Iron deficiency anemia and PMR

According to Dr Google there's quite a range for folic acid, which your level seems to fall very nicely into the middle of.  

A former co-worker seemed to have a lot of trouble holding onto iron and has had to have an infusion, I think that's what it was.  It helped her, but she has needed more over the years so it wasn't a permanent fix.  

Hi amkoffee

That is a high b12 level but ok if the range was ng/L (nanogram per Litre the lab may have used ug/L some labs use different ranges) because you can't overdose on b12 as it is water soluble and is released via urination..Serum Folate sounds fine mine was 20.5ug/L (micrograms per Litre) 14.0 is ok if the range was ug/L....it will be interesting to see what the methylmalonic blood test shows...keep us posted...

You can have a normal blood B12 level but still have symptoms!

https://www.nhs.uk/conditions/vitamin-b12-or-folate-deficiency-anaemia/diagnosis/

https://stichtingb12tekort.nl/wetenschap/stichting-b12-tekort-artikelen/english/misconceptions-about-a-b12-deficiency/

So the MMA test will definitely be of interest!

Hi Amkoffee

The high reading of 1009 could have been tested in the range of pg/mL (picograms per millilitre) which will show a high reading but in ug/L and ng/L will show lower numbers than 1009...and may still be normal levels....have to do the math...🤔😕

I read the two articles you included in your comments. One thing I overlooked is the neurological aspect of B12 deficiency. I drop things all the time and I don't mean two or three times a day I mean 2 or 3 times an hour. My hardest thing I find to hold onto is my cell phone. Like I am now I have my cell phone in front of me but I'm laying down, and I can't tell you how many times I have dropped my cell phone onto my face! LOL But this has been going on for about 9 months maybe a year. I do have arthritis in my hands but this whole time I did not believe it was from my arthritis because I wasn't dropping things out of pain. But that could certainly indicate a neurological problem. I'm also having dizzy spells, sometimes all I have to do is shut my eyes and everything will start spinning.

Definitely worth investigating - and it sounds as if your doctor is aware of the conundrum. Hope the haematologist helps.

Hi amkoffee

I constantly dropped things and bumped into things, had imbalance, dizziness, memory loss, dreadful brain fog, pins and needles and numbness, very low mood and irritability also severe fatigue and weakness and frequent urination especially at night (Nocturia). My Serum b12 is now 542ug/L which is normal. I do hope you can get to the bottom of what is going on with your anemia and b12 because if you have anemia or perhaps pernicious anemia your b12 should be low. The high levels of b12 that your blood test showed could be a false positive due antibodies in your blood which can interfere with blood testing....going by your symptoms i am convinced you have low b12....keep us posted re: Methylmalonic blood test...

Your list of symptoms are the same as mine with the exception of the pins and needles. And one of the articles that Eileen posted mentioned that a high B12 test is more likely to be wrong. So when I see the hematologist on Monday. I'm going to request that he give me that other test. He's a really nice guy so I have no reason to think he won't be willing to do it.

Hi amkoffee

Yes those articles are correct it seems your test range was 1009pg/mL.....and pg/mL only goes up to 1000pg/mL....so it is very likely a false positive result. You are an enigma amkoffee but very interesting, can't wait for the methylmalonic result....😊

Well I always knew there was something wrong with me! Hahaha I can't wait for the results either.

Hi amkoffee

Hahaha!😅😆.... it's great you can keep up your spirits and laugh about it...the way to go!....👍

Hi amkoffee

Serum Iron: tests circulating iron bound by transferrin (to do with ferratin) When there is a deficiency it can cause anemia and other problems.

Haemoglobin: Is a protein in our blood cells that carries oxygen to bodily organs and tissues and transports carbon dioxide from organs and tissues back to the lungs where it is exhaled....

I'm glad you've seen the Haematologist. I would have thought that they would have admitted you if they had concerns. Certainly, that's what they do in the UK. He/she must feel that monitoring your iron levels is what is needed. Would your GP go through your blood results with you? Bloods can vary from day to day,  week to week depending on what else is going on..... fighting an infection etc. My OH attends Haematalogy and his results  have fluctuated. I think it is better to ask one of your own medical people to explain your results because they will have the full picture. Best wishes. 

Hi amkoffee

Hemocrit is testing for percentage of red blood cells (RBC's)by volume. Yours are low. In fact all your blood tests are low and your platelets are high indicating somethings up. Your iron is obviously low and i can't believe they are leaving you another month like this. You should be in hospital now on an iron IV drip and then given b12 injections after.

A friend of mine had the same thing and the docs could not believe she was still on her feet. When the blood results came back she was sent straight into hospital for fear of developing pernicious anema. She is fine now and has 3 monthly b12 injections...i do hope you can get something sorted out sooner than a month..

I'm going to call the hematologist office tomorrow and have them ask the doctor about me coming in sooner than 4 weeks. I've already been on 650 mg of iron for 3 weeks and I don't know why he needs an additional 4 weeks. I feel terrible. Of course I'm pretty much stuck in bed or my scooter so I'm not utilizing a lot of energy and so I don't think I would even notice an increase amountof fatigue due to my PMR and medication that makes me sleepy. About to develop a low-grade fever although I don't seem to have one right now but the fever seems to hit in the evening after dinner.

Unfortunately the one who's been for doing my most recent blood tests is my GI doctor. Well she's not a doctor she's a PA and she just won't call me back. My last blood test was a week from yesterday and she has yet to call me with the results. But since I can sign in to the Laboratories website I've gotten the results of all the blood tests. Unfortunately I don't know what everything means because I don't have a medical degree. And it's her damn job to have her nurse call me with the results and what I should be doing about it. I am in the process of changing GI doctors because she is just horrible but the soonest they could get me in was July 5th so I have an appointment with them then. And I don't want to let go of this GI yet because I have a colonoscopy and an endoscopy scheduled for May 16th. Once I have that test I'm letting them go. And when I do they're going to hear from me.

It sounds like a very difficult situation for you. I think your Haematologist would be the best person to contact about your blood results. That is their area of expertise. I hope you get some satisfaction and clarification from them. You need answers. 

Hi amkoffee

I'm not surprised you feel terrible!..your energy levels must be nil. It would be a good idea to call your Haemo and stress how dreadful you are feeling and if you could have the iron IV sooner. When are you having the Methylmalonic test?..

Hi amkoffee

The Methylmalonic test or MMA Methylmalonic Acid is raised this will indicate low B12...

Hi amkoffee

May i ask why you are having an endoscopy and colonoscopy?

Ever since I broke my ankle (Feb 6) I've had extreme nausea. My doctor has me on two different nausea medicines and I'm still nauseous every single day. When it started I also had diarrhea so I assumed it was something like the stomach flu. But my diarrhea cleared up and I was still very nauseous. I haven't vomited yet but I think that's only because I have problems doing that anytime. I originally went and saw her several months before I broke my ankle because of nausea. But the nausea I was experiencing then was nothing like what I'm having now. It actually hurts and sometimes makes me cry. Early on I took a test where I swallowed barium and then they x-ray me to see if I have ulcers or any of those kinds of things. And that showed nothing, it was normal. She also upped my PPI dosage. When this first started I was nauseous day in day out 24/7. Now it's mostly happens when I eat. So it has changed my diet so much that between my nauseous stomach and my bad mouth from Sjogren's syndrome I have quite a bit of trouble eating. I've lost over 12 pounds so far and since I'm very overweight it's good for me to lose some weight. But it's a real suck you way to lose weight.

I've already had it but I haven't got the results yet. My hematologist ran the test at my request. I'm going to call today about getting iron IV sooner and at that time I'm going to ask if he has the results from that test yet. I'm glad to know that the higher the score means that I have a B12 deficiency.

Haemoglobin is the iron-contaning "red" colour pigment in the red blood cells that binds to  oxygen in the lungs and transports it around the body where it releases it as needed when it gets to areas with not enough oxygen. Serum iron is the amount of iron in the liquid part of blood, the straw coloured liquid you see when the cells settle to the bottom of the container and is usually measured using other tests and calculated. 

This may help:

https://labtestsonline.org/tests/iron

Click on the bit that says see more under What is being tested.

The ALT is often raised in PMR. Pred makes some things rise with no need for concern - white cells, neutrophils and platelets for example. The haematocrit is low because you are short of blood cells for some reason - and that is probably why your iron and haemoglobin are low too.

I don't know what you mean by hematology  25.8% - that is the lab in general as far as I'm concenred - maybe you've missed something. Sorry - travelling so can't look stuff up just now.

I think he is wants to have a better idea of WHY all these things are low - low iron and low B12 aren't the end of the world to a week or two. You have too few red blood cells - and that is why other things are low so the crucial thing to know is why you aren't making RBCs. Having too much iron given to you at one go isn't good either if there aren't RBCS for it to go into. 

You don't develop PA because your iron is low, your iron is low BECAUSE you have PA. And you are anaemic BECAUSE you have a problem somewhere else.

Hi amkoffee

The most common cause of pernicious anemia is the lack of Intrinsic Factor Protein and the Paletial Cells in the gut that assist b12 absorb through the gut and ileum and into the system and very low B12 causes pernicious anemia.

I do feel for you amkoffee i do hope you can get them to do something soon. You are a marvel you really are handling this very well with your sense of humour and high spirits!....way to go keep it up😊...hope you can obtain your MMA (Methylmalonic Acid) test results asap.....👍😘

Mary you're not going to believe this but I called the hematologist office today to try to find out what my lab results were and to see if the doctor would agree to letting me see him again sooner than 4 weeks. Well as it turns out I made a mistake because before our appointment I was to stop at the lab to get some blood work done so I had that done and I think that was mostly just a CBC and maybe a metabolic panel I'm not sure. But after I saw the doctor he ordered a couple of more test and I got confused about it and didn't stopping at the lab. So I did go today and they're testing my iron and the B12 test. The lab technician said it would be 4 days before the results would be back. So we'll have to see what the iron is now that I've been taking it for 3 weeks. Your help encouragement and information is very much appreciated. Thank you Mary

Hi amkoffee

I'm not at all surprised you got confused one of the many symptoms of B12 deficiency is memory loss, brain fog and confusion is all part and parcel of low B12, i went through it too. I'm so pleased my comments encouraged you to phone otherwise you would not have had those necessary blood tests.

Have a good weekend and i look forward to your results. You are now on the right track.....keep up those good spirits!....👍😊...

It was a typo. It should read  hematocrit 25.8

What is PA?

pernicious anaemia