HbA1c and ferritin

[Clase]

Hello all. I'm curious to see if anyone else has come across this. My ferritin levels have hovered around a low number for a couple of years now; anything from 8 to 38. When I contacted the doctor in November feeling unwell, very low energy, restless legs, waking up with a headache and tired all the time she said my ferritin .even was low (that was the 38 reading)and put me on an iron tablet. Fast forward 3 months of taking iron, still feel rotten , added low mood and nausea so another blood test. It's gone down to 12. Coupled with this is an increase from 46 to 55 in HbA1c. Not allowed an iron infusion because haemoglobin is ok so despairing a bit. I have an appointment with the diabetic nurse next week so not looking forward to that. So my question, has anyone else had a problem an increase in HbA1c coupled with low ferritin? And any suggestions of my you dealt with it. I should add I'm on long term PPIs for gastric problems.
Sorry to ramble; feeling a bit sorry for myself.

 

[Nicola M]

Interestingly this study (https://pmc.ncbi.nlm.nih.gov/articles/PMC3933917/) suggests that low ferritin can cause an elevated HbA1c. My ferritin has always been borderline but never low enough that they've bothered to give me anything for it. I'm on PPI's regularly too and whilst I know they can have a higher chance of affecting B12 levels I'm unsure about ferritin, perhaps your doctor or the info leaflet in the packet could shed more light on that though. Would definitely be seeing if there is anything more they can do for you in regards to the low iron levels, hope things look up for you soon!

 

[Clase]

Interestingly this study (https://pmc.ncbi.nlm.nih.gov/articles/PMC3933917/) suggests that low ferritin can cause an elevated HbA1c. My ferritin has always been borderline but never low enough that they've bothered to give me anything for it. I'm on PPI's regularly too and whilst I know they can have a higher chance of affecting B12 levels I'm unsure about ferritin, perhaps your doctor or the info leaflet in the packet could shed more light on that though. Would definitely be seeing if there is anything more they can do for you in regards to the low iron levels, hope things look up for you soon!

Thank you for that. I have B12 problems too . Years on Metformin can cause low absorption of B12 and I suppose 25 years counts. Seems like after 32 years of Type 2 things are beginning to bite. I will discuss it with the doctor on Friday and the Diabetic nurse in a couple of weeks.

 

[Louise12216]

That’s interesting, I was told last year that I was borderline anemic following a full blood test due to the same symptoms you have describe. At the time I just put it all down to an extremely stressful time I was having with my parents having different health issues. I was prescribed 3 months of iron tablets and was re-tested and I had just crept into the intermediate range, so have just finished another 3 month prescription for iron tablet’s. I go next week for my next blood test, but already I think the levels are not right as I am finding the restless legs are coming back, the shortness of breath, and the fatigue. My HBA1C according to my Libre has not changed even though I have lost weight and reduced my insulin intake because of it and being on Mounjaro. This forum is great, to know ‘it’s not just me’ from other people posting

 

[Clase]

That’s interesting, I was told last year that I was borderline anemic following a full blood test due to the same symptoms you have describe. At the time I just put it all down to an extremely stressful time I was having with my parents having different health issues. I was prescribed 3 months of iron tablets and was re-tested and I had just crept into the intermediate range, so have just finished another 3 month prescription for iron tablet’s. I go next week for my next blood test, but already I think the levels are not right as I am finding the restless legs are coming back, the shortness of breath, and the fatigue. My HBA1C according to my Libre has not changed even though I have lost weight and reduced my insulin intake because of it and being on Mounjaro. This forum is great, to know ‘it’s not just me’ from other people posting

Hello Louise. It's hard isn't it dealing with your own health and being concerned with others' too? My husband has heart problems and the last year has been difficult with multiple hospital appointments. We are lucky though, Papworth is only 45 minutes away.
The support of this forum is invaluable. I only wish I'd had it when I was first diagnosed. So take care of yourself. X

 

[Clase]

Well I had a long conversation with my doctor who was upset that the NHS wouldn't give me an infusion though I obviously need it. There was little else that she could do but suggested that if I could afford it that was a specialist doctor in Cambridge who might be able to help. A phone call yesterday, an intake of breathe at the cost and I have an appointment on March 27th for an infusion. The moment I told him that my Ferritin was 12 he said 'You must be feeling terrible. You need an infusion!' Hopefully that may impact on HbA1C too.

 

[Outlier]

I hope it all goes really well for you. It's such a shame we have to take hold of our own health needs at times and pay for it again, but at least the possibility is sometimes there. Here's to better health for you.

 

[Clase]

Thank you. Fingers crossed.

 

[HSSS]

I’ve had similar issues for years. And been battling the nhs about it too. Tried every oral iron going and was unable to tolerate or didn’t respond. Finally found a Gp that discovered (after I asked for referral to one of a few nhs clinics that take low ferritin seriously) that she could do so directly to my local hospital via the haematology dept. They have now stepped in after the first couple of infusions and the dr was fantastic. As well as the madness of the lab range being above about 11 and the definition of absolute iron deficiency being below 30 (limbo in between) he wants mine up closer to 100 consistently. He too despairs of the drs that ignore low ferritin. Despite never having been anemic I’ve had 3 infusions in total for low ferritin on the nhs

I‘ve also always had bottom end of range or low folate, b12 and vit D. They all have overlapping symptoms and work together. Fatigue, headaches, bruising, hair loss and many others etc. Finally managed (only because of the great haematologist‘s recommendation) to get my Gp to give my b12 jabs as well as folate and D. And after 2 years of asking and waiting have a Gastro investigating the malabsorption that’s obviously happening - without answers so far.

I’ll try and dig the names of the NHS clinics out. You can asked to be referred anywhere in the country. And some other literature that helped me. But key is working out why this is happening if you can to plug the leaky bucket as it were - which your GP can help with. Common causes are blood loss eg periods, fibroids etc for females or gut/stomach issues; and medications like PPI causing malabsorption, less commonly things like parasites or mould.

 

[HSSS]

Iron documents - I’m not sure what happened to all the links but hopefully there’s enough info for you to find the docs.

Iron deficiency without anemia – a clinical challenge
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5986027/

Iron deficiency without anaemia: a diagnosis that matters www.ncbi.nlm.nih.gov/pmc/articles/PMC8002799/

cks.nice.org.uk/topics/anaemia-iron-deficiency/diagnosis/investigations/

the Royal College of nursing states that a ferritin level of less than 30 is absolute iron deficiency:
https://www.rcn.org.uk/professional-development/publications/pub-007460

the Royal College of physicians states that a ferritin level below 100 can give debilitating symptoms;
https://www.rcpjournals.org/content/clinmedicine/21/2/107

Iron Deficiency Without Anemia – Common, Important, Neglected



These are the nhs clinics for iron deficiency I found a few years back in the south :- the links seem broken now but might help you find the clinics somehow anyway

Oxford clinic https://nssg-test.oxford-haematolog...y-management-service-info-for-gps_L95xP4v.pdf

Guildford clinic
https://www.fhft.nhs.uk/media/5514/iron-infusion-referral-form-002-march-2022.pdf

 

[Clase]

I’ve had similar issues for years. And been battling the nhs about it too. Tried every oral iron going and was unable to tolerate or didn’t respond. Finally found a Gp that discovered (after I asked for referral to one of a few nhs clinics that take low ferritin seriously) that she could do so directly to my local hospital via the haematology dept. They have now stepped in after the first couple of infusions and the dr was fantastic. As well as the madness of the lab range being above about 11 and the definition of absolute iron deficiency being below 30 (limbo in between) he wants mine up closer to 100 consistently. He too despairs of the drs that ignore low ferritin. Despite never having been anemic I’ve had 3 infusions in total for low ferritin on the nhs

I‘ve also always had bottom end of range or low folate, b12 and vit D. They all have overlapping symptoms and work together. Fatigue, headaches, bruising, hair loss and many others etc. Finally managed (only because of the great haematologist‘s recommendation) to get my Gp to give my b12 jabs as well as folate and D. And after 2 years of asking and waiting have a Gastro investigating the malabsorption that’s obviously happening - without answers so far.

I’ll try and dig the names of the NHS clinics out. You can asked to be referred anywhere in the country. And some other literature that helped me. But key is working out why this is happening if you can to plug the leaky bucket as it were - which your GP can help with. Common causes are blood loss eg periods, fibroids etc for females or gut/stomach issues; and medications like PPI causing malabsorption, less commonly things like parasites or mould.

I'm glad that you've been successful on the NHS. The protocol in our local hospital is that if the haemoglobin isn't low then they won't do it and mine had gone up since I was put on iron tablets in November. I didn't respond to the iron tablets either. The last time I was put on them a couple of years ago, 2 per day at that point it went down again. My doctor says current thinking is to take them every other day so I do it religiously leaving the recommended time but still went down. I too have the usual symptoms, background headache, constant tiredness, cramps which interrupt my sleep (another no no for diabetes) and restless legs, another sleep disrupter, sores on the corners of my mouth and real brain fog! I think my body's inability to absorb B12 , which does resolve with pills, is a consequence of approx. 25 years on Metformin and the low ferritin is about 20 years on PPIs all of which are prescribed and not something I'm doing to myself. They are a direct result of living with Diabetes which is why it infuriates me so much that the NHS won't treat it! Hey ho!

 

[Clase]

I'm glad that you've been successful on the NHS. The protocol in our local hospital is that if the haemoglobin isn't low then they won't do it and mine had gone up since I was put on iron tablets in November. I didn't respond to the iron tablets either. The last time I was put on them a couple of years ago, 2 per day at that point it went down again. My doctor says current thinking is to take them every other day so I do it religiously leaving the recommended time but still went down. I too have the usual symptoms, background headache, constant tiredness, cramps which interrupt my sleep (another no no for diabetes) and restless legs, another sleep disrupter, sores on the corners of my mouth and real brain fog! I think my body's inability to absorb B12 , which does resolve with pills, is a consequence of approx. 25 years on Metformin and the low ferritin is about 20 years on PPIs all of which are prescribed and not something I'm doing to myself. They are a direct result of living with Diabetes which is why it infuriates me so much that the NHS won't treat it! Hey ho!

It would be great if you could dig out the names of the clinics for me. I'll 'happily' pay for this first one but |I have a concern about how often I'll need one; I can't afford £920 on a regular basis. At the moment I'm prepared to do anything to make me feel better.
Sorry for unloading all this. Thank you for understanding.

 

[HSSS]

I’m afraid the links I had to iron clinics in the south have been corrupted. All I have now is the info i posted above. They were definitely nhs though not the private ones. We can ask to be referred anywhere. So if your local hospital are too rigid in their rules try others. Where are you roughly in the country. If your GP is helpful they can send guidance letters seeking advice and criteria out of area if they choose to.

Check the formulary for your NHS ICB (integrated care board, was CCG), there may be other types of iron you could try. There’s quite a few more than they typically prescribed ones that might suit, some nhs some not. Some do much better on heme iron as it’s more bio available and for most has fewer side effects. It’s not on the nhs and is harder to get hold of but it’s an option.

If your b12, D and folate are also low and absorption is poor this will hinder uptake of iron so you need to sort them all in tandem. Is the GP helpful on those? What’s your b12? That especially shouldn’t be left low as the problems can ultimately become long term and irreversible.

As to the every other day advice that’s because of hepcidin, which raises when it encounters iron and down regulates absorption of iron. There is another school of thought that high dose vitamin C can counteract this and allows better absorption and larger daily doses. Things like calcium, dairy, eggs, coffee all hinder uptake and need to be taken a few hours away from iron if possible.

If you’re on Facebook there’s a large group called “The iron Protocol (iron deficiency with and without anemia)“ They have a huge section of files and data links you can delve into explaining all this and much more. It is largely USA based but there is a reasonable uk representation. There’s a few quite frankly odd bod’s on there with some strange ideas best ignored but also lots of knowledge people that might give you more info and avenues to explore further.

 

[HSSS]

I did find this for Oxford. It seems they changed their forms and maybe criteria since I tried them. https://nssg.oxford-haematology.org.uk/general-haematology/dept-docs/H-98-new-document-template.doc. It’s badly formatted and I’m not sure if you need both Hb and ferritin and transferrin saturation low or just one/two of them

Can’t find anything for Guildford now

And I found this private one in Somerset but it’s a lot cheaper at £495 https://www.somersetft.nhs.uk/priva...ital/private-hospital-treatments/iron-clinic/. There’s probably others if you search enough.

A few other tests my GP did to help convince haematology were Soluble Transferrin Receptor, STR/Ferritin Index, Transferrin saturation index, Serum transferrin and a check of inflammation levels (crp) which artificially inflates ferritin.

And lastly b12 deficiency causes macrocytosis. Iron deficiency causes the opposite. If you have both they mask each other causing some drs to miss it!

 

[Jasmin2000]

Hello all. I'm curious to see if anyone else has come across this. My ferritin levels have hovered around a low number for a couple of years now; anything from 8 to 38. When I contacted the doctor in November feeling unwell, very low energy, restless legs, waking up with a headache and tired all the time she said my ferritin .even was low (that was the 38 reading)and put me on an iron tablet. Fast forward 3 months of taking iron, still feel rotten , added low mood and nausea so another blood test. It's gone down to 12. Coupled with this is an increase from 46 to 55 in HbA1c. Not allowed an iron infusion because haemoglobin is ok so despairing a bit. I have an appointment with the diabetic nurse next week so not looking forward to that. So my question, has anyone else had a problem an increase in HbA1c coupled with low ferritin? And any suggestions of my you dealt with it. I should add I'm on long term PPIs for gastric problems.
Sorry to ramble; feeling a bit sorry for myself.

So how could that happen? A1c is a measure of how much glucose is stuck to your red blood cells (RBC). RBCs are replaced every 3 months, so at any one time A1c measures the average amount of glucose stuck to all of your RBCs and gives you an indication of your BG control over the last 3 months.

But...what if you're RBCs were replaced faster than normal because they weren't working so well - various types of anemia can cause this, resulting in an artificially lowered A1c because it's sampling a shorter time frame, and not as much glucose gets stuck to the RBCs. Now you get your treatment and your ferritin tablets and RBCs become healthier, do their job, and stay around for the full 3 months - and your A1c goes up - even though nothing else has changed.

 

[HSSS]

So how could that happen? A1c is a measure of how much glucose is stuck to your red blood cells (RBC). RBCs are replaced every 3 months, so at any one time A1c measures the average amount of glucose stuck to all of your RBCs and gives you an indication of your BG control over the last 3 months.

But...what if you're RBCs were replaced faster than normal because they weren't working so well - various types of anemia can cause this, resulting in an artificially lowered A1c because it's sampling a shorter time frame, and not as much glucose gets stuck to the RBCs. Now you get your treatment and your ferritin tablets and RBCs become healthier, do their job, and stay around for the full 3 months - and your A1c goes up - even though nothing else has changed.

Except iron deficiency anemia gives artificially false high hba1c not low - as the lifespan is prolonged not shortened as production of rbc decreases. https://pmc.ncbi.nlm.nih.gov/articles/PMC3933917/#:~:text=Ferritin is the storage form,-diabetic individuals [2].

Some other conditions accurate production/replacement and give false lows.

What is really hard to find are studies on low ferritin but normal haemoglobin (iron deficiency without anemia) and hba1c and it’s less clear if the same effect occurs or if it does to what extent. IDWA appears to prioritise RBC over all other iron necessary functions. Hence it’s perfectly possible to be highly symptomatic whilst not yet anemic. Sadly, many drs don’t get taught this.

 

[Clase]

I’m afraid the links I had to iron clinics in the south have been corrupted. All I have now is the info i posted above. They were definitely nhs though not the private ones. We can ask to be referred anywhere. So if your local hospital are too rigid in their rules try others. Where are you roughly in the country. If your GP is helpful they can send guidance letters seeking advice and criteria out of area if they choose to.

Check the formulary for your NHS ICB (integrated care board, was CCG), there may be other types of iron you could try. There’s quite a few more than they typically prescribed ones that might suit, some nhs some not. Some do much better on heme iron as it’s more bio available and for most has fewer side effects. It’s not on the nhs and is harder to get hold of but it’s an option.

If your b12, D and folate are also low and absorption is poor this will hinder uptake of iron so you need to sort them all in tandem. Is the GP helpful on those? What’s your b12? That especially shouldn’t be left low as the problems can ultimately become long term and irreversible.

As to the every other day advice that’s because of hepcidin, which raises when it encounters iron and down regulates absorption of iron. There is another school of thought that high dose vitamin C can counteract this and allows better absorption and larger daily doses. Things like calcium, dairy, eggs, coffee all hinder uptake and need to be taken a few hours away from iron if possible.

If you’re on Facebook there’s a large group called “The iron Protocol (iron deficiency with and without anemia)“ They have a huge section of files and data links you can delve into explaining all this and much more. It is largely USA based but there is a reasonable uk representation. There’s a few quite frankly odd bod’s on there with some strange ideas best ignored but also lots of knowledge people that might give you more info and avenues to explore further.

Except iron deficiency anemia gives artificially false high hba1c not low - as the lifespan is prolonged not shortened as production of rbc decreases. https://pmc.ncbi.nlm.nih.gov/articles/PMC3933917/#:~:text=Ferritin is the storage form,-diabetic individuals [2].

Some other conditions accurate production/replacement and give false lows.

What is really hard to find are studies on low ferritin but normal haemoglobin (iron deficiency without anemia) and hba1c and it’s less clear if the same effect occurs or if it does to what extent. IDWA appears to prioritise RBC over all other iron necessary functions. Hence it’s perfectly possible to be highly symptomatic whilst not yet anemic. Sadly, many drs don’t get taught this.

Hello. Thank you for all this. It is brilliant. I think after the conversation with my doctor she is aware of the problem and frustrated that the NHS won't do anything. My B12 is managed by tablets, at least they work, and currently 451. I take one every three days and although it's steadily going down on that dose I knows that if I move to one every other day it will go up again. Without the tablets it went down to 201. Folate is ok and D is managed by daily tablets.
It would be really good to see someone who has a whole overview of all the consequences and interactions of medication for long term Diabetes. The only time I saw a consultant he messed everything up by putting me on the 'wonder' injections!! Awful side effects and lot me me years of control. When it's combined with severe gastro-reflux and a hernia the combinations can make life difficult.

 

[Clase]

Hello. Thank you for all this. It is brilliant. I think after the conversation with my doctor she is aware of the problem and frustrated that the NHS won't do anything. My B12 is managed by tablets, at least they work, and currently 451. I take one every three days and although it's steadily going down on that dose I knows that if I move to one every other day it will go up again. Without the tablets it went down to 201. Folate is ok and D is managed by daily tablets.
It would be really good to see someone who has a whole overview of all the consequences and interactions of medication for long term Diabetes. The only time I saw a consultant he messed everything up by putting me on the 'wonder' injections!! Awful side effects and lot me me years of control. When it's combined with severe gastro-reflux and a hernia the combinations can make life difficult.

I have an appointment with the Diabetes nurse next week so I've copied the information from one of the reports which links low ferritin to raised HbA1c just in case so thank you again.

 

[Lawcol95]

Hello all. I'm curious to see if anyone else has come across this. My ferritin levels have hovered around a low number for a couple of years now; anything from 8 to 38. When I contacted the doctor in November feeling unwell, very low energy, restless legs, waking up with a headache and tired all the time she said my ferritin .even was low (that was the 38 reading)and put me on an iron tablet. Fast forward 3 months of taking iron, still feel rotten , added low mood and nausea so another blood test. It's gone down to 12. Coupled with this is an increase from 46 to 55 in HbA1c. Not allowed an iron infusion because haemoglobin is ok so despairing a bit. I have an appointment with the diabetic nurse next week so not looking forward to that. So my question, has anyone else had a problem an increase in HbA1c coupled with low ferritin? And any suggestions of my you dealt with it. I should add I'm on long term PPIs for gastric problems.
Sorry to ramble; feeling a bit sorry for myself.