Extremely low ferritin, no transfusion accepted. What else can I do?

I was the same, haemoglobin OK but serum ferrin low, 15 in March and am now 85 from test last week - very surprised.

They gave me Sodifer on prescription but you can buy it. I took it on an empty stomach in the morning with a little orange juice and didn't eat for the next hour.

I'll admit I don't feel any better, but good to know it's worked.

I feel your pain OP. When first tested my levels were 12 and after taking supplements for a year they've only gone up to 14. I am exhausted, I regularly get excess hair shedding and I do feel like bouts anxiety I suffer may be driven by this. Apparently women who suffer from PMDD are often suffering low ferritin which causes the body to go into a sort of shock just before/as they menstruate, causing extreme anxiety and depression. I don't know what to suggest but just engaged to say I'm in the same boat.

Actually from memory it was not immediately after the infusion I felt better but definitely within a couple of weeks. I was getting constant vertigo whenever I walked anywhere or got up quickly or moved my head sharply. There was also the hair loss, nails etc but they took a lot longer to recover as you’d expect. There were lots of other symptoms too (restless legs) but the vertigo was the worst! It’s like coming off a roundabout and very disorienting. This definitely stopped within a week of the infusion

Galfor made me ill and Spatone was useless. Would highly recommend Ferrograd C.

Mine is at 2 and as I am allergic to iv iron, they won't do anything to help me

Just get an iron infusion. It takes 30 minutes and is painless. Very few people react to it.But if you can get a referral to a private clinic from your GP - they should at least be able to do that, then you can request annual bloods to check your levels. That’s what I did and my levels have stayed over 100 at least 4 years on! It was down to 11 previously. If the levels keep dropping after infusions, it could be a sign of something serious like an autoimmune disease or bowel cancer.

I had to put it on a credit card (long paid off now) and I’d do that again in a heartbeat. Ok, some people really can’t pay but many of us can… you won’t get it on the NHS because tablets are available (they just take ages to work and give many people chronic constipation!). You can also buy tablets yourself. So this is why the NHS has high thresholds for infusions.

If you had to pay for root canal surgery, you wouldn’t think twice. If you’re going on holiday, but refusing to pay for an essential iron infusion I think it’s worth reconsidering your priorities. You will feel immediately better and soon symptom free!

I’m currently taking 630 mg per day and I don’t feel any benefit for it yet, I started with 210 g a day, then 420 mg and when that didn’t lift my numbers, I’m told to do 630 mg I get a really bad upset tummy from it and I have the shits all the time, but I’m going to stick at it. I dont have much choice really. 🤷🏻‍♀️

Mine was 11 when last tested a couple of months ago. The GP says that’s fine as normal range (at least on the NHS app) is 11 - 310!
Normal haemoglobin here too (as well as thing crappy hair, exhaustion, breathlessness etc). It sucks!

IMO this is another serious example of medical misogyny. It is mostly women who suffer from low ferritin. The NHS has made a policy decision here in order to save money. I don’t believe this is a decision made on clinical grounds.

I’ve had two iron infusions in my life - within a week of each I was a different person. No side effects at all.

My DD has lost her hair, I feel dreadful
as it was so bad before I realised.

Spa Tone iron water. It’s more bio available

Mine has never made it over 16...which was apparently fine. I've been on iron tablets for 3 years. Lowest I've been is 6, highest 16. Basically I need to persevere another few years, take tranexamic acid to limit my menstrual bleeding, and that's that! I have all the symptoms, have tried all the antidepressants they offered etc. They just aren't that bothered.

Wow that's horrific isn't it the poor girl lost her hair.

What's wrong with the NHS on this issue ??

My levels dropped to 13 at the start of the year, after not going above 20 odd for almost 10 years. I was beyond supplements and an NHS Gp said "An infusion will make you feel better straight away, but we can't do it for you on the nhs" This was as like you my hemoglobin was normal. I had to pay privately for two consultations and an infusion...cost nearly £1700. Managed to get a little back from a work scheme, rest went on credit card. I feel physically better, it had got to the stage where I had debilitating pins and needles and skin crawling/itching, but the tiredness is still there, even though my levels are over 200 now!! I would do it again though and my hair/appearance/demeanor has changed enough for people to say I look/seem better. Honestly feel for you, I had years of progressively feeling awful. When I told the pharmacist my levels they basically laughed at me and said I'd never get them up just on diet and supplements alone. Its so unfair! An infusion takes less than an hour and is a simple procedure.

Unfortunately thats the nhs for you. My kidney function was outside the normal range but they decided no action was needed, even though I have various symptoms that imo warranted further investigation. It seems if you need anything more than the bare minimum investigated or treated you need to go private.

This is really strange as I was told a haemoglobin level under 60 was considered incompatible with life and a medical emergency which would automatically qualify for a blood transfusion (in my case 3) on the NHS. Possibly different for children.

Mine has been 6, I got an iron supplement that’s a liquid, the prescription iron tablets did nothing. I got it from 6 to in the 50s

I’ve had very severe anaemia before (my haemoglobin dropped to 48) and I needed blood transfusions and IV iron. Ferritin was 5.
I had no side effects from the IV. I really feel that it should be offered more widely given the many debilitating effects of low iron.

It’s important to find the root cause of low iron. Often for women it’s heavy periods. But it can be a stomach ulcer or issue like being an undiagnosed coeliac. It is hard to build up ferritin level with any of those issues as you are just immediately losing it again.

I found Transexamic acid helpful for heavy periods and had no side effects from it. I was prescribed a high dose by a consultant. I ended up having an endometrial ablation.

You’ve had good advice about supplements. I was advised to take them every other day as this aids absorption. I never managed to build up a significant ferritin level with supplements until sorting the heavy periods though and they also completely mucked up my digestive system.

One of my DD’s had ferritin 2 and haemoglobin 53 and they wouldn’t do anything except oral supplements. Paid for her to see a haematologist who recommended an infusion but no private hospital would do it (she was 14 or 15). She was exhausted and lost most of her hair. Eventually we found a doctor in France who gave her half an infusion dose and that solved it. She had all sort of tests, no coeliac etc The French doctor thought it was most likely long COVID as it can interfere with iron. There is a bit of research on that now. DD still takes the supplements but one infusion was enough for her. We also made sure she took supplements for Vitamin D, B12 etc as what the NHS considers normal is often sub optimal. They never denied her regular blood tests though so we just supplement now. I go to France on holiday and deal with it there if need be. Health care and teeth etc can be awful in England now.

Mine has been 7 on several occasions and I was only given tablets that cause me really bad stomach upsets! It’s really bad. I got mine up but haven’t taken them since as they make me feel so ill.

Wouldn’t you be better leaving out the butter as that has calcium in it?

I recently found out my ferritin is 14, which explains the exhaustion, thinning hair and always being cold. I have been taking iron tablets for a year, too.

My GP also told me he couldn’t refer he for an infusion, and a private one including consultation is around 1k near me. Not doable currently.

GP has prescribed much stronger iron tablets (about 10 x stronger than what I was taking) and told me to take at night, at least 3 hours after eating or any caffeine, with fresh orange juice. I’ve been doing it for a month and I have to admit…I feel a little bit more energetic and I’m not so pale.

I’ll be re-tested at the end of July to see what my levels are, so we’ll see. I also have horrendously heavy periods (perimenopausal) and doc thinks this is almost certainly the cause, so has also offered various things to help which I’m considering - mirena coil, tranexamic acid.

I have ferinject iron infusions. My Hb has been as low as 4 with ferritin <4 (which means zero). Your results are fairly normal. You could probably do with a higher dose supplement or increasing iron in your diet.

It's a myth that iron infusions 'work better' than oral iron if you don't have an absorption problem eg crohns, ileostomy etc. Iron infusions can also cause horrific scarring - I've got a large dirty mark down my forearm which is permanent.

An iron infusion does not increase haemoglobin (or even ferritin) immediately. It will go up over several weeks as it does with oral iron.

You need a proper iron supplement together with vitamin C. Some are only available on prescription. I found Sytron to be the best tolerated & most effective. It's a liquid so dose can be split. I believe it was developed for premature babies with severe anaemia so it is very safe & well tolerated.

Imagine how women in the 3rd world must be.