Ferritin Levels Through The Roof

[turnthatfrownupsidedown1]

Not sure what to think, I had tests done for my health and menopause and one of my results showed Ferritin levels off the scale, I'm ringing to speak to the doctor tomorrow as I've been advised to follow up with the GP.

Any thoughts, feeling slightly concerned tonight.

Thanks

No use whatsoever but I'll happily take some! Mine is 8 🙈
I hope you get sorted quickly, take care

I'm not sure about other ferritin levels but B12 is up and Cholesterol.

My liver function is ok but my doc said it can be ok but other tests can show up problems.

Just wasn't expecting the ultrasound but I am sure its nothing...

Feeling very bloated and puffy?

Not a big drinker at all, occasional taker for over 2/3 years and before that not too crazy!

@turnthatfrownupsidedown1 I had a blood test two weeks ago showed low folic acid so given tablets. Called back in for another blood test today assuming it was about folic acid. BUT no my ferritin levels were 413 two weeks ago. Now I'm worried. The nurse wouldn't discuss it which wasn't reassuring.

I agree with PPs about possible haemochromatosis. You should definitely raise this with the medics. It is very straightforward to treat but can cause organ damage if left.

Its a few years ago now, but I also had abnormally high ferritin levels, so my GP followed it up.

Turned out that I didn't actually have haemochromatosis, but that I am a carrier for the condition. I'm now trying to persuade DS to get himself checked to see if he has it.

I've heard of the Celtic curse only discovered what it is today

@Astromelia how long does ferritin stay elevated after an infection?

I have haemochromotosis ( but am heterozygous which is the milder version). I had persistently slightly elevated ferritin levels, and had to really push to get it checked ( I was aware my late father was a carrier, for some reason my mum refused to get checked but she also must be a carrier). At first they thought could just be an infection so retested and 3 and 6 months - as as others have said it’s an inflammation marker.

I got referred and had an ultrasound to check primarily my liver for fatty liver disease, and had liver function tests. Even the haemotologist thought it was unlikely and said he’d run the genetic test because otherwise I’d be worrying about it!

I now get my levels checked every two years. I also don’t take any vits with iron.

If it is haemochromotosis then there is a very helpful charity Haemochromotosis Ik

Well... by way of follow up it turns out I am a carrier of the haemochromatosis gene. With still elevated Ferritin levels it's likely I'll be diagnosed as having the condition.

I'm being referred to the Haematology department so let's see what happens.

For any haemochromatosis sufferers what are you top 3 symptoms?

Also any top tips on how to manage this as it seems people are not that bothered about having this?!

Thank you.

My DH has haemochromatosis. The way it’s managed is to have blood taken regularly, to keep the level of ferritin down. He doesn’t drink alcohol and avoids iron fortified breakfast cereals. Other than that there’s not that much you can do. It does definitely need treatment as a build up can damage your organs. My DH suffered fatigue, skin problems, and altered kidney and liver function. He’s completely fine currently and his last blood test showed a level of under 100. They will test him again in three months. He only has a mild version but they have still taken it seriously.

I am also a carrier but not diagnosed as having haemochromatosis. Which marker do you have? I have one of the two, but apparently it’s the one of the two that is less likely to result in haemochromatosis (if that makes sense!). If you have one but it’s the other one, it’s more likely that you have it.

Whether you are eventually diagnosed or are only a carrier, my GP has stressed that my dc should be tested at some point in early adulthood because they are more likely to have it obviously with one parent a known carrier.

I think most people are largely symptom free unless they become really ill. My uncle had it and wasn’t caught until very advanced and he had a lot of liver damage (this was like 30 years ago) and had liver symptoms, E.g. jaundice, etc.

When people are talking about being carriers do you mean you have one or two copies of the genetic marker? Im assuming 2 as I don’t think you usually develop the disease with only one copy.

I am heterzygous so have one copy of each of the different genetic ‘change/marker’. If you have two copies of the same marker you will be homozygous.

@turnthatfrownupsidedown1 - as mentioned I’d really recommend haemochromatosis U.K. as an excellent source of information ( quite a few GPs don’t seem very knowledgeable about this). There is also a lot more research on haemochromatosis in the US and some good sites pop up in google. They have quite a bit on diet etc.

@Grimwood @mindutopia @Groutyonehereagain

Thank you so much for your responses, I'm going to check out the specialist organisation! I'm grateful for the recommendations.

It’s a really odd condition. My DH has two different copies of the gene. Most people wouldn’t have haemochromatosis with two different copies but he does.

@Groutyonehereagain - that’s what I have and was similarly told highly unlikely I’d develop it but my ferritin is raised ( not too much atm!)

UPDATE!!

It's confirmed, I have Haemochromatosis and will need blood draws to get my iron levels down to a safe level, probably every 2 - 3 weeks to start with.

Here ends the story, thanks for all your input along the way!

Thanks for the update @turnthatfrownupsidedown1 . Good luck with everything. 💐

@turnthatfrownupsidedown1 my friend was diagnosed 25 years ago. She's absolutely fine in herself with treatment. She's adopted so informed the agency in case her biological siblings and offspring were at risk