Absolute Iron Deficiency -fed up! any advice? 😭

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I have a diagnosis of chronic fatigue. and I also have a history of low iron, which according to my GP doesn't cause fatigue if I am not actually anaemic ferritin is currently 9ug/L. I can't get an appointment to discuss with GP because they have 'completely run out' of appointments!

I have started taking ferrous fumarate myself. but I am forever taking courses of ferrous fumerate and I just can't keep my levels up. I had a hysterectomy 7 years ago so I don't bleed any more

I MUST have an absorption issue, no?? I have asked about iron infusions before and GP said it's not necessary/is too risky

I am SOOO fed up. I have no life. social life is dead, have no energy for cleaning/cooking and have reserved all for work because I have to make money for bills. now I don't even have energy for that. I'm so tired, I can't think straight or concentrate. I feel dizzy and so so so low

I will attach a screenshot of my ferritin levels over the years

There's a spray iron supplement that's absorbed through the mouth, rather the gut, might that work for you?

I would say that if you are taking a supplement and not seeing a difference then you may have a gut problem?

My suggestion would be kefir for your gut, add an omega supplement too. I have a very high omega 3/ all of them 😂 and that made a huge difference to my energy levels. I tried iron on its own and it wasn't making a difference

How are you taking the iron ?? They are very hard to absorb.

I had very low ferritin, about your level. Ferrous anything is no good to me. What I do to maximise absorption is:

take a small glass of orange juice to bed -
if I wake in the night I take the OJ and Iron Bisglycinate - so on a totally empty stomach and an hour before eating or drinking anything else.
I then use every other possible means to eat iron - I snack on dried apricots. I use spinach leaves instead of salad. I eat fortified cereals. I don’t eat red meat so I need to be very careful with this regime.

very slowly this has raised my levels.

If you can afford a private iron transfusion then do it.

other than that, keep pursuing the GP (sorry)

Vitamin C increases absorption (I take iron tablets with orange juice) and caffeine reduces it. Annoyingly my iron didn’t shift until I gave up caffeine.

Have a look at Health Unlocked and choose the CFS/ME board. I always had excellent advice on there and they’re great at interpreting blood test results.

oh that sounds worth a try, I will get some, thanks

I will try adding omega as well, thanks. end up taking soooo many supplements which 1) is very expensive and 2) just can't be right, can it

Undiagnosed Coeliac disease?
https://www.coeliac.org.uk/information-and-support/your-gluten-free-hub/home-of-gluten-free-recipes/healthy-eating/iron/?&&type=rfst&set=true#cookie-widget

When my ferritin was low (11 at its lowest) I felt dreadful! White as a white, dark circles, palpitations if I drank alcohol, my hair was falling out in handfuls..some GPs are really funny about low ferritin and will not do anything about it.
Agree with pp that you should avoid caffeine but also any tea within 2 hours of iron tablets, the tannin reduces absorption. I take ferrous sulphate so I only need to take one a day and take it at night. Apparently there’s evidence for taking it alternating days only.
I do agree though, if you’re not having periods, the low ferritin needs investigating. Can you see a different GP?

I have started being really strict now about Jo caffeine and iron on empty stomach/with vit C. I just need my levels up quickly. I'm going to lose my job if I can't get right. plus, I don't even want to be alive, I feel so awful

I have been wondering about this. I'm going to ask the GP, if I ever get to speak with them

Please please push for further investigation - it is simply not acceptable to exist like this. Have you had a full blood panel? B12? Thyroid?

yes I had quite a lot of blood tests this time. I am really suspicious of my thyroid, it hurts constantly and I have a hoarse voice. it was scanned recently and is 'bulky' and nodular. but TSH was low end of normal 🤷🏼‍♀️. all haematology normal

I feel like doctors only do something if you are at risk of death. quality of life does not seem to be a consideration any more

I never see the same GP in our practice, they are mostly locums, so I have had different opinions 😩

I really want an iron infusion. how do you get a private one?

I also came to suggest coeliac disease. My ferritin was low and I was fobbed off for years by different GPs who just kept prescribing iron tablets. We moved house and I went to a new GP who discovered that my ferritin was 4 (!) and immediately suspected coeliac. And lo and behold that's what it was. Years of fatigue, breathlessness, brain fog, thinking I was just clumsy and absent-minded by nature... all disappeared within about 3 weeks of giving up gluten. I didn't have any of the classic digestive symptoms so I guess that's why previous GPs didn't pick up on it.
You need to be eating gluten regularly in order to be tested for coeliac though so don't give it up preemptively!

I have had two iron infusions the nurse has to stay for a few minutes in case of a reaction but that's very rare.

What part of the country are you in? I can post links to South West clinics offering infusions but that's no good to you if you're miles away!

Your GP should be investigating the cause of your definiciency, e.g. FIT test, celiac.

What is your haemoglobin level?

I was diagnosed as coeliac after having low ferritin but borderline iron levels which didn't change with iron supplementation.

Going gluten free made a really big difference quite quickly for me.

The opinion you get from your GP is going to relate a lot to their age/when they qualified.

When I was at med school in the 90s, we were taught ferritin just sat there being a store for iron, and apart from that it wasn't important. Iron infusions were rare due to the product causing a lot of serious reactions. We prescribed iron three times a day because more is better, right?

Now the evidence has changed. We know that having a low ferritin does cause symptoms well before you are actually anaemic. We also know that 1 prescription strength iron tablet alternate days is more effective than 3 tablets every day as that switches off your ability to absorb iron.
And we have a new product for iron infusions which is very safe so they are used a lot more.

With iron deficiency anaemia there are basically 3 questions:
Is enough iron going in - one of the most common causes is poor diet
Are you absorbing the iron that goes in - check for coeliac
Are you losing iron faster than you can put it in - for women this almost always means heavy periods. If you don't fix these it's like trying to fill a bath without putting the plug in.

I am in the SW! 😁 that would be great, thanks

these are my Hb results over the years..a bit on the low end, but usually normal

thanks for this @AnnaMagnani ....I really thought my hysterectomy would solve the low iron because I used to bleed so heavily, I had adenomyosis

I definitely eat enough iron in my diet. but I think GPs assume my diet is poor because I am over weight. and I suspect that is why I just keep getting told to take tablets

i just don't hold much hope that I will be able to persuade them to investigate for coeliac

Firstly when taking iron you mustn't drink tea,coffee,any diary or eggs 2 hours before taking the iron tablet or 2 hours after as it can affect absorption.
The most ideal thing to take tablet with is orange juice as vitamin c helps the body absorb it better

This was it for me.

I use liquid iron and take it every other day in a glass of OJ which has helped a lot.