Iron deficiency anemia with mds

[Janet Joslin]

I am recently diagnosed with MDS complex cryogenics. I am new to this form and I’ll give you a short idea of the journey to being diagnosed finally!

I had breast cancer And radiation and took tamoxifen for five years all of this starting in 2006.

I have suffered from low energy fatigue aches and pains since then
In 2013 my breast cancer came back and I had a double Mesec to me but it was never a extreme cancer it was slow growing but it just didn’t go away. I noticed in my blood test from then that my WC my platelets and my RBC have always been on the low end of the scale. So has my iron. But the doctors never worried about it. Then in 2014 I had a major stomach bleed where I almost bled to death and they diagnosed it as watermelon stomach or better known as GAVE syndrome Paragraph ever since then I would have bouts with low hemoglobin low iron and still the platelets in the W BC‘s or low. I would have all kinds of endoscopies and colonoscopies and they never could find the source of the bleeding. As I look back. Sometimes they would find a little bit of blood in my stool but I do have hemorrhoids too. All this time my WBC’s my platelets and my RBCs are always on the low side. My iron saturation is always low of course along with it my ferritin would go up and down. I managed to get some blood transfusions. I would have a vents where I would go to the emergency room but my hemoglobin would not be low enough and I could not get a blood transfusion. I could go on and on it is just a confusing Mess with nobody really being able to find out what is wrong with me where the bleeding is coming from. Finally my daughter moved me down to Sonoma county where I live now and we started going to some new doctors. Oh by the way after this bleed I also had a fib and congestive heart failure. So they were treating my a fib and heart failure with blood thinners! So when I move here and get some new doctors one for my heart one for the Gastro intestinal. They decide that I am a perfect candidate for a new heart procedure called the watchmen. This is a device that is inserted into the heart that will catch any blood clots so that I am able to stop taking the blood thinners because of the gastrointestinal bleeding supposedly. So that helps that problem. But Then I am dying Knost with pancypotemia. Also, all this time I’m having low iron counts. So I keep having iron transfusions. Finally someone sends me to a hematologist. Oh I forgot all this time I’m having night sweats and also days Sweats where I just cannot handle it it is so bad. Nobody can give me an answer they just assume it’s something to do with hormones. Of course I don’t have any hormones left because of taking tamoxifen to prevent that. So I go to the hematologist and he tells me that the sweating has to do probably with cancer. He talked me into having a bone marrow Biopsy. But he says the low iron has nothing to do with the MDS he is insistent that I get another endoscopy to stop the bleeding in my intestine. He thinks it Hass to come from that even though I tell him we have done at least five of them and they can never find the source of the bleeding! So earlier when I see him to get the results of the biopsy he says I have MDS with these cellular changes and I am in the medium category. That was a week ago and since then I have had to iron infusions because my iron was so low But I can hardly function. So here I am finding this forum and reading about how everybody has too much iron. I am going to find an MDS specialist at this point because I don’t even like the hematologist oncologist because he won’t listen to me. When I go back and look at all my records since even 2009, I am low on iron low RBC low platelets low WC, and I remember always asking the doctors why? And they would say it was no big deal that’s just how it was. Well I realize of course is I’ve had this going on for a long time and this is probably the source of my gastrointestinal bleeding without actually seeing blood!

Has anybody else come through this kind of experience and is anybody else having the issue with iron deficiency anemia. I feel like I am having to do all my own research and figuring this whole thing out and hoping that a specialist can give me the answers. I would so appreciate any insights anyone has for me on this. Also I have a lot of weird symptoms that I want to write about and see if other people have the same. By the way, I am 77

[Philip Fallacaro]

You definitely need to know the state of your MDS. a reputable hematologists sshould do a bone marrow biopsy and bone marrow specimens sent out to a reputable lab that can elaborate the type and classification of your MDS.
you mentioned that you have had iron deficiency anemia, low counts of red and white cells, along with several other blood issues.
I’m 80 and have been diagnosed with low risk form of it where red and white cell counts are low as well as hemoglobin, currently at 10 with Procrit shots every two weeks to help increase red cell production. I’m interested to know if you have ever had persistent body itching, on ankles, arms and back in particular. It may be related to iron ferritin levels in the blood. But my doctors, dermatologist, primary and hematologists can’t figure what’s causing it. If by any chance you have had an itch problem in the past or present, that would help me determine what tests to be done related to iron in the blood.
Your bleeding may be related to medications you have taken now or in the past. Research those medications and their INTERACTIONS WITH EACH OTHER, since combinations of medications often cause digestive problems related to bleeding.
From your descriptions of low blood counts, you should have had a bone marrow biopsy done by a hematologists months ago to rule out or rule in MDS.
STAY STRONG. you have been through so much. Hopefully your doctors can find the causes of your problems and proposed the safest and most effective treatments.
Phil Fal

[Janet Joslin]

Thank you for responding. I guess when you read my post you didn’t understand that I have had the bone marrow biopsy and that the results were the MDS with chromosomal changes putting me in the medium range. But the hematologist Doesn’t connect the iron deficiency anemia with the MDS he thinks it is something else. I don’t have enough ferritin in my blood and I have to have iron infusions because taking iron doesn’t work for me it won’t absorb.I don’t have an itching problem anymore than usual but what I do have is a problem with thinning skin and sores that develop them because my platelets are low they just don’t ever seem to heal.

[Marie Miguel]

thanks for sharing your experience. If your body wont absorb iron, how will you have iron then?

[stacey]

Janet,

I am so very sorry you are going through pain and night sweats and things haven’t been getting better.
First, just to clarify on your endoscopies — it sounded like they were unable to find the source of the bleed, and therefore were unable to do any kind of laparoscopy laser surgery to halt the source of the bleeding (the watermelon stomach). So they did endoscopies, but no actual laser surgery on your stomach to help with that, correct? I wish you could find someone who has experience with that condition to do the actual laser surgery; that would be the best option of treatment so you don’t continue to lose iron from that stomach bleed.

Second, Please tell us what region you live in. Someone on this board could hopefully recommend a better hematologist for you to see near where you live.

I would also look at clinicaltrials.gov and search on watermelon stomach to see if you there are any clinical trial options for you that are currently recruiting. I noticed on that website that Thalidomide has been studied with that condition. Assuming it had positive outcomes (at first glance, I think it had), and if your white blood cell counts and platelets weren’t too low to try it, I would ask the hematologist about it. I take its derivative drug, Revlimid, for my (5q-) MDS bone marrow disorder. A hematologist should be very familiar with that drug (because it’s used for other blood disorders like multiple myeloma), and perhaps that is also an option. There are some side effects with that drug (neuropathy, etc.) to be aware of. But that is something I would at least inquire about if it was me. I also wouldn’t hesitate to participate in some kind of clinical trial if one is available and you meet the requirements for enrollment.
You are going through so much and I hope things get better for you.
-Stacey

[Janet Joslin]

Thanks so much for responding. When I had the stomach bleed they went in and found that it was ulcerated and they cauterized and stopped the bleeding. I went home but then I bled some more and they went in and did it again. Since then I have had about five endoscopy’s because my hemoglobin would get too low but they couldn’t find the source and they said that the watermelon stomach was not there! Figure that one out? About five times with my hemoglobin going down and my platelets, And my iron in my white cells were always on the low end they would do the camera endoscopy’s and again there was only one time that the doctor said he thought he saw something kind of like a bruising but it was in my intestines that go from my stomach and he cauterized it. But he wasn’t sure that could’ve been the cause of the bleeding! He said that I did have diverticulitis but saw no bleeding. So far there had been four different gastroenterologist because everything was changing in Auburn as far as gastroenterology went. So a year ago I moved here to Petaluma California And saw a new gastroenterologist who did the endoscopy of course because my hemoglobin had all dropped and he couldn’t find anything to cauterize. By the way through all this we found that I had a fib, and congestive heart failure. In my heart doctor was giving me blood thinners and other medication for my heart. So of course I had to make a choice of whether I was going to have a stroke or have a Gastro bleed! But then my heart doctor that was here in Petaluma said there was a new procedure Called “the watchman” That would prevent me from getting a blood clot so that I could get off the blood thinners! It was something that they put in my heart, a device that would catch the blood clots. It was non-surgical and they were able to go up through my groin artery and do it. I am the first want to have this done in Sonoma County and probably because I had the issue with the bleeding! Doctors flew in from all over to observe the surgery I was famous! So my doctor told me I should see a hematologist because through all this my blood saturation was very low white cells still low platelets still low. He suggested that I have iron transfusions regularly. So then I go to the hematologist and He says that the iron problem is not the problem with the low blood cells and wants me to have a bone marrow biopsy. Another words he says I have two problems! End it is up to my gastroenterologist to solve the iron problem then it Hass to be from pleading! And of course the gastroenterologist is not finding where I am bleeding and my poop tests are not showing any blood! He does the biopsy and comes back with the MDS with chromosomal changes and tells me we don’t want to do anything now that he’ll see Me in six months. So here I am trying to find out from others if they have any similar issues. I am going to find a Doctor Who is an expert at MDS probably at Stanford, and hopefully get some answers. This has been going on for me for over 10 years. Can you believe it that there was never a doctor that would answer my questions as to why my iron and my platelets and my WC count are always on the low side? Even though I had had breast cancer and radiation none of my doctors figured this out.. And still haven’t!
At this point my thoughts are to do as much as I can in alternative and natural ways to relieve any stress in my life so that my body can do it’s own healing. That doesn’t mean I expect a cure. I am so tired of dealing with doctors that don’t have a clue about ME. The first thing I’m going to do is find out about something called GO FUND ME. I don’t have any money for anything, not even a massage so that I can keep myself relaxed. But also I am going to work with a shaman, who uses magic mushrooms end guidance. I have read a lot about this and if nothing else I will get to know myself and my past stress issues that have caused this disease in me. I know that everything comes from my thoughts and my ideas about myself. Then I will do what is called Microdosing. Again what it does is nothing like a LSD trip or anything it just raises your joy in life. This way I can except whatever happens and whatever I have to go through until I pass on. I am 77 years old I have no fear of death. But I have had a very Very stressful life both emotionally and financially. I see this as a wonderful opportunity to finally heal my spiritual self and go on to whatever comes next, which I believe is reincarnation. My friends find me to be very inspirational because of my attitude towards my life and my long time issues with my health and autoimmune disease. This is healing in itself. If I can help others with just the way I am going through this thing that makes it all worth it for me!

[Kathy Lynch]

Hi, Since you are close, you should go to Stanford for a evaul… Dr. Greenburg one of the God Fellows of MDS and his staff can help figure out what is going on. They will work with your doctor….

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