunity to listen to a talk that Dr. John R. Lee gave. He had some really good information about osteoporosis (a.o.) and very good results from treatment with natural progesterone (the study was published in the Lancet). I hope that you´ll find something useful on his homepage or elsewhere. Best of luck!
    http://www.johnleemd.com/results.php?term=osteoporosis
     
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  8. Tammy

    Tammy Senior Member

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    Orgono G5 siliplant.....(Silica) for osteo
     
  9. Kati

    Kati Patient in training

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    Be especially mindful of snow and ice, slippery stairs, tripping hazards in your home (including bath tub) and dizziness spells (do sit or lay down if you are dizzy)

    Best wishes.
     
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  10. mermaid

    mermaid Senior Member

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    Thank you @Kati . Luckily I live in one of the parts of England that rarely gets snow or ice. If it does snow then I will be staying in, as we live on top of a hill that turns into a serious hazard. I knew a lady who broke her hip on it!

    I have recently had the stair carpet renewed as I felt it was a hazard, and put in an extra rail - was thinking of my old age, before I knew about the osteoporosis.

    I will definitely be more cautious about everything now I think. Years ago I fell off a small step ladder and badly injured my knee ligament, and it taught me to take less risks as I discovered that I have hypermobile knees and ankles that turn rather easily.
     
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  11. mermaid

    mermaid Senior Member

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    Thank you @PatJ That is very interesting and not read of that phenomenon previously (re the pain issue). The odd thing is though, that I have been taking Vit D all along for at least 5 years at a good level (2000iu) and also took a test a few years ago to check my levels which were good. I have also been taking it with most of those co-factors mentioned. The only one I didn't (sadly) was the Vit K2, which I began recently as recommended to me by someone.

    So I fear that my osteoporosis may well be down to my overuse of T3, but if that is the case and I have now reduced it, I am hoping that the supplements will be able to kick in and restore some of the loss now. If it is not down to that then I don't really know what could have caused such a bone loss (other than we are all different I guess and some lose more bone than others post menopause.
     
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  12. mermaid

    mermaid Senior Member

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    Thank you @Helen. That looks interesting and helpful. I will read up on those articles. I do want to explore the use of natural hormones and I have just joined a FB group to help. I am a bit dubious about doing it without good medical support as I know it's considered too dodgy these days for people over 60 to be taking HRT due to risk factors of breast cancer and heat problems. Maybe natural progesterone is safer though.
     
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  13. Kati

    Kati Patient in training

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    Prevention is key
     
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  14. wastwater

    wastwater Senior Member

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    Try solgar vitamin D3 drops
     
  15. Little Bluestem

    Little Bluestem All Good Things Must Come to an End

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    When I was found to have osteopenia/osteoporosis, my doctor recommended OsteoPrev by Orthomolecular Products. It contains folic acid. One study found that about of 80% of post-menopausal do not convert folic acid. If you are one of those, you will need to buy the components separately, so that you can get a different form of folate.
     
  16. SherDa

    SherDa

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    And there is a protein component to bone. I think bone is between 30% and 40% collagen, so anything to improve collagen health might also improve bone health.
     
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  17. Laelia

    Laelia Senior Member

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    This article might be of interest:

    http://articles.mercola.com/sites/a...=20170327Z2&et_cid=DM140094&et_rid=1943275885

    From the article:

    "If you know anyone with osteoporosis, you may be familiar with some of the more overt signs, such as broken bones, weak grip strength or back pain. People with this condition may develop a "stooped" posture or even become shorter because their bones are literally being compressed.

    There's good news, though, as a new study has revealed dramatic and positive effects from dried plums. Scientists found that "dried plum not only protects against but more importantly reverses bone loss in two separate models of osteopenia," another name for bone loss and the forerunner of osteoporosis."

    I have no idea if the science behind this is any good but I don't think adding dried plums to your diet can do any harm! :)
     
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  18. Sushi

    Sushi Senior Member Albuquerque

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    As I read this thread title, a new blog entry notification flashed in the corner of my screen. This person is well qualified and has a lot of good information on her site: Dr. Susan E. Brown, PhD, https://www.womenshealthnetwork.com/community/osteoblast/post/top-3-multivitamin-myths.aspx? She covers topics like:
    Better Bones Blog topics
     
  19. pamojja

    pamojja Senior Member

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    In Japan they had good results with 45mg of vitamin K2-mk4. This is the one I take: http://www.k-vitamins.com

    Highly recommend to read the compilation of 'Research' > Bone' at this side.

    The best.
     
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  20. IreneF

    IreneF Senior Member

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