Test Results Yippee!!!!!!!!!

Discussion in 'The Watercooler' started by susiestar, Mar 2, 2012.

  1. susiestar

    susiestar Roll With It

    I was getting a bit worried because I had not had the results of my mammogram or my bone density scan back. It finally came yesterday and I am very pleased!!

    The mammogram was totally normal, which we expected but of course there is always a bit of worry because you just never know.

    I am thrilled that I insisted on not just the bone density scan report but the actual results and a copy of the images on cd. I guess listening to my body did a LOT more than I thought. 6 years ago I had a scan that gave me a close to 80% chance of breaking a major bone in the next ten years. It took another 2 years for anyone to clue in that I had almost no Vit D in my body and that I get super super sick when I take vit D. Throw up for days sick. I fought to keep the supplements down, even to the point of super expensive shots that were specially compounded and did almost nothing to raise the level. Not even a 50% increase in the level after 3 months of having my mother pay for them. I hated asking, but what good would I be to my kids if my body just broke and then wouldn't heal?

    Two years ago I still didn't have any D in my blood, the surgeon who did my neck repair 1 yr before that was super worried that it wouldn't heal and sure that another one wouldn't be possible, and I was just over it all. I stopped fighting to choke down supplements. I searched and found that I can keep cheese down, and I can eat ONE flavor of yogurt that is only made by ONE company that I can find. So I eat that, at least 1 yogurt a day and some cheese on something. I walk and move as much as I can, I do a lot of stretching and gentle range of motion exercises that I learned as a teen and have always done, and I just listened to my body.

    Guess what???? I was right and the docs were wrong. I now have a 2.3% greater than normal risk of breaking a major bone in the next 10 years!!!!!!! From 80% higher to 2.8% higher!!! I actually got out my old test reports to make sure they were comparing the same things and using the same standards and yup, they did! My bones have gone from a hugely high risk of fracture to only slightly higher than normal risk of fracture!!!!!!!

    AND I am not taking phenergan every 4 hrs, 4 tabs a day max and still vomiting every day because the calcium/vit D supplements! It is something to celebrate!!!

    Milkshakes for everyone!!!!!
  2. Hound dog

    Hound dog Nana's are Beautiful

    Being a member of the medical profession, I probably shouldn't say this..........but docs don't have all the answers. They do have a lot of knowledge, but not all the answers. They probably never will. Like here, I take what I can use and I don't worry about the rest.

    The last thing in the world I should drink is tea and coffee due to the diuretic effect of the caffiene. Nephrologist liked to stroked when he found out how much I drink of both. He told me it would kill me, while I told him it obviously hadn't as I'm still around. lol But I tried it his way......and I retained water worse than ever even after the lasix dosage was doubled and put at twice a day. I've gone back to my tea and I feel better. My goal is not to get well. I'm not going to get well. My goal is to feel as good as I can on any given day. I think it was like a year or so later they "discovered" the antioxidants in tea. (now it's healthy lol )

    Heck, they can't make up their minds what we should / shouldn't eat anyway or how good or bad it is for us. Those 8 glasses of water per day that was supposed to be so good for you? Well now they've changed their minds......you're supposed to get your water in your food. (whatever that is supposed to mean) Red meat is now good for you, and you should eat it in moderation.

    So I eat according to what makes me feel better; low salt because salt does a number on me fast and it doesn't take much either. I watch the amount of animal protein, but I won't stop eating it. ect

    I'm glad the vit D issue is correcting itself without drastic measures that make you feel like you're dying. No one should have to feel that way as a form of "treatment". in my opinion

    Yay for you!!! : )
  3. Signorina

    Signorina Guest

    Good news from the doctor is always a blessing. HOORAY!
  4. witzend

    witzend Well-Known Member

    Good for you for finding the right thing for you! Not a lot of people would have done that!
  5. Nancy

    Nancy Well-Known Member Staff Member

    Wow I can't believe that...just from one yogurt and some cheese? I have very low vit D level too and bone loss and was taking actonel for several years and the past two years a prescription vit D pill every other week. I am lactose intolerant so get no calcium or vit D from food but I didn't think one yogurt and some cheese would do it.

  6. Kathy813

    Kathy813 Well-Known Member Staff Member

    I had very low vitamin D levels and took prescription strength Vitamin D once a week for a month and then daily supplements for over a year now. Luckily, I had no adverse reaction to vitamin D. At my latest bone density test, my levels improved without taking any other medications. I was so happy because I didn't want to take any of the bone density medications since I have heard of people having problems with joint pain as a side effect.

    I'm sorry that vitamin D supplements didn't work for you Susie but I am glad you figured out an alternative! :hapydancsmil:

  7. InsaneCdn

    InsaneCdn Well-Known Member

    Nancy - there ARE other good sources for calcium... including almonds. It's been an old standby for me for a long time. Canned fish is good, too - just crush up the bigger bones and include. And if it's "just" a lactose problem (mine isn't), you could try goat cheese, or lactase-inocculated yogurt.
  8. recoveringenabler

    recoveringenabler Well-Known Member Staff Member

    Wonderful news Susie, I am very happy for you! Great job in doing what you felt was right for your body. Yes, celebrate your victory!!
  9. TerryJ2

    TerryJ2 Well-Known Member

    WOW! That's FANTASTIC! Congratulations!!!
    And I agree, tests are only tools, not be-all and end-all items. You have definitely done the right thing. Keep up the good work, Susie. Bravo!!!

  10. susiestar

    susiestar Roll With It

    I actually don't have a clue if my vit D levels are up or not. The doctor forgot to order them. He thought since my calcium levels were on the high side of good that the vit D testing wasn't needed. He forgot somehow that the calcium levels were up because it was coming OUT of my bones, nto going into them. I was beyond frustrated when he did this three times, then figured I just couldn't continue to stress over it - stress had to be as bad and the low D levels.

    Honestly, they don't really know why/how my bones got better. No one has a clue and it is NOT supposed to work that way. When the first bone density scan was run they actually did it a second time for free, telling me the results were not possible for a woman in her thirties. I went to the endocrinologist that the doctor wanted me to see, figured out how to get the shots and how to try to keep the supplements down, and it all tore up my body. Right now they are pretty much as clueless as they were after the first test.

    We did NOT take any of the bone building medications because I have a long history of gastric problems and because if you don't have enough calcium and vit D in your body, the bone building medications can put you in what my rheumatologist called "complete agony that we mostly just give you enough morphine to sedate you for the time until it is out of your body" and he was pretty darn sure that as I was already on a lot of pain medications that it would involve a lengthy hospital stay. At the time he had a patient in the hospital in a medically induced coma to get her to the point the bone building medication was out of her system. He said that few docs that he talked to knew that the bone building medications woudl do that if your body wasn't able to put the calcium into your body, and that they were all pretty upset that there was NO warning to them about this from the drug companies. He was a super caring, very sweet, very much on top of the latest research doctor, and even went to several conferences specifically for patients with osteoporosis/poenia to see what other docs were doing in patients who did not tolerate Vit D. He ended up with about four of us from all over the state because he asked so many questions and other docs sent people to him. So after he had done all that, when he said to be super wary about the bone building medications (boniva, actonel are the ones he meant), I listened and flat out told the docs it would take more to convince me that the medication was a good choice for ME.

    Anyway, I did go through several months where I ate a LOT more than1 yogurt a day, some days it was all I ate other than fruits and veggies. NOT the healthiest, esp as there is only one flavor that doesn't make me sick to my stomach (texture/taste issue - so many remind me of snot that it is just not funny and I totally am the source of my kids' sensory issues and I totally own up to that! I am a pickier eater than my kids are!), so it is a challenge.

    I learned a LONG time ago that docs are probably more confused that patients/parents are about the body. I drive husband nuts with this because he thinks that docs know everything and I generally have an idea of what I want them to do and why and I am not terribly patient when they don't agree with me. If the doctor will explain what/why he thinks his way is better, I will TRY. But that try is fairly short if I don't see positive results. I am sure I am a challenging patient, but mostly it is because I want to know the reasoning behind the diagnosis/rx/plan. I also want to be consulted and not ordered.

    And I only get worse if it is my kid. So few docs will admit that they are totally clueless and that scares me. I think MANY of us would be better served by following our instincts and remembering that moderation is the best thing for almost every problem. well, except allergies. But for most things? If you pay attention to your body, you can TELL if you are doing the right things.

    I don't know if this would help ANYONE else. I just know that for my body there simply was not any benefit and there was a LOT of harm from forcing myself to take all those vit D supplements.

    I just am thankful that it has helped that problem. VERY thankful!!
  11. InsaneCdn

    InsaneCdn Well-Known Member

    Susie... just wondering. Did your activity level change over that period? Because, most people don't know this, but bone density is difficult to build without weight-bearing exercise.
  12. Star*

    Star* call 911........call 911


    Not exactly sure what you said (don't get too much medical jargon like you do) but I remember how sick vitamin D made you. I'm glad you hear your tests came back good!
  13. Kathy813

    Kathy813 Well-Known Member Staff Member

    Susie, have you looked into hyperparathyroidism? High calcium levels (which I have too . . . not in a good way) and osteoporosis/penia are symptoms. I had to go through testing to rule it out. Get your PTH levels checked. High calcium levels and high PTH levels are indicative of hyperparathryoidism. If you have that, taking vitamin D supplements can make you feel even worse.

    This is one of the best websites I have found on hyperparathyroidism:


    Last edited: Mar 4, 2012
  14. klmno

    klmno Active Member

    Wow, that is great! Sorry I missed this earlier and am so late jumping in.
  15. susiestar

    susiestar Roll With It

    Thanks Kathy! My pain doctor suggested that and the doctor did some tests. Nothing showed up though, so if there is a problem they did the wrong tests. I do have a trashed thyroid though, because that is one area the autoimmune junk settled. That website is great!
  16. HaoZi

    HaoZi Guest

    Don't forget Lactaid products and Yoplait now has a lactose-free yogurt out in four flavors (it has a green lid, look for it).