Home Forums General Discussion Bloodwork – herxing/SD related, or something else (Multiple Myeloma)?!

Viewing 6 posts - 16 through 21 (of 21 total)
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  • #465813

    Hi guys,

    Yes will talk to the pharmacist, see if there is anything we can do. This is a way off yet, really she needs to be settled with everything else before we attempt something so extreme…!

    As for the iron, we managed to find Chelated Iron Glycinate over here (we read this is supposedly better-absorbed, and less nasty on the digestive tract/constipation etc. However, its not sold as a ‘supplement’ over here, but as a medicine, therefore there is no recommended dosage on the packaging (presumably nbecause your Dr would usually advise how much).

    The dosage her tablet is as follows:

    Chelated Iron Glycinate: 150mg
    Folic Acid: 600mcg

    I’ve read online that a typical dosage for iron sulphate would be 50-60mg, twice a day. How does this compare with 150mg of Glycinate? We would ask the Dr, but we don’t have an appointment for some time and it would be great for her to start taking some Iron, just to see if this picks things up for her.

    Thank you everyone!

    ---

    Here for my Mother In Law.

    Scleroderma 30+ years, Lyme/Bartonella (perhaps 30+ years too, diagnosed in October 2019), Hypothyroid, Anemia (of chronic diseases we think?), Neuropathy, Mini-stroke/brain lesions Oct 2019, Candida.

    Current Meds:
    **Minocin 100mg x2 day, every day. **Rifampin 300mg 1x day MWF. **75mcg Levothyroxine. **5mg Prednisone. **Clopidogrel 75mg. **300mg Fluconazole every Sunday. **300mg Gabapentin. **LDN 4.5mg.

    Current Supps:
    Vitamin B-complex, C, D, E. Potassium Glucona

    #465814
    Linda L
    Participant

    Steve, before she starts taking iron check her results. It is dangerous to overdose iron because it accumulates in the body. Also iron should be taken with vitamin C.

    RA tried everything: Methotraxate, Arava, Humira. Pneumonia three times. Anemia. Very low iron. Hypothyroidism
    AP from April 2014 till August 2015. No luck.
    Current medications: Natural thyroid, Mobic, LDN, supplements incl. milk thistle, vitamins and minerals.
    MTHFR heterozygous

    #465853

    Thanks for this Linda. It turns out that she does indeed have normal level or Ferritin in her blood, which is iron right? Which is pretty much what you and Maz have both said… we did realize this before she started taking it, so we are avoiding it for now until we get the final results back…

    Dizziness has in general been slightly better, still present but that’s to be expected. Hopefully when we get the results back, one of her doctors can suggest the next logical steps.

    I’m actufly starting another thread now as the topic is slightly different. It’s to do with Rifampin and Prednisone, if you have any thoughts it would be great to hear them. Thank you as always for your kind words and thoughts.

    ---

    Here for my Mother In Law.

    Scleroderma 30+ years, Lyme/Bartonella (perhaps 30+ years too, diagnosed in October 2019), Hypothyroid, Anemia (of chronic diseases we think?), Neuropathy, Mini-stroke/brain lesions Oct 2019, Candida.

    Current Meds:
    **Minocin 100mg x2 day, every day. **Rifampin 300mg 1x day MWF. **75mcg Levothyroxine. **5mg Prednisone. **Clopidogrel 75mg. **300mg Fluconazole every Sunday. **300mg Gabapentin. **LDN 4.5mg.

    Current Supps:
    Vitamin B-complex, C, D, E. Potassium Glucona

    #465860
    Linda L
    Participant

    A high or normal ferritin doesn’t mean that her iron is OK.

    RA tried everything: Methotraxate, Arava, Humira. Pneumonia three times. Anemia. Very low iron. Hypothyroidism
    AP from April 2014 till August 2015. No luck.
    Current medications: Natural thyroid, Mobic, LDN, supplements incl. milk thistle, vitamins and minerals.
    MTHFR heterozygous

    #465861

    Interesting – how so? Still awaiting final results will post them here when available!!

    ---

    Here for my Mother In Law.

    Scleroderma 30+ years, Lyme/Bartonella (perhaps 30+ years too, diagnosed in October 2019), Hypothyroid, Anemia (of chronic diseases we think?), Neuropathy, Mini-stroke/brain lesions Oct 2019, Candida.

    Current Meds:
    **Minocin 100mg x2 day, every day. **Rifampin 300mg 1x day MWF. **75mcg Levothyroxine. **5mg Prednisone. **Clopidogrel 75mg. **300mg Fluconazole every Sunday. **300mg Gabapentin. **LDN 4.5mg.

    Current Supps:
    Vitamin B-complex, C, D, E. Potassium Glucona

    #465896

    LHi everyone,

    What a rollercoaster it is. We finally have all the results back, and, well, they are inconclusive to say the least.

    I won’t divulge too much detail, because quite honestly we are overwhelmed and very confused by it all. It doesn’t help that we are unable to get an appointment with the rheumatologist, given the covid situation.

    The comment that the doctor who originally recommended more blood tests was ‘her autoimmune disease is very active. You should see a rheumatologist’… no duh! But what is quite relieving, in some ways, is that typically you would see a rise in both Kappa and Lambda light chains were elevated. In Myeloma, you typically see one or the other high, producing a high light chain ratio. Given both are higher, the ratio is normal, which means myeloma not the cause.

    Obviously it’s still not good to have them high, but again reading a lot of online references suggests that high autoimmune activity can be a culprit. Why she is very active isn’t clear, given that she wasn’t on her AP medication at the time of the tests. But, we soldier on.

    Oh, one HUGE discovery was that she has been taking far too little thyroid hormone for almost a year!

    She was originally prescribed 75mcg, but her hospital didn’t have that in supply, so they gave her 120mcg to cut in half… time passes, and with fragile minds, the hospital get the 75mcg back in stock. However, given the routine, she continues to cut them in half, meaning she is only getting half her recommended dose!

    She thankfully had a brainwave just last week (not so fragile mind!), and we have began immediately giving her the full 75mcg she needs. We know it can take a few weeks/a month to adjust, so we will hope that things can improve soon.

    I’m going to start another thread about supplements, as we are very aware of the importance of them, and how they can combine/interact with meds. If we can get our ducks in a row, hopefully we can start giving her the full nutrition she needs.

    Thank you everyone. Stay safe.

    ---

    Here for my Mother In Law.

    Scleroderma 30+ years, Lyme/Bartonella (perhaps 30+ years too, diagnosed in October 2019), Hypothyroid, Anemia (of chronic diseases we think?), Neuropathy, Mini-stroke/brain lesions Oct 2019, Candida.

    Current Meds:
    **Minocin 100mg x2 day, every day. **Rifampin 300mg 1x day MWF. **75mcg Levothyroxine. **5mg Prednisone. **Clopidogrel 75mg. **300mg Fluconazole every Sunday. **300mg Gabapentin. **LDN 4.5mg.

    Current Supps:
    Vitamin B-complex, C, D, E. Potassium Glucona

Viewing 6 posts - 16 through 21 (of 21 total)

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