Hambone
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posted
About a year and a half ago...a year before being diagnosed with Lyme... I asked my ob-gyn to test my ferritin.
I had been so sick for 4 years prior, and not one of the 15 doctors I saw ever checked my ferritin. My hemoglobin and hematocrit were ALWAYS just under the range. Not much, so it was ignored. Not one time did any doctor tell me I needed iron.
Anyway, I saw an episode of The Doctors, and the hunky Travis Stork told a woman complaining of fatigue to get her ferritin checked. I'd never heard of it.
Mine was bottomed out. It was the lowest my doc had ever seen. It was < 1
So I've been taking a prescription iron supp ever since. The highest it got was 17, then went back down to 7 about a month ago.
So now I've added Bifera to this. I take the prescription iron in the am and a Bifera in the pm.
My periods are hell-on-earth. Very heavy. It tripled in volume shortly after I got very sick.
I know I need intervention, but there is no way I could endure a type of surgical procedure while I am this ill. I would never recover. I need to be stronger.
Are than any tricks or secrets you have for getting your iron level up?
I have to avoid things that thin my blood, such as larger doses vitamin A. I tried that and it thinned my blood too much and made my period even heavier.
I have a script for Prometrium, but am not comfortable adding more burden to my already overburdened liver, plus I have been reading about two women who recently had debilitating strokes, and that has me freaked out, too.
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Haley
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You could try IV iron but it's not cheap.
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Lymeorsomething
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Take your iron with lots of vitamin C to aid absorption.
It's probably your periods but check for babs too.
-------------------- "Whatever can go wrong will go wrong." Posts: 2062 | From CT | Registered: Jul 2008
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Hambone
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quote:Originally posted by Haley: You could try IV iron but it's not cheap.
Ooooooo, I forgot to mention when I was in the hospital a year ago I had an iron infusion and had an allergic reaction. Broke out in a rash all over. And the Benadryl wigged me out because I was so incredibly medication sensitive.
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Lymeorsomething
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Of course, you don't want it too high either...ferritin up around 50ish would be nice.
Load up with C.
Tea/coffee impairs absorption.
-------------------- "Whatever can go wrong will go wrong." Posts: 2062 | From CT | Registered: Jul 2008
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sammy
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I don't know any tricks for increasing iron. You might feel better if you were able to get your periods under control though.
You could try supplementing with DIM. It is supposed to help balance your hormones. I've been taking it (Nutricology brand "IndoleGard") for a couple months and have started to notice a difference. You probably shouldn't take it if you are supplementing with estrogen or progesterone though.
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steve1906
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Hey Hambone, I found this online:
I had low iron when pregnant and the ferrous sulphate tablets made me nauseous so I took Floradix liquid from the health food shop and that got my iron levels up quite quickly.
Beans, nuts, dried fruit (such as dried apricots), whole grains (such as brown rice), fortified breakfast cereals, soybean flour and most dark green leafy vegetables (such as watercress and curly kale)
Apparently meat such as Liver has a high iron content too but I can't bring myself to recommend that. (against principles!)
also black pudding is VERY high in iron, if you can stomache eating that get some down you. Also drink orange juice with your meals as it allows your body to absorb more of the iron from the food you are eating.
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tick battler
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posted
Do you have babesia? I have heard that low ferritin can be a sign of babesia. It was pretty low (11) in my children at times when they had babesia. I have not rechecked it but now that their babs is gone, I should.
tickbattler
Posts: 1763 | From Malvern, PA | Registered: Jul 2009
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posted
I have some good advise for you When you take your iron supplement take it with the Vit C away from calcium and take L-lysine. I have the same issue and unless I take L-lysine at the same time as my iron my ferritin hardly budged. Mind you it's still not great. I did run out of L-lysine and forgot to supplement and it dropped fast again. Worth a try.
Posts: 199 | From Niagara Falls | Registered: Dec 2009
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posted
I have some good advise for you When you take your iron supplement take it with the Vit C away from calcium and take L-lysine. I have the same issue and unless I take L-lysine at the same time as my iron my ferritin hardly budged. Mind you it's still not great. I did run out of L-lysine and forgot to supplement and it dropped fast again. Worth a try.
Posts: 199 | From Niagara Falls | Registered: Dec 2009
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Hambone
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Yay! Thank you for all the advice. I shall try all.
Tick battler....My co-infections tests were negative, but I'm now being treated for Bart, so I probably have Babs, too. Sigh:/
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tick battler
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Hi Hambone - yes, as Dr. B says, we all have coinfections if we have chronic lyme...and it seems almost always at least bart and babs. With my family we got some positive coinfection test results about a year into treatment. Prior to that they were mostly negative. So you really can't rely on those tests.
One thing to keep in mind is that if you are treating one coinfection and knock it down, then another often will surface and symptoms from that coinfection may appear. So if you are knocking down the bart, babesia may be surfacing and lowering your ferritin.
Just a possibility to consider.
tickbattler
Posts: 1763 | From Malvern, PA | Registered: Jul 2009
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posted
I have very heavy periods, too, and as a result low iron. I've supplemented iron since I was a teenager and never had to think much of it.
Anyway, several things happened recently (none having to do with infection) and I found myself anemic again. My ferritin wasn't tested until I had started taking double iron supps on my own because of my restless legs, which is always the sign it's gotten low, so it was 27, but I still had symptoms.
It's tough because just when you start feeling better, another period, then it's low again
I've been muscle testing for how much I need and it's been more than I've been taking. I did take Floradix for a while, now I'm taking Blood Builder again.
Maybe your iron supplement isn't working for you. Part of the reason I got in this spot was because Whole Foods was out of my brand and I used a different brand for am month before I got anemic enough to figure out it wasn't working for me.
I have read that taking more vitamin A can help lessen periods, so I am giving that a try. I'm also using Progesterone cream during the second half of my cycle. Maybe you could eat more carrots and not have the blood thinning effects???
My gyn recommended the surgery for me a few years ago where they scrape out your uterus, but I declined.
You might look into babesia if you're having other symptoms.
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Hambone
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Thank you SixGoofykids.
I think I will try the Bloodbuilder.
I'm almost 44 and praying God will say, "OK she's had enough of this." And the whole thing will just stop and my iron can merrily rise and stay that way.
( anybody here ever have theirs stop in their early/mid forties? or am I hoping for too much? )
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TerryK
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Tck Battler is right about babesia and iron. My LLMD did not want me supplemeting with iron until babesia is gone so if you have babesia you might want to discuss this with your LLMD or someone who knows about babesia.
Res Vet Sci. 2008 Aug;85(1):120-4. Epub 2008 Apr 18.
Erythrocytic antioxidant defense, lipid peroxides level and blood iron, zinc and copper concentrations in dogs naturally infected with Babesia gibsoni.
Chaudhuri S, Varshney JP, Patra RC.
Clinical Diagnosis Laboratory, Referral Veterinary Polyclinic, Indian Veterinary Research Institute, Izatnagar 243 122, UP, India.
Abstract Babesiosis is a common tick borne disease of dogs in tropical and subtropical regions of the world caused by different species of Babesia. The present study aimed to examine erythrocyte lipid peroxide and erythrocytic antioxidant levels in dogs with clinical babesiosis, caused by Babesia gibsoni, and impact of the disease on blood iron, zinc and copper levels.
The study was conducted on 10 naturally occurring cases of canine babesiosis with the history of tick infestation, erratic pyrexia, and prolonged illness. Microscopic examination of Giemsa stained peripheral blood smears confirmed B. gibsoni infection in the erythrocytes.
SEVERAL PARAGRAPHS REMOVED DUE TO POSTING ERROR
The study demonstrated oxidative damage in dogs naturally infected with B. gibsoni. Low level of blood iron, zinc and copper seems to have an additional role in the genesis of anaemia and oxidative stress.
PMID: 18378268 [PubMed - indexed for MEDLINE]
Posts: 6286 | From Oregon | Registered: Jan 2006
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I am currently taking many more Blood Builder than the bottle says to try to get my iron higher. You might want to read how much your doctor has you taking and be sure you're getting at least that much if you change brands.
I'm 47 and no signs of stopping.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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posted
Have you considered the possibility that you have underlying Electrosensitivity? I ask because it's very possible that your body is refusing the iron to protect you from absorbing and 'conducting' dangerous levels of microwaves in the environment...(cell phone towers, wifi antennas, etc...)...the less iron in your blood, the 'safer' you are from this immediate threat?
-------------------- Urge Congress on EMF Safety, FCC Must Change Exposure Guidelines for Microwave Radiation Exposure: http://tinyurl.com/2cjq54y Halt Universal Broadband, A Public Health Hazard: http://tinyurl.com/3x7xrmq Posts: 495 | From USA | Registered: Mar 2010
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posted
hmm. The body hides iron when there is an infection, as iron feeds bacteriae.
Heavy periods: often connected to high TSH (hypothyrodism)
Those of us who take thyroid hormones, many of us notice the periods get very small if we are dosed a little bit highish. Being hypo=undermedicated means heavy periods.
Are you by any chance hypothyrid, or under-medicated?
Posts: 366 | From Europe | Registered: Nov 2008
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posted
Nothernlights, I've read about the thyroid/iron connection. My thyroid numbers are good (TSH = 0.6), and my period has shortened, yet it's still heavy.
Low HCL in the stomach is also associated with both conditions.
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Razzle
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posted
Vitamin B12 is also helpful in this situation, as is Folic Acid and Vitamin B6...
-------------------- -Razzle Lyme IgM IGeneX Pos. 18+++, 23-25+, 30++, 31+, 34++, 39 IND, 83-93 IND; IgG IGeneX Neg. 30+, 39 IND; Mayo/CDC Pos. IgM 23+, 39+; IgG Mayo/CDC Neg. band 41+; Bart. (clinical dx; Fry Labs neg. for all coinfections), sx >30 yrs. Posts: 4166 | From WA | Registered: Feb 2011
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lululymemom
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I have fibroids that cause this condition as well. The only thing that has helped me is to normalize my estrogen/progestrone.. I have been using chasteberry (Vitex) for the past 3 months, and have noticed a significant improvement. I also take systemic enzymes (serrapeptase) to break down the fibrin. This also helps fibrocystic breasts.
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Hambone
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posted
My thyroid is always normal. T3, T4, TSH...all of it.
I had my nutrients tested last July. Was deficient in B1,B6,E and selenium, but have been working on those and getting Meyer's Cocktails, so not sure if I am still deficient. Iron was tested separately and was low, but copper and zinc were normal.
My progesterone is in the gutter and I'm sure this is the culprit causing the heavy periods. My dilemma is not being able to tolerate it. I tried progesterone cream several times and wig out every time ( weaker, more anxiety, weepy ).
I think maybe next month I might cave and try the Prometrium. I don't know. I just hate pills. Hate it, hate it, hate it. It is bad enough going against how I feel about abx's and taking them anyway...and not just taking them, but taking A LOT of them. My poor wittle liver.
I will look into Chasteberry. Thanks!!!
Oh....
What causes what? Does adrenal insufficiency cause low progesterone, or does low progesterone cause adrenal insufficiency?
My adrenals are poopy, too. Doc thinks if I can get rid of Lyme, this will get better.
I struggle greatly with tolerating things. This is why treatment is always such a hassle for me. I can't take fistloads of pills and supps everyday like most. It's a miracle, really, that I'm even able to take the abx's I'm taking.
Thank you for all the ideas Posts: 1142 | From South | Registered: Dec 2010
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Razzle
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posted
I suspect that you may find help from pregnenolone, which is a precursor hormone for both adrenal and reproductive hormones...
A diet that is too low in cholesterol will cause low adrenal and reproductive hormones...
PM me if you want the name of a specific product (no, not trying to sell anything) because I don't know if I can say the name of the product on here since it is a network marketing product and I'm a member of the company (but again, I'm not here to sell this company's products; I only joined so I could get a better price on the few things I buy from them).
Take care,
-------------------- -Razzle Lyme IgM IGeneX Pos. 18+++, 23-25+, 30++, 31+, 34++, 39 IND, 83-93 IND; IgG IGeneX Neg. 30+, 39 IND; Mayo/CDC Pos. IgM 23+, 39+; IgG Mayo/CDC Neg. band 41+; Bart. (clinical dx; Fry Labs neg. for all coinfections), sx >30 yrs. Posts: 4166 | From WA | Registered: Feb 2011
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TerryK
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posted
I agree with Razzle and was just going to post about pregnenolone. I can't tolerate progesterone. It causes severe depression, fatigue and fluid gain in me.
A few weeks ago I started pregnenolone at a low dose of 2.5 mg. and I do feel a bit better on it. I plan to slowly go up in dose.
Terry I'm not a doctor
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timaca
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Hambone~ I had very heavy periods too, my ferritin level was 5, Hct and Hgb below the reference range. I was very anemic. I took 200 mg of elemental iron daily (which is a heck of a lot of iron) and still my iron indices did not change. I ended up with a uterine ablation. I kept taking iron, and my iron indices eventually normalized.
See how much iron you are taking. If you are taking that much and still not improving your ferritin you will likely need an ablation.
I still take iron 3 times a week...and I monitor my ferritin once a year...but I am much better as far as my iron indices go...
Good luck, Timaca
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posted
Consider that you may have developed celiac disease (wheat allergy). Can't take up iron if the gut villi are flattened. I had anemia all my life, until learning I had celiac. After stopping wheat, no more high dose iron supplements needed. Lyme will give a person celiac, especially if long term infection.
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quote:Originally posted by timaca: I took 200 mg of elemental iron daily (which is a heck of a lot of iron) and still my iron indices did not change. Good luck, Timaca
I'm taking 100-150 mg per day. I muscle test each time I take it, and the tablets have 26 mg. so it varies day to day. The tablets I take have b12, folic acid and vitamin C in them.
I also had to increase my magnesium to keep my bowels moving. Iron can clog you up at the higher dosages.
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Hambone
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quote:Originally posted by Tish: Consider that you may have developed celiac disease (wheat allergy). Can't take up iron if the gut villi are flattened. I had anemia all my life, until learning I had celiac. After stopping wheat, no more high dose iron supplements needed. Lyme will give a person celiac, especially if long term infection.
Things that make you go hmmmmmmmmmmm.
I was JUST reading that low sigA in the GI tract...which I have..... can be caused by gluten ( just one of the causes ).
This is driving me nuts, because I've had several blood tests AND a biopsy to test for Celiac, and they always come back negative. I even went two months gluten free and there was zero change in how I felt, but I did lose weight.
I gave up because I thought I was denying myself stuff that I loved for no reason. I felt no better off gluten, and no worse resuming gluten.
This is interesting. Frustrating, but interesting. I just wish we didn't have to be our own doctors and have to figure this stuff out on our own. Gosh dern it, I want to be paid the big bucks for having to learn stuff these doctors should know. Posts: 1142 | From South | Registered: Dec 2010
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Hambone
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quote:Originally posted by timaca: If you are taking that much and still not improving your ferritin you will likely need an ablation.
I want one desperately. Too scared, though, since I feel so bad already. I've read tons of success stories about it, but those women weren't sick with Chronic Lyme and medication sensitive.
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timaca
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I was very sick at the time of my uterine ablation...and I'm medication sensitive. It improved my situation. I'm glad I did it.
I probably would have died from blood loss...my periods were seriously that heavy.
Best, Timaca
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Hambone
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quote:Originally posted by timaca: I was very sick at the time of my uterine ablation...and I'm medication sensitive. It improved my situation. I'm glad I did it.
I probably would have died from blood loss...my periods were seriously that heavy.
Best, Timaca
What type did you have? Novasure?
Were you put under? Did it hurt?
I need all the info I can get. I'm inching closer to this. Thanks Posts: 1142 | From South | Registered: Dec 2010
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timaca
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I had it done in 2004. My periods have been very, very light ever since. I was "asleep" but it was an outpatient procedure, done at the surgi-center, not the doctors office. I was home the same day. I don't remember what I had...I don't think it was Novasure (looking at that website)....but I'm not sure. I think I had some discomfort for several days afterwards, but it was tolerable.
I had to do something, for even my doctors could see how my Hct and Hgb dropped with my periods...they were way too heavy...
Posts: 2872 | From above 7,000 ft in a pine forest | Registered: Feb 2005
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posted
I know mine drops with my periods. I can feel it.
You say, timaca, that you would have died of blood loss. How much blood loss are we talking about?
I recently read the definition of heavy menstruation and was rather surprised to find that mine are considered very heavy, but I can't help but be curious as how they compare to what yours were.
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CD57
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posted
Have you heard of IV Venofer? It's supposed to be new and improved from the old iron. I have ferritin in the tank too but not the hemoglobin and crit (are those the two markers for true anemia?).
Supps have not made a huge difference for me. I'd look into the Venofer but I don't think it's cheap.
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Hambone
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If I do it, I want Novasure because you don't need to take any hormones or Lupron or anything to thin the lining first.
I've just gotta feel a bit better, though. Even going to my LLMD right now is very very tough.
When I was in the hospital and having all these iron panels and what-not, they took so much blood that I went from 11 to 7 in one day. Then the lab wanted 10 more vials of blood and the nurse had to step in and say no way!
I kept asking for iron and they wouldn't give me any...and my heart started going nuts. I finally got some iron in me, got home ...and started my period. Lost it all again.
Posts: 1142 | From South | Registered: Dec 2010
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Before you start taking iron supplements you should really work with a doctor and find out why you are deficient. Iron in balance can be a tricky thing to maintain.
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Pinelady
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posted
Are you sure you don't have Wilsons disease
or some bug like Babesia using it all up?
Have you been supplementing with lots of Chlorophyll?
I would be very cautious at this point---
replacement without discovering the cause could be a set up for worsening...You might actually be feeding bugs--not yourself...
Esp. if the cells are so infected they can't process it... I would want to get to the bottom of it.
Excessive menses could be a symptom not a cause, and should not be ignored. One of my daughters baby sitters did that. Bless her heart, she did not make it very long after the colostomy.
-------------------- Suspected Lyme 07 Test neg One band migrating in IgG region unable to identify.Igenex Jan.09IFA titer 1:40 IND IgM neg pos 31 +++ 34 IND 39 IND 41 IND 83-93 + DX:Neuroborreliosis Posts: 5850 | From Kentucky | Registered: Dec 2008
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![[cussing]](graemlins/cussing.gif)
![[lick]](graemlins/facelick.gif)
told a woman complaining of fatigue to get her ferritin checked. I'd never heard of it.
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When you take your iron supplement take it with the Vit C away from calcium and take L-lysine. I have the same issue and unless I take L-lysine at the same time as my iron my ferritin hardly budged. Mind you it's still not great. I did run out of L-lysine and forgot to supplement and it dropped fast again. Worth a try.
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