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The mild meeting with a Hepatologist

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Maritana
Maritana

Hello Sheryl and everyone else.

I promised to post a report after I had my first meeting with the hepatologist. I had prior to this meeting got my genetest back as compound heterozygote (it also said that this gene mutation pair could cause a small risk of developing mild hemochromatosis)

The latest bloodtest was 576 ferritin and 84% saturation. With this in mind I took the train to the big scary hospital in the south of Stockholm to meet Dr. Steen for some kind of confirmation and advice how to progress. I guess. My first reflection about this man was that he seemed very sharp, smart and correct and not at all tired and uninterested like my former GP´s. However, after a while I understood that this man was entirely interested in my liver levels which he was proud to present as unaffected. Then he just asked me about if I have had any blood transfusions, major surgerys, alchol intake. It was like he could´nt really believe that my ferritin levels were correlating with my compound heterozygote gene set. When I told him all about my weird symptoms he replied "hmm, yes, some patients have informed me of some problems like this" (!) So at this point I understood that he decided already and would play down my illness and I therefore ponted at my ferritin level and something about this cant be that healty right?  And then he gave the 1000 ferritin answer about damage organs etc. The meeting ended with the question "So, do you want to do some blood lettings?" As if I would be cool just to give it a miss... I persisted that this would be preferable and left with another 3 weeks waiting period to do phlebotomy. 

However, afterwards I still find myself thinking about the causes of my crappy health. If my symptoms are real HH or just stress and fatique from working too much. What if my symptoms are sign of a depression and not HH? After all it says "mild HH" in my diagnosis?  I´m praying for the de-ironing phase will give some answers. 

1 like, 5 replies

5 Replies

  • sheryl37154
    sheryl37154 Maritana

    Posted

    That is why I generally recommend that people diagnosed with HH ask for a referral to a Haemotologist to monitor your blood levels and who can then refer them to a Hepatologist/Gastroenterologist if there is liver damage.  Not that a haemotologist knows much about the complications of HH, but at least they can get the blood levels right.  So, good, you don't have liver damage.

    Try to ensure your Hepatologist de-irons you to at least <50 then you can let it build up a little.  it sounds like you can be in the driving seat here.  generally depression dissipates with venesections.  in hh, depression has a physical cause - not a psychological cause.  as you have been diagnosed fairly early, the fatigue should dissipate also.  if you are able, try to be a bit kinder to your body (workwise) while you are de-ironing.

    if the hepatologist is resistent, give him a copy of the following, particularly noting the details on page 2:

    http://www.irondisorders.org/websites/idi/files/content/854256/hhc%20all2011.pdf

    i don't think your hh is so "mild" but it is not severe either.  thank goodness.  being h282y/h63d, your levels could reduce very quickly.  aim for fortnightly for about a month at least, as long as your serum iron is high and your hb is good too.  then go monthly till de-ironed, then 3 monthly.  don't forget i am not a medical person - this is generally the experience that people have with your ferritin level.  if he wants you to go more frequent, then do so.  just don't stop your venesections.  if someone says you don't have to be venesected any more, don't believe them.  the iron loading never stops (except in my husband's experience, he stopped loading iron after he had chemo for hodgkin's lymphoma - but he was homozygous h63d too which is considered 'mild').

    remember this is treatable - much better than having chemo too - so try not to worry about it.  if you do, it may cause you psychological depression and anxiety.  find others with hh and discuss your experiences.

    there are some benefits, people with hh generally have low-normal blood pressure, low-normal cholesteral, can lose some blood without having major problems, and probably more.

    did you watch the tv series "the vikings", a collaboration between canada and ireland.  there were lots of clues about hh.  first the earl was impotent (don't worry, you have not had hh long enough for that to be a problem), the star of the show, ragnar (who was definitly not impotent), survived massive blood loss from injuries, they always seemed to have a metalic sheen on their skin, another character after riding a horse for days to visit another earl and left waiting out of the warmth of the fires, said "if i have to stand here any longer, i will rust!".  he was later seen looking decidely grey/green like he had haemochromatosis induced diabetes. the son of ragnar was renamed beorn ironside, after bravery against the english, his mother called him beorn iron (for short).

    keep us updated to let us know how your venesections are going. then="" you="" can="" let="" it="" build="" up="" a="" little.=""  it="" sounds="" like="" you="" can="" be="" in="" the="" driving="" seat="" here.=""  generally="" depression="" dissipates="" with="" venesections.=""  in="" hh,="" depression="" has="" a="" physical="" cause="" -="" not="" a="" psychological="" cause.=""  as="" you="" have="" been="" diagnosed="" fairly="" early,="" the="" fatigue="" should="" dissipate="" also.=""  if="" you="" are="" able,="" try="" to="" be="" a="" bit="" kinder="" to="" your="" body="" (workwise)="" while="" you="" are="" de-ironing.="" if="" the="" hepatologist="" is="" resistent,="" give="" him="" a="" copy="" of="" the="" following,="" particularly="" noting="" the="" details="" on="" page="" 2:="" [url=http://www.irondisorders.org/websites/idi/files/content/854256/hhc%20all2011.pdf=""]http://www.irondisorders.org/websites/idi/files/content/854256/hhc%20all2011.pdf=""[/url]; i="" don't="" think="" your="" hh="" is="" so="" "mild"="" but="" it="" is="" not="" severe="" either.=""  thank="" goodness.=""  being="" h282y/h63d,="" your="" levels="" could="" reduce="" very="" quickly.=""  aim="" for="" fortnightly="" for="" about="" a="" month="" at="" least,="" as="" long="" as="" your="" serum="" iron="" is="" high="" and="" your="" hb="" is="" good="" too.=""  then="" go="" monthly="" till="" de-ironed,="" then="" 3="" monthly.=""  don't="" forget="" i="" am="" not="" a="" medical="" person="" -="" this="" is="" generally="" the="" experience="" that="" people="" have="" with="" your="" ferritin="" level.=""  if="" he="" wants="" you="" to="" go="" more="" frequent,="" then="" do="" so.=""  just="" don't="" stop="" your="" venesections.=""  if="" someone="" says="" you="" don't="" have="" to="" be="" venesected="" any="" more,="" don't="" believe="" them.=""  the="" iron="" loading="" never="" stops="" (except="" in="" my="" husband's="" experience,="" he="" stopped="" loading="" iron="" after="" he="" had="" chemo="" for="" hodgkin's="" lymphoma="" -="" but="" he="" was="" homozygous="" h63d="" too="" which="" is="" considered="" 'mild').="" remember="" this="" is="" treatable="" -="" much="" better="" than="" having="" chemo="" too="" -="" so="" try="" not="" to="" worry="" about="" it.=""  if="" you="" do,="" it="" may="" cause="" you="" psychological="" depression="" and="" anxiety.=""  find="" others="" with="" hh="" and="" discuss="" your="" experiences.="" there="" are="" some="" benefits,="" people="" with="" hh="" generally="" have="" low-normal="" blood="" pressure,="" low-normal="" cholesteral,="" can="" lose="" some="" blood="" without="" having="" major="" problems,="" and="" probably="" more.="" did="" you="" watch="" the="" tv="" series="" "the="" vikings",="" a="" collaboration="" between="" canada="" and="" ireland.=""  there="" were="" lots="" of="" clues="" about="" hh.=""  first="" the="" earl="" was="" impotent="" (don't="" worry,="" you="" have="" not="" had="" hh="" long="" enough="" for="" that="" to="" be="" a="" problem),="" the="" star="" of="" the="" show,="" ragnar="" (who="" was="" definitly="" not="" impotent),="" survived="" massive="" blood="" loss="" from="" injuries,="" they="" always="" seemed="" to="" have="" a="" metalic="" sheen="" on="" their="" skin,="" another="" character="" after="" riding="" a="" horse="" for="" days="" to="" visit="" another="" earl="" and="" left="" waiting="" out="" of="" the="" warmth="" of="" the="" fires,="" said="" "if="" i="" have="" to="" stand="" here="" any="" longer,="" i="" will="" rust!".=""  he="" was="" later="" seen="" looking="" decidely="" grey/green="" like="" he="" had="" haemochromatosis="" induced="" diabetes.="" the="" son="" of="" ragnar="" was="" renamed="" beorn="" ironside,="" after="" bravery="" against="" the="" english,="" his="" mother="" called="" him="" beorn="" iron="" (for="" short).="" keep="" us="" updated="" to="" let="" us="" know="" how="" your="" venesections="" are="">

    if the hepatologist is resistent, give him a copy of the following, particularly noting the details on page 2:

    http://www.irondisorders.org/websites/idi/files/content/854256/hhc%20all2011.pdf

    i don't think your hh is so "mild" but it is not severe either.  thank goodness.  being h282y/h63d, your levels could reduce very quickly.  aim for fortnightly for about a month at least, as long as your serum iron is high and your hb is good too.  then go monthly till de-ironed, then 3 monthly.  don't forget i am not a medical person - this is generally the experience that people have with your ferritin level.  if he wants you to go more frequent, then do so.  just don't stop your venesections.  if someone says you don't have to be venesected any more, don't believe them.  the iron loading never stops (except in my husband's experience, he stopped loading iron after he had chemo for hodgkin's lymphoma - but he was homozygous h63d too which is considered 'mild').

    remember this is treatable - much better than having chemo too - so try not to worry about it.  if you do, it may cause you psychological depression and anxiety.  find others with hh and discuss your experiences.

    there are some benefits, people with hh generally have low-normal blood pressure, low-normal cholesteral, can lose some blood without having major problems, and probably more.

    did you watch the tv series "the vikings", a collaboration between canada and ireland.  there were lots of clues about hh.  first the earl was impotent (don't worry, you have not had hh long enough for that to be a problem), the star of the show, ragnar (who was definitly not impotent), survived massive blood loss from injuries, they always seemed to have a metalic sheen on their skin, another character after riding a horse for days to visit another earl and left waiting out of the warmth of the fires, said "if i have to stand here any longer, i will rust!".  he was later seen looking decidely grey/green like he had haemochromatosis induced diabetes. the son of ragnar was renamed beorn ironside, after bravery against the english, his mother called him beorn iron (for short).

    keep us updated to let us know how your venesections are going.>

    • Maritana
      Maritana sheryl37154

      Posted

      I´m so grateful and touched by your empathy and interest in helping others, Sheryl. I feel your answers really have helped and strengthen me and I really wish I could do something for you in return! I havent actually watched "The Vikings" but heard of it. Seems very well researched though! So, we HH-people are all ancestors to vikings then? So, being full of iron must have had a positive effect at that time otherwise this mutation would have stopped but of what reasons? Surviving massive blood loss in battles?! 
    • sheryl37154
      sheryl37154 Maritana

      Posted

      Thanks, you will be able to pass it on in return when you encounter a newbie with HH.  Supposedly, the mutation was from both the "Vikings" and the Celts which I believe orginated from Viking country anyway and for 30,000-40,000 years they wandered through Europe eventually ending up in Scotland, Ireland and Wales.  Eventually at about 400AD the Vikings raided England, and afterwards Nordic peoples travelled to the British Isles to settle and farm.  So we have a mix of Celtic and Nordic, both carrying the mutations.

      I don't believe "the Vikings" (the warriors) themselves were responsible for spreading the mutation, as their job was to pillage and burn, rape and slash, so I don't think those women were left in any position to pass on the genes.  If they were, Eastern Russia would be full of HH too, which they raided for thousands of years before they decided to look west.

      The Celts bought in the Iron Age long before reaching the British Isles, using iron to the max, food storage, bowls, weapons, armour, etc., as did the Nordic peoples, absorbing too much iron into their bodies over thousands of years, thus ACCIDENTLY mutating their dna.  The fact that this made them survive massive blood loss during their constant battles, left them the superior races.  Of course, they did not know why they were.  Both the Celts and Vikings were an angry lot - must have been the effects of iron overload on the brain.  Back then they did not live very long in years anyway.

      If you get a chance to watch "The Vikings" on video, do so.  Great history lesson too.  Travis Fimmel, who plays Ragnar, is Australian, although Fimmel sounds like a very Nordic name.  You will be able to pick out the HH clues now.

      Cheers

    • paula1969
      paula1969 sheryl37154

      Posted

      Thanks for that explanation on the Vikings! Two years ago I found out that I am descended through the Bruce's/Stuart's on my mothers side (her father is from Shetland). My fathers family are from Galway.

      Just recently, at 45, I was diagnosed with PMR & GCA, and also Hemachromatosis (sp?). For as long as I can remember, I've always had a distinctly metallic taste in my mouth and also, I don't know if this has anything to do with it or not... I have always had a very extreme reaction to static electricity and shocking people with touch, animals also. I often blow light bulbs and small appliances. Weird I know. I should probably post this in a separate discussion to find out... But saw your knowledge on the Vikings and thought you maybe able to help.

      Many thanks in advance, Paula :-)

    • sheryl37154
      sheryl37154 paula1969

      Posted

      Hi Paula, I had a chuckle because when I was younger I had the same problem with static electricity (I live in a humid climate now), and when I walked into a room the light would dull and then brighten when I left, or vice versa.  We go through a lot of light bulbs, even the supposed long life ones, that we have moved to led bulbs.  I never made a connection but did wonder about it.  Maybe we have discovered something new!lol

      On my mother's side there are Stuarts too.  I get terrible body pain with my HH, and I am going to try lymph gland drainage massage and then hard body massage to try to disperse the iron deposits in my muscles.  Have you tried this for your PMR.  I had not heard of GCA but after I had a very dangerous cancerous tumour removed from my parotid gland, I feel a lot of pulsing, throbbing and pressure pain when I lie on either side, i.e. either of my temples.  I have had no explanation for it.  So I don't know if it is similar to what you have.

      What was your ferritin and TS% levels when you were diagnosed and what did your genetic test disclose?  Metallic taste is an indication but I thought for a very high level.  There is a book called something like "The Iron Elephant" written by an American woman who complained of a metallic taste.  Sorry about scant details, feeling very fluey at moment - so off to bed as soon as.

      Bye for now

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