AIBU to ask if there are any anaemia experts out there please? My GP keeps fobbing me off!

[tomovemykids]

Have been anaemic for a couple of years but normally keep it at bay with supplements.

Tried to give blood in January and my haemoglobin concentration level was too low; it needs to be 125 or above to donate blood (I'm usually around 120) and mine was 116.

I eat a healthy balanced diet with fortified Cereal (Weetabix or Bran Flakes mainly), fish, red meat, dark green leafy veg and eggs etc

I gave up alcohol on 1st Jan and haven't touched a drop as know it inhibits iron absorption. I've limited myself to two cups of caffeinated tea a day, no cola or other caffeine, for the same reason (I've never drunk coffee).

I don't have heavy periods, in fact I only have a light one every 3 months as I take my pills back to back.

So I don't have any of the normal reasons to be anaemic. I had a colonoscopy in June 2018 to rule out internal bleeding or Crohns etc. I've been tested negative for Coeliac.

I'm so so tired of being tired all the time I sleep for 8hrs a night, then need 60-90 mins in the afternoon... Then fall asleep on the sofa after dinner for 30 mins. It can't be normal for a 38 year old to be this tired all the time? I'm fatigued some days, can't get out of bed to put my two children to bed in the evening so dh does lots.

I've just had blood test re-done this week (took 4 weeks to see GP and another 2 to get a blood test appt) and the GP had put "No Further Action" despite my serum ferritin level being below range (27 ug/L when range is 30 - 300) and my mean cell haemoglobin is below (26.7 pg). My concentration is still only 118 g/L so I'll be unable to donate blood - something I explained to the GP was important to me.

All this despite me taking either 2 x SpaTone sachets a day and a multivitamin with iron, or Feroglobin. I explained this to my GP that it's still low despite the supplements....

Does anyone have any clues as to WHY I'm still low on iron despite all my endeavours please? Looks like my GP has given up on me

Mine was low super too, but popped up as positive for Coeliacs, I will have to go back in to have it re tested to see if being GF for the last year has helped.
Hope you find some answers.

Your problem might be with your body's actual ability to absorb the iron you're taking, so no matter how much you're taking its not retaining it - so your blood cells can't take up enough oxygen hence you're knackered. Calcium can inhibit uptake but if you're deficient, and have plenty iron in your diet I doubt it's that. It could be a mutation in your blood cells, it could be something wrong with your digestion not taking it in. It's really hard to tell without blood work results. If you're chronically low and knackered might be worth asking to be referred beyond your GP to a specialist e.g. Gastroenterologist or a hematologist.

Equally if you're low in iron you should be on much higher prescribed iron supplements than spatone or general dietary ones - they're not for anaemia. Your body only absorbs a small amount of the iron you ingest.

I'm not an expert on anaemia btw, just a biochemistry degree with a geeky interest in blood 😂!

Have you only had a blood test for coeliac? It's reasonably common i think to get a false negative on the blood test I think.

When i was first tested by blood test only (and i was tested on basis of anaemia) it came back negative, but a couple of years later I was diagnosed as coeliac following a biopsy. I've never been anaemic since following a gluten free diet - was anaemic for about 8 years previous to this despite taking 900mg of ferrous sulphate a da.

Any bowel discomfort at all? You can test negative for coeliac's but still have problems absorbing iron because of gluten intolerance... My friend had similar problems and ended up cutting out gluten anyway. Her iron levels are fine now.

I doubt your fatigue is related to anaemia if it's that mild. Especially if it's arisen slowly (i.e. not via haemorrhage).

You need to leave at least 30 minutes between iron rich food / supplements and caffeine to allow it to absorb

Lots of causes of fatigue: low mood and anxiety are common

Take your supplements with pure OJ, it'll help absorption

Are you taking the spatone with tea, eggs or milk?

Just to give you my haematologist view - that is more then likely to cause exhaustion. The only possible explanation is that you're not absorbing the iron.

Did you also have your b12 checked? If that's well within range, then it's an absorption problem, because you're eating enough meat etc. To have the right level of b12, you should have enough iron.

I know it's frowned on to start cutting your diet without expert advice, but if your doctor won't help, I'd tell them you're going to go gluten free for 6 months and will need a blood test after to see if it's helped.

Good luck, and don't take any rubbish about low mood. There is no point in looking around for other causes until your basic biochemistry is sorted.

I know all about which foods and drinks to avoid when taking iron supplements so never have them with tea (I know it's the tannins that affect absorption as well as the caffeine), dairy or eggs.

Always take my supplements with a small glass of orange or apple juice and a vitamin C supplement to help absorption.

I've been under a Gastroenterologist before due to my gastro issues (forgot to mention those sorry! I have trouble with bloating, cramps and vile wind), anaemia and stool sample coming back "borderline". After the colonoscopy he just put it all down to mild IBS and told me to keep a food diary and to think about a low FODMAP diet. My symptoms are unpredictable and I hate the thought of cutting out entire food groups without a test confirming I need to tbh, so I've not done it.

@BennyVegas my previous GP put me on 3 x 210mg ferrous fumerate tablets a day for 3 months last time I had blood tests and was anaemic. He then did a follow up test after the 3 months and declared I was no longer anaemic and signed me off... Well of course I wasn't after taking such high doses of iron! They made me constipated and had horrible black sticky stools when I could go, hence trying the ones that are gentler on the stomach. I know they're not as strong but was hoping they'd do the trick. Seems not.

So I'm actually now thinking it may be a gluten intolerance? My last GP appt end of Feb the Doctor said he'd either refer me to Gastro or hematology depending on results, so you can imagine my frustration when calling to get them this afternoon to be told he'd signed it off as NFA.

He might think the results are only slightly low but I told him I'm permanently exhausted and it's affecting me and my family but still nada.

@Feetupteashot A few friends suggested last year that me sleeping a lot is a sign of depression, so this year I've been seeing a private counsellor. I've had 10 x sessions @ £45 each and it's not made a bit of difference. I can get moody but that's because I'm so bloody tired all the time! I'm not an anxious sort of person generally.

Thanks for all your comments so far

@lborgia thank you! I did have my B12 checked. Last April it was 154 and my old GP said it was borderline so NFA (I've done research this week which suggests I could have benefitted from a short course of B12 injections to see if they helped my tiredness). This week the level came back as 219 so it has gone up. I was suspecting pernicious anaemia but seems not.

My last GP back in 2018 put me on bloody Prozac/Fluoxetine as I said I was struggling with low mood, triggered by fatigue. I said to him I wanted to rule out any medical or physiological problems before resorting to antidepressants as I didn't think I needed them/never had them before. I tried them for about 5 months before realising the side effects outweighed the benefits, and hated the way they numbed me.

I'm a healthy BMI, never smoked, haven't ever been a heavy drinker and have been tee-total so far this year. I walk lots and try to go to pilates once a week when I have the energy. My kids are 6 and 9 now so not babies/toddlers any more and are brilliant. I only work 15 hours a week (Would like to increase it at some point but not without sorting my energy levels out first).

Not on any medication.

On paper I should be feeling OK?! I know all my friends say they're tired but I swear I can't keep my eyes open most afternoons and fall asleep as soon as my head hits the pillow at 3.45pm! (I have an hours nap after school run/work and before dinner).

I’m surprised that you say your GP has “fobbed you off” despite what looks like thorough investigation. I’m not sure what else you want them to do?

Without giving a lesson on statistics, some patients will always be outside of the “normal” range of blood tests but it’s normal for them and there’s not much that can be done about it so these are usually marked as no further action being needed.

@PlonkyPlink maybe fobbed off was the wrong wording. But I've been struggling with this for over 2 years now, maybe longer but my GP always said its normal for me to be knackered all the time and need daily afternoon naps on top of 8hrs + sleep a night as I'm a Mum?!

I meant the GP I saw 3 weeks ago said he'd help me get to the bottom of why I'm anaemic, so that I can try and treat it. But he's taken one look at my blood test results and told Reception to tell me "No Further Action needed".

I'm still anaemic and still exhausted all the time?!

And I'd be totally fine with being just outside the "normal" range if I felt normal, but I don't. I get dizzy spells and had a headache for the whole of January and am sleeping half my life away, not to mention the IBS.

I just can't believe he couldn't sign post me anywhere at the least...

Your levels don't sound low enough for the GP to be concerned. I've been borderline anaemic my whole life and I'm always told to just eat more steak. Sometimes it's just the way your body works.

Have you gone to your pharmacy and gotten iron tablets? My sister just found out that the 200mg ones she was taking (not sure if that's the right measurements) are available without a prescription and are actually cheaper that way.

Wait just read your post properly and saw you were already taking them.

I don't think there's much your GP can do anymore. If the bloods are coming back ok, I'm not sure what they can do.

Low ferritin levels can make you feel fatigued even though you're not technically anaemic, you basically don't have any iron stores.

I know you say giving blood is important to you but would you consider stopping?

Try Bisglycinate iron, it's more expensive but much better than the stuff the doctor gives you.

Spa tone isn’t the best. Try active iron instead. It is very gentle and super absorbent. Couple this up with a high strength B complex. Have you any other symptoms? Numbness or pins n needles in limbs? Have you ever had low blood pressure or glandular fever? It does sound like an absorption issue,

Have you has your thyroid tested? My experience (have been anaemic several times over past few years) is that that level of tiredness actually comes from thyroid issues and not anaemia. Just a thought

I've had sever anaemia on a couple of occasions over the last twenty years or so - but due to heavy bleeding, so can't help with potential cause.
However I get awful side effects with ferrous fumerate - there's a variety of alternatives that your GP can prescribe that will have better results than over the counter stuff.
I think I had Extended-release ferrous sulfate in the end,
Look at nice guidelines to see what they suggest as alternatives; I always find that useful when I need to challenge GP/Consultants if I'm not happy with the treatment I'm getting - they're mostly in really easily understandable language, nothing to technical.

I can understand the antidepressant stuff, although frustrating. The second time I was anaemic, I did go to the GP because I thought I was depressed, couldn't concentrate, remember anything, completely disinterested in anything going on.....

Good luck with getting back to good health.

@DonnaDarko my results are coming back BELOW normal range despite taking lots of iron supplements and eating steak/bags of spinach etc and doing everything right. So I am still anaemic and struggling so that's why I'm frustrated at the GP for just giving up on me without even a discussion. I thought he'd want to see me to talk about the results and next steps I can take.

@OverAtTheFrankensteinsPlace sadly I don't think I'll have any choice re: giving up donating blood They have a three strikes and you're out rule. I'm currently on a three month suspension til I try and get my iron up, but even with my best efforts it's not looking good enough.

@gumbalina01 thanks. I don't get numbness or pins and needles (I know they're attributes of low B12) but I can't do downward facing dog in yoga! I get really dizzy, think it might be low blood pressure? I also get headaches quite frequently and nausea most mornings for a short spell.

Never had glandular fever but have had bacterial meningitis 6 years ago that I was lucky to survive. One of the main long-term side effects of that is fatigue, so thought the counselling might help but it's not yet.

@user1493986150 yes thyroid tested last April and all OK.

@Fr0g thank you so much! That's interesting that you thought you had depression before but it was anaemia. Thanks for the recommendations of other iron tablets to take - I wish the Dr had given me a call to suggest those rather than "NFA". I'll look up the NICE guidelines now thanks for the well wishes, and hope you stay anaemia free forever now (how long did you take the iron tablets for?).

Vit D deficiency, if severe, can have similar symptoms to anemia. So can thyroid issues.

Have you tried a lucky iron fish? It sounds like every bit of additional iron could help.

When you were on the higher dose iron tablets before did the problem go away i.e. did you feel better? Maybe it could be worth coupling them with something like Movicol so you could benefit from them but reduce the constipation. If a three month course provided results then maybe it's worth trying? It doesn't sound like the amount of iron you're taking right now is enough for your body to get to a more optimal amount.

OP it sounds like prescription strength tablets are what you need and possibly for longer than 3 months to actually replenish your iron stores. Each spatone sachet has 5mg elemental iron compared to the 68mg in a ferrous fumarate 210mg tablet. For treatment of anaemia 100-200mg elemental iron daily is recommended. I think spatone is more for those with normal levels who want a bit of a boost.

If you struggle with the side effects you can try reducing the dose of iron tablets or try an iron liquid such as sodium feredetate.

I say prescription strength but you can buy some of them over the counter like ferrous sulphate.