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  • Intro/Frustration/Long (sorry)

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    Old 05-23-2008, 12:06 PM   #1
    ajillity
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    Unhappy Intro/Frustration/Long (sorry)

    I am soooo glad I found this board! You guys have been a blessing to me just in reading some of the past posts.

    I am 57 years old, and feel like I'm falling apart. I have seen my cardiologist, gynocologist, rheumatologist, and primary care physicians. I have been poked and prodded, and have had 6 blood draws in as many weeks. I have an appointment with a neurologist next week.

    Background: I was on Lipitor for about a year to lower my cholesterol (no one warned me about statin drugs). In the past six months or so, my legs have become so painful and weak (thigh area) that I have difficulty walking. A blood draw showed a creatine kinase of 510; way high, so the Lipitor was discontinued immediately. The CK has been slowly going down until it is now normal, but the leg issues continue. Additionally, I am experiencing:

    dizziness (to the point of not working/driving)
    extreme fatigue
    depression
    tingling in hands
    memory problems
    confused/foggy feeling
    RLS

    So, I am on Requip for the RLS (no relief) and Effexor for the depression. Additionally, my gp has prescribed (but I've not yet taken) Tricor for the cholesterol, Flexeril for relaxing my muscles, and physical therapy for the leg pain.

    A friend suggested B12 deficiency, and after doing alot of reading (including learning that the Nexium I have been taking has been linked to B12 deficiency), I "insisted" that I have a B12 draw and urinalysis. Yes, I had to insist on the labs. The B12 came back at 191.

    I just spoke with the doc, who does not seem alarmed (remember, she didn't think of running this test), and suggested I go to the health food store and get a B-complex vitamin and see her again in 6 weeks. That's all. This does not seem like the preferred course of treatment to me. Shouldn't we be looking at absorption issues and boosting that B12 faster than a "complex" vitamin will? I have no idea what my ferritin level is (or even what that means). Maybe more bloodwork is needed also?

    Comments, please. You all have much more experience in symptoms, diagnosis and treatment than the docs seem to have. I would love to have your direction and encouragement.

    Sorry to be so long-winded, but no one has understood what I'm going thru... until now!

    Thanks so much!

    aJILLity

     
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    Old 05-23-2008, 01:27 PM   #2
    ChristineVA
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    Re: Intro/Frustration/Long (sorry)

    Wow!

    First off, I think many of your medications are culprits for feeling poorly. I know you need them, but take that into consideration.

    Just last week, my co-worked tested at 248 for B12 and she has to have weekly shots for 4 weeks. They will then measure her B12 and if she is holding her own, then they will switch her to liquid or sublingual supplements. This type is a *must* if you are having absorption problems because a tablet will not absorb either.

    Ferritin is a protein that helps predict what your iron storage is. You could be iron deficient too and there is no way to really know that without a ferritin test and an iron panel. You should ask for that too just to be sure that you don't have a "dual" issue.

    As for the Nexium, I have been on Prilosec and Nexium for about 9 years and it has not affected my B12 so it's not necessarily a fact that it will inhibit your absorption but, let's just say that it "can."

     
    Old 05-23-2008, 03:16 PM   #3
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    Re: Intro/Frustration/Long (sorry)

    aJILLity--These symptoms are very common with a B-12 def. and/or low iron. Did they tell you if you are anemic or not? Your Hct and Hgb numbers will tell you that, if they are below range. You can always post them here for people to take a look at.

    RLS is commonly associated with IDA, Iron Deficiency Anemia. Most of your symptoms are associated with B-12 deficiency too. IMO, I would discontinue the drugs that are not helping and focus on raising the B-12. I agree with you, that you should have a more aggressive loaded dose of B-12 in the beginning via injections. Your numbers are really low for B-12. I would combine this with a multivitamin and sublingual B-12 which is taken under the tongue. The vitamins will help in rebuilding blood cells which takes time to repair. Good for you to insist on checking your blood count, sometimes we have to do this, but it is surprising to have to ask initially. Perhaps when you see the Neuro, they might prescribe injections for you based on your symptoms and numbers. A B-12deficiency can cause irreparable nerve damage long term and a Neuro might prescribe a more aggressive treatment plan of care for you.

    As far as a B-12 deficiency from PPI's, I have heard and read that it can to some degree, but usually does NOT happen. It is iron that is commonly malabsorbed due to long term PPI use. My B-12 is high and iron was low ~none~ and is very slowly absorbed I am told due to long term PPI use. I also think that thyroid is related to this for some people that do not have a normal functioning thyroid gland. This can also be related to high Cholesterol levels. I would look for a cause for B-12 deficiency but it is not always easy to get answers. A GI doc would help you there. And, as Christine said, get your iron stats done with Ferritin because many people are IDA and B-12 def at the same time it is very common. You won't know until you check it out. Keep us posted. FLFLOWERGIRL

     
    Old 05-24-2008, 05:25 AM   #4
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    Re: Intro/Frustration/Long (sorry)

    ajillity - Lipitor will affect the muscles in the lower part of the body and that is why supplementing with Co-enzyme Q10 is important, but doctors don't tell you this. This happened to somebody i know after he had a heart attack. He ended up doing a trade off with his doctor and got off the Lipitor and began taking fish oil daily. Salmon oil is the best as the ones which simply state "fish oil", without telling you what sort of fish the oil is derived from, can be a bit dubious and you could be getting something inaffective. I found out that some of the fish oils come from bad quality fish which is being used for pet food as it can't be used for human consumption.

    I agree with the others, your symptoms can be partly resulting from side effects of all the medications you are taking as well as other things which are going on in your body.

    Ever since i was diagnosed with Hashimoto's i've been doing a lot of reading up on various things to do with the thyroid and there appear to be so many possible symptoms which turn up on the thyroid symptoms list. I know not everybody has a thyroid condition, but i guess it's something which shouldn't be ruled out.

    I don't now much about low B12, mine was mysteriously fine, just everything else was low.

    Might be best to get everything possible tested and make sure you keep a copy of all test results for future reference. Hoping you get some answers soon and keep us posted

     
    Old 05-27-2008, 10:14 PM   #5
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    Re: Intro/Frustration/Long (sorry)

    Thanks everyone for the replies. Here's an update after my appointment with the neurologist today.

    I'm on 1000 mg B-12 per day for one week. Then we'll rerun the bloodwork to see if my level has moved at all. If not, we'll begin to look at absorption issues. Additionally, he's doing a full blood workup, including iron and ferritin. He's also ordered MRI's of my brain and neck (I've been having neck pain for several months), as well as nerve conduction studies of both arms and both legs.

    While I don't have any answers today, at least I feel like someone is finally taking some action in trying to find the cause of all my problems.

    I'll keep you posted...
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    Old 05-29-2008, 03:36 AM   #6
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    Re: Intro/Frustration/Long (sorry)

    That's good news. At least your doctor is open to doing further testing rather than simply blowing you off with excuses. All the best and keep us posted on your future results

     
    Old 06-05-2008, 04:08 PM   #7
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    Update

    I saw the Neurologist today. My brain and neck MRI's are normal, with a few abnormalties in the spine, but nothing that he felt would cause any of my current issues. I had a nerve conduction study on my legs, and it does show idiopathic neuropathy.

    As for my blood results. After less than a week on 1000 mg B12, my level has gone from 191 to 333! Obviously, I'm still on the low end, but I'm feeling optimistic about that result. This is the first time some of the other values have been checked...

    Ferritin: 56 (range: 10-232)
    Iron: 71 (range: 40-160)
    HCT: 38.2 (range: 35.0-45.0)
    HGB: 12.9 (range: 11.7-15.5)
    RBC: 4.15 (range: 3.80-5.10)

    They all seem to be on the low side of normal. Would these be issues?

    I'm wondering if I ought to go get a B12 injection to hurry things along, instead of just taking the pills like the doc said to, or should I be happy with a 142 point increase in 5 days, and keep doing what I'm doing?

    What do you all think???

    BTW, yesterday I felt like I was walking easier, and this morning I actually accomplished something at work (feeling a little more focused). My realization of these things was BEFORE I received my blood results today!
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    Old 06-06-2008, 04:48 AM   #8
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    Re: Update

    ajillity - Isn't it a wonderful feeling to actually feel focused and to be able to accomplish something

    Your ferretin is quite good and if you can keep it at 56 or even a bit higher wont hurt. I never used to get my iron levels checked as i used to believe that if you ate meat in your diet that you couldn't be iron defficient. Even when i did begin getting my iron tested and it kept dropping little by little i never thought it was an issue as my doctor never drew attention to it. Now that i know what low iron can do i intend keeping an eye on my iron and never letting it drop too low. My thyroid doctor wants my iron at between 100 - 125.

    I don't know much about B12 as i'm good in that department, just not good in so many other areas.

     
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