Donating blood having been stubbornly low on fe... - Thyroid UK

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Donating blood having been stubbornly low on ferritin but now persistently over range

Noelnoel profile image
24 Replies

Since taking too high a dose of iron for a period of time a few years ago my ferritin has been quite a bit over range. Previously it was longterm stubbornly low. All my life in fact. After stopping iron it began to lower slowly but has since remained static and too high. I also always have slightly raised copper and zinc although this time copper is low normal

I know raised ferritin can cause all sorts of problems and worried it will worsen an already troubled liver so I’m considering donating blood as a way of lowering it because I’ve had raised liver enzymes of an unknown origin for years, long before having over range ferritin and have had all sorts of investigations but told I have a completely normal looking liver and no longer being checked

My husband used to donate blood annually without realising he had low ferritin which didn’t seem to be noticed by those taking his blood. It ended up so low he had an iron infusion

Any advice appreciated on similar experiences of donating blood for high ferritin. I don’t have true haemochromatosis

Thanks

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Noelnoel profile image
Noelnoel
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24 Replies
Regenallotment profile image
Regenallotment

hi Noelnoel i think you need to crop your name out of your image 🌱

Jaydee1507 profile image
Jaydee1507Administrator

I've removed the image as it showed your name. It was also illegible so reposting in comments would be a good idea once you've covered any personal information. :)

Noelnoel profile image
Noelnoel in reply to Jaydee1507

Thank you Jaydee, I hadn’t noticed that my details were printed in the middle of the report as well as the top

TiggerMe profile image
TiggerMe

Yes, I nagged my sister to go and give blood having seen her have a couple of raised ferritin results and the GP wasn't interested, there wasn't any problem though it still didn't bring her into range

I continued to nag her to get a full iron panel and when her GP finally conceded it turns out she has haemochromatosis and is now getting proper monitoring and regular blood draws, she had previously been a regular blood donor before becoming Hypo

Apparently not uncommon for women to find out after menopause, though she is the only one in the family 🤷‍♀️

Noelnoel profile image
Noelnoel in reply to TiggerMe

TiggerMe, that’s interesting and now you mention it I think I’ve read that before but had forgotten it can occur in menopause. I had a relatively early menopause at 41 and am now 65, I wonder if it applies to post menopausal women

Regardless, it helps to have had the reminder

Thank you

TiggerMe profile image
TiggerMe in reply to Noelnoel

I assume the lack of regular blood loss compounds the issue... forgot to say take a look at L-glutathione reduced as the natural antioxidant it has sorted out my dodgy liver results, I'm pre-disposed to not produce enough apparently (DNA result) but as we age we all produce less

HowNowWhatNow profile image
HowNowWhatNow in reply to TiggerMe

Well done you

TiggerMe profile image
TiggerMe in reply to HowNowWhatNow

Once you know about these issues it makes you want to get a big bell and hail everyone to properly look at any blood test results they have, so many people say 'Oh it's all jibberish to me but the GP says it's "Normal"..... arghhhh 😖

Met a lady whilst out walking the dogs (well you don't meet many bulldogs) and randomly Hypo issues came up... "I've been on levo for years but never felt well" sent her off with load of info and dropped a book round to her.... she was shocked and fast enlightened, even though she said she didn't 'do' the internet by the time I dropped the book round she had fired up her ipad and was watching a Dr Myhill interview!

HowNowWhatNow profile image
HowNowWhatNow in reply to TiggerMe

I couldn’t agree more.

My aunt has been overweight for 30 years, but never sought medical help / advice about it. She was diagnosed as being hypo on retirement but is still on a starter dose of thyroxine, without ever having had a follow up review. Despite my best efforts, she doesn’t go back to the doctor to ask about her blood test levels now. Sigh.

TiggerMe profile image
TiggerMe in reply to HowNowWhatNow

😟 certainly many of the old generation don't like to question their care, my parents were the same

LostinHeadSpace profile image
LostinHeadSpace

Hi Noelnoel,

I rarely get the time to post, but I’ve been having high ferritin, probably only since menopause, but we didn’t test before then. I was expecting to find low ferritin as a cause of fatigue, but (unfairly!) high ferritin can also cause fatigue. Mine was in the mid-400s until I started donating blood, and now it’s down to the 250 range.

At first the hematologist was completely unworried, and said hemachromatosis only counts if the ferritin is like 1000. He did gene testing, and I have one of the markers, when it takes two to count as true hemochromatosis. He seemed a bit too unworried about the damage that high ferritin could do, but promised to look at the research for other unusual gene combinations that might result in an unusual case…so that’s where we stand now. I’ve been intending to donate twice as much to try to get my ferritin lower, but haven’t managed to yet.

Hope this helps a bit!

Lost

Noelnoel profile image
Noelnoel in reply to LostinHeadSpace

Thank you LostinHeadSpace, it does indeed help

It’s good to know you’ve had a degree of success by donating blood. Has it improved your fatigue. Luckily, I don’t have fatigue

I suppose it were true haemochromatosis your levels would rise again. Has it affected your iron panel markers. I presume he’s monitoring you

Did he suggest donating or was it your idea

No hurry to reply but do try to make time to donate more frequently. Even if there’s only a small chance of damage, you don’t want that risk

TiggerMe profile image
TiggerMe in reply to LostinHeadSpace

Interesting as my sister was diagnosed with her ferritin around 770 though her iron serum was above range when they finally tested and now they plan to get her ferritin down to 50

HowNowWhatNow profile image
HowNowWhatNow

(sorry that this doesn’t answer your question, it is to define your terms) - what would you consider to be low or high ferritin levels?

TiggerMe profile image
TiggerMe in reply to HowNowWhatNow

NHS suggest 10-300ng/ml or many of the private tests use 10-150ug/L

HowNowWhatNow profile image
HowNowWhatNow in reply to TiggerMe

Thanks.

People here often say 50 and over is a better marker for (better than low) ferritin. 10 or less is exceedingly low! Mine has been 2 and 3 before, and no-one should get to that!

TiggerMe profile image
TiggerMe in reply to HowNowWhatNow

Oh yes, yet again the ranges are too wide but you won't get any assistance within these ranges 😕

Noelnoel profile image
Noelnoel in reply to HowNowWhatNow

The trouble is, definitions vary, even between NHS trusts, so Al has helpfully given an overview, stating:

Normal ferritin levels vary by age and gender. For example, the normal range for adults assigned male at birth is 24–336 nanograms per milliliter, while the normal range for adults assigned female at birth is 24–307 nanograms per milliliter. A serum ferritin level of <30 micrograms/L is considered a reliable indicator of iron deficiency

I’ve read through a few of the definitions, as well as NHS trusts and I’m confident the AI overview captures the essence

Noelnoel profile image
Noelnoel in reply to Noelnoel

AI says:

The normal range for blood ferritin levels varies by gender and age:

Men: 30–400 nanograms per milliliter (ng/mL) or 24–336 micrograms per liter (µg/L)

Women: 13–150 ng/mL or 11–307 µg/L

Children: 25–200 ng/m

RachelP03 profile image
RachelP03

Hello, I’m afraid to say that I can still see your name on the photo if you click into it. However, I have a couple of observations to add…

1) Your Vit D could be higher

2) Your B12 is also quite low and NICE guidelines may even conclude it’s in the indeterminate range for a deficiency

3) High Ferritin isn’t necessarily from too much iron/iron stores although your history of high supplementation may support that it is. High ferritin can also be caused by inflammation or infection in the body. Did you have CRP tested? What are your other iron markers like?

Noelnoel profile image
Noelnoel in reply to RachelP03

Thank you Rachel

I stopped taking a b complex months ago to see how low my B12 goes. Having taken it for years and seen my levels soar I came to the conclusion that it’s not a good idea to supplement without first knowing why one’s levels are low

Will continue with experiment and then do various tests to try to determine cause

As for Vit D, I’m continuing with 1,000iu daily throughout the summer and will test again along with B12 etc, in October

Have CRP tested regularly and always low

Thank you for your helpful observations

TiggerMe profile image
TiggerMe

Name still visible

Noelnoel profile image
Noelnoel in reply to TiggerMe

Thank you but how odd, it looks deleted in the photo

Which photo, zinc/copper or ferritin

TiggerMe profile image
TiggerMe in reply to Noelnoel

If you open it your name appears top and bottom

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