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Good news, bad news. Macrocytic anemia?

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  • BigMama1
    started a topic Good news, bad news. Macrocytic anemia?

    Good news, bad news. Macrocytic anemia?

    So the good news following surgery to remove half my thyroid is that it wasn’t malignant. A big surprise based on the ultrasound results and a big relief.

    So now that we are doing bloodwork at regular intervals we’ve discovered that I have something called Macrocytic anemia - high MCH and MCHC levels.

    Anyone know anything about this condition? I haven’t been able to get in to see my family dr yet to follow up. My B12, ferritin and all thyroid levels are well within normal. The only other red flag is vitamin D. It was low in the fall so I’ve been supplementing with 3,000 IU/day, plus vitamin K2. Levels are even lower now than in the fall - down to the “insufficient” range.
    Last edited by BigMama1; May. 10, 2019, 06:12 PM.

  • BigMama1
    replied
    Originally posted by walkers60 View Post
    For those trying to raise Vet D levels be sure you are doing it correctly and please be aware you can harm yourself if this isn't done correctly .
    If you don't take your D with fat then it won't be absorbed. Its best to take it several times during the day and always with fat. If you D is 30 or above then you are normal.
    If you are having issue with low D and other nutrients then you have issue with absorbing nutrients , most common cause is Celiac but see a GI doctor you may need some testing.
    Vit D also can relate to kidney function as about 30% of the people who donate kidneys end up with deficiencies.
    Have you had Thyroid antibodies tested as that goes with low D.and thyroid issues.

    B12 injections should only be given to people with pernicious anemia.
    Really sounds like you need a better work-up.
    Too much B 12 will cause neuropathy.
    Be careful folks with the supplements you take.
    See a Gastroenterologist for nutritional deficiencies not a Endo.
    Have you had Ferritin tested and iron sat?
    When I was taking the 3,000iu/ vit D day prescribed by the dr originally, I was taking it several times a day. Now it’s a single 50,000iu pill taken once a week so that’s not an option. Thyroid antibodies are normal. Ferritin is normal. Everything in fact is normal except the vit D and the red blood cell MCH and MCHC. B12 is normal, although lower than 6 months ago.

    I would love to get a better work up but I don’t know how or where to go about it? In Canada you don’t get referred to a specialist unless there is something demonstrably wrong or suspicious that can’t / shouldn’t be handled by your family dr.

    Leave a comment:


  • walkers60
    replied
    For those trying to raise Vet D levels be sure you are doing it correctly and please be aware you can harm yourself if this isn't done correctly .
    If you don't take your D with fat then it won't be absorbed. Its best to take it several times during the day and always with fat. If you D is 30 or above then you are normal.
    If you are having issue with low D and other nutrients then you have issue with absorbing nutrients , most common cause is Celiac but see a GI doctor you may need some testing.
    Vit D also can relate to kidney function as about 30% of the people who donate kidneys end up with deficiencies.
    Have you had Thyroid antibodies tested as that goes with low D.and thyroid issues.

    B12 injections should only be given to people with pernicious anemia.
    Really sounds like you need a better work-up.
    Too much B 12 will cause neuropathy.
    Be careful folks with the supplements you take.
    See a Gastroenterologist for nutritional deficiencies not a Endo.
    Have you had Ferritin tested and iron sat?

    Leave a comment:


  • BigMama1
    replied
    Originally posted by Ceylon Star View Post
    Jumping into the Vitamin D discussion for a minute.

    i have a chronic VitD deficiency. I can take oral supplements til the cows come home and they don't do squat. My body simply cannot process the oral supplements.

    I get monthly B12 and D injections. My B12 levels tend to be on the lower side but nowhere near as low as my Vit D.

    My endocrinologist believes that the VitD issue is related to lithium toxicity when I was a teenager and my psych at that time kept upping my lithium dose when we weren't seeing any positive results.

    Have you had any sort of illness or toxicity in the past that might be causing the deficiency despite daily supplementation?

    i could be completely crazy, but thought I'd toss that tidbit out anyways
    Not that I know of. I haven’t had any unusual or serious illnesses, and the only long term medications I’ve been on are Zoloft, steroid nose spray and steroid cream for excema.

    It’s coming up on a moth now of taking the 50,000iu vit D weekly, and almost time to go back for another B12 shot. I think I will have the bloodwork checked again at 6 weeks, not 3 months like my dr said. If the thyroid levels are continuing to change I want to catch it early. What I really want is her to refer me to an endocrinologist!

    Leave a comment:


  • Ceylon Star
    replied
    Jumping into the Vitamin D discussion for a minute.

    i have a chronic VitD deficiency. I can take oral supplements til the cows come home and they don't do squat. My body simply cannot process the oral supplements.

    I get monthly B12 and D injections. My B12 levels tend to be on the lower side but nowhere near as low as my Vit D.

    My endocrinologist believes that the VitD issue is related to lithium toxicity when I was a teenager and my psych at that time kept upping my lithium dose when we weren't seeing any positive results.

    Have you had any sort of illness or toxicity in the past that might be causing the deficiency despite daily supplementation?

    i could be completely crazy, but thought I'd toss that tidbit out anyways

    Leave a comment:


  • BigMama1
    replied
    Originally posted by skyon View Post
    There has been a lot written about too much vitamin D to balance out a big push to increase vitamin D. Imo, and I'm in no way a doctor, the main thing is to have your blood monitored so you can see it is not building up.

    I'm not really into gurus, but on occasion have paused because some thing felt right - look up Dr. David Angus and supplements, particularly vitamin D, and this

    I try to take a low supplement when I remember, because I'm really low as well. I've had relatives and friends diagnose to take it as a supplement due to being low, particularly when fighting types of benign or malignant type diagnosis. I don't doubt it may help but the point I keep in mind with all of it, is that over supplementing vitamins without monitoring, blood work, really can hurt.

    I noticed this thread because of the topic of thyroids. My dentist just increased xray covering over your neck due to upticks in thryoid malignancies.
    I noticed when my horse was having xrays this week the vet gave me neck piece for thyroid in addition to the apron. Don’t remember them doing that before

    Leave a comment:


  • skyon
    replied
    There has been a lot written about too much vitamin D to balance out a big push to increase vitamin D. Imo, and I'm in no way a doctor, the main thing is to have your blood monitored so you can see it is not building up.

    I'm not really into gurus, but on occasion have paused because some thing felt right - look up Dr. David Agus and supplements, particularly vitamin D, and this

    I try to take a low supplement when I remember, because I'm really low as well. I've had relatives and friends diagnose to take it as a supplement due to being low, particularly when fighting types of benign or malignant type diagnosis. I don't doubt it may help but the point I keep in mind with all of it, is that over supplementing vitamins without monitoring, blood work, really can hurt.

    I noticed this thread because of the topic of thyroids. My dentist just increased xray covering over your neck due to upticks in thyroid malignancies.
    Last edited by skyon; May. 21, 2019, 09:36 AM.

    Leave a comment:


  • skydy
    replied
    As long as you are not feeling ill and your blood work remains within normal limits, I wouldn't worry. That said, you should continue to be monitored and it sounds as if you are on track for that.

    Leave a comment:


  • BigMama1
    replied
    Originally posted by hoopoe View Post
    You may wish to do some further reading on the Vit D fad. I think you need a new doc not someone who appears find with charging someone for questionable injections.
    I’m not exactly sure what you mean? Is it a “fad” to treat a deficiency? In general I think taking vitamins is silly when a balanced diet should give you all you need, but supplementing when you are deficient in something seems reasonable. Either way I’m not being “charged” for the treatment as it’s cocered through our universal health care program. My concern is more that she’s treating
    symptoms and doesn’t seem interested in why the symptoms are occurring.

    Leave a comment:


  • BigMama1
    replied
    Originally posted by skydy View Post
    Since you haven't been diagnosed with leukemia I wouldn't panic at this point. I would follow your doctor's recommendations. It sounds as if she is covering the bases and "ruling out".

    Keep up with the blood work. It usually takes time for vitamin supplementation to have an effect. If you are feeling very ill you will have to find someone to address your issues sooner.

    Did anyone discuss dietary guidelines with you? Deficiencies can often be remedied with a diet that emphasizes what you are lacking. Vitamins and minerals are often much better absorbed through natural means (food) rather than pills.


    Hang in there.
    She discussed literally nothing with me. This is the second time I’ve seen her following my surgery (first time was to order the bloodwork) and she didn’t ask how the surgery went, how I was feeling, now my scar was healing, if I was having any symptoms...nothing. No physical exam, not even my blood pressure. First appt she just gave me the requisition for the bloodwork. I asked if I should be seeing an endocrinologist for post-surgery followup and she said only if the thyroid blood tests came back abnormal. Sounds reasonable.

    Second appointment she just showed me what the abnormal results were, wrote the RX for the B12 injections and supplements, gave me the injection and gave me a requisition for follow up bloodwork in 3 months. Because Dr. Google says the macrocytic anemia can be the result of a thyroid issue I did ask if it was related to having half my thyroid removed 5 weeks prior and she said definitely not. I also asked if it was a concern that my vitamin D levels dropped despite supplementing for 6 months and she said not really.

    In the meantime I compared my thyroid level now with bloodwork from last September and while they are still in the normal range , my TSH has gone up significantly

    Leave a comment:


  • hoopoe
    replied
    You may wish to do some further reading on the Vit D fad. I think you need a new doc not someone who appears find with charging someone for questionable injections.

    Leave a comment:


  • skydy
    replied
    Since you haven't been diagnosed with leukemia I wouldn't panic at this point. I would follow your doctor's recommendations. It sounds as if she is covering the bases and "ruling out".

    Keep up with the blood work. It usually takes time for vitamin supplementation to have an effect. If you are feeling very ill you will have to find someone to address your issues sooner.

    Did anyone discuss dietary guidelines with you? Deficiencies can often be remedied with a diet that emphasizes what you are lacking. Vitamins and minerals are often much better absorbed through natural means (food) rather than pills.


    Hang in there.

    Leave a comment:


  • BigMama1
    replied
    Originally posted by Simkie View Post

    Ohhhhhhhhhhh. Damn. How frustrating! No options around that?
    Nope. Unless I want to go to the US and pay out of pocket. Or unless you have close friends / family who are doctors and can get you in faster, or you are a major donor to a major hospital...

    ETA to say that’s not quite true...I could pay $4k for an annual “membership” to an executive health program that includes same day testing and results, and immediate referrals to specialists.
    Last edited by BigMama1; May. 15, 2019, 09:49 PM.

    Leave a comment:


  • Simkie
    replied
    Originally posted by BigMama1 View Post

    Yup. I’m in Canada so all specialists require referrals and, if it’s something not life-threatening, the wait to see one can be many weeks and even months, depending on the speciality.
    Ohhhhhhhhhhh. Damn. How frustrating! No options around that?

    Leave a comment:


  • BigMama1
    replied
    Originally posted by Simkie View Post
    Do you need a referral to see a specialist? Most insurance companies don't require it. Find a hematologist and take your labwork there. It sucks when you feel your primary isn't responsive, I'm sorry
    Yup. I’m in Canada so all specialists require referrals and, if it’s something not life-threatening, the wait to see one can be many weeks and even months, depending on the speciality.

    Leave a comment:


  • Simkie
    replied
    Do you need a referral to see a specialist? Most insurance companies don't require it. Find a hematologist and take your labwork there. It sucks when you feel your primary isn't responsive, I'm sorry

    Leave a comment:


  • BigMama1
    replied
    I am so frustrated with my family doc. She called me in to go over the bloodwork results and didn’t even so much as ask how I was feeling or whether I was having any symptoms.

    She is insistent the macrocytic changes have nothing to do with thyroid, and doesn’t seem concerned about why there are changes, or why my vit D levels have continued to drop in spite of supplementation.

    She doesn’t see any reason to refer to a specialist - just wants monthly B12 injections (even though my B12 levels are normal) and weekly dose of 50,000iu Vit D2, and then check bloodwork again in 3 months.

    Thoughts? I’m thinking about going to a walk in clinic for a second opinion?

    Leave a comment:


  • hoopoe
    replied
    Sorry I miss read your post. The missed period made me read that your K levels were dropping. Not sure what to believe about the rise of Vit D diagnosis. The anemia, however may be linked to the thyroid and may resolve or it may be a new progressive issue which will require monitoring. Personally I would consult a hematologist or oncologist

    Leave a comment:


  • BigMama1
    replied
    Originally posted by hoopoe View Post
    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5689413/

    here is a paper that is fairly readable. I would suggest that you will need some follow up over the next 6 months to establish a trend. This may be consequence of your thyroid pathology or it may be something more chronic. Time will help sort that out.

    excess vitamin D can deplete vitamin K. At 3000 IU/day you may be overdoing it
    I’m not sure I understand. On 3,000 IU of vit D/day my D levels have continued to drop. We are supplementing with K2 in addition to the D, but I don’t think they tested K levels. Is it related to the red blood cell change?

    Leave a comment:


  • hoopoe
    replied
    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5689413/

    here is a paper that is fairly readable. I would suggest that you will need some follow up over the next 6 months to establish a trend. This may be consequence of your thyroid pathology or it may be something more chronic. Time will help sort that out.

    excess vitamin D can deplete vitamin K. At 3000 IU/day you may be overdoing it

    Leave a comment:

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