Hh

Allergies, blood and immune system
1

Genetic testing shows a Hh (big H little h) result and the doctor says I am a therefore a 'carrier'. I have to be 'bled' at intervals, to reduce my ferritin levels.

Anyone have any info or advice for Hh people ?

Should my adult children be genetically tested?

I add this Hh tag to having Hashimoto's (low thyroid), Gilbert's Syndrome (high bilirubin) Diverticuloisis, IBS  and Chronic Fatigue Syndrome (which I'm coming through) - but not sure what of my tiredness and digestion problems to attribute to what!!! I sure would like some "how-to-get-the-best-daily-energy" insights and advice! Thanks.

2

HH, Hh, HC, and others - all meant to mean the same - hereditary haemochromatosis.  Did your genetic test (and I hope you asked for a copy) show Heterozygous C282Y or Heterozygous H63D?  This means you are a carrier with only one faulty gene.  If you are Homozygous C282Y or Homozygous H63D, or Compound Heterozygous C282Y/H63D, then you really do have haemochromotosis with two faulty genes.  Also, your TS% should be >45%.

Carriers with one gene, do not have a raised ferritin iron level because of the gene.  If you have a high ferritin level, it is called hiferritinemea and it has other causes, i.e. lifestyle - alcohol, smoking, junk food, sugar, or infection, inflammation, malignancy among others.

Personally, I still think it is good to venesect - how often will depend on how soon your haemoglobin rebuilds.  If it does not rebuild quickly, e.g. to enable you to have a venesection every week, it is not hereditary haemochromatosis.  Everyone , who is not anaemic, should donate blood every three months anyway.  Women, who are menstruating and do not have HH (Hh) can donate probably 1-2 times a years depending on how heavy their flow is.

I am hearing of a lot of people who have true haemochromatosis and Gilbert's Syndrome at the same time - I don't know anything about it personally.  I am reading that if we with haemochromatosis eat a lot of roughage/fibre, in particular pectin, we might drag some of the iron through our intestines instead of absorbing it.  Conjecture at this point, but I am willing to try it.  With diverticulosis, you need more fibre too, don't you?

IBS means they don't know what is causing your digestion/abdominal problems - could be too much iron, and of course CFS is another symptom of HH or iron overload, low thyroid, GS.confused

I am having good success with kefir - a strong yoghurt, about a tablespoon before meals.  You buy the 'seeds' from a health store, add good full cream milk, (organic best - I am not an organic pusher, but I can understand the benefits for this purpose), to it and leave out on a bench overnight or until all separates, strain it through a fine (reasonable size) colander into a bowl, pressing and stirring with a spoon, the remains kind of look like a flowerettes of a cauliflower.  Put them into another jar with some more milk, leave out on the bench, etc. and put in fridge until you are ready to strain again.

We need lots of antioxidants (but do not take vit c, OJ with food).  I leave mine till last thing at night.  I think my fatigue, still viscious 14-15 years after de-ironing, could be caused by the body pain I still get.  I think the body pain is caused by the deposits of iron in my muscles, possibly lymph glands, and bone marrow.  The iron deposits also affect my heart (arrythmia).

I am going to experiment with having lymph gland massage and see what happens, then muscle massage to see if that disperses the iron (probably into the lymph glands).  I have jumped the gun and used a pro-shiatsu massager on my back (it kneeds and squeezes so hard).  I bought it donkey's years ago and gave up using it because it was before I was diagnosed and I was not getting enough relief.

I have a particularly painful spot between my shoulder blades and after using the pro-shiatsu for about an hour, I had relief for a day and half, plus the fatigue seemed to have dissipated too.  So tried again with same results.  Maybe a professional massage will give me longer relief - cost could be a problem, so it would be back to my home one.

Years before I was diagnosed but suffering badly (my gp took 9 years to diagnose), I had a professional massage and he could feel this knot between my shoulder blades, so he used a couple of those vacuum glasses on my back, but pierced my skin beforehand.  The vacuum process drew blood and he was amazed at how black it was.  Now I know why!

Contact your country's haemochromatosis organisation to get the correct information, find out if there is a support group near you - it is good to trade stories and information.

Best of

 

3

Sheryl, Thank you so much for your comprehensive reply. First thing is, I will get a copy of those Hh results! In Australia, they will do gene testing if a patient shows consistently high ferritin levels over two years.

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

 

4

Hi Brenda, well I am from Australia too, and you can have a genetic test after only 2 high ferritin iron levels.  However, the TS% is an important marker as well.  Also if you have a 1st degree relative with HH, and maybe a 2nd degree.

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

 

5

Interesting. Red Cross seem the only ones round here that do collection. I let them know they need CFS on their form if it is a no-no, stands to reason! Not sure if it is donor or recipient they are concerned about!

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!

 

6

I'm pretty sure, Sheryl, that you should be a hematologist.

 

7

Nah, I would be no good - I only know about HH.lol

8

Hi Sheryl,

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

9

Hi Brenda, Last night I finally did what I have been promising myself to do.  I found my blood test results and put them on a spreadsheet.  Only the Iron Studies so far.  Some missing.

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

 

10

Oh that is well organised Sheryl. I shove mine in a filing cabinet, with the plan to sort some day!

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 

 

11

Well, knock me down with a feather - to put it politely!  I have recently been going to SN for blood tests as I started seeing my haemotologist privately, as opposed through the hospital.

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?

 

12

I googled it :

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

 

13

No, there is no explanation about haemochromatosis and muscle pain except that it is part of the symptoms and the iron deposits in the muscles.  There is no research on it (that is reported on the internet).  I have searched for years. I know someone else who has myositis and haemo.  Same as there is no good explanation about the continuation of fatigue and haemo.

14

I understand - muscle pain is a common symptom, but why, and why are some people symptomatic in this way and others not, that's the question. So, do you find that muscle pain lessens after having a venesection, and increases as time goes by, i.e. proportional with the deposit of iron overload ?

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

15

Mystery solved about the SN Iron Studies levels.  It seems they are using the levels that are appropriate for child bearing aged women, ie. still menstruating.  Well, I am way passed that and my age is recorded on the report.

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.

16

So the reference range is for people childbearing age? How dumb is that to not put an appropriate range when they know the patients age. Yep me too way past menopause ! I will make some enquiries as well  now.

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

 

17

Hi again Sheryl,

I have found out - re ferritin levels mystery - we need to ask our doctor at the time to specify on the blood test request that the reference range for a post-menopausal woman be the one used for this test. (My GP daughter told me this.)

Happy first day of Spring!

Yours,

Brenda

Brenda

18

I have been venesecting for years and not had to do this before.  It was a different pathology co - I guess they could tell by my age!  My haemotologist will be amused when I tell him this.

19

Hey Brenda, congratulations - that means you do not have iron overload! smile

And being a HH carrier only, you do not have the risk of the gene causing iron overload.  Other factors like fatty liver etc may cause it in the future, so just take care with that.  

I checked out citrus pectin (the recommended one) at my fave health store, and they were concerned as I was that it could plug up the works!  So, I think I will research that rather more before I try it.

 

20

How are you girls feeling now?  Have you found out anything else new?  smile