cottage cheese

Hi Sheryl

OK, thanks Sheryl

Hi Bonesaus

Thanks for your email

The medical technologist, whom i was referred to by my Cirrhosis friend, said that his products for organs and immune system, did not help his dog, who had tumors on his ear.  So, he gave him vitamin D and cottage cheese until the tumors disappeared.

bonesaus, you must be so lucky that you do not have any of the many complications caused by HH, otherwise you would be looking for solutions too.  It is the complications that people are seeking to find answers for.  A lot of people have digestion problems with HH, in the case that strathroy is talking about, he had duodenal ulcers, and I am sure that you would know that calcium (as in dairy products) have been scientifically found to reduce the uptake of iron, whether it really does for those with genetic haemochromatosis may be another thing.  Sometimes, I doubt it.

No, I have never heard of cottage cheese having cancer fighting properties but pro and pre-biotics (and fibre, and no red meat, and no smoking, no drinking, etc. etc.) are reported to help prevent cancer of stomach, duodena, colon.  And drs will tell you this.  Now, as so far I am not at risk of colon cancer, and even though I do have HH, I still eat red meat (and white, in case you are wondering), lots of green vegetables and a glass of red wine (the polyphenols in which are also said to help reduce the uptake of iron), followed by some cheese or yoghurt just in case it is helpful! 

I in fact have most of the HH complications. Iritable bowel syndrome for over twenty years. Osteoarthritis throughout my body. I have had three lots of surgery. I have tried almost all treatments with no luck. All drugs I have tried have had severe side effects that are worse than the arthritis. I am currently on the last drug my rheumatologist is prepared to try. I have been hospitalised three times with heart attack and arrhythmia. Liver disease. Endocrine disorder. Gastric reflux for twenty years. Type2 diabetes with neuropathy. Prostate cancer. Depression. Reduced dexterity. Cognative problems. All correctly diagnosed by my medical team. Both my parents were homozygous and died early. I buried one of my homozygous brothers last year as a result of prostate cancer.

I have tried a multitude of alternative therapies.

I have been researching HH for many years. I am very aware of populist theories that are either loosely based in science or are pure quackery. I have developed a good 'nose' for real knowledge vs populist half truths. Looking for solutions takes up a great deal of my time.

I stand by everything I have written as it is based in real science.

Then you are like the rest of us - looking for answers, and I sympathise with you.  However, I have not tried alternative therapies because they were obviously quackery at first glance.  As you have found out all scientific medical research have come up with nothing, although there is barely enough research, as it is so hard for researchers to replicate the complications with mice, PLUS get funding.  As there are no pharmaceuticals connected with HH (plenty with the complications of), there are none of these companies prepared to come up with funding.  Even so, some medical scientists get it wrong too, creating some hope till one realises that they are calling carriers only to have haemochromotosis.

It seems that your drs took too long to diagnose your HH too or you would not have ended up having such complications.  Unfortunately, you would have found that arthritis is not eased by venesection.  Once the damage is done, there is no going back.

A lot of drs will deny that HH causes a lot of what you have leaving people floundering.  There is no scientific and researched proof they say.  Although case studies, and MRI's have provided evidence, as do autopsies.  Bit late then!

Beta blockers prescribed for arrythmia (which dilate blood vessel also leading to the brain) caused immediate damage to my brain by letting more iron in - total fog, could not say more that a couple of words, brain not talking to bladder, could not remember where I was going or how to get there, could not read traffic lights.  Took 3 more years to be able to form a proper sentence and still have problems another four years later.  That is cardiologists for you - did not have any idea what HH was about.  Yes, reduced dexterity, cognative problems too, but excellent haemotologist believes that no more problems exist once de-ironed.  No one believes that it affects brain, except my Head and Neck Oncologist who is looking into it - has referred me to a neurologist.  He treated me for a deadly tumour of parotid gland, had tumour on my pit gland too. Lots of other things, same as you.  An uncle died of cerabella ataxia - brother of my father who would have been homozygous, who died from cancer before being tested for HH.

Does your medical team believe that HH has cause your cognative problems?  How are they treating you?  While I was given Carbergoline for my prolactinoma on my pituitary gland, I see from a case study that a fellow with cerabella ataxia caused by iron overload (HH based) was also given Carbergoline to treat the iron in his brain.

Some people are telling me in person (not via blogs like this) that their dieticians say they can cure HH with diet.  I tell them not so, but some prefer to believe it.  The dieticians are all about selling products - they do not even know how to deal with obesity, or they avoid appropriate advice in order to keep the person coming back.

A lot of people are still learning and we should provide reasons why they don't or won't work, so I try to be gentle.

Latest news re diabetes is that the medication for it can be anti-aging and health improving (not just for diabetes).  Drs have found that people on this medication are living longer and healthier than those who do not have diabetes.  They would have to be the ones that have seen the light and changed their lifestyle.  I saw the word Metformin on the tv screen.  So far I have not been diagnosed with diabetes, although I have read medical research that said we can often have the symptoms of diabetes without actually having it.  I do my best to eliminate all sugars and starches because my body just can't deal with it.  Many years ago, I was also told I had IBS but actually I had 6 duodenal ulcers - that was years before it was found that the Helicobactor pylori bacteria causes ulcers.  It thrives on iron, and keeps returning to me despite appropriate treatment.

I don't believe in 'syndromes' - they are actually symptoms of something.  Like my so-called CFS was really HH - I refused to accept that CFS was the end of story.

Very interested to hear how your neurological problems are being treated.

 

Hi Sheryl 

Are you taking anything for your IBS condition?  I have Joe on L Glutamine

Hi Bonesaus and Sheryl

Since we know that raising hepcidin will lower iron serum, we should google, what will raise hepcidin, naturally....maybe a food???

The medical research experts have searched for that, i.e. Dr Ganz.  So far they have been unsuccssful.  It is a peptide hormone, and a team is working on replicating it.

I have, in person, face to face, talked to top Australian HH researchers who head up research teams (when they get the funding), including one lot working on iron overload of the brain, as well as a top researcher from Canada.  One of the Australian research leaders is one of the top HH researchers in the world and his research is referenced in all legitimate HH studies around the world, as are a lot of the others.

They are Prof Lawrie Powell, Prof Martin Delatycki, Prof John Olynk, Dr Dan Johntsone and Dr Liz Milward (brain), Prof Graeme Carroll (arthropathy) - all Australian, and Prof Paul Adams (Canada), so I am well informed.  Also Dr Greg Anderson who studies iron metabolism.

So far there are no easy answers.

 

Hi Sheryl

I think i found something that will raise hepcidin here:

http://www.ncbi.nlm.nih.gov/pubmed/17951471

Hi Linda, sounds good but only for obese people whose leptin (satiety hormone) has stopped working, therefore they keep eating beyond their needs.  Real HH people tend to be slim, therefore their leptin hormone is working,

Obese people's ferritin iron levels are increased due to inflammation, etc. and the pressures on their organs by obesity.  Therefore increasing their leptin levels would give them the 'full up' message, allow them reduce obesity and their inflammation and therefore their ferritin iron levels.

That is the trick, finding a way for their leptin hormone to return to working status.  It usually takes self-discipline, however, I have heard of various claims of certain drugs activating leptin.  It would be a major breakthrough in the prevention of obesity when they do work it out.  But not for people with true hereditary haemochromatosis, who usually have the appropriate working level of leptin.

Anyway, it was published in 2007 and nothing has come of it.

You really need to spend time studying hereditary haemochromatosis to understand the complexity of it.  Otherwise you are wasting your time clutching at straws like above.  Believe me, if there was an answer, we would know about it.

  

Hi Sheryl

Thanks again for your email.  I found a better article

To save time reading the whole article if you click the link, I copied and pasted the main paragraphs under the link for you.  If you click the link, the paragraph below is on page 4, ....or just read what it says below the link, as i copied and pasted it for you

The title is Leptin increases the expression of the iron regulatory hormone, hepcidin in HuH7 human heptoma cells

http://www.researchgate.net/publication/5895187_Leptin_increases_the_expression_of_the_iron_regulatory_hormone_hepcidin_in_HuH7_human_hepatoma_cells

In addition to  liver disease, there  is an increasing  body of

evidence that suggests a direct link between being overweight

and having poor iron status (22–28). The hypoferremia noted in

obese subjects appeared to arise from a combination of 2 distinct

mechanisms:

1) the development of iron deficiency (27,28) and

2) the presence of chronic low-grade inflammation that resulted

from the enhanced production and release of a cocktail of pro-

inflammatory cytokines and adipokines from the adipose tissue

(29,30). These inflammatory stimuli in turn lead to an increase

in  the  expression  of  hepcidin,  which  once  released  into  the

circulation, impaired the recycling of iron by reticuloendothelial

macrophages  (19)  and  the  absorption  of  iron  by  duodenal

enterocytes (20,21), resulting in hypoferremia (9,43).

Just in case someone has suggested you try ALLOPURINOL, I have found that it should not be taken by those with HH.

I guess there are very good reasons why this does not relate to HH, or we would be celebrating.  As HH people are usually not obese, our leptin levels are good and working, but do not increase our hepcidin levels, nor turn them on.  Perhaps the pathways are inappropriate for HH.  I notice the injections into the liver were not sustainable.  There is still a long way to go.

I notice none of the references refer to HH.  The one that interested me though, was ref #20, wherein they tried to synthesise hepcidin but it still did not work as they think they have to find a way for it to work with the duodenum.  Once again, there is still a long way to go.

I am confident that once there is a successful breakthrough I will be one of the first to know through my association.

Is Joe obese?  Is his problems more from obesity than from HH?  Is he getting better with optimal diet?   Look into Reservatrol also as an antioxidant.  Every once in a while I buy some when I feel I need an extra boost, which is all the time really, but it is costly, so it is a treat once in a while, and of course I share it with my husband too.

I read today that Reservatrol is a breakthrough for those with Friedrich's Ataxia (sp?), and it is from natural resources, and this was discovered by one of our Australian HH researchers.

 

Hi Sheryl

Thanks again for your email and interest.  

Joe was diagnosed with advanced dementia by an outside doctor that the nursing home hired.  She said that it is not reversible and he only had months, not years to live.

 

Oh dear, that is sad.  Everything else he has pales in comparison, doesn't it?  HH is known to be linked to dementia, although not yet proven by medical research.  If you google dementia and iron overload, you will find something.

Unfortunately, late diagnosis has damaged Joe beyond repair.  You could tell his story to your country's HH assoc and it could provide more evidence that we should all be screened at an early age.  They may have a process to collect such information.

You have worked hard to try to free him of his illness, and I commend you for it.  Perhaps you could try to find out what you can do to honour him to help reduce further incidences.  From your endeavours displayed on this blog, I know you are capable of it.

Good luck Linda, and know that the HH community will be thinking of Joe and your endeavours.

 

Hi Linda

So sorry to hear about Joe. I know it is not much comfort  at this time but it seems Joe was able to live a long life inspite of having an undiagnosed case of HH, many with this disease are not so lucky.

Hope you will stay active in the forum and should you have any questions I'm sure you will find many here willing to help.

BTW My family is currently caring for a 94 year old relative who is in end stage dementia her prognosis is just a matter of weeks not months.I know how difficult these months are going to be for you and I'll keep you and Joe in my prayers.

Hi Sheryl

Thank you, Sheryl.  Some of the members of the church that he belongs to are praying for him.

Hi Jwrhn1951

Yes, he has had a pretty full and successful life

Thank you

I have been taking allopurinol for years. 

I think the issue is that hemochromatosis is often associated with a condition called psuedo-gout which is caused by calcium crystals and the allopurinol has no effect on.

In my case I have both gout with  uric acid crystals and psuedo gout with the calcium crystals..

Interestingly I seem to have gout in my legs and feet which does respond to the allopurinol and psuedogout in my arms and wrists and the phelobotomy's reduced the swelling and improved the range of motion but didnt do anything for the pain. 

Cholchine somewhat for both.

Thanks for that info - I had a couple of people in my group who have bad reactions to allopurinol while their rheumatologist was insisting they use it.  They found on the web (and I checked) that a dr was saying not to use it.  I am glad it is working for you.

They believed they had the 'real' gout although I spoke to them about 'pseudo gout'.  I will keep cholchine in mind next time I am asked because we all respond differently to different things.

 

Hi Sheryl

Where does it say that the injections were not sustainable?

thanks

Linda