Ferritin levels

[muppahuppapuppa]

Hi

I had a blood test in November which suggested Ferritin of 31 and haemoglobin of 149. To increase my ferritin I have been taking iron and had a test last week and my ferritin is now 26 ! I have a follow up with GP this week however, last time she suggested my levels are ok.

To support the tablets I have been eating more green vegetables (spinach, kale etc).

The tablets are iron bisglycinate (42mg)

The reason I want to increase the levels are hair thinning.

For info, I am in my fifties and no longer have periods.

Please, does anyone have insight as to how to overcome this? 😊

Visited GP who was keen to say I am not anaemic as HB 140+ it is ferritin which is in the ‘normal’ range.

New prescription coming for additional iron tablets iron gluconate, review in 3 months

No need for iron infusion (apparently I don’t meet the criteria)and would be at risk of anaphylaxis (due to high enough HB)

Tried to argue I want to optimise levels to above 70+ for hair growth

I was told my ferritin has always been low so maybe that is ‘normal’ for me

Got a lecture about us all being different

CianOFountain what is your situation?

Have you got documented evidence that you’ve always been low? An annoying and thoughtless response there. With my high levels, the doctor said “you’ve probably always been high” but no other tests have been done and symptoms have me concerned so they probably haven’t always been high and I want them to do their job and investigate.

My ferritin stores are low so I'm on iron tablets.. Looking forward to feeling human again!

Not sure if it’s a financial option for you but you can pay to have an iron infusion done privately. We did this for my daughter whose hair and eyelashes were falling out (after dr had said her levels were “fine” but the iron/blood specialists we saw on Harley St said differently). Turns out she had not been absorbing iron for years due to Crohns which has subsequently been diagnosed but importantly for her her hair started growing back after the infusion. We will likely do an iron infusion annually for her.

I wish my GP was the same. I had a ferritin level of 10 so the GP prescribed supplements for 3 months. When I was retested my levels were 23 and apparently normal according to the NHS and I was taken off them! They won’t test me again.

Ferrous sulphate from the pharmacy.
Take one every 48hrs as soon as you wake up, with a 1000mcg vitamin C tablet.

Do not eat or drink for two hours.

As you are not bleeding, this should do wonders in 3-6months.

I went from 16 to 118 in 6 months.

Hi OP.

Sorry you had that rubbish experience, it seems to be standard to be dismissed by GPs for this and the impact not acknowledged. But that's women's healthcare for you.

Have you tried doing a search on MN using ferritin as a keyword? Lots of good advice there.

I made the decision to decline invitations to give blood after donating since my teens. That, I am sure, was affecting my ferritin levels as well and the fingerprick they do tests iron, not ferritin.

TBH I felt let down by the blood service for contributing to me feeling as awful as I did and only concentrating on whether I was anaemic. I wouldn't say that counts as full consent.

Plus they couldn't organise themselves out of a paper bag.

But you can buy it over the counter and take it yourself! GP doesn't need to know!

i routinely got my iron up with x2 spatone sachets with vit c included better than prescribed iron tablets. Which wrecked my stomach.

no issues now periods stopped

eating more vegetarian sources of iron helped too bizarrely. I think as I do drink a lot of milky drinks and you can absorb iron from black beans and lentils with dairy.

You must follow the instructions as @EBearhug said.

yes the evidence now is this is the best way. Unfortunately I can’t tolerate any ferrous sulphate even if done like this.

My useless GP told me my ferritin level of 5 was borderline and couldn’t possibly be causing my symptoms. He suggested adding spinach to my diet 🙄

I had an appointment with a haematologist via my private health insurance and she said GPs are woefully poor at treating iron deficiency without anaemia and there is no way changing my diet would improve my levels in any meaningful way.

I had an iron infusion about five weeks ago and feel great for the first time in about 10 years. The haematologist suggested supplementing with iron as well until my ferritin reaches 80-100. I’ve found Three Arrows heme iron really good with no gastric side effects. It’s not vegetarian though.

I have another blood test at my surgery in a couple of weeks time. They aren’t aware of my infusion so it’ll be interesting to see if the GP thinks my improved levels are down to bloody spinach!

I'm glad you had the insurance (and I agree with the haematologist perspective on GPs restarting iron deficiency without anaemia!)

OP, I did also mean to suggest you look up the NICE guidelines, as some came out at the end of 25. IIRC they recommend treatment with a level of 30 or below.

Thanks for this suggestion

I investigated thus but was worried after GP suggested I would be at risk of anaphylaxis 🤷‍♀️

GP prescribed iron and recheck in 3 months

Any reputable clinics people have used?

Mine are so low I need 3x 200mg daily… for those who had private transfusions, would you please tell me where? I don’t want to book a back alley place…

I will look these up 😊

Where was your infusion?

You could say that to anyone here!

I did buy the same high dose supplements, however how do I know when to stop? When my levels might be too high? Though I don’t feel they’ve improved a year after my last test. I was taking them twice a day when prescribed, I wouldn’t feel confident taking them like that when not prescribed.

iheartmysmart

The infusion sounds great

The GP even said I am vegetarian so you can be vegetarian and have high iron!

Also, something along the lines of ‘your hair will not be the same as when you were young!’(wtf)

Where was your infusion?

@muppahuppapuppa I think you tagged me by mistake, I haven't had an infusion.

Which specialist did you see?

@muppahuppapuppa I had mine at the Oxford Iron Clinic and highly recommend them. It took about 30 minutes in total, including blood pressure checks, temperature and oxygen levels before and after the infusion. I then had to remain at the hospital for a while afterwards in case of any problems.

Thanks

Is this the same chain as the London one?

I think it just takes tine. I have regular iron infusions and blood transfusions and have open access to a unit at my local hospital based on 12 weekly blood tests Even post infusion I don't get ferritin up to 31 and have to live with it in single figures.
I think you're doing all you can right now.

I don’t think so @muppahuppapuppa but I’ve also heard good things about them as well.