Low iron/anaemic - do these results warrent me requesting alternative treatment such as an infusion?

[Ladylalaboo1]

Hi all, I wonder if I could get some advice really. I have suffered with low iron all of my adult life, and it gets worse when I'm pregnant (3dcs) I had my 3rd baby in September and my levels were still low so continued on iron tablets. I was retested in November and my levels were lower still ferritin 3 and hemoglobin 105 and I continued with the 3 iron tabs a day, plus my own vitamins and dietary changes. More iron rich foods, lots of orange juice, no alcohol or caffeine etc. I have continued with the tablets and the past two weeks I have felt the worst I have. Exhaustion beyond belief, I have done the newborn stage 3 times, and this exhaustion is more debilitating. I am achey all over, pale, dizzy and shortness of breath. Fast heart rate and palpatations. My hair is falling out, my skin dry, I'm freezing all the time and I eat about 1bag of ice a day, have done since pregnancy.

I'm just basically looking to see if these results below warrant me requesting an infusion? If that's something that can be done? Or if there is another option available other then tablets as they don't seem to be working.

I am speaking to gp tomorrow about the results but would just like to know if I have an argument to request alternative treatment.

It's worth noting that my levels were so low during my pregnancy that I was consistently taking tablets 3 times a day and was told to have a blood test when in labour to see if I was still low. I did that however baby came before the results. Which meant I had her on the normal birthing centre instead of the delivery suite which resulted in me having alot of blood loss, severe shaking and nearly passing out!

Any advice or others experience will be welcome! I'm 31 and I cannot do even the normal things atm such as go outside on walks with my baby or do the school run. It's really getting me down 😢

Serum ferritin
Result
5 ug/L

Haemoglobin estimation
Result
105 g/L

Haematocrit
Result
0.34

Mean corpusc. haemoglobin(MCH)
Result
23.8 pg

Mean corpusc. Hb. conc. (MCHC)
Result
306 g/L

Red blood cell distribut width
Result
15.3

Not sure if that makes sense to anybody but those were the results that came in! Thyroid is normal.

Thankyou xxxx

Not got any advice to offer OP sorry but watching with interest.
(my bloods are low but not as detailed as yours but some symptoms the same so sending you sympathetic, un-MNetty (((hug)))

@52andblue Thankyou very much its so hard isn't it! And I was able to join patient access which is nation wide you have to check if your gp is registered but if they are your results all get loaded into there in detail which really helped me to see how low I've been for so long, worth doing so you have all the information as I didn't realise how low it was in November! Good luck ♥️

@Ladylalaboo1 - oh, that's useful info thanks!
I am in Scotland so don't know if it applies but useful for many folks.
Yes it can be very low but in the UK the 'cut off' point for treatment is much lower than in other countries.
My dd just had her ferritin come back at 16 - she is missing school, dizzy, pale etc. GP has now prescribed iron tablets but to start with it was just 'do you give her packet cereal, that is fortified you know'.
I do think that women's health is taken less seriously than men's and that 'just vitamins' is an issue. I have had gut problems so my iron and ferritin and B12 and D nosedived. So did I - literally, fainting at stations, falling asleep at work, unable to think straight (I lost my job).
It is very hard to function adequately, yet alone well, with these sort of symptoms x

It would be worth pushing for investigation as to why they are so low, likely there is an absorption problem that needs treating to get you better.

@Firststariseetonight

It would be worth pushing for investigation as to why they are so low, likely there is an absorption problem that needs treating to get you better.

Definitely this. There is no possible way that the tablets "aren't working" - it is literally impossible. So that indicates that something else is awry, and the iron isn't being absorbed properly, or that there is blood loss that hasn't been identified. Your doctor should have run a battery of tests already if this has been a long established issue. I would expect to see lowering iron levels during pregnancy, but not to this degree, and certainly not something you are living with all the time.

[quote 52andblue]@Ladylalaboo1 - oh, that's useful info thanks!
I am in Scotland so don't know if it applies but useful for many folks.
Yes it can be very low but in the UK the 'cut off' point for treatment is much lower than in other countries.
My dd just had her ferritin come back at 16 - she is missing school, dizzy, pale etc. GP has now prescribed iron tablets but to start with it was just 'do you give her packet cereal, that is fortified you know'.
I do think that women's health is taken less seriously than men's and that 'just vitamins' is an issue. I have had gut problems so my iron and ferritin and B12 and D nosedived. So did I - literally, fainting at stations, falling asleep at work, unable to think straight (I lost my job).
It is very hard to function adequately, yet alone well, with these sort of symptoms x[/quote]
Yes completely, it's so debilitating, I have to get my mum round to help clean and just do the normal stuff I should be fine to do! Hopefully you feel better soon ❤️

No real advice for you. At 21 my ferratin dropped to 2.5 - my GP was quite amazed I was walking around (with the occasional spell where i collapsed losing my sight and hearing for a few minutes but never losing consciousness).

I was only ever given iron tablets that's it.

@firststariseetonight @moondust yes I completely agree, there's obviously an underlying issue causing the lack of absorption. I have had thyroid checks and in the past b12 checks, but from my records since as far back as early 2014 my full blood count blood tests have always flagged up as 'abnormal' and I've always been told the same thing. Take tablets, better diet etc. Im a vegetarian have been since birth so have been told that could be a factor, my periods are another that have been spoken about and since 2014 I've had 3 pregnancies so alot of the blood tests have been around those so I guess the low iron doesn't flag up as as much of an issue as like you have said being pregnant you would expect it to be slightly Lower. I have pushed for them to try and look further but I haven't got very far with any kind of investigation so to speak.

I'm thinking I could request a b12 test just to see if that's low as I know regardless how much iron you are taking if that's low you won't absorb it! Just draining and feel like a broken record telling my partner I'm so tired all the time 😴 x

B

Have you been tested for coeliacs? A family member had very low iron and b12 levels for years and after lots of investigation was found to have coeliacs disease.

Also on the B12 front, whatever the UK consider to be normal (I think its above 180 or something like that) you can have symptoms of deficiency up to about 500 - other countries consider that to be the normal level.

I don't have a clear enough head right now to interpret those figures, but long time anaemia screams B12 deficiency.

NHS Tests for B12 are recognised as unreliable up to 50% of tge time, so they should be going on symptoms. Unfortunately most doctors don't know this. We had to fight tooth & nail for my daughters B12 injections despite PA rife in our family. Worth it though when the injections got her out of a wheelchair in under 2 weeks.

This website explains it all & hs all the factual information & help in one place. The linked support group were a godsend to us when fighting fir treatment...

www.b12deficiency.info/

OP if I were you I would ask for an infusion. You clearly have a problem with iron absorption and/or GI blood loss. Even if you didn’t have a chronic problem it would take a long time to get your iron levels up to a level where you feel well. You currently have absolute iron deficiency (ferritin below 30) and iron deficiency anaemia. Take a look at the Iron Clinic which has some useful information. Basically everything I have read indicates that ferritin should be at least 70 and ideally over 100 for good health. Don’t let your GP tell you that you’re not “that low”. You really are. The NHS minimum level for Ferritin is 11 (woefully low) and you’re even lower than their standard range.

I would also push your GP for a referral to the gastric team to investigate why you are either losing blood or cannot absorb dietary iron. Basically an endoscopy both ends is needed! They can take biopsies to diagnose coeliac disease and HPylori infections, both of which can cause iron deficiency.
I know it’s difficult to be firm when you feel so unwell. But please push for the tests you need for long term good health.

I'm post treatment and I am currently
Haemoglobin 85 g/L

I was at 72 for a while but no transfusion as the body was building slowly itself. It may be worth getting monitored

Thankyou for your advice everyone, I've got a call with my gp today so will ask her how I go about figuring out what's causing this? And also a b12 blood test and see what the options are for an infusion! Will let you know what they say! Good luck everyone else who is feeling this way and hope you and your family members who suffer are doing OK xxx

Hi all. Unfortunately had a different gp on the call today who asked me why I thought my iron was low, and when I explained how exhausted I was especially with 3 children one being just a baby he asked me if there were any other reasons I could be fatigued. Told me I was borderline low in iron and not anaemic and that as I had my b12 blood test done when I was pregnant ( last may) I wouldn't qualify for another test for another year as they are only done every 2 years?! He also advised me to take orange with the tablets and recommended that I LOWER the dose as that's whats making me so constipated and upset stomach so it would be easier on my tummy. Completely disregarded my symptoms I felt and said maybe it's just my body?

Infuriated isn't the word and I hung up with the advice to keep taking the tablets and come back for a blood test in 8 weeks. Draining.

So now my grandad who has private health care has been in touch with his doctor and sent over my test results to see if he agrees, he's said I'm severely anaemic and low in iron and would recommend an infusion and then further investigation as to why I'm Not absorbing the iron. He's giving me a letter to give to my doctors with this so see what they say.

Exhausting really and this was the doctor that dealt with me in November aswell so he is aware its an ongoing issue, not something that's just come about.

Thankyou for all your kind words though everyone, hoping another doctor at my gp can help me more!

I'm sorry to hear the GP was so unhelpful. There is however a reason why your levels are so low which should be investigated. On the B12 front you could take massive amounts yourself - it's not possible to take too much, you pass any excess in urine but there's obviously a reason why the injections exist as it takes time to increase levels, particularly orally. Ultimately if you aren't absorbing you could have huge amounts and it will do nothing. Is it possible to consider private testing?

Shocked at your GP. I've had iron infusions with stats better than yours.

Dreadful handling by the GP, just shocking. How condescending too, asking why you think you're low in iron, your levels are insanely low! I would pursue the private route if you're able to, and get yourself an iron infusion ASAP.

I was told by a theatre nurse that a ferritin level lower than 5 would require an operating theatre to have blood on standby before attempting an operation. At 5 I was on 3 ferrous sulphate tablets a day.
I'm not sure what your circulating Hb level is. Mine can be fine even when my ferritin is well below normal. Some GPs only look at the circulating value.

Ferretin can be low for several reasons but boils down to lack of intake, lack of absorption or loss.
Sounds like intake is good so possibly lack of absorption or the fact that pregnancy and breast feeding are a big drain on iron stores.
If B12 also low then lack or absorption an issue.
Worth checking pariétal cell antibodies etc in case PA if B12 has always been low.
Also MCV more helpful the results you have posted re FBC although if iron deficient and B12 deficient will probably be normal.

Have you had your vitamin D level checked? A lot of your symptoms I've had and I have just been diagnosed as deficient. (the coldness and the hair loss are things I've really noticed along with the abnormal fatigue.)

And what about trying spatone instead of iron tablets? Much gentler on your tummy, but expensive.

Awful OP my ferritin was 7 at lowest and I felt like death. Can you eat red meat? Liver? X

Hi all, thanks for your replies bad a bit of a crappy time however I've seen a specialist at a private hospital who after a blood test has diagnosed me with silent coeliacs. Explains alot, as it's silent you don't get the usual intestinal issues and because of that and it going undetected causes Anaemia, tiredness, depression etc. Also causes issues with your joints and I've in the past been to the docs with suspected rheumatoid arthritis due to swollen and painful hand joints. Nothing was done with that, however the blood test I had showed inflammation so it would indicate I've had this since atleast 2014 which is when I've had anemia on and off since also.

I'm just glad now tbh I have a diagnoses as I thought I was going mad!

Now I have to introducd a totally gluten free diet which will be fine eventually, hard I think at first as I love bread and pasta who doesn't but hopefully will be able to adjust! I'm also getting an iron infusion so I'm hoping I'll start feeling normal soon.

Thankyou all for your help, it's so true we know our own bodies so much and I think, especially as women, we aren't listened too as much alot of the time when we complain about our health and I wish doctors would just trust us and trust we know our bodies!

Good luck everybody else who is on a similar journey, and thankyou again for all your advice, made me realise I wasn't going insane and just imagining everything! ♥️

I'm glad you have your diagnosis and hope you feel better soon.

Your GP wasn't entirely unreasonable though about reducing your oral intake, though. There is new(ish) research regarding a hormone called hepcidin. If your body detects high levels of iron in the stool, hepcidin is released which tells your body not to absorb anymore iron as it thinks you have enough and too much iron in the blood is bad. When you have the side effects such as black stool, it means you are passing too much iron in your stool and so hepcidin is released. Emerging advice (which doesn't seem to have been picked up by GPs as yet) is one tablet alternate days; it avoids the side effects such as constipation but also reduced the chance of hepcidin being released and therefore increases the chance of the iron being better absorbed. It takes a long time to have an effect, many months. Unfortunately, one of the other causes of hepcidin being released is inflammation. Vitamin C aids absorption and a compound in tea (tannin) inhibits it.

I hope you feel better soon.