I started Lyme treatment about 2 months ago. Was bitten last summer. Initially last summer I was severely anemic. My hematocrit and hemoglobin are now showing that I am not anemic but for some reason, my body will not STORE iron. I have been on supplements (2 different types) for more than a year and I can barely get my iron levels out of the 30's.
My new internist who is working with my LLMD and believes in the Lyme diagnosis is very concerned about this and told me that if the stores do not increase in the next couple of months they are going to do further "testing". He mention a couple of chronic cancers that can cause this.
Has anyone else with Lyme had problems with iron stores (ferritin levels)?? I would much rather have this be a symptom related to lyme than have to deal with another illness on top of this!
Thanks!
Posted by 1Bitten2XShy (Member # 12280) on :
All of a sudden, I too am anemic and have a 4 for my score on Iron stores. This was found in routine bw in Oct. I just had new BW drawn on Monday and awaiting those results.
I have never had an anemia issue before, so this is very puzzling. What was your Ferritan level at? Are you at least producing red blood cells?
I have been treated for Babs, have not had any lingering symptoms since stopping Babs treatment, so my LLMD is pretty sure the anemia is not from that.
While they need to find out why you are anemic, do they at least have you on an Iron supplement?
Posted by Curiouser (Member # 14128) on :
I don't even have an official dx yet, but my ferritin was at 7 when it was first tested earlier this year.
Sorry in advance if this gets too TMI.
Had the "standard" tests which include pelvic and trans-vag ultrasounds to look for fibroids, as well as an endoscopy and colonoscopy to check for internal bleeds.
Haven't done the hemoccult stool test yet.
Btw, if you ever have to have a colonoscopy, ask for OsmoPrep, rather than the nasty liquid or powder preps. This stuff rocks!
The drs are pretty sure my heavy periods that are causing the iron loss. Problem is, they're not sure why my periods are so heavy.
It could be from the subclinical hypoT. It could be my seriously screwed-up hormones (everything's wacky right now). I'm also finding out it could possibly be Lyme.
Anyway, I'm wondering if your body isn't absorbing the form of iron you're taking.
Have they considered iron IVs to see if its maybe a GI absorbtion problem, rather than a whole body storage thing?
Some people simply can't absorb iron, or other supplements like B12, due to low stomach acid levels.
Its much easier (and less painful) to start simple and work your way up to more serious dxs.
Good luck and please keep us posted. Posted by Truthfinder (Member # 8512) on :
Do either of you have GI issues, like Crohn's or Celiac Disease, or do you use acid blockers or NSAIDS?
I found this on the Internet. I've been wondering about my own iron stores..... some of these causes surprised me, like hookworm infestations..... **************************************
Iron deficiency anemia causes include:
Blood loss : ...If you lose blood, you lose some iron. Women with heavy periods are at risk of iron deficiency anemia..... Slow, chronic blood loss from a source within the body such as a peptic ulcer, a kidney or bladder tumor, a colon polyp, colorectal cancer, or uterine fibroids can cause iron deficiency anemia. Gastrointestinal bleeding can result from regular use of aspirin or other nonsteroidal anti-inflammatory drugs (NSAIDs). While not common in the United States, hookworm infestation can cause blood loss.
Blood lost from within the body may show up in your urine or stools, producing black or bloody stools. Inform your doctor if you notice blood in your urine or stools.
An inability to absorb iron : Iron from food is absorbed into your bloodstream in your small intestine. An intestinal disorder, such as Crohn's disease or celiac disease, which affects your intestine's ability to absorb nutrients from digested food, can lead to iron deficiency anemia. If part of your small intestine has been bypassed or removed surgically, that may affect your ability to absorb iron and other nutrients. Some medications can interfere with iron absorption. For example, regular use of prescription-strength stomach acid blockers called proton pump inhibitors may lead to iron deficiency anemia, although this is unusual. Your body needs stomach acid, which these products suppress, to convert dietary iron into a form that can readily be absorbed by the small intestine....
Iron supplements can cause constipation, so your doctor may recommend a stool softener. Iron almost always turns stools black, which is a harmless side effect. Iron can be given by injection, but this usually isn't necessary.
[ Note : Unless you are perhaps fighting a yeast issue, make a `hot tea' out of 1 Tablespoon of Blackstrap Molasses from the health food store and drink it every day (or more to bowel tolerance.) This has about 20% of your daily iron needs (plus lots of other minerals like 131 mg. of calcium) and this should alleviate constipation issues.]
Iron deficiency can't be corrected overnight. You may need to take iron supplements for several months or longer to replenish your iron reserves.
Yes~ I had a ferritin level at 5 ng/mL and that was AFTER 4 months of iron supplements.
I finally went on over 200 mg of ELEMENTAL iron daily (that's a LOT of iron) and my iron stores still didn't improve.
I ended up with a uterine ablation. The iron disorders doctor that I worked with wanted my ferritin level at 100 ng/mL before I quit taking iron.
That took 2 years of supplements, after the ablation.
You need to look at why you are losing iron...menses or stool...or if you are absorbing it.
They can do tests to see if you are absorbing it, or if you are losing it through the stool.
Best, Timaca
Posted by bunnyfluff (Member # 14117) on :
Low iron was my only real sx of Celiac's for years and years! I went undx'd for 9 years, and almost died. I cannibalized my bone marrow to stay alive.
Here is what I know: Iron is a fat soluble vitamin. The upper part of the small intestine is where fats are absorbed. If this area is damaged, it does not matter how much iron you try to take (I took TONS of suppliments, to no avail), it cannot be absorbed~ PERIOD!
My LLMD acted like this was common in ppl with Lyme, stating that he was surprised at how they find the food allergies/ intolerances, and yet never find the Lyme.
So, if you are taking iron suppliments, and yet failing to absorb any of the nutrients, that is the first place I would look. Amazing to me, also is how many Dr's have no clue about food intolerances, and want to look for cancer or something first.
Hope this helps! Bunny
Posted by Lemon2Lyme (Member # 13561) on :
My ferritin level was about 24. I am also hypothyroid, which is a condition known to adversely affect blood stores.
Posted by arc35476 (Member # 12786) on :
Thanks for all the helpful information. Yes, I have been though all the tests: hemoccult cards, colononscopy, endoscope, etc. to rule out internal bleeding, ulcer, celiac disease, chrons disease, . . .all were negative. I do have a history of Graves Disease (hyperthyroid) and I think my thyroid is on the way to going low.
I understand that the scopes (endo and colon) cannot see the small intestine and they have to perform another test to look at that.
Also, I have a history of Graves Disease and I think my thyroid is on it's way to going low- and that is something that I was unaware of - that HYPO thyroidism could cause problems with iron stores. My LLMD thinks a low dose of synthroid would help right now but the new internist says he thinks it will cause more problems than help.
Also, I have doctors disagreeing about the low iron due to heavy periods (which I have)- 2 say yes it can be caused from that and 2 say no way that it's that low.
Initially my level was around 9 or 10. . and after 18 months of supplements (Repliva and ICAR-C) I have only topped out in the high 30's. And while my internist believes in the Lyme dianosis and is working with my LLMD, he is the one who mentioned cancer.
I am just sick of all the tests and poking and prodding. I am sure you all understand!
Posted by Truthfinder (Member # 8512) on :
Arc, if you were bitten last summer but were anemic previously and have been on iron supps for a year, then I would suspect that this problem does not have anything to do with Lyme.
If your thyroid levels seem to be swinging the other way, I wonder of low thyroid can interfere with secretion of stomach acid (necessary for iron assimilation).....
I did read where if heavy periods are the problem, sometimes birth control pills are given to regulate menstrual flow. Have your docs suggested this or looked at the uterine fibroid possibility?
Also, since hookworms live in the upper part of the small intestine, I would do some searching about hookworm infestations. Often, there are no symptoms of hookworms and eggs are not always present in the stool.....
Yes, I am sure you are tired of all the testing and coming up with no answers!! I'm glad your docs are paying attention to this, though, and it sounds like maybe you are close to getting some answers since you have ruled out a number of things already.
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