High (Normal?) Hemaglobin

[cristiana]

Hi All

Just wanting to hear from anyone who has ever had/or who has high hemoglobin.

I gather a lot of us celiacs have strange blood test results, particularly liver function (enzyme) tests, which often improve after going gluten-free.  Thankfully mine have to date, all apart from one thing.    I was anemic before DX and went onto iron supplements and I have had high end of hemoglobin readings  ever since.

My gastroenterologist has told me not to take any more iron supplements because of this - last test I think it was 15.5 which for my labs is the limit.  He mentioned something called polycythemia.   Yet my ferritin level isn't brilliant, 20,  it has taken a bit of a dive because of excessive blood loss - sorry TMI - perimenopause problems.

I realise that polycythemia can be caused by living at a high altitude - I don't.  I don't smoke either, another cause.   I am not dehydrated when I have blood tests - yet another cause.      The only polcythemia symptoms I have is a flushed face (on and off, have always had it) and itching, but that could be entirely coincidental.

I have seen other posts about celiacs with this problem and one hazarded the theory that having been so deprived of iron for so many years, and managing, it could be the body's  reaction to suddenly having all it needs.

Does anyone else reading have high hemoglobin and if so, is your doctor concerned?

Thanks!

 

 

[frieze]

do you have any respiratory diseases?

[trents]

It may take awhile for your ferritin levels to catch up. If your hemoglobin level has responded so well to iron therapy it could be that going on a gluten free diet has allowed your gut to heal and now it's absorbing iron from your diet adequately. Just keep an eye on your iron levels. It could be that you just need a lower dose supplement. Chronically high iron levels can damage organs.

Personally, I have taken an over the counter iron supplement for years with 60 mg of elemental iron and it keeps my hemoglobin in a nice range. If I stop the supplement then it will drop. I'm a 65 yr. old male celiac so I can't blame it on menses. Our bodies are all different.

[cristiana]

3 hours ago, frieze said:

do you have any respiratory diseases?

Not as far as I know.  I gather that can be a factor - I had a chest X ray since I fell ill with possible pneumonia but nothing unusual detected.

[cristiana]

3 hours ago, trents said:

It may take awhile for your ferritin levels to catch up. If your hemoglobin level has responded so well to iron therapy it could be that going on a gluten free diet has allowed your gut to heal and now it's absorbing iron from your diet adequately. Just keep an eye on your iron levels. It could be that you just need a lower dose supplement. Chronically high iron levels can damage organs.

Personally, I have taken an over the counter iron supplement for years with 60 mg of elemental iron and it keeps my hemoglobin in a nice range. If I stop the supplement then it will drop. I'm a 65 yr. old male celiac so I can't blame it on menses. Our bodies are all different.

That's interesting, trents.  Do you supplement B12 too?   I do wonder sometimes if I need to look at that again as I get tingling and find it responds quite quickly to a dosing of B12, but I'm now concerned to take that too as I imagine that can affect the hemaglobin, too?

 

[trents]

9 hours ago, cristiana said:

That's interesting, trents.  Do you supplement B12 too?   I do wonder sometimes if I need to look at that again as I get tingling and find it responds quite quickly to a dosing of B12, but I'm now concerned to take that too as I imagine that can affect the hemaglobin, too?

 

Yes, I do take a sublingual B12 supplement and B complex as well. Those are water soluble vitamins so no danger with overdose. The B vitamins play a role in iron absorption. People with pernicious anemia must get B12 injections. They lack an enzyme called "intrinsic factor" that enables them to assimilate B12 from the gut. I think folic acid comes into play there too.

[cristiana]

(Trents, just an aside, I see you have been with this community since 2006.  It is good to meet someone who has been with celiac.com since then!)

What you say about B12, that is interesting.  If you stop taking those supplements, do your hemaglobin levels go down, too?

I took huge levels of B12 sublinguals at one point and I wondered if that was putting up my hemaglobin.  I have an appointment coming up and I think if my hemaglobin levels are still high, despite having cut back dramatically on both iron and B12,  I might request to see a blood expert because I don't want to deprive my body the iron and B12 it needs just because I have high hemaglobin - unless of course there is no other route to take.

 

[frieze]

B12, once you are lacking, probably always req. supplement.  won't exaggerate y our H+H, only bring it to norm, if low.  Resp. disease, such as COPD, will drive H+H up.  Curious your iron stores being low...may OP is correct and now, since your IMMEDIATE needs are taken care of, the storage can begin?  perhaps NO change of supplement regimen, and recheck in 3-6 months? 

[cristiana]

Hi frieze

I have actually just had my latest result today.  Latest installment is  I am back to anemic, but this time the hemaglobin has finally tumbled too so whatever my current problem is it isn't too much hemaglobin -  at least for a while.  My awful perimenopausal symptoms are responsible, there can be no doubt in my mind. 

It seems to me that my current problem with itching skin which thinking back I had when I was diagnosed (but was too scared to mention to the doctor - I self diagnosed a liver complaint because my liver readings were a bit skewed at the time!) might be because of this anemia.  My doctor has given me permission to  take very low dosage iron and this will be reviewed in 6 months - in line with your suggestion too.  

I might come back to this post to give an update in a few months time, in case this is anyone else's problem.

Trent's comment about being a male in his 60s and still needing to take iron is interesting.  I wonder how common this is?  I feel my gut is pretty good these days, but maybe some celiacs need to keep taking supplements forever?

 

 

 

[squirmingitch]

This is a very interesting and informative thread. Please do update when you can.

[cristiana]

2 hours ago, squirmingitch said:

This is a very interesting and informative thread. Please do update when you can.

Wilco!   

[cristiana]

I said I'd update on this one.

My ferritin continues to bump along the bottom of the 'normal' scale at 9 and my hemoglobin is 12.  As I find oral supplementation so hard to stomach (literally!) I have been offered an iron infusion.  It will equate to three months worth of iron, apparently, in one go.  I'm going to check that its OK for me to have this as only months ago I was being told I had to stop supplementation when my iron was 40 and my hemoglobin was 15, at the top of the scale.

Has anyone ever had an iron infusion?  Sounds like a cup hot water with iron shavings in it!!

[plumbago]

There are different causes of anemia. It sounds like you know you had iron deficiency anemia. Your hemoglobin right now, though, is 12. This is normal. Speaking personally, I would not take supplements or get any kind of infusion with a hemoglobin of 12.

Plumbago

[knitty kitty]

I was so curious about this!  I found a study about polycythemia being related to vitamin B 12 deficiency!  

https://www.ncbi.nlm.nih.gov/pubmed/22424943

And then another:

https://www.ncbi.nlm.nih.gov/pubmed/25730455

Even though the usual blood tests found "normal" B 12,  the people in these studies still had a B 12 deficiency as measured by other means.

Remember B 12 needs folate (not folic acid) to work best.

Hope this helps!

[cristiana]

Hi Plumbago and Knitty Kitty.

Thank you so much for taking the time to comment.  Plumbago, I've just discovered that I have an appointment with my gastro in a few weeks, with a blood test beforehand which will reveal the current state of play. I'm going to put off the transfusion until then (if indeed, I have one).  

Knitty Kitty -  that is so interesting about B12 as mine was very borderline for a very long time.   I wonder if that was the reason?  One learns so much on this forum.  I guess if the high hemoglobin returns this may be a factor.

I'll keep this thread updated.

Many thanks again both.

[plumbago]

B12
•    On labwork, will find decreased hematocrit; increased MCS (size of RBC); increase of homocysteine
•    Increase of methylmalonic acids
•    Intrinsic factor antibodies – if elevated, can mean you have pernicious anemia

Best Labs To Order
•    Serum B12 levels is considered not a good indicator because the way B12 works is inside the cells
•    Intracellular B12 analysis is the better determination of deficiency (Spectracell) - or other tests: methylmalonic acid; homocysteine - those last two are not as accurate as spectracell

Source: https://www.youtube.com/watch?v=p0da1xrELcA

[mnburis]

Interesting. I have low B12 ( reading 100), low vitamin D (reading 10) and my hemoglobin is a 16. I never thought about these being related to each other. My hemoglobin has been high for a couple years ( right about the time my stomach issues started) but no one ever checked my vitamin levels until a couple weeks ago.

[ironictruth]

On 7/4/2016 at 9:33 AM, cristiana said:

Hi All

Just wanting to hear from anyone who has ever had/or who has high hemoglobin.

I gather a lot of us celiacs have strange blood test results, particularly liver function (enzyme) tests, which often improve after going gluten-free.  Thankfully mine have to date, all apart from one thing.    I was anemic before DX and went onto iron supplements and I have had high end of hemoglobin readings  ever since.

My gastroenterologist has told me not to take any more iron supplements because of this - last test I think it was 15.5 which for my labs is the limit.  He mentioned something called polycythemia.   Yet my ferritin level isn't brilliant, 20,  it has taken a bit of a dive because of excessive blood loss - sorry TMI - perimenopause problems.

I realise that polycythemia can be caused by living at a high altitude - I don't.  I don't smoke either, another cause.   I am not dehydrated when I have blood tests - yet another cause.      The only polcythemia symptoms I have is a flushed face (on and off, have always had it) and itching, but that could be entirely coincidental.

I have seen other posts about celiacs with this problem and one hazarded the theory that having been so deprived of iron for so many years, and managing, it could be the body's  reaction to suddenly having all it needs.

Does anyone else reading have high hemoglobin and if so, is your doctor concerned?

Thanks!

 

 

Hemochromatosis, iron overload, can affect celiacs. So, be sure your doc knows this and checks you often. Good news....usually treatable by a routine visit to the American Red Cross via blood donation.  lucky for you your ferritin is low so highly unlikely.

Lay off the iron  supplements but keep your diet high in iron.

[cristiana]

On 7/1/2017 at 11:13 PM, mnburis said:

Interesting. I have low B12 ( reading 100), low vitamin D (reading 10) and my hemoglobin is a 16. I never thought about these being related to each other. My hemoglobin has been high for a couple years ( right about the time my stomach issues started) but no one ever checked my vitamin levels until a couple weeks ago.

Hi mnburis... just checking if you are still looking at these posts as I'd be interested if there have been any developments in your own circumstances?  My own update on this thread is my ferritin is still low (9) but haemoglobin 15.5.  I was caught between two doctors and one wanted me to supplement ferritin, the other didn't, and now I'm at 15.5 I've taken the decision to not supplement at the moment until my next round of blood tests.

[cristiana]

I was asked by knitty kitty to keep this updated - my hemoglobin is now 15.7, but my ferritin is 8 as I'm being good and not supplementing iron, as per doctor's instructions!  That said I was quite dehydrated when the test was done, so maybe that has a bearing?

My doctor isn't concerned but they are keeping an eye on things.  When I was in my teens I did have phlebitis and a doctor told me way back then I had sticky blood.  So maybe t is probably something I've had in years.

Does anyone else reading this have "sticky blood" - and do they take aspirin for it?  I wondered if there was a way of minimising the symptoms of low dose aspirin because it really burns my gut.