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[orchid]

After all my problems over the last 15 years, depression IBS symptoms...the list goes on! I have been diagnosed with haemochromotosis a genetic disorder where the body can't get rid of iron. It was picked up by a ferritin blood test after I saw the dr yet again for abdo pain and fatigue. The treatment is blood letting to get the iron down. Anyone else have this? I feel so let down by my gp for not picking this up a long time ago....

[Kathleen]

Hello orchid.

I'm so sorry you've had this diagnosis, now you will be getting the proper treatment is it possible that your other health problems will resolve?

I understand patients need to be reviewed a few months after beginning iron tablets to check that iron is being absorbed at the correct rate. If your GP has prescribed these tablets in the past but has not checked your levels until now, that is indeed negligent.

I hope you feel better soon and sending hugs.

K.

[Taz2]

It's really bad that your GP didn't pick this up orchid but, hopefully, now that you have discovered your problem then you will begin to feel better. Have you been given much information on the condition?

Taz x

[Taz2]

There is clear information here orchid. You will see that it is considered an uncommon disorder so is not routinely screened for. Thank goodness you have discovered it now. http://www.nhs.uk/conditions/haemochromatosis/Pages/Introduction.aspx

It seems that treatment is very successful and I'm sure that your tiredness and joint pain will improve enormously once you begin treatment.

Taz x 

[countrybumpkin]

I had a friend who was diagnosed with this later in life and hers was only picked up on after she had to undergo cancer treatment not that it was implicated in any way with her cancer.

She attended hospital every week for a time for " blood letting" then the gap got longer until it was every few months.  This was quite a time ago (14years).  Obviously it was not easy given her other problems for her to know what was made better but she def was not as tired a few months on from the blood letting.

Now that it has been identified the treatment is very successful and I would guess quite alot of your health symptoms could improve once treatment is underway.

Ferretin levels are rarely tested unless someone is showing as aneamic and anyone with haemochromatosis is never anaemic meaning its harder to detect.  After my friends diagnosis I asked for and got my ferretin levels checked and mine are always near the bottom but my haemoglobin levels are always near the top but have been told that often the case in women!

[orchid]

Thank you for your replies and good wishes ladies!
It is the fact that my ongoing abdominal pain wasn't investigated that is so annoying, but yes I'm relieved that they will now see my symptoms weren't all in my head. All my other bloods were normal, but I am still anxious that there may be some damage especially my heart as the palpitations and ectopic beats seem more frequent. I have an initial assessment this Wednesday but my consultant appointment isn't until August, which seems ages away when you feel unwell.

[Taz2]

Hopefully you will be fine orchid. Ectopic beats are common and palpitations also occur during menopause so these may not be related at all.

Have you been given advice about reducing your intake of iron rich foods such as fortified cereals etc?

Taz x

[orchid]

Hi Taz
Yes, got all the info thanks! I had been taking a multi-vitamin daily with 14mg of iron in it! Needless to say I have stopped it and modified my diet. I have been lead to believe the ectopics were all meno related, but now I'm beginning to wonder. Hopefully all this will be checked out. I will also need genetic testing especially as I have two daughters who may also have it. My mother always had stomach problems, biliary colic, digestive problems and she died at the age of 61. She had developed breast cancer, but she probably had haemochromotosis too and may have been a contributing factor in her death. Interestingly enough, Ive also just read an article titled IBS and Ironoverload, which was very interesting, in that it states haemochromotosis maybe the cause of IBS in many people?

[Taz2]

I know when I self-prescribed iron for myself I had the most horrible stomach problems as my body tried to rid itself of it so I guess you could be right!

Taz x

[CLKD]

Has your GP referred you to a Genatisyst (sp)?  If this is uncommon you may become part of a 'study' and any info you have can be used to help others with this condition.   

I thought that 'blood letting' was medieval ……..  ……. is your blood 'cleaned' ? I'm intrigued and very nosey 

[Taz2]

Read this link CLKD http://www.nhs.uk/conditions/haemochromatosis/Pages/Introduction.aspx  It's similar to giving blood - you are not cut to let the blood out as in medieval times!

Taz x

[CLKD]

Interesting.  So am I right in thinking that after removal of the pint each week, that the new blood doesn't have as much iron ………  and that by avoiding iron-rich food stuffs the body can maintain a better level of Fe?

[Mardy]

Hi Orchid - It is quite rare a condition. My husband has it & he too was ages in being taken seriously & finally getting a diagnoses.

He has been letting a pint of blood a fortnight for a couple of years & his iron levels are down, but not down far enough to only do letting every 3 months - which is the aim.His iron levels were sky high, but he doesn't have any organ damage, but he does have bad arthritis in his joints.

It is indeed inherited & you should ask any siblings or off-spring to be tested for it as you get it from both parents with the defective gene.

You should be tested for organ damage & also have x rays done for achy joints. Hubby had to have a hip replaced early on this year & his ankles are bad. He did get to see a physio & that has helped a lot. I would suggest you ask to see one & also do some gentle exercises like swimming etc, yoga to aim to keep supple. Vitamin C isn't a good one to take, but I can't remember why it's harmful something to do with absorption of another Vitamin - D? Perhaps. Worth getting clued up & chasing up/hassling to get seeing consultant so you can get the letting started - venistration. Hubby has his done at GP's as it's 70 miles to hospital!

I think it is rarer in women & does/can appear symptom wise at meno....So not fair.

Hugs to you - all the best.
Alcohol isn't helpful in extreme, nor is red meat especially liver, but occasionally isn't going to matter. Hubby was very tired before diagnoses - that is why we knew something wasn't right. he is tired after his letting, but not as tired as he was at first - it's improving. Thing is he's allergic to a lot of painkillers so he can't have them - which isn't great at times.

[Taz2]

What a lovely, helpful post Mardy.

Taz x 

[orchid]

Hi Mardy

Thank you so much for your post, it's good to hear other people's experiences! Luckily I don't have any major joint problems at present, mine symptoms are mainly fatigue, abdominal pain and low mood. Unfortunately my main appointment isn't until Aug 24th. I was hoping I'd be seen earlier at least to have blood taken.  I hope your hubby is keeping well! Thanks again, take care. X