blood test shows high ferritin

[Patdoyle]

just had blood tests done because I have pain in my right pelvic area. Come back with high ferritin. Mines 200 and should be below 150. I googled it and don’t really understand it. Can’t get an appointment with GP for 3 weeks so has anyone on here ever had this result. I’m a bit anxious about it.

[Blue-52]

hi Pat,

Just had a look, are you a b any iron tablets?, it says about the body storing iron?

If you are very concerned, call 111, and they will advise you.

Let us know how you get on.

[Patdoyle in reply to Blue-52]

Hi Blue no I’m not on any iron tablets. I rang the surgery first thing this morning and receptionist said if it was urgent then the doctor would ring me. I’ve now got telephone appointment on 9 September. When I googled high ferritin it mentions hemochromotosis which is too much iron in the body which damages your heart and liver. Bit worrying

[Blue-52 in reply to Patdoyle]

I can imagine you are worried, I did see a similar thing, but didn’t want to alarm you, the doctor must be ok, with the results for now, be more relaxed, that they don’t think it is urgent .

[Kat791]

Hi there,

I found a UK charity online that helps people with haemochromatosis. They have a telephone and an email advice line on their website. They might be able to help you. Here is the website link:

haemochromatosis.org.uk/

If you can't get to the website, here is the phone number and email from the website:

Telephone Advice Line : 03030 401 102 (weekdays Noon-3pm)

Email Advice Line : [e-mail] (weekdays Noon-3pm)

Hope this helps!

[Patdoyle in reply to Kat791]

Thankyou

[Yassytina FMA UK Volunteer]

Hi, glad too see you have had some helpful replies. Just shows what having Blood tests can show up , let us know how you get on Pat, I am due again soon too re check my vitamin D levels as they said each time I have BT s my calcium levels have gone up, oh the joys of middle age im finding take care x

[Goldlover in reply to Yassytina]

Hi yassytinaThis can be a sign of hyperparathyroidism..I had rising calcium levels for quite a while..I was referred to endocrinology ..turned out I had a tumour on my parathyroid and it wasn't working properly. I ended up having an operation to remove one of my parathyroid in 2017. I then had another removed in 2019. There are 4 parathyroid glands in the body. My calcium has gone back to normal now. Definitely try and get a referral to endocrinology to get checked.

[EarthSitter1]

Hi Pat, sorry you’re in the wars. Hope they sort it out soon. Try not to worry too much as they would have gotten you an emergency appointment if it was anything too serious ❤️

[Patdoyle]

thankyou everyone. I’m on my own so it’s nice to get reassurance from this forum.

[Aliceeliza in reply to Patdoyle]

It's so annoying when you can see the result but can't get any explanation from the GP. I have had it a lot lately and hate it. I agree with the person who said if the doctor has not rung you it is probably not too important and you will probably have it repeated. Good luck

[Dizzytwo]

Hi Pat, Higher than normal ferritin levels can mean you have too much iron in your body.

[Patdoyle in reply to Dizzytwo]

Hi Dizzy why does it get high. Is it diet or just your body going a bit off course. That’s what I don’t understand

[Dizzytwo]

Hi Pat, from what I have read there can be a number of reasons for high ferritin. High ferritin levels can be caused by a number of conditions, including inflammation, infection, and conditions that cause the body to store too much iron:

I have two friends who have to have bloody removed because they store two much iron x

[keokar]

Hi patdoyle, I had blood test done back 10 years ago,and had high ferritin results, my doc, repeat test and still high, asked if I noticed any changes, but didn't then, so it was left. Back in 2019 I had another test and this time younger doc, thought it could be haematomacrois, which had a DNA test, and turns out I had it. It explains my joint pain and extreme tiredness, on top of fibromyalgia. Mine was 180 as well when had it, but it should be under 50, so had regular blood letting, that's how they get rid of it, for couple of years, and now it it's what's called maintained, have blood test now 3 months at time, and if goes up again to 50, start blood out again. If have it, you will have to just check iron in foods, especially cereals, and not too much red meats and shell fish or veg with high iron, all in moderation, and alcohol not too much. Just watching out in sun as well. You can end up going the other way as well, to too little iron, it's confusing. 🙄. It effects the bones as well, and was given leaflets on arthritis and may need replacement joints. Hope get speak to docs, but it's ok, can be treated, mine was a DNA one, as there's 2, which apparently doc said had since born, but only starts playing up in 40s o 50s, if have that one, all siblings need checking, my sister brother and son have been found to have it, my brother found he lost his hair because of it, alopecia, which is another rare symptom. Sorry for long text. Hope sort out soon, and no either way. You welcome to text if you need anymore help. x

[misspicky82]

Morning Patdoyle ☺️

Ferritin high levels means that you have some inflammation markers so you'd could be rheumatoid arthritis. It can also mean other things so they will more likely do more tests and possibly xrays. Given you've got pain there though I expect this if what it'll be. Get onto your GP surgery and find out what they are planning next asap x

[Mosaic2021]

hi my son has haemochromatosis which was only discovered when he did a 23 and me dna test. Both me and my husband are carriers of the gene as is my daughter. My son is 26 and just has to give blood regularly and blood tests every so often. It doesn’t usually affect women as badly because of menstruation.

[Veiga]

Hi Patdoyle, There are many possible causes , from heavy alcohol consumption to illness es/ disease. I'd advise you dont rely on fb for your answers, you really do need to consult, ideally see your GP. Would it be possible for you to write either via the NHSapp or even by hand, expressing your concern & requesting an earlier appt - ive found if you put something in writing & express your concerns you GP should usually respond. , state that even a telephone appt would be helpful if you have to wait to be seen.

Hope this helps ,

Jacq

[Patdoyle in reply to Veiga]

Hi Jacq I’ve stopped looking on google and will wait to talk to GP. I tried to get the receptionist to give me an earlier telephone appointment yesterday by telling her I was very worried and on my own but she just kept saying that this was the earliest appointment. I’ll just have to put it out of my mind. Funnily enough for the past few months I felt I had turned a corner because I was feeling well for a change. There’s always something!

[Gowest123]

I have had high ferritin levels for 4 years basically when my pains started levels up to 400 sometimes. My GP never been concerned said it could be down to inflammation but I never have high levels when they get checked. I have raised this on several occasions to different GPs who dont seem concerned. Let me know how you get on with your appointment

[Patdoyle in reply to Gowest123]

That’s very interesting. My level was 200. There were a few other abnormal results under the iron blood test but the overall iron was normal. I will update you when I talk to the GP. Thankyou for replying.

[Confused01]

Go onto your surgery website and complete an e-consultation.

They are required to respond within a couple of days.

Generally call you first.

[Patdoyle in reply to Confused01]

Hi our surgery is no longer doing E consults. The only way now to get an appointment is ring at 9.30 and you get an appointment 2-3 weeks hence. If it’s urgent they will get you seen that day. I used to use e consult a lot.

[Confused01 in reply to Patdoyle]

Presume you are nhs?

My understanding is that they are required to offer this service so worth checking.

I believe this service is part of their service contracted requirements . The surgery areas CCG should be notified if not. GP’s are independent businesses contracted to the nhs. They aren’t actually the nhs as so many believe.

My surgery turns their e-consultant on and when they please, but can then still say they offer it.

Phoning first thing for appointment is always suggested but then, unless a serious issue, there are no appointments available or they tell you to go to A&E.

I get all say under pressure but seriously most people are in their jobs nowadays.

[Woodystar]

hi Pat try not to worry too much.

My ferritin levels went sky high upto 800 at one point. Dr did all the tests for heamochromatosis etc and autoimmune issues, not long after I had a TIBC test (something to do with iron transport) which was abnormal but I think that was in response to the high ferritin …. It sorted itself out within a few weeks once I stopped taking pregabalin

I have fibromyalgia as a diagnosis but they know I have autoimmune issues and high cholesterol alongside of kidney disease and fatty liver …. I still think the high ferritin issue was sparked by pregabalin which I didn’t take for long at all, I just don’t think my liver likes many drugs. I don’t drink alcohol nor take many medications and now my ferritin levels stay pretty normal.

[Patdoyle]

thanks for your reply. I’ve got fibromyalgia and menieres but last year had high liver enzymes after. Routine blood test. Was referred to hospital but nothing was found. I don’t know what’s going on with my body.

[Mathex]

hi Pat

I had high ferritin levels over a year ago, I struggled with hip pain then. GP didn’t seem overly concerned but just ordered repeat bloods and it was down to almost normal. Sorry I can’t remember the numbers as the GP changed their system and now I can only see my records from March 2024. Try not to worry too much as am sure before the receptionist makes a decision to give a later appointment she would have discussed it with the triage team first before she offers appointments.

Might be worth ringing every morning too to see if they can give you same day appointment. Also keep checking econsult coz some practices turn it off and is only open from 7am-11am.

Hope you get the help.

[saj01]

Could mean there's inflammation ? if it's not iron.

[Sugarhobbit]

From NHS website Normal ferritin levels for an adult female

Adult female 25 - 300

If your Dr was worried about the results they would phone you.

My GP phoned me because mine were low and I was started on iron tablets for 3 months. Repeat blood test after 3 months and levels returned to within normal limits, so I didn't need to continue on treatment.

You may have had other blood tests done at the same time. How did you manage to find out the results. Was it via the surgery or online?

Sometimes because this blood test is high it can be for different reasons.

I hope this information helps.

Kind regards

Sugarhobbit

[Patdoyle in reply to Sugarhobbit]

Thankyou yes it does help

[DJK99]

Hello.

Mine is 566, and has been around that amount for a few years... My GP and rheumatologist don't seem that bothered.. as I am on iron (as aneamic), and take methotrexate, but also it is indicative of my severe inflammatory arthritis and general quite back levels of inflammation as I also have lupus, sjogrens, fibromyalgia, liver and kidney disease etc etc.

I don't think yours is seriously high but you should discuss it with your clinicians so you feel OK about it. At my level it is called Haemochromatosis. The Mayo Clinic explain "If a ferritin test shows high ferritin levels, it most often means swelling in the body, called inflammation. Conditions that can cause inflammation include liver disease, rheumatoid arthritis and other inflammatory conditions, and overactive thyroid, called hyperthyroidism."

I hope that helps, and your GP etc can talk to you about it sympathetically and supportively.

Best wishes

D

[AllthatGlitters]

Hello I have Haemochromatosis and my iron levels go to 400+ which is a shock as that’s way over the normal range.

They have a very good website, have a look, however until you speak to your GP you won’t know for sure what your high iron levels mean. It’s frustrating to have to wait a while for your appointment, hope it goes well xx

[Patdoyle]

I finally spoke to GP this morning. She said ferritin levels are really borderline so I’m to do another blood test. I’ll keep you posted

[Littlemisssunshine12]

Did you get another blood test pat?

[Patdoyle in reply to Littlemisssunshine12]

Yes and the level had gone down a bit. The test for genetic haemochromotosis came back and she said I didn’t have it.

[Littlemisssunshine12 in reply to Patdoyle]

Thanks for the update.

So no further action?

Good that your levels came down.

[Patdoyle in reply to Littlemisssunshine12]

They came down from 200 to 196 apparently. The GP said my ferritin levels had always been on the high side. I had never been told that before.