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[Moog77]

Just to be clear - you need your ferritin level to be at LEAST 50 for normal hair growth. Ideally you want to be around 75 -  100.

DO NOT accept being told you are 'in range' - ask for the actual number.

I had chronically low ferritin for decades due to undiagnosed coeliac disease and went through cycles of it dropping to 5 then supplementing, re-testing in range then stopping iron and it falling quickly.

Also you have normal and in range haemoglobin but still have low iron stores (absolutely in my case) and this will make you feel rotten until addressed.

[joziel]

There is a great Facebook group for iron you might want to join, called The Iron Protocol (don't join the UK group, it's smaller and all the info is in the main group).

I had to get an iron infusion privately in London with the London Iron Clinic. It cost £200 for the consultation and then £500 for the infusion. It got my ferritin up to 192 at last check (several months after infusion). I should get it checked again really, to be sure I'm holding it...

I faffed around for ages with iron orally but couldn't get ferritin over 62. I wish I'd done the infusion sooner. Life is too short and it was an almost instant (if expensive) fix.

[FCS]

Thank you…yes I found the iron protocol FB group this week and it is a game changer. X

[Bungo]

Just to be clear - you need your ferritin level to be at LEAST 50 for normal hair growth. Ideally you want to be around 75 -  100.

DO NOT accept being told you are 'in range' - ask for the actual number.

I had chronically low ferritin for decades due to undiagnosed coeliac disease and went through cycles of it dropping to 5 then supplementing, re-testing in range then stopping iron and it falling quickly.

Also you have normal and in range haemoglobin but still have low iron stores (absolutely in my case) and this will make you feel rotten until addressed.

My ferritin levels have been between 20 and 30 for the past year anyway. My hair is noticably thinner but I've been blaming menopause . My partner dyes my hair and he says it's even thinner in the last year and it was always thin. I'm a vegetarian( but eat very little dairy so almost vegan) . I got serum iron levels tested a few months ago and they were normal 20umol(normal range between 10 and 30) so I can't be low in iron? If I say to m GP she will just say my ferritin and serum iron are in the normal range.

[Kathleen]

Hello again ladies.

Bungo -  There is nothing to stop you supplementing with OTC iron products if you want to improve your iron levels.
The one recommended to me was Spatone which is iron infused water and comes in sachets. I was also told to use them on alternate days as this improves absorption.

I hope this helps and take care.

K.

[Bungo]

Hello again ladies.

Bungo -  There is nothing to stop you supplementing with OTC iron products if you want to improve your iron levels.
The one recommended to me was Spatone which is iron infused water and comes in sachets. I was also told to use them on alternate days as this improves absorption.

I hope this helps and take care.

K.

I guess I'm worried about constipation and other side effects if taking and don't need them.I don't have any fatigue, really just thinning hair and leg cramps but they could have other causes.  That's why would like a GP  to say, yes my iron is low. If taking iron supplements, do you need to take long term?

[Wrensong]

There are some interesting articles about the significance of low ferritin with normal haemoglobin.  NICE consider ferritin <30 to be deficient.  Mine was 20 when last tested, but with haemoglobin within range this was considered acceptable (no treatment necessary) by my GP.  Because I had possibly related chronic symptoms (fatigue, weakness, hair loss, restless legs, swollen tongue & more) & knew my ferritin had been low for some time I wanted to try to get my level up, but with other conditions in the mix was wary of supplementing without GP involvement.  So I spoke to a GP who agreed that despite the normal haemoglobin it was reasonable to supplement with iron & retest to monitor progress.  I'm buying "stomach friendly" iron citrate OTC (much lower dose than NHS prescription iron) & doing this slowly, in addition to increasing dietary iron, as I can't take anything constipating & also need to keep an eye on effects on my thyroid status.

Bungo, if your ferritin is low & you are symptomatic & naturally concerned about it, you could try raising the NICE guidelines with a GP.  The recommendations for treating Iron Deficiency Without Anaemia (low ferritin, normal haemoglobin) are confusing where postmenopausal women are concerned, but I think it's reasonable to want to improve low ferritin levels to see whether this helps with symptoms known to be related.
Wx  (You have posted again while I was writing this!)

https://cks.nice.org.uk/topics/anaemia-iron-deficiency/

"Serum ferritin level is the biochemical test that most reliably correlates with relative total body iron stores. In all people, a serum ferritin level of less than 30 micrograms/L confirms the diagnosis of iron deficiency."

https://patient.info/doctor/non-anaemic-iron-deficiency

https://www.healthline.com/health/iron-deficiency-without-anemia#symptoms

[Bungo]

There are some interesting articles about the significance of low ferritin with normal haemoglobin.  NICE consider ferritin <30 to be deficient.  Mine was 20 when last tested, but with haemoglobin within range this was considered acceptable (no treatment necessary) by my GP.  Because I had possibly related chronic symptoms (fatigue, weakness, hair loss, restless legs, swollen tongue & more) & knew my ferritin had been low for some time I wanted to try to get my level up, but with other conditions in the mix was wary of supplementing without GP involvement.  So I spoke to a GP who agreed that despite the normal haemoglobin it was reasonable to supplement with iron & retest to monitor progress.  I'm buying "stomach friendly" iron citrate OTC (much lower dose than NHS prescription iron) & doing this slowly, in addition to increasing dietary iron, as I can't take anything constipating & also need to keep an eye on effects on my thyroid status.

Bungo, if your ferritin is low & you are symptomatic & naturally concerned about it, you could try raising the NICE guidelines with a GP.  The recommendations for treating Iron Deficiency Without Anaemia (low ferritin, normal haemoglobin) are confusing where postmenopausal women are concerned, but I think it's reasonable to want to improve low ferritin levels to see whether this helps with symptoms known to be related.
Wx  (You have posted again while I was writing this!)

https://cks.nice.org.uk/topics/anaemia-iron-deficiency/

"Serum ferritin level is the biochemical test that most reliably correlates with relative total body iron stores. In all people, a serum ferritin level of less than 30 micrograms/L confirms the diagnosis of iron deficiency."

https://patient.info/doctor/non-anaemic-iron-deficiency

https://www.healthline.com/health/iron-deficiency-without-anemia#symptoms
[/quote
Thanks wrensong, I'll say this to my gp re less than 30

[Wrensong]

Great tip about alternate day dosing Kathleen.  I've seen that mentioned in several articles.  As others have said, confusingly authorities differ on what's optimal for ferritin with some quoting much higher levels to aim for than others.

For anyone who likes detail, there are a few more links here I couldn't locate to post earlier.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8671013/

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5986027/

For those of us with thyroid conditions, this link & extracts from Thyroid UK are interesting . . .

https://thyroiduk.org/if-you-are-hypothyroid/importance-of-iron-and-ferritin-in-hypothyroidism/

"Ferritin is a protein that combines with iron and is used by the body as its main form of iron storage.  If you are losing iron, the body can maintain its iron levels by drawing on its stores until they are all used up.  When this happens, the iron levels can no longer be maintained at their normal levels and will start to fall.  Eventually, anaemia – a deficiency in either the quality or the quantity of blood – will develop. . .

However, ferritin levels can fall before iron levels themselves fall: low ferritin levels, therefore, indicate that intervention is needed to prevent the usually symptomless slide into anaemia.

The normal range of ferritin can be anywhere between 15 and 400 mg/dL,13 (lab ranges can vary).  Many healthcare practitioners think that iron supplementation should be considered by anyone with ferritin levels below 60 mg/dL with the aim of treatment to raise ferritin levels to within 70 to 90 mg/dL. If you have low ferritin levels, consider including iron-rich foods in your diet.

Interestingly, high ferritin has a link with inflammation and cell stress and damage. . .

Low iron/ferritin levels are a particular problem for those with hypothyroidism for several reasons.

Firstly, normal thyroid hormone metabolism depends on adequate supplies of iron, together with iodine, selenium and zinc.

Secondly, symptoms of anaemia mimic those of hypothyroidism so causing the patient to believe they are not taking enough thyroid medication or that the thyroid medication they are taking is not working.

For example, hair loss is a sign of hypothyroidism but it is also caused by low iron levels.  Patients can easily believe that they have this as a remaining sign of hypothyroidism without realising they may have low levels of iron/ferritin. It is very important that all hypothyroid patients also get tested for iron/ferritin.

Thirdly, low iron levels may result in the thyroid peroxidase enzyme , which is iron-dependent, becoming less active so reducing the production of thyroid hormones.  The thyroid metabolism may also be altered, the conversion of T4 (thyroxine ) into T3 (triiodothyronine ) slowed down, and the binding of T3 modified.  The circulating levels of TSH (thyroid-stimulating hormone) may also be increased."

Wx

[Clovie]

Hi FCS 

My story is quite similar - In brief - I had a urine infection I could not shake off which made me quite ill. I went to GP for, I presumed, antibiotics. He said mty pulse was 122 at rest so sent me to hospital for intravenous antibiotics as he thought I had kidney infection.

At hospital I had a blood test and was asked all kinds of questions  (Now, I've had hell with my HRT over the years, I am still bleeding regularly and my periods have never stopped, I'm 59. I was on sequential HRT and could not tie in the withdrawal bleed with my own bleeds as cycle is short, around 22 days. SO I'd been having heavy periods of my own, plus, as I was terrified of hyperplasia, having the withdrawal bleeds. I'm suffering from health anxiety due to going through hell with my GP stopping giving me bio-identical HRT specifically utrogestan due to cost -  so had been having to pay for my own! )

Blood test showed I was severely anaemic.
2 and 2 together explained why I had felt faint on standing, out of breath just walking, and calves aching terribly on short walking distances for about a year.

BUT - I dare not tell the hospital doctor about this as I was terrified they'd stop my HRT - so I said all was fine. They presumed I was post menopausal at 59 anyway.
So they booked me in for urgent colonoscopy and endoscopy, query cancer!
My levels were less than 50% of what I should have had, the number 55 was quoted? But not explained. They did say they considered transfusion it was that bad.

Well, I went to my GP and came clean about the bleeding issue. I therefore did not need the other investigations, thank god.
But my GP sent me to hospital for scans of my womb due to me 'not POSSIBLY having my own periods at 59' and query womb cancer! (YES she actually SAID this! )   She changed my HRT to continuous - but six months on I am still bleeding regularly, nothing has changed. at least I don't do the withdrawal bleeds as well now I suppose...

Scan showed all clear, no issues and womb of menstruating woman.  (Ha!  so I actually AM still having periods, it IS possible! And, complete with all the PMT etc beforehand)
I was given ferrous fumarate 332mg twice a day.
I took it with orange juice as directed by doctor.

After a week and a half I felt much better - but not better per se.
After 3 months I had another blood test at a follow up gynae appointment, and was considered now within normal range.

 I stopped taking the tablets as the gynae's letter said I could stop now, but I am going to pluck up courage to ask to carry on as I'm still bleeding. No doubt I will have yet another fight on my hands My hair is quite thin and my nails are very brittle. I also want to ask for thyroid test but again, I doubt I will be allowed

I don't have much faith in doctors after all this carry on with my HRT I have to say.

Anyway, I'm sorry, I tried to be brief but I see I have waffled!!    Probably doesn't make much sense but you should get the gist!

[Clovie]

Hi Wrensong!

I wonder, as you seen knowledgeable about blood levels, if you could guess at what my 'levels' were?
I have been told by hospital, back at my GP and at the gynae appointment that they were VERY VERY severely low. (Doctors sucking air through teeth when reading my notes and saying 'WOW' and 'why were you not transfused?' etc etc.)

I WILL ask next time I go , for an explanation, but what might '55' mean?  I'm not sure what the 55 refers to as I'm not sure what type of blood test I had or what the 55 related to.  Wether it is ferritin level or something else? I suffer from health anxiety and usually just want to get out of the room. I know. No excuse, but it was generally quite a hard time for me and I was really quite unwell at the time. Remiss of the doctors not to have explained it to me in more detail anyway, in all honesty.

Thank you for any insight
 

[Wrensong]

Hello Clovie, what a horrible time you've been having, bless you.  I wish I could help but, no - I'm not knowledgeable at all.  I just posted a few articles I'd collected when researching for myself, trying to get my own ferritin up & hopefully get rid of some persistent symptoms.  The other ladies who've either been truly anaemic &/or had low ferritin long term will know more than me, so hopefully they will be along to help.  Sounds like you need a GP you feel you can work with so that it's not daunting being upfront & approaching them for help, but I know that's idealistic as things stand with GP services so stretched.  And the last thing we feel we need is hassle & more worry when we're feeling as bad as you must have, so I absolutely get why you didn't push for more detail.  Hopefully one of the other ladies will be along to help shortly.
Wx

[Clovie]

Hello Clovie, what a horrible time you've been having, bless you.  I wish I could help but, no - I'm not knowledgeable at all.  I just posted a few articles I'd collected when researching for myself, trying to get my own ferritin up & hopefully get rid of some persistent symptoms.  The other ladies who've either been truly anaemic &/or had low ferritin long term will know more than me, so hopefully they will be along to help.  Sounds like you need a GP you feel you can work with so that it's not daunting being upfront & approaching them for help, but I know that's idealistic as things stand with GP services so stretched.  And the last thing we feel we need is hassle & more worry when we're feeling as bad as you must have, so I absolutely get why you didn't push for more detail.  Hopefully one of the other ladies will be along to help shortly.
Wx

Aww. Thank you so much for your lovely, understanding reply Wrensong! 
Wishing you all the best xx

[FCS]

Hi Clovie,

Thanks for your story. What we have to go through!!
I have had a bad day of symptoms today and totally fed up of feeling crap. Managed to get a phone appointment with a different GP next week. I just want them to agree my take on all this is sensible, that I’m not going mad or making it all up, and to get a letter written for my employer to warn them I’m going to struggle for a while yet….

[Clovie]

Hi Clovie,

Thanks for your story. What we have to go through!!
I have had a bad day of symptoms today and totally fed up of feeling crap. Managed to get a phone appointment with a different GP next week. I just want them to agree my take on all this is sensible, that I’m not going mad or making it all up, and to get a letter written for my employer to warn them I’m going to struggle for a while yet….

Awww, good luck with your appointment FCS. Sending a hug. xxx