High iron

[lmcgill6578]

Hiya, first time posting I've just been told o have very high iron and my doctor has urged to get more test has this happened to anyone worried sick 🙈

[HarryTheSteppenwolf]

I think the doctor will want you to be tested for haemochromatosis (www.nhs.uk/conditions/haemochromatosis/). It's important to have the tests so you can plan treatment.

[Lilythepink3]

@Imcgill6578 did you get your follow up tests? I just ask because my doc has said my ferritin levels are very high and I'm also really concerned what the underlying reason may be.

[lljkk]

How old are you guys? Normally women before menopause get fewer (maybe no) health affects from h-c due to having monthly periods.

The primary treatment is to regularly donate blood. It's not too bad as chronic diseases go.

[Lilythepink3]

Hi, I'm 43 and have always had long cycles and light periods, I wonder if this could contribute. My ferritin is very high though, 442. I havent been feeling well recently and was told i had costochondritis (inflammation of the rib cartilage) a few weeks ago - i'm not sure if that could affect result.

[lljkk]

Are you gals definitely being referred for more tests?

[Lilythepink3]

I'm calling my Docs tomorrow. They hadn't called me in about the result, not sure why, maybe as I am currently ill with virus and costochondritis, not sure if that can skew result. @lljk - do you mind me asking if you have experience of h-c? Just wondering if it presents with any symptoms?

[ChardonnaysPrettySister]

High ferritin can cause joint pains, liver problems and tiredness.

The inflammation might sometimes explain the high reading, so you might want to do a second test in a few weeks.

[Lilythepink3]

Thanks, I'm hoping that is the reason. I have been feeling ill, tired and achey for the last couple of weeks but think that is viral as came on really quickly. My liver function test was fine. Off the the docs today hopefully to discuss.

[ChardonnaysPrettySister]

Let us know how you get on.

[princessTiasmum]

I have Haemochromatosis, and its really nothing to worry about,i have no symptoms, and rarely have blood taken, but my twin sons have it and do suffer with joint pains and stomach problems
I was diagnosed about 15 years ago, my ferritn levels were 950, it has never been as high since, women tend to be diagnosed later than men due to having periods,
Maybe i am just lucky that i have no problems with it,in fact i have questioned whether i do have it,
As long as you look after yourself and have blood taken [venesections] when your ferritin gets high you life expectancy is normal,
You need to watch what you eat and drink, up to a point, best to keep off alcohol, or drink very little, orange juice can put your ferritin up, as orange juice binds to iron, and certain foods can put the ferritin up,
I am sure your Dr will advise you, but you will see a specialist who knows more than your Dr,
You can google the Haemochromatosis society, which will have more information,
Your organs can all be affected ,but if you look after yourself you will help yourself
It can cause extreme tiredness, but i find if my ferritin gets too low i feel more tired,

[princessTiasmum]

Haemochromatosis, is a genetic condition by the way, which means your parents must have it or be carriers, if you have children they will need to be tested at some point, and siblings too,but it doesnt mean all your children could have it, some could just be carriers
At one time it was said that both parents would have it, but not sure if that is the case now, as research is coming up with new information all the time,
My mother cant have had it i think as she was never diagnosed and lived to 96, never knew my real father so cant say about him

[Lilythepink3]

PrincessTiasmum - Thanks for the info, that's really helpful. Doc says she wants to re-do the ferritin test tomorrow (last one was last Thursday) and also do iron work blood test (not sure what that is called?). She basically said she had no idea what caused it and cant rule anything out or suggest anything until next test. But that costochondritis causes inflammation and inflammation increases ferritin. I have been quite poorly the last 2 weeks with a virus, I'm not sure if that would also cause inflammation. All making me very anxious!

[princessTiasmum]

Lilythe pink3 it could possibly be the inflammation which has caused the rise in ferritin, has your Dr suggested a liver scan, maybe wont yet, but i think the blood tests with test for spikes in your liver readings
I had a liver biopsy, which was all clear, and wasnt even painful
Maybe the Dr will do more tests when you are over the virus
Have you asked any of your family if they have ever had any problems with high ferritin?

[PatchWorkPrunella]

Haemochromotosis. It's the most common rare genetic condition in the UK and Ireland. You need to push for testing as in the medium/long term your ferritin levels will sneak up, causing damage to the organs, if left untreated.

[Coldhandscoldheart]

The iron studies blood test measures your transferrin and transferrin saturation. Loosely, transferrin carries ferritin. The more saturated it is, the higher your iron stores. A high t-sat would indicate a genuine iron overload rather than a raised ferritin due to inflammation.

[Coldhandscoldheart]

Sorry, typing one handed on phone, will try to post more in a bit.

[princessTiasmum]

Imcgill6578 Try not to worruy, i know its hard when something out of the ordinary with your health crops up, but if it turns out to be HH ,it isnt too bad,as i said in my first post, you just need to have blood taken until your ferritin gets to an acceptable level, which they say is 100 , , mine always tends to be under, and i actually feel better when its around that figure rather than lower,
You will be monitored regularly and here at least in my local hospital i and my sons regularly have blood tests to make sure it is kept under control,
Hope you get answers soon, but please try not to worry it could be worse, and you wont have to take meds for it as the only treatment is venesections, not bad unless you dont like needles,it is usually about a pint at a time, and doesnt take long

[Lilythepink3]

Thanks for all the replies. I am going to push for the genetic testing.

@princessTiasmum - thanks for all the info, I'm so sorry your boys have the associated symtoms. My liver function test came back fine so no mention of biopsy yet. No issues as far as they know in family, although not often been tested for ferritin. My doc is re-testing tomorrow although I only had original test on Thursday so not sure if that is enough time to drop? I'm so scared its something else, all other blood tests are fine so far - FBC etc. Anyone have any knowledge of inflammation or a virus causing such a high reading (442).

Thanks

[ChardonnaysPrettySister]

Can you explain what it means Coldhandscoldheart?

Would high stores of iron mean your body cannot use the iron and so it stores it, or does it mean it overproduces iron?

[lljkk]

Person I know with h-c said basically the normal processes the body uses to get rid of excess iron just don't work, so iron accumulates in the blood. Sounded like the condition effectively makes the blood thicker and that clogs things up.

Probably over-simplistic.

[Coldhandscoldheart]

It’s a bit more complicated, but simply - haemochromatosis (HH) is an iron overload disorder (there are others)

In someone without HH, once the body has enough iron, it simply stops absorbing any more until it needs it.

People with HH don’t have that ‘stop’ switch, so the body just keeps on taking on iron.

The body doesn’t have a mechanism for excreting excess iron.

Eventually the blood is saturated & the body needs to stash the excess iron - in liver, joints etc

You use iron to make red blood cells, so when a unit of blood is removed from the body, you use up iron in replacing it.

The haemochromatosis society produces a very helpful information booklet, and there’s also information on the website of the British liver trust, and haemochromatosis society websites worldwide (notably Australia and Canada).

Worth bearing in mind that protocols for venesection, monitoring and levels etc vary somewhat not just country to country but within the uk, so your area might be a bit different from someone else’s.

[ChardonnaysPrettySister]

Thank you, that makes sense.

[princessTiasmum]

There is also a facebook group, just search Haemochromatosis, you should find it

[Lilythepink3]

Update on my further blood tests, just got them back and terrified this is anaemia of chronic disease/Inflammation. I have no known underlying conditions.

Serum iron 30.8
TIBC 1.46 (under normal levels)
UIBC 37
Trans Sat Index 83%
Ferritin 532 - last Thursday it was only 442

I'm so scared there is something wrong with me!

[PatchWorkPrunella]

You can have anaemia and haemochromotosis at the same time. Have the checked your liver count?

There's a Haemochromotosis UK support group on Facebook. Loads of advice on there.