I was diagnosed with iron deficiency anaemia in May and have been taking iron (gentle iron) and recently had a blood test to see if it had improved. I was annoyed to find that they didn't test ferritin again, just a full blood count. My haemoglobin is now 135 (range 120-150) so bang on.
I spoke to a GP yesterday and am none the wiser really. She had "never heard" of gentle iron but suggested they normally advise patients to take iron until the haemoglobin is normalised then stop, and if symptoms recur to have another blood test. I told her I was vegetarian but had never been anaemic before despite being vegetarian for 30 years ...she then suggested it could take that long for iron stores to deplete! I really did think that was absolute nonsense.
Anyway what do I do? I have no idea what my ferritin level is now and don't want to take too much iron. Or not enough. I was taking 60mg p/d but have dropped to 40mg. I noticed my MCV and MCH were near the top of their ranges and wondered if it was related to iron supplementation or my B12D. Could this be an indication that I need more B12? I currently self inject every 6 days.
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Curlygal
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being near the top of the range for MCH and MCV is still in range so unlikely to be significant.There are plenty of vegetable sources of iron so no reason why being vegetarian should make you iron deficient though it is true that it can be a bit more difficult to extract iron from vegetable sources and if you already have an absorption problem with B12 can affect other vitamins and minerals, commonly folate and iron.
ferritin is generally a good indicator of iron status but doesn't tell the whole story - a full blood count with no sign of anaemia and good haemaglobin levels is also a good proof that you don't have anaemia. There have been cases of GPs acting purely on low ferritin levels with the results that their patients suffered iron toxicity.
You might find a pharmacist more useful in giving advice about supplementation than your GP.
I've looked up the British Society of Gastroenterologists guidelines and according to them, iron supplementation should continue for 3 months after levels normalise. But it's utterly ridiculous that I have had to do this instead of receiving appropriate (informed) advice from the GP.
I have the opposite, I have haemochromatosis so my body stores iron. I have routine blood tests and treatment to ensure the levels stay within a normal range.
As part of this I was told by my haematologist to reduce my intake of greens like broccoli etc, as these veggies are high in iron so I'm sure being a vegetarian is not the cause of your iron deficiency and more likely to be an absorption problem. A good GP should know that.
I don't think she was a good GP! My partner is doing his nurse training right now and he was appalled by her communication skills. But I do accept that GPs are under incredible pressure at the moment.
Hey, yes — I’m also a vegetarian, and when I suggested that my diet was responsible for my IDA and low B12, my physician said that she’d like to do a few tests first. Then we discovered the PA!
I think the two must be related. Like you, I haven’t had my levels tested recently, but I’m supplementing (or, more accurately maybe, I know I need to start remembering to take some iron pills sometimes…)
I also think that the two must be related. When I told the GP who diagnosed me that I thought I might have an absorption problem, she gave me a look like I'm crazy and said it must be from my periods.
Hi! Not sure my story is helpful, but I started my whole health issues by being told I was severely anaemic with GP test saying I was only 5 (should be 35). I took tablets, got up so I was normal on their tests, but had such bad fatigue. I then had a journey of about 6 years - with GP just saying I had chronic fatigue syndrome and just live with it. Last year I was so bad with pins and needles, loss of coordination and speech, depression, and pain that I took B12 injections myself. It made such a difference and with a couple of other things like being gluten and dairy free I am now recovered. I think that my b12 deficiency was showing up the low iron, and the iron tablets masked it for a while. But as no GP has supported me or helped me that is through my own research. Good luck with your health.
Scientist, not medic, remembering my lecture notes from very many years ago!
Iron metabolism was summed up in a one word acronym: NATURE.
Nutrition: Iron dietary input. Is the patient getting enough? Normal daily diet isn't exactly over-burdened with iron; vegetarians are at a higher risk of iron deficiency.
Absorption: Are you able to absorb it? Post surgery, that isn't always the case.
Transport: Is there an efficient transport process? The body is good at recycling iron from effete red cells.
Utilisation: Is the iron in the diet being utilised or is something else interfering?
Reproduction: In pregnancy and lactation the iron requirements increase.
Exsanguination: For every 1ml of red cells lost, 1mg of iron is lost. You do not need to lose much blood regularly to be tipped into negative iron balance.
It boils down to Iron Deficiency Anaemia being a symptom of something else, and when a GP suggests 'it could be periods' then it often is, but certainly not always.
When there are multiple deficiencies of B12 and/or folate, and iron, then it's rather more complex to work out what's going on. Monitoring the Hb, MCV or MCH, and RDW are helpful indicators but they require a skilled clinician's input. Iron replacement products need careful use and medical supervision, because too much is generally worse than not enough.
I’m not sure if they have this in your area, but I go on line and order my own B12 and ferritin test. You pay online and take your printed test to your local lab. Then they send The results back to the webpage where you can download your test results. If anything is out of range then I take that with me to my doctor.
There's loads of companies online now that are *relatively* cheap and you can get ferritin tested yourself.
I've tried a bunch and Thriva or Forth With Life are the ones I use now.
I got messed around years ago when I first got diagnosed with IDA too. My ferritin was below 0.5, put on 65mg x3 a day for 3-4 months. Tested again while on them, then a 6 month follow up test.
He never checked ferritin beyond that first test.
I had no idea as I never had the insight to ask for a copy of the results, just took him at his word things were better and then OK at the 6 month.
All he went off of was the full blood count / haemoglobin.
Cut to a year later and my ferritin is at 3.5.
I'm convinced if ferritin had been part of the testing while on the supplements and at the 6 month follow up it never would have slipped back to 3.5.
So glad these companies exist now, I'm getting my iron levels checked every month while I monitor being on a supplement and it's settled my own thinking about it so much.
I would if I could, but money is very short at the moment. It's frustrating because ideally I would definitely do this, as well as get a full thyroid panel done (my mum has hypothyroidism) but unfortunately I'm worrying about paying the bills/food/rent etc. Was ok until partner stopped working to go back to uni... we're on UC, so about to lose £80 a month, plus the energy price rises etc etc. My recurring gastritis has flared up with the stress.
Anyway. Do you mean 5 and 35 instead of 0.5 and 3.5? I don't know where you are but here the range for ferritin is in whole numbers, for a woman my age it's 15-200 I think. Mine was 3.
Not really sure what to do exactly regarding dosage. I've cut down to 40mg a day from 60mg. I could try phoning the GP again and asking for a different doctor. Or wait until February when I see my consultant (unrelated condition) who's really good at testing stuff for me (she runs the lab! 😀)
Not been having a good experience with GPs in general, which is much worse because my surgery is doing almost everything over the phone. I'm getting kinda desperate to actually see one in person. My son has been very obviously misdiagnosed with the wrong skin condition for example, based on a photograph, not an examination. And they only seem interested in finding out if you have a serious life-threatening condition, otherwise you basically get left to get on with it.
I'm in the UK, so I know exactly what you mean with UC. I'm on the same boat. The last I saw in Parliament a few days ago they were still debating it so its not 100% going ahead yet... small chance.
Yeah you read my ferritin levels right. 0.5 and 3.5. Each ferritin test I've had done has given a decimal result. It can be weird from lab to lab though and it's different. Even at our surgery 5 years ago the lower reference range was 15 and now its 30. No idea why it changed.
I'm sorry about your bad time with the GPS. I'd love to know what they really believe they're doing in their job sometimes, because patient wellbeing doesn't seem to be what they're aiming at.
Honestly I think they're so overwhelmed with the workload especially right now, but focused on getting through that and ticking all the boxes they've been told to. I don't feel they see or listen to the whole patient any more. I don't know if they even can.
That's weird about your ferritin test. What's the goal? 50?
I don't think the UC uplift thing will be retained, they've totally dug their heels in and look what happened with the bedroom tax, two child limit, etc. But that's another topic!
That second article is fascinating.... I have seen a cut off of 30 suggested before, and it really makes me wonder what they think they're doing when mine was 11 (no action because not anaemic) and then 3 (action because anaemic). But like FlipperTD says above, you really don't want to mess about with iron supplementation without medical supervision (if taking higher doses). I do wonder how many of my symptoms have been caused by iron deficiency and how many by B12D.
The loose way I understand it is that haemoglobin is the last thing to go with an iron deficiency. Your ferritin could be 150, normal haemoglobin.
Then ferritin 100, normal haemoglobin.
Ferritin 50, normal haemoglobin.
And your ferritin can keep dropping without it affecting haemoglobin until it's dangerously low.
That's what's so frustrating about ferritin being a 'luxury' test, it's a good indicator to prevent a bad thing happening. If ferritin was monitored (and acted on) you could catch an iron depletion in time before it had a chance to make you ill.
I've been so lucky with a new gp I'm speaking to now. My last ferritin result was 27 and she's given me a prescription for 65mg twice a day to build up the stores so there's a bit of a safety net, rather than just letting my iron hover about on the edge.
This link is to the British National Formulary (BNF) info on ferrous fumarate, which is one of the iron supplements that doctors in the UK can prescribe.
Note that the dose for ferrous fumarate 210mg for therapeutic purposes i.e. with the intent to raise iron rather than just maintain it is (for adults) 1 tablet 2 - 3 times a day. Each tablet of ferrous fumarate 210mg contains 69mg of pure iron, so the maximum dose of 3 per day would supply a total of 207mg of pure iron. However, if you took that dose for very long you would have to get tested regularly (e.g. every 6 - 8 weeks depending on how well you absorbed the iron) to make sure that you didn't exceed healthy levels because iron is poisonous in overdose.
Iron-deficiency anaemia (therapeutic)
By mouth using tablets
For Child 12–17 years
210 mg 2–3 times a day.
For Adult
210 mg 2–3 times a day.
If your doctor won't test you you can get a finger-prick blood test done privately, no doctor required :
Note that absorption of iron varies enormously from person to person. Some people raise their levels within 4 - 6 months. Some take a lot longer or can't absorb iron at all. A few years ago my levels of serum iron were below range and my level of ferritin was right at the bottom of the range. I don't absorb iron well, and it took me 21 months to raise my ferritin to mid-range. My serum iron was in range but still quite low in range.
A Full Blood Count can give you useful information about anaemia.
As I said in my previous post, haemoglobin will tell you whether you are anaemic or not.
But the Mean Cell Volume (MCV) can be helpful too. It tells you the average size of your red blood cells.
If MCV is very high in range or over the range it is likely that Vitamin B12 and/or folate are low.
If MCV is very low in range or below range it is likely that iron and/or ferritin are low.
If B12 and/or folate AND iron and/or ferritin are low then MCV could be anywhere and can't be relied on to tell you anything much about B12/folate and iron/ferritin.
In those cases the sensible thing to do is to measure Active B12, Folate, Serum Iron, and Ferritin directly. And for iron/ferritin an iron panel is the best and most reliable test to get. It is possible for iron to be low while ferritin is high, or vice versa. So measuring just ferritin, as many doctors do, isn't terribly reliable. Different combinations of low/high in an iron panel can tell you various different things about your health.
Thank you! I wasn't able to tolerate the ferrous fumarate at all so I take the gentle iron. My haemoglobin is normal now with only taking that, but no idea how much iron I've got stored. I'm intending to get it tested privately. Infuriating that we have to do this!
There is another (weaker) iron supplement that doctors can prescribe - ferrous gluconate 300mg. Each pill of the kind the NHS prescribes contains about 35mg iron per tablet. Taking one of those 2 - 3 times a day might be something you could tolerate. I've no idea what it is like - I've never tried it. I manage well enough with ferrous fumarate.
That last link is likely to be similar to what the NHS prescribes, although the brand may be different.
I don't know if you know this but you don't need a prescription to get prescription-strength iron pills in the UK. If you know what you want you can buy it in any pharmacy as long as the pharmacist agrees. If a pharmacist ever refuses to sell iron supplements to you just go to a different chain or an independent pharmacy and ask again. I got refused once (by Boots) but just went to another pharmacy and got what I wanted there.
Thanks for sharing that it took 21 months to get your ferritin to mid-range. I've been on tablets for 3 months so far and I don't think it's made too much of a difference. Still waiting on test results to confirm what's happened.
Do you mind going into detail what went on with your levels at the start and throughout, and what about supplements for those 21 months? Were you on one consistently all that time or on and off?
I know everyone's different but it would help me, and others I imagine, have some insight on what can happen.
I developed severe iron deficiency because of an internal bleed which took a long time to be found and fixed. The NHS kept on measuring ferritin (iron stores) and nothing else iron-related, but ferritin can look artificially good if there is a lot of inflammation in the body for reasons discussed in these links :
In the meantime, my serum iron was below range the only time it was measured during the time I was having this bleed. The serum iron test was never repeated (at least by the NHS), despite the below range result when it was first done.
I was eventually given a prescription for ferrous fumarate 210mg (FF210), one to be taken three times a day, and, quite by accident, thanks to a passing comment made by the pharmacist, I discovered that I could buy prescription-strength iron supplements without a prescription. I've been buying my own supplements ever since (i.e. for about 7/8 years now). I couldn't tolerate the iron supplements on an empty stomach so I took them with food which I knew would reduce absorption but I had to get iron into me somehow. And I took vitamin C as well because it is supposed to help absorption.
One thing that might be a genetic problem is that my TIBC - Total Iron Binding Capacity - was below range even though I was desperately short of iron. TIBC is only supposed to be low if there is too much iron in the blood. It turns out that in my case it becomes closer to "normal" when my iron levels improved.
As well as being able to buy my own iron supplements I discovered I could pay for my own iron panels from Medichecks, using a finger-prick blood sample. I got my first one done when I had already been on iron supplements for about 5 or 6 months. These two things - being able to buy my own prescription-strength iron supplements and being able to do iron panels without involving a doctor were what I needed to know in order to actually make a difference to my iron. I did a lot of reading about iron and related measures and slowly became more confident that I understood what I was aiming for. I'm very conservative in the results I aim for because I have no training other than the reading I've done and I worry about getting it wrong.
I also monitored myself frequently after I finally got my ferritin up to mid-range and changed my dose up and down as necessary to maintain it there. I discovered after a lot of trial and error that I can keep my ferritin within sight of mid-range but in doing so most of the other iron-related results I have tend to be lower than optimal (or higher if that is what happens when iron is low). I eventually found that I could maintain my iron/ferritin etc at a reasonably good level on 1 x FF210 tablet taken four or five times a week.
Do you mind going into detail what went on with your levels at the start and throughout, and what about supplements for those 21 months? Were you on one consistently all that time or on and off?
While I was actively trying to raise my iron/ferritin I stayed on FF210 all the time at maximum dose, apart from when I planned a test. I always stop taking iron supplements altogether for a week before each iron panel.
The NHS used to recommend this, or something like it (5 days off iron supplements?). The American Haemochromatosis Society used to recommend 5 days too, although I've never found that recommendation again since.
Nowadays I think the NHS only suggest giving up iron supplements for 24 hours or taking the test while fasting, or something like that. But there are also sources that say to fast for X hours, and X varies according to the source you read.
Having started testing in one way (I give up all supplements for a week except ones I consider essential for my good health) I stick to doing it the same way every time just so I am always comparing like with like from one test to the next.
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