anemia questions

[dollsie]

Hi all,

Anyone have experience with IV iron infusions? I have iron-deficiency anemia not responding to oral supplements. Just found out that I have anti-parietal cell antibodies. Totally weird, because I was negative for adrenal/thyroid/celiac antibodies when those were tested...apparently the parietal cell ones can cause atrophic gastritis. My GI work-ups have shown that I have little/no stomach acid. Even though my Ferritin levels are very low now, my B12 is o.k. I guess it's possible to have atrophic gastritis without pernicious anemia?

Anyway, the hematologist wants me to have IV infusions but I've read horror stories about side effects and/or allergic reactions. People describe days of vomiting/diarrhea/severe flu-like symptoms with fever, and of course this worries me because of the AD. I have a history of bad reactions to meds, etc, but it seems like there really is no alternative to these infusions.

Any thoughts?? Should I double-up on the steroids beforehand? The procedure would be once/week for 4-6 weeks - that seems like a lot of extra steroid in a short amount of time, and I've been trying really hard to taper down on my daily dose. Hmph. Any other tips?? Thanks in advance!!

Leigh

[ShannonD]

Leigh,

I hope it is somewhat of a relief to further understand why you have poor absorption issues.  

Now I am curious, and will read more about IV iron.  Just off the top of my head, I would say, mention to your doctor, the hypersensitivity issues.  Start with a 1/4 or 1/2 dose and titrate up to make sure your body tolerates it.  There may be lots of things besides B12 and iron that you are absorbing suboptimally.

Do not know if you saw Dr. Rind, but you might want to talk to him about intramusclular B-complex shots.  (I get them sometimes, they hurt a little).  Or intraveneous vitamin infusion intermittently, just to make sure that your body is absorbing stuff.  

Also, liposomal oral liquid vitamins might be an idea.  I use something called intramax or panacea. It is expensive, but it is super easy on the stomach.  I order it by the case, so it is not so expensive. You are supposed to hold it in your mouth so that some of the vitamins absorb under your tounge before you swallow it.

How are you feeling?  
Shannon

[dollsie]

Hey Shannon,

Thanks a bunch for your reply. I'm low on lots of vitamins and minerals most of the time. I have fat malabsorption, so my Vit D is always low...I've been asking my docs for ages to check the other fat-soluble vits but they give me the run-around and I really don't know why - every time I've ever asked to have something checked, it's always come back wacky. Lately I'm bruising a lot and some of my clotting times have been long, so I have to wonder about Vit K in particular. Also having swelling of my salivary glands and read that certain deficiencies (B vits and/or Vit A) can cause this. But so can chronic pancreatitis, which I have, so maybe that's it. I had a lip biopsy for Sjogren's a few weeks ago that showed "nonspecific" inflammation of the salivary glands...makes me wonder.

I have a feeling that the state of things in my stomach fluctuates a lot. The hematologist said he's not worried about B12 deficiency, just iron deficiency. He thinks it's the lack of acid causing poor absorption of iron. I do have this weird genetic mutation that makes me more sensitive to low B6/B12/Folate levels (causes high homocysteine and a greater risk for heart attack/stroke). I've only had B6 tested once and it was about 1.5years ago - was low then but the doc didn't tell me. I take B12 sublingually and it does absorb better that way. I used to take almost everything in liquid form and loved the idea of it, but most of the preparations have sodium benzoate as a preservative and I'm super sensitive to that. I'll look into the intramax and panacea. Thanks for mentioning those.

I did ask Dr. Rind about IV/IM replacement of these things (and minerals) just to get me where I need to be. The stomach antibodies do explain a lot, and I am relieved to have at least a partial clue for the absorption problems. I have a feeling that nutritional status has a LOT to do with how I'm feeling these days. Dr. Rind said we'd talk more about GI things at my next appt which is in 2 weeks or so. The IV iron idea is coming from the hematologist. I trust him and know I need to do something about my iron levels since I'm becoming anemic again...but the infusions do worry me.

I posted separately about my meeting with him. Confounding, but we'll see what comes of it. I guess I'm doing o.k. Definitely feeling less hyperthyroid these days which is a huge relief. Just struggling with symptoms that I'm pretty sure have to do with sex hormone imbalance and the iron-deficiency anemia. I've started tapering on my Dex and am down to 0.45mgs/day. I'd like to get down to 0.25 or so but without HC to top-up I don't know if that's really practical.

Tomorrow I have another meeting with an allergist about the steroid hypersensitivity stuff...hoping to get a clear answer on that. I started splitting my Florinef into am/pm dosings and noticed that I felt badly about 45 minutes after each afternoon dose. Looked it up, and it's in the same class of steroids as Hydro/Pred - the one I'm supposedly allergic to! Great. As far as I can tell, there is no alternative to Florinef. So we'll have to figure that one out...

Anyway, thanks again for your reply. Hope all is well with you...

Take care,
Leigh

[ShannonD]

Leigh,
Let me share with you my experience of IV vitamins since your hematologist is recommending, and it might come up with Dr. Rind.

I have never had IV iron infusion, read about side effects on line, and wonder if IM injections might be more tolerable.  

I have had IV infusion of something called a "Myer's Cocktail", which is a slurry of B vitamins, magnesium and calcium.  Woosh, IV magnesium makes you feel funny.  Very tingly, flush, kinda light headed.  My general understanding of IV infusions of mineral is that one may have some side effects, not per se related to the "drug" since it is not a drug, but related to the fact that they are infusing a mineral and it is changing the balance of minerals in the serum pretty quickly.  If you do get iron, or something like a myers cocktail at some point, make sure they do low dose to start, and that they do it slowly!(I have also had just straight magnesium, and still knocked my socks off)

I have also had IV infusions of glutathione (which is considered the body's master detoxifier.) In general I have had absolutely no side effect from this, and it makes me feel really good. I have had this prior to and since diagnosis.

I have also had IV vitamin C.  I also have not had any side effects from this, and it makes me feel really good.  One does need to have a small test dose prior to a regular infusion to make sure their body tolerates it. There is a risk (uncommon) of kidney stones, which is often managed by making sure that someone has enough magnesium.  I have had about 10 infusions since diagnosis (with my high serum calcium) and no stones. The interesting thing about IV C is that it has antibacterial, antiviral capabilities when given IV. I think there is some info out there about Lyme's and IV C.

Of the above, glutathione is probably the safest.  followed by B vitamins, followed by C....IV minerals are tougher.

Intramuscularly, I have had: B12 - no biggie, B-complex (ouch!, but not too bad) and "M.I.C" (methionine inostitol choline) - also easy.

By the way, the company which makes intramax also makes "intramin", which is just straight liposomal mineral replacement.  I think they actually recommend that first.  I think their web site is "druckerlabs.com" or something like that.

I am not saying you should do this (IV vitamins), but just wanted to let you know my experience.  

Hope you are feeling OK.
Shannon

[Idaho Dusty]

Shannon and Leigh, thanks for your enlightening discussion about vitamins, anemia, etc.  All of this info is so far out of my knowledge base.  I find it really interesting!

Leigh, have you investigated licorice as an alternative to florinef?  I don't know much but I've heard it mentioned before.  Do you have trouble sleeping at night when you take the florinef late in the day?

:) Dusty

[dollsie]

Hey Dusty,

I've been trying licorice tea for the last couple of weeks...I tried cutting out my afternoon Florinef dose last week (so I was only taking 0.05mgs in the a.m.). For a couple of days I didn't notice much of a change, but by day 3 I felt really bad in the evening... Had some of my old symptoms - waking up gasping (I think it's from arrhythmia when my potassium gets too high) and lots of peeing through the night, really achy legs/feet. So I went back on the Florinef. But I don't think my body likes that drug - definitely feel bad 1-2 hours after the afternoon dose. I don't have any trouble sleeping when I take it later in the day. Do you?

I'm still having issues with the Dex - feeling very low at some times, and over-treated at others. The timing of the lows makes sense (morning and around 4-4:30pm), and I usually feel over-treated mid-afternoon and then again starting around 6/7pm until bedtime. Honestly, I hate feeling over-treated. I get so much weakness in my shoulders, arms...and feel totally weird in my head, kind of dark and foggy but different from Addison's "depression".  

Still trying to figure out what to do about the iron infusions. My GP thinks I should go for it and see if they make me feel better. The rheumy says I should wait until my HGB drops more. I definitely have symptoms of anemia, so I'm tempted to go for it. If I end up testing positive for Lyme, I'd want to be in better nutritional shape prior to starting antibiotic treatment, anyway.

I meant to ask you and Shannon (and anyone else!) if you've heard of SpectraCell analysis? I asked my internist about testing other B vits, fat-solubles, minerals, etc and she said it's the only test that really quantifies things on a cellular level. I think Dr. Rind would treat me w/IV vitamins/minerals based on the assumption that everything is low but I like to have evidence of things like that first.

Congrats again on the big run!!!

Take care,
Leigh

[ShannonD]

Leigh,
I will look at the spectra cell thing. I am curious now.

I agree with you about florinef in general.  If I am going to be outside in the warm weather, I will take extra florinef in the afternoon, and for some reason really notice the side effect more than I do in the morning.  Can you not take it all in the morning.....or take it late enough at night so you sleep through the "peaking" of the med which I notice anywhere from a half hour to 2 hours after I take it.

The testosterone (I think) really helps me with that weak feeling I get in my thoracic spine.   I am taking the HC, largest dose in am and then small 2.5 mg doses all day....I too notice it the afternoon.

I do thing that you should the iron....if you have a bad reaction, it will be transient.  I think they should do a lower test dose to start.  

WIll right more later.
Take care,
Shannon

[dollsie]

Hey Shannon,

Thanks for the info. I'm thinking that a lot of the weird feelings I have are actually from a combo of low sex hormones and anemia. I'm hoping to get the results of estro/progesto/testosterone early next week and the Lyme results the week after. It really helps me to hear how much benefit you gals get from the sex hormone replacement. I recently found out that I have osteopenia, and thought it was probably from all the steroids but then realized low estrogen can do this too...

I just got the results of a stress echocardiogram in June and apparently have sclerosis of my mitral valve. I read that it can happen from rheumatic fever (which I don't think I've had) or calcium deposition (which I probably have). I think I remember you and Dusty saying you've had high Ca/Phos before. Did you have evidence of deposition anywhere? I'm pretty sure my high Ca levels caused my pancreatitis and some other problems. Haven't met that many other Addisonians that had the hypercalcemia. Weird, because I read that they think it happens b/c of coexisting hyperthyroidism, which I definitely never had!  

Anyway, do you know about chelation therapy for calcium deposition? If it turns out some of these problems are from Ca/Phos issues, I may ask Rind about that (eventually). Right now I just want to find out why my Ca is rising and PTH is falling with a very low Vit D level. Doesn't make sense, unless it's Sarcoid causing this stuff after all. Actually not too worried about that at the moment, since as far as I can tell treatment would be a lot like AD...steroids. I'd look into the Marshall Protocol or something like it. If the Lyme stuff comes back positive, I'd be on a similar treatment, anyway.

Sometimes all of these diseases (especially the autoimmune ones) seem so similiar. I think infection is to blame for a lot of them. My twin sister and I are perfect examples of that - we may be genetically predisposed, but something triggered all of this in my body and not hers. The only difference as far as we can tell is that I had a few whopper infections a few years ago. If my anti-parietal cell antibodies hadn't come back positive last week, I'd still be having a hard time believing all of this really is autoimmune. I've been afraid for a long time that something really sinister was going on...but it was a relief of sorts to get that result back.

As usual I've rambled on. Thanks again for this info and your thoughts on the iron. I agree with you and will probably give it a shot, double-dose my Dex the night before to be on the safe side. Maybe the testosterone will really help with this muscle weakness...have been having a hard time holding chiropractic adjustments for the last few months even though I go 2x/wk. Who knows!

Hope you're doing well.

Take care,
Leigh

[ShannonD]

Leigh,
Don't know that I think you would need to double the dex dose the night before iron infusion, add 50% more than normal.  Should not be a big stress on body other that having a mineral infused may make you feel funny or ucky, but the improvement of the anemia over time might make you feel much better.

EDTA chelation therapy for high calcium...would work, but that too can make you feel ucky.  

If you do something with Dr. Rind injection vitamin wise.  Consider the B12 IM, the M.I.C IM, and glutathione IV.  Those have the most subtle side effects.  I also think that vitamin C has very little side effect, will chelate the calcium, and has some anti-viral, anti-bacterial qualities.  Like I mentioned the risk with vitamin C is kidney stone formation if you do not have enough magnesium.  BTW, one of the ways of getting magnisum is to do epsom salt soaks.... feet 2 x daily, or entire body, once daily.

I was doing some reading yesterday on thyroid, and interestingly being low on thyroid, causes weakness of arem and thigh muscles specifically (versus upper thoracic with too much glucocorticoid, which is inescapable with addison's).  THe other symptom that I really get with my thyroid is huskier voice, mild pressure right below adam's apple, and I will intermittenely choke on saliva or feel a dry cough from that same area below adam's apple. I am on a T4/T3 compounded med.  I take it twice daily to make sure that the T3 stays steady in my blood stream.  I take the T4/T3 equivalent of levothyroxine 50mcg (half in am, half at about 2pm. ) I really feel that the T3 helps with my carpel tunnel (good thing since I am rambling too), lean muscle mass, and energy in general.  The first couple of times I took it (T3) it gave me a little bit of palpitations, but my body seems to have adjusted...I feel good not wired.

Estrogen inhibits osteoclast formation (cells that break down bone). (read this on either Dr. Lams, or thyroid-uk web site yesterday)
Progesterone promotes osteoblast formation (cells that make bone)
Testosterone helps bone too, I am not sure how. And it definitely makes me feel stronger, and more libido.  No acne or hair loss yet, but need to be careful to not forget the deoderant ;) I take 1mg a day.
Definitely get tested, so that you are not adding more than you need, or it may make you feel bad.  Years ago, I took a small amount of estrogen orally (to promote endometrium formation after D&C), and if gave me a phlebitis in my lower leg... (because I had plenty of estrogen already).  Most recently when I was tested, I was estrogen dominant.  Apparently this can happen because ACTH causes ovaries to make more estrogen. anyhow, I was low on progest, and testost, so that is what I use.

There is some good info on the ovarian thyroid adrenal relationship on
http://www.drlam.com/A3R_brief_in_doc_format/adrenal_fatigue.cfm

There is some very interesting adrenal reading on
stopthyroidmadness.com

There is an absolutely fabulous article on adrenals on:
http://www.tuberose.com/Adrenal_Glands.html
which I would recommend to anyone.

One last thing, and I will stop typing your ear off ;)
I tried it my endo's way taking big dose of HC in am and then once or twice later in the day.  I honestly feel better taking a moderate dose in am, and then very small doses all day.  I take 5 in am, the 2.5, 2.5, 1.25, 1.25.  Very bizzarly obsessive I know, but I am very senstive to that high glucocorticoid feel. WHen  I feel pain in my back, mild nausea, heaviness in my head, sometimes salty taste in mouth, and occasionally dizziness , (I know I am low)  and I take a dose.  So I am floating on that edge of "just enough" replacement. On days that I work, or if I am exposed to someone with a cold, or if I am stressed or angry, or if I exercise, I will up the dose (based on how I feel).  So anyhow, if you are going to try HC again, just letting you know the really weird way I am doing it.  For all I know, I will change this, but has been woking for me so far. Don't get the highs, and take it before I get too low.  

Take care,
Shannon

[Idaho Dusty]

Hi Leigh!

I wonder if you took a standardized licorice supplement if you'd have better luck with it.  I'm not sure about dosing tea/supplement equivalent to florinef though.

Yes, if I take Florinef any other time than in the am, I have a hard time sleeping.  I don't know why, there's not much that keeps me awake!!

I will look up the SpectraCell analysis.  I haven't heard of it.

Thanks!

:) Dusty

[Idaho Dusty]

 "I think I remember you and Dusty saying you've had high Ca/Phos before. Did you have evidence of deposition anywhere? "

I've had high Ca.  No evidence of deposition.  Can't remember if I've aske this:  Have you been tested for hyperparathyroidism.  It can be a comorbid condition.  Ionized calcium and PTH are the tests that need to be ordered.  I went to a pain doc for my migraines and he told me that my high Ca readings could have been caused by my migraines.  Who knows????

:) Dusty

[Idaho Dusty]

Great links Shannon!

I had no idea about Mg and epsom salts, very interesting.

Thanks for sharing your dosing routine.  It's interesting to see how others take their meds.

:) Dusty