Iron deficiency anemia and PMR
Posted , 13 users are following.
I have discovered that I have iron deficiency anemia. My rheumatologist is the one who first discovered that I was anemic and since my blood test was so low she was concerned about internal bleeding. So I go to a GI doctor (well she's a PA) and she order a sonogram of my stomach area and they discovered I have a fatty liver as well but they did not detect any bleeding. So she has put me on iron pills. After a week of iron pills my blood test was even lower. So tomorrow I go back in for more blood work. But tonight I was looking up iron deficiency anemia and I discovered that it can be caused by a disease with inflammation. So of course my mind went immediately to PMR. Has anyone else out there in PMR land dealt with this?
1 like, 74 replies
stanley36717 amkoffee
Posted
I went thru the same process after a failed (unrelated) surgery. I had leg and shoulder pain, night sweats, low iron, a SED rate over 120. I went thru every test they could think of including iron injections and a bone marrow test before I Googled "high SED rate" and came up with PMR. It went on for 3 months. The pain was relieved in 1 day with prednisone. Then I had the temporal artery surgery for GCR. They only checked one side and it came up with a false negative. So I lost partial vision in one eye. Anyway, 4 years later I'm on 4 mg of pred a day and every time I try to go lower, I have a scare of some sort.
ClaireJG amkoffee
Posted
EileenH amkoffee
Posted
Low grade anaemia is often listed as a symptom of PMR and is quite common in chronic diseases of various sorts. If it is present and ignored over a long period it will get worse. It is one of the things they should be checking for when you are first investigated - it is a basic part of the full blood count test which should be done as a rule-out of various things that can mimic PMR or cause PMR-type symptoms. If it wasn't present when you were first diagnosed then someone needs to do a bit more investigation as that would suggest it may be a new development and happening faster than they think.
However - in my experience it would be a pretty amazing ultrasound technologist who could see bleeding! And often low iron is due to bleeding far lower down the digestive tract. They should also be looking for faecal occult blood (old blood in a stool sample) to see if you are bleeding somewhere. My MIL was anaemic - due to long term very slight bleeding from polyps which can be found anywhere in the gut.
amkoffee
Posted
Thank you everyone for all your useful information. Elizabeth i had a CBC test done before I was diagnosed with PMR and everything was fine. And then the last year-and-a-half that I've had PMR my doctor takes a CBC blood test every 3 months when I see her. The last two test that she gave me showed anemia. I can't remember the first one's number but the second test showed that it had gone down even more and that was it 7.2. and then after week of taking iron it went down further. So the PA I'm seeing at the GI office called it persistent anemia. I have had a fecal test done and there is no blood in my feces thank goodness. I really am tired of this PA and the way she's handling my case. I feel like this thing has just been dragged out and is moving along at a snail's pace. In the meantime I feel horrible I am nauseous all the time (don't know if that's related). I am taking Carafate and Ondansetron to help control the nauseousness but I still get nauseous every day it's just not as bad when I'm on those drugs. And while all this is going on I'm laid up in bed with a broken ankle. This has not been my year so far.
EileenH amkoffee
Posted
I'm really not happy with it either amkoffee - I'd want a doctor's input. And "persistent anaemia" is a meaningless term - are you sure that is what she said? Not pernicious anaemia which could sound similar? But pernicious anaemia is a condition that requires B12 supplements as injections, it isn't something to treat just with iron.
You maybe need to see a haematologist. Not just a PA.
amkoffee EileenH
Posted
It was the nurse that told me so now that you said that I wonder if she got it wrong. Although it is possible that I misheard. But I would think if it was them she would have ordered the B12 shots. This is so frustrating. I would change doctor's but every other GI is booked for months.
amkoffee EileenH
Posted
I am surprised that she only works out of one Hospital in town. We have a total of four general hospitals and she only works out of one. I'm kind of surprised she only has privileges in one hospital in town. That is why I have to wait so long for a colonoscopy and the other test that goes down the throat (I can't ever remember the name of it).
EileenH amkoffee
Posted
Endoscopy?
To make a diagnosis of pernicious anaemia she'd have to do other tests i'd have thought. Or have you had B12 levels checked already?
The problem in PA is that the stomach is unable to absorb it - you can take all you like orally and it won't help. You need injections. It is an autoimmune disorder too - and as Mary has said, some medications you may be on add to the problem.
I'd be asking around about your doctor - sounds strange. And as I say, what about a haematologist?
amkoffee EileenH
Posted
I have decided to change doctors. But I can't until I have the colonoscopy and the endoscopy. I am so fed up with this PA that is handling my problems. But it will be months before I can get in to see one.
?These two tests are being done because I am experiencing daily nausea I think. I don't know if she can find something like bleeding which could explain my anemia I can't hardly eat. In fact since this all started two months ago I've lost over 12 pounds. Not a whole lot but considering that I am on prednisone and I cannot walk due to a broken ankle, I think that that is a bit of weight. I am taking 3 kinds of meds for nausea and it helps some but not nearly enough.
?So I think tomorrow I am going to make an apt with a hematologist and a GI doctor. Between them I should be covered, right?
?Eileen as always you've been a wealth of medical info and I appreciate all that you share with our group.
Silver49 amkoffee
Posted
EileenH amkoffee
Posted
Good - because what you are describing sounds like something that needs investigation NOW not in weeks or months time. You have typical symptoms of something potentially really nasty - I'm not saying you do have cancer of some sort, but without investigation you can't know and it is preferable to know sooner rather than later. Nausea and weight loss are cardinal symptoms. I know someone else through the PMR forum who had nausea and weight loss and it was dismissed for months and months. When someone did feel it should be investigated (again, after I pushed the lady to ask) it was found to be oesophageal damage that had to be dealt with as an emergency by then. Even in the UK in the state it is in, such symptoms would be investigated within 3 weeks.
amkoffee EileenH
Posted
Well I have an appointment with a hematologist next week and when I see my GP tomorrow I will ask her to do a B12 and folic acid blood test. She is also going to give me a referral to another GI doctor. But just as I suspected the one that I prefer to use is booked out until July and the others can't get me in sooner than June. I will continue to go to my current GI at least until I get my colonoscopy and endoscopy However I just read that there is such a thing as folic acid deficiency.
mary19068 amkoffee
Posted
One of the chief causes of anemia is low B12 if it gets very low there is no oxygen getting to your blood cells to make new ones and the result is anemia which can lead to pernicious anemia which can be dangerous....
amkoffee mary19068
Posted
Thank you for that info. I read about that online. I was taking it before I broke my ankle and that's when the nauseousness started so I stopped all of my supplements except calcium because I was afraid any of them would cause more nausea. But about 2 weeks ago, after I read about it online I started taking B Complex which includes B12 and folate and others. I just can't believe that none of my doctor's every recommended it to me.
mary19068 amkoffee
Posted
Hi amkoffee
I don't know how old you are, but from 55years onwards we can't absorb b12 because the protein 'Intrinsic Factor' and our 'Patetial cells' in our gut decline. These support the absorption of b12 through the gut and the ileum into the system. Also, various medications block b12 absorption such as Metformin for Type 2 diabetes which i am taking. I have 3 monthly b12 injections because my b12 was dangerously low. I suggest you mention this to your doctor because if your over 55yrs the b12 supplements will not absorb into your system. You can, however, get b12 patches whereby b12 will absorb through the skin and sublinqual tabs and sprays which absorb through the mouth and under the tongue. These are fine to use once your b12 has been topped up by injections of 'Hydroxycobalamin' and the patches and sublingual tabs and sprays are for maintenance until next injection, which for me only lasts 2 months and not 3 months. At present i'm in negotiation with my doctor for 2monthly injections. It is very important to have the correct levels of b12 to maintain our iron levels to counteract anaemia and pernicious anaemia...
mary19068 amkoffee
Posted
amkoffee mary19068
Posted
Mary every single time I read somebody's post on this thread it makes me get angrier and angrier at my GI doctor. I'm 56 at this time so I'm obviously over the 50 year old mark. I also take 2000 mg of Metformin daily for my type 2 diabetes. I have just made an appointment with my GP about something else and I fully intend to ask her to run a B12 test for me. I am also asking her to schedule an appointment for another GI doctor. But the one I called which is with the same group that my GP is with is booked up to July. So for that reason I'm not going to fire my current GI until I see a new GI.
On a blood test to look for a B12 deficiency what would the test be called? I have had quite a few blood tests over the past year and I have looked thru them and not ever seen anything that says B12 but I know like some other tests it could be called something else.
mary19068 amkoffee
Posted
Hi amkoffee
It will say Serium B12 and give the result alongside...I cannot believe you have never been tested for B12 levels, especially as you have Type 2 diabetes and taking 2000mg Metformin per day as i do also do you have any stomach problems such as acid reflux and take PPI's these too block B12 absorption.. You really do have to push for a B12 blood test and it's my guess your B12 is low going by your diagnosis of anaemia and possibly pernicious anaemia....keep me posted..
amkoffee mary19068
Posted
I do have stomach problems have had gerds for many years and in all these years I have been taking PPI. In fact my current GI doctor put me on 40 mg of a PPI. And I went through all my blood test results that are online which I think is all of them and nobody from my GP to my rheumatologist to my GI doctor has ever tested my B12 levels. I can kind of understand my GP not doing it because I just changed her a few months ago and she might not have made the connection.
I googled pernicious anemia and I have 8 symptoms of pernicious anemia that are listed by the Mayo Clinic. I have been told not to trust WebMD and since then I have not but I do trust Mayo Clinic. So when I see my GP on Thursday we're going to talk about a new GI doctor and I want to ask her to test my B12 level. I'll keep you posted on how that appointment goes.
mary19068 amkoffee
Posted
Hi amkoffee
With your Intrinsic factor on the decline, 2000mg Metformin daily and PPI's i would say your B12 is very low due to the fact your system has not been able to absorb due to meds blocking it and declining IFactor. You have obviously been taking the various meds that block B12 over a long period of time due to you now presenting with anemia or maybe pernicious anemia. I really do hope they get your B12 checked and start your B12 injections asap which will be given quite a few times over a period of two weeks initially to get it topped up to the level it should be and then three monthly......
EileenH mary19068
Posted
It isn't entirely true that we CAN'T absorb B12 - we generally do, just not as efficiently.
EileenH amkoffee
Posted
mary19068 EileenH
Posted
Yes, ordinarily, without medications that block B12 absorption, i would say a miniscule amount of B12 would absorb with perhaps a miniscule of Intrinsic Factor Protein available when 55 years and over...
EileenH mary19068
Posted
My B12 was OK last time we looked - and I'm heading relentlessly for 66 (oh yuk...)