Haemochromotosis - early diagnosis & venous sections worked for me .

Allergies, blood and immune system
1

Following a strange episode of unexplainable things happening to me health wise over a period of 6 weeks ,eg pains & swelling of stomach , Dangerously high blood pressure , joint pains and severe fatigue - I was finally diagnosed with Haemochromotosis.

Having Health Insurance ( Gold option originally started through work ) for 20 years, I found that once this condition was diagnosed - the Insurance decided to only cover me for 8 venous sections , informing me that I would no longer be covered as it was a long term condition . 

Following my weekly venous sections it was incredible to note my very high blood pressure returned to normal , my joint pain stopped & I had no swelling in my stomach.  The transfromation incredible, I felt like a normal person again .

With no continuity to get levels down as first planned, I noticed while waiting for NHS appointment certain symptoms returned , I started to feel sluggish & joints started to hurt again.

Understanding my NHS apointment was not until January , (not wanting to risk the dangers of very high blood pressure returning ) , I had absolutly no choice but to pay for further treatments myself ,again following my recent 5th venous section I started to feel much better.

The point I am making my feritin level were not as high as many others who write in on this discussion forum - can anyone tell me why if my symptoms subside so quickly after weekly venous sections - why cant people get early diagnosis or treatment quickly to help them ? 

People are at risk so why are insurance company's abandoning people when at the early stages of venous sections , when it can be in my case seen perhaps as a preventative treatment .

To be honest all this is new to me, all I know I went from a healthy person to someone that was starting to find symptoms restricting me considerably almost overnight .

Has anyone had the same situation with Insurance ? I am disappointed to note it may seem peoples needs are not understood. Surely early diagnosis & treatment asap as a preventative measure is a better way forward for everyone including the NHS ?

2

Hi

I am at a complete loss the stories I keep hearing on this forum, my

Treatment has been first class from the start from my GP referring me

To the hemotologist, only 6 weeks wait,I saw the hemotologist 1.7.16

First venesection on the 6.7.16 I've had 12 venesection and seen the hemotologist

Twice in that time,and another appointment with them in January 2017.

4 more venesections before that.

But I am amazed at the shoddy treatment some of you are getting,.

Regards testing for hemochromatosis, most definitely a ferritin test should

Be carried out when ever people are tested for any illness, mine was

Only asked for by a locum GP who ordered the ferritin test,.

Good luck all

Philx

3

Linda, I suggest you phone your country's haemochromatosis association and talk to them about your insurance problems.  They advocate for us in all manner of ways.

They are also fighting the battle of creating awareness among people and doctors.  The more we support and help them the better.

 

4

Hi Linda, I am afraid I can't answer your question about insurance, but I hope you don't mind me asking about your ferritin level?  I have been refused venesections because my ferritin level is only 277.  My saturation has been slowly rising.  Last test, it was 52%.

I have so many symptoms of haemochromatosis (was diagnosed H63D last April through a DNA test I had to get done myself because the gastroenterologist said there was no way I could have haemo with such a low ferritin level)  but the haematologist my GP referred me to, refused to grant me an appointment saying that 277 was normal (I am a 60 year old female and up to 300 is deemed ok) .

Hence, I was just wondering what your ferritin level was?

As you say, treatment differs hugely.  Articles I have read all state that all the (many) health problems I currently have, could be related to HH and would probably be improved by venesections.  But no-one is helping me.  I did go to a blood donation appointment to try and help myself but they refused to take blood from me because I had a suspected angina attack in the summer.  I showed them the results of the investigations I had regarding this, but they weren't satisfied.  I know they were only trying to safeguard me (taking blood from someone with angina can cause a cardiac arrest due to the sudden reduction in blood level) but it is SO frustrating.  If I can't give blood myself and if the medics don't believe I warrant venesections, there isn't a hope that they would try me with the deferoxamine treatment.

I feel completely stuck and even the Haemochromatosis Society said that with a ferritin of 277 their opinion was, that my GP should look for alternative reasons for all the bad health stuff I am experiencing.  Like you, my stomach swelled up, in March 2015.  My blood pressure was sky high (now controlled with drugs), I was diagnosed with type 2 diabetes ( despite being a piscaterian eating oily fish for the last 40 years), I have fatty liver (why? on my "healthy" diet),  Hashimotos thyroiditis,  metabolic syndrome, severe hair loss, bad fatigue, "iron fist" joint pain....I could go on and on but I feel that all my life I tried to stay fit and active and eat the right things, and now I have ended up with so much wrong with me, which could all be related to HH and yet no medic is willing to think outside their robotic box and actually try to see if treatment would improve any of my conditions.

You really hit the nail on the head when you said that many peoples' needs are not understood.  

I hope that you continue to feel better now that you have been diagnosed and are having venesections.  Wishing you good luck and improving health in the future.

Lindsay

5

hi linda,

​i cant comment about the vene sections as im still waiting to start my treatment over a year of being diagnoised.

though i found it interesting about health insurance, Does this mean because we suffer from this illness that we cant get insured ?

​can we not get life insurance either ?

​I also have been suffering nearly all my life with the same symptoms but only got diagnoisd over a year ago

​though its been explained why it wasnt picked uptill now as its hard to diagnoise a woman due to their menstural periods

i was a anemic till last year,

so all of this has come to a shock to me

​Also im questioning my DR as i also have crohns & ulcerative collitis & its to my undertanding from this forum that it can be related to someone with any bowel diseases

​so im wondering why i asnt tested years ago having these for over 26yrs now

​As for your fatigue & pains mine are getting worse,

​though think its because i havnt started any treatment as of yet

​im also noticing im loosing eyebrow hair which is also stated is related to this illness

i hope you sort out your treatment