Hh

I am confused now, as the doc seemed to think it was the Hh causing the high ferritin levels. From what you say, I could suspect sugar or inflammation or frequent infection......

The Blood Bank do not want the blood of CFS people, they told me after much time and enrolment paperwork (in which they failed to ask that!) so down the drain it goes at intervals - but this procedure will likely be needed only once or twice a year, I am told.

The high fibre approach is a total catch 22 for people with IBS, as it can really upset the digestion, which may explain why many of us land up with diverticulosis!

I will pursue kefir, thank you. Currently trying daily L. Plantarum pro-biotic, and a gentle fibre, Psyllium, though I am not so sure about the latter!

I can identify with aches and pains and a bit of heart arrhythmia when waking up, but of course one doesn't know what to attribute it to, so it is interesting to hear you connect it with iron overload.

All the best with the massage approach - I must say, I have not had many in my life, but do feel fantastic afterwards!

Thanks again, Sheryl, for your time and really helpful thoughts. Best wishes,

from Brenda

The sugar, alcohol, smoking, junk food, etc causes a condition called fatty liver which leads to iron loading into the liver, same with the inflammation, etc.

I did not know the Blood Bank refused CFS people - and as you say, they don't ask.  They would probably assume it is from a virus.  I know they will not take your blood if you tell them you have HH, unless a dr has completed a (now online) form.

Check out if you are ok with pectin.  I don't know what form it comes in - I have to check that myself.  I know pectin sets jams!!  I have also been trying  aloe juice.

There is a dr in my area who tells all his patients who have a high ferritin level that they have haemochromatosis.  He seems to have gone feral with it.

I was told I had IBS when really I had 6 duodenal ulcers, and ultimately found out I had helicobacter pylori, which causes the ulcers.

Let me know what your test results are, apart from the genetic test, what your SF and your TS% is.

Cheers

Sheryl

I will get those Hh results and let you know, thanks, also look into the role pectin might play. Well I had wondered about a swathe of people popping up with the full haemochromatosis almost without symptoms, seemed odd, perhaps it is flavour of the month indeed. (We are Sunny Coast, and you?)

My biggest plus on off-days is Ural, an alkaliser which I take a sachet of (though not too often!) when I feel really acidic throughout and wiped out of energy - it works wonders, seems to balance my whole system.

Fatty liver figures.

Thank you!

I have a copy of my results. Thanks for your interest.

Gene test  Feb 2013, Haematinics blood tests then and every 4-5 months since. Latest in June 2014.

H63D Heterozygous Mutation Detected (=carrier)

Trans Sat 33,41,v, 36,46 (range 20-55)

Ferritin 142H, 185H,v,136H and 168H (range 25-110)

I had venesection where I put the little v above - i.e. August last year.

Thanks, Sheryl!  Any comments thereon?

I am considering pursuing daily Milk Thistle and Choline for awhile - till next blood test. On the lookout for kefir and pectin too. Cleaning up the liver!

All the best with your massages etc.

Yours,

Brenda

However, the normal range on my blood tests for TS% is 15-45% which puts one of your results over (46), and Ferritin normal range is 10-200 which makes none of your ferritin results high.  What exactly is Haematinics?  I have not heard of Iron Studies being referred as that.  Is it a name of a pathology company?  Their ranges seem to be out of whack with the rest of the HH world.

I do think it is good for all of us to donate blood anyway.  So keep doing it when you can, and take advantage of followup tests.

I use Dr Sandra Cabot's Liva Tonic in an attempt to keep my liver healthy.  So far, so good.  It was fantastic when after having two surgeries in close proximity and I was left feel nauseous for weeks, till someone mentioned what the anethesia would have done to my liver.

It helped my husband when he was nauseous from having chemo too.

I think your adult children should be genetically tested if a dr will do so on those results.  They could have inherited your one faulty gene and perhaps a faulty gene from their father.  Also they are likely to pass that one faulty gene onto their children even if it is only one.  So if they have a dr who is willing to do it, or even your dr, it is beneficial to know.

However, generally a dr will not genetically test unless their ferritin iron level is high x 2 times.

Good luck

My blood tests are all Sullivan Nicolaides, so the numbers and wording come straight  off their paperwork report. Odd then, though I do know reference  ranges can be different place to place. Perhaps the tests differ somewhat.

i do wish my blood did not have to go down the drain, but if Red Cross do not want it, that's probably the only way to go and I will set up another lot soon. 

Good to hear that about Livatone , as that is what I have just started, had good results in well being some years ago from doing Cabot's whole diet actually. Great that it has helped you both with serious medical challenges. As soon as I can I will get my hubby on to it too, as he is on heavy drugs (for myosotis) and they can attack the liver. In fact he has monthly blood tests to check on this, and no problem there to date, but why wait for one!

I will suggest to our kids again that they each try to get the gene test. Out of the 4,  statistics say two could be carriers. One daughter  is actually iron deficient at present, should I say iron-ically!!

Have a good weekend, and thanks again, I am so appreciative of your advice on this forum,

Brenda 

So I checked the last reports and I see they have changed the goalposts!  Their Ferritin range is lower (25-100) and their TS% is higher (20-55).  No wonder there is a sudden increase of people being told they have haemo.  Might be a good thing - more genetic screening!  As long as drs interpret it correctly.

And there was that word - Haematinics!  Thank you for pointing that out.  I will have to ask SN about it next visit.

Myositis - I have wondered if that is my problem with my muscles and why I get so much pain.  Is there a connection to HH?

Definition—

Haematinics are the chemical agents or substances which are required for normal erythropoiesis(=the production of red blood cells).

Do ask re those goalposts. Even the range you have is slightly different from the S&N one I have for June '14.

Google 'Haemochromatosis and muscle pain' - I think you may find your explanations right there rather than in myositis, which is rare, and diagnosed by muscle biopsy.

Hope you do well managing this, Sheryl.

Best wishes from a sodden south east corner,

Brenda

An interesting website article on haemochromatosis I just read was on kidshealth .org, but you probably know all that info and heaps more. I have not pursued the topic much being Hh, but was concerned that I was still building up iron as "only a carrier". You however have helped me a lot with that, thanks.

I feel that fatigue is the body's first response to unaddressed problems, and if these become chronic, so does the fatigue! Once it become CFS it is then a problem in its own 'right ' with multifactorial causes and needing multifactorial interventions, to claw one's way back towards feeling better :-(  At my CFS worst, I felt really and constantly 'unwell', with only varying degrees of 'tired', so it is somewhat of a misnomer.

Sheryl, are you vegetarian? Do you avoid certain meats and ironrich veggies, or wouldn't that help? You have been battling this for many years. Well done with helping others along the way.

Myositis is characterised but progressive muscle weakening, which can be to some degree measured as well as helped; some tell-tale indicators (other than exertion exhaustion, and in some people muscle-pain) are a person's struggles with stairs, getting out of chairs, leg dragging, and raising up on tiptoes - but the main definitive diagnosis is via changes seen in leg muscle biopsy. Treatment my hubby is on is methotrexate, after a year or so with prednisone as well.

Bye for now, have a good and blessed Sunday,

Brenda

As you mentioned you have adult children, you may have gone over that hill too, so the levels you have are not an issue.  But, as I said, it is still good to "donate" in some form so that a problem does not build up as time goes by.

No, I am not vegetarian and it is not encouraged to reduce consumption of iron inclusive foods.  It makes no difference - a single venesection can remove the iron in 30 kgs of red meat (or something like that!).  Some people don't eat red meat out of preference.  Liver is high so not encouraged.  Just about every food has iron in it.  There is more iron in the dirt on spinach leaves than there is in the leaves themselves.

Clams are listed to have such a high iron level that I think it is a typo.

Good luck, and contact Haemochromatosis Australia if you want to double check on any of this info.

No difficulty avoiding clams and liver :-) and having 30 kg worth drawn out occasionally, would miss a few good bbqs otherwise.

Much appreciated, and hope you get some breakthroughs Sheryl re pain and other areas of need.

best wishes,

Brenda