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I think I'm experiencing the "brain fog"

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shaziebabes
shaziebabes

I can't believe how forgettful I am at the moment...I think of something, go to do it, then immediately forget what it was! Or I walk into a room and forget what I came in for. My head feels "full" & I'm so exhausted. Has anyone else felt like this? Like your going a bit mad? I have HH & I'm 44. No venesection yet.... Next haem appt in November

2 likes, 23 replies

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  • megan36105
    megan36105 shaziebabes

    Posted

    What are you levels at right now? And when's your first venesection? Do you mean that you're not having one until November?

    I did experience that a little bit but I don't think to the extent that you've been experiencing it. I found that I was getting really forgetful so I had to be extra careful to write everything down at work (I work at a law firm and it's very very bad if I were to miss an important date or something). But now that my iron levels are normal for my body (I was experiencing this while they were too low for me, around 20-40) I've been feeling pretty great and I've been less forgetful and I haven't experienced brain-fog in a long time (except for when I get anxious, but that's a different matter altogether).

    But everyone, I've found at least, experiences their HH symptoms differently.

    • shaziebabes
      shaziebabes megan36105

      Posted

      hi there, thanks for your reply.... Ive managed to get hold of this info from my last blood test in November:-

      Ferratin 275    and transferin sat 74. Does this mean anything to you?

      it seems this has gone up from my results in 2012, which were Ferratin  181 g/l Transferin saturation 57.

      Ive never had a venesection and my next appointment with the Haematologist is this November.

      think my fuzzy head and forgettfullness could be anxiety?

    • GillianA
      GillianA shaziebabes

      Posted

      Depression and anxiety can certainly affect memory – so if your memory problem happened after you noticed that you were getting more anxious or more depressed or both, then it’s possible that the memory loss could be a side effect of depression/anxiety.  If that’s the case, then when you figure out what’s causing the depression/anxiety and fix it, your memory should get better too.

      A good first step in figuring out the cause of the memory loss is to look for all the clues you can:  e.g., make a list of absolutely everything that changed either at the same time as or just before your memory started getting worse.  As a few examples - any relationship to light levels?  If this happens every year mid-fall, perhaps Seasonal Affective Disorder is a culprit (In this case, daily vitamin D3 might help – it’s easier than a SAD lamp – at least 25 mcg aka 1,000 IU a day.)  Or, did the memory problem start after you suddenly had much more work to do and you started cutting back on sleep to cope?  Or did you start waking up in the middle of the night for no reason at all and not be able to get back to sleep? (middle-of-the-night-waking is another symptom of low estrogen that I had – it also goes away promptly with a bit of transdermal estradiol.)  Or is your balance off a bit? (this can be a symptom of low B12)  Did your diet change?  Any change in your psoriatic arthritis – did your CRP or other inflammatory markers go up? (in which case your memory loss could be a reaction to inflammation – if so then maybe your rheumatologist could help?)

      One other thought about psoriatic arthritis is the possibility of trying a gluten-free diet.  I don’t have psoriatic arthritis but I do have another inflammatory arthritis, palindromic arthritis, for which the rheumatologist told me there was no treatment except painkillers when needed.  So of course I went online to learn more and discovered that other people with palindromic arthritis (and rheumatoid arthritis and lupus arthritis) had posted saying things like, “And then I went off gluten and I could cut down my meds” or, even, “stop my meds.”  I thought I’d try stopping gluten too – and the very next day, the chronic diarrhea I’d had for several decades went away.  (It had been diagnosed as “irritable bowel syndrome” but obviously it wasn’t.)  As long as I don’t accidentally eat something with gluten hidden in it, I have no joint flares at all.  Going off gluten requires a lot of work, label-reading, and not trusting people who tell you in all sincerity, “No, there’s no gluten in miso soup.”  (Oh, yes, there is, except for the hard-to-find kinds specially made without wheat.)

      Emis Moderator comment: I have removed the link as it was to a site unsuitable for inclusion in the forums. If users want this information please use the Private Message service to request the details.

      http://patient.uservoice.com/knowledgebase/articles/398331-private-messages

    • Ferritin_Jim
      Ferritin_Jim shaziebabes

      Posted

      I put my fuzzy brain/fatigue down to depression and anxiety for years until Sertraline stopped the depression and anxiety but not the fatigue.  Investigations then revealed HH
    • sheryl37154
      sheryl37154 Ferritin_Jim

      Posted

      Hi Jim, Yes, I still have fatigue 16.5 years later too, or very short days, and I can't find any research on it either, except the current paper I am reading mentions they don't think it is an iron in the brain thing.
    • shaziebabes
      shaziebabes Ferritin_Jim

      Posted

      Just had to say how great I think your username is!! I think when you have depression and/or anxiety, they say just about every symptom you ever have is down to it! They do in the UK anyway ( not sure where you are) ... It really annoys me 😁
  • sheryl37154
    sheryl37154 shaziebabes

    Posted

    Ditto re Megan's reply.  If your ferritin iron levels are high enough to cause brain fog, then your dr/haemotologist is not treating it seriously.  Let us know your Iron Studies levels or compare them to the norm, and if they are high, you may need to assert yourself with your gp to get immediate action.  If you don't know, ask for a copy of all your results.

    Have you actually had a genetic test which confirms your HFE genes?  Ask for a copy of that as well.

    I did develop that brain feels full feeling (maybe a fluey feeling) but I put it up to being so fatigued because I had not yet been diagnosed - took 9 years and I was staggering and slurring.   This dissipated with venesections.

    Then a few years after being "de-ironed", I was found to have severe arrythmia and the cardiologist put me on beta blockers and I immediately went into a fog, unable to think nor focus, could not put more than 2 words together, my brain stopped talking to my bladder so I was constantly peeing myself, could not remember I was driving to dr - let the car drive itself anywhere, then on another trip could not remember how to get there, then discovered I could not read traffic lights.  I stopped driving.  Took years to get articulation back.

    The beta blockers dilated my blood vessels and let the iron particles into my brain -  in retrospect, my gp should have referred me to a neurologist but did not and I could not think straight enough to think of it myself and ask for it.

    So don't let drs give you a blood vessel dilator - ask them for something else that does not do that.

    It is a very serious situation.  Let us know how you go.

    • GillianA
      GillianA sheryl37154

      Posted

      Sheryl, has your neurological reaction to a beta blocker been published anywhere?  If it has, I can’t find it - and I think it would be *really* good information to have available for patients with hemochromatosis and their doctors. 

      I looked and the only thing I found was a yet-to-be replicated study by Park et al (2009) posted at http://ehp.niehs.nih.gov/11559/ reporting that iron can make the effect of lead on heart rhythm worse in people with polymorphisms in iron metabolism genes, including the HFE hemochromatosis gene.  Although this study doesn’t have anything to do with beta blockers, it does suggest that a lead level check might be a good idea for anyone with hemochromatosis and a prolonged QT interval on ECG . . . .

    • sheryl37154
      sheryl37154 GillianA

      Posted

      Gillian, No to any publication.  My drs (especially the cardiologist) were too useless for that - all I kept getting was shoulder shrugging.  They had none to very little knowledge about HH.  He then went on to give me calcium channel blockers which seriously worsened my just diagnosed prolactinoma.  I took myself off them and never went back.

      However, an HH research group present at a HH conference I attended last year, who were researching the affect on the brain by iron overload using mice have decided to try to replicate what happened to me.  They are very restricted by ethics committees ensuring that there is no cruelty to the mice in the carrying out of the research???  It appears that mice are avid iron loaders naturally.

      The blood brain-barrier usually protects our brain from iron overload, but if the barrier is breached, it can pass through.

      You will find a lot on various damage to the brain by haemochromatosis by googling 'hemochromatosis and the brain' (US spelling).  Also on heart damage by googling 'hemochomatosis and heart'.  No 3rd element is needed (eg. lead) to make this happen.

      If you know the history of King George III, who was deemed 'mad', was found on autopsy, to have a lot of black sludge in his heart!  Was that iron, or even as you found, lead?  There was a lot of dangerous elements in households of that time, i.e. arsenic in the wallpaper, asbestos everywhere, so it is quite possible he was ingesting lead in some way, or it was just plain undiagnosed HH.  The royal household feared that hIs daughter, ultimately Queen Victoria, inherited his problem whenever she asserted herself by having the occasional dummy spit!  Anyway, if there is any HH in the royal family, they are keeping it very quiet.  Watch out for Harry's Celtic red hair!!!

      Depression and anxiety are also classic symptoms of HH, as of course, they are of a lot of other conditions.  However shaziebabes has already been diagnosed with HH, so it is quite possible it is from that, even though her levels are not inordinately high.  It affects everyone differently anyway.  In some people her current level may be nothing, but in her it may be a lot.

      Arthritis is also a classic complication, but I have not checked up on psoriatic arthritis.

    • GillianA
      GillianA sheryl37154

      Posted

      Hi Sheryl,  I'm very glad to hear that the HH research group is planning some follow-up; if they succeed in going forward with their study, I hope that with your permission they might cite your experience as the reason for the study.  Although it shouldn’t take a mouse study - I think a return to the old-fashioned habit of publishing case reports of unusual clinical situations is badly needed to help both doctors and patients figure out what is going on when the unexpected happens. 

      Quite right about brain and heart (and joint) damage as a result of iron overload in HFE hemochromatosis.  Also, going by the work being done on the role of iron overload in Alzheimer’s, iron may be a bad actor in the brain even in people who don’t have hemochromatosis. 

      With regard to lead and hemochromatosis, I did find a few studies showing increased lead absorption from the gut in people who are homozygous for the HFE gene (Onalaja & Claudio in Environ Health Perspect. 2000 Mar;108 Suppl 1:23-8., and Gundacker Genck & Hengstschläger  in Mutat Res. 2010 Oct)  and – just published July 2014 by Fan et al in PloS, a study showing increased lead absorption with H63D.  And higher lead levels are associated with increased levels of depression and anxiety –e.g., the 2009 paper in Arch Gen Psychiatry by Bouchard et al.  (I’ve been told off about giving links but I hope giving non-link citations to papers in the medical literature will be okay.  I use Google Scholar a lot, because it gives links to full-text versions of papers if any are available.)  In any case, I think it’s a good idea in general to avoid using lead crystal, to check and make sure ceramic glazes are lead free, to run tap water until it’s good and cold before using it for cooking or drinking, etc., etc.  As you say, iron excess is bad enough, who needs lead excess on top of it!  I hope arsenic is less of a problem nowadays – although people drinking groundwater should check to make sure their water isn’t high in arsenic.

      Another risk factor for increased lead absorption is iron deficiency, so people getting phlebotomy for ferroportin loss-of-function disease may also be at increased risk with lead exposure if and when their serum iron drops too low with phlebotomy.  (Because the malfunctioning ferroportin can’t get the excess iron out of the overloaded tissues very well, it’s common for phlebotomy in ferroportin LOF to result in low serum iron.  When this happens, you just have to wait while the poor disabled ferroportin ever so slowly scrapes enough iron out of the cells back into the blood stream so that the bone marrow can make enough red cells so that another phlebotomy can be done . . . . )  This is what’s happening to me, although I don’t know for sure if I have ferroportin LOF or not, as I live in Canada and I’ve been told we don’t test for this in Canada.

    • sheryl37154
      sheryl37154 GillianA

      Posted

      Sorry shaziebabes, we seem to have taken over your blog - but it is all a learning experience.

      Gillian, I agree re case studies should be written up.  Since having severe iron overload (as in HH) which was left undiagnosed for 9 years, I have been subject to a lot of health issues - before my hysterectomy which set it off, I was superwoman.

      One of them was having an epithelial-myoepethelial cancer of the parotid gland.  Research was sparse as it was described as very rare and unusual and only 25 people in the (modern) world were diagnosed with it.  (Probably a lot more undiagnosed of course.)  Anyway, I was lucky enough to have felt it when it was still only a little over 1 cm large.  Those that were written about were 2+cm.

      So how to treat after sugical removal - radium therapy with all its associated problems or not?  I research the studies and cross checked and analysed and found that there was no pattern of good results from radium therapy - some worked (as in preventing reoccurrence elsewhere, or mastastising somewhere - or was it just luck or circumstance), some did not, some died in a couple of years, some about 10 years, some did not.

      So instead of risking all the damage possibly unnecessarily of radium therapy, I asked for 3 monthly MRIs and have also been given full body scans once a year.  Not only am I under the surveillance of my excellent surgeon who did some research on it too but also an excellent head and neck oncologist - I see each in turn every 6 months, i.e. one of them each 3 months accompanied by my MRI results.

      However, I bemoaned the fact that were was nothing written up on successful treatment or otherwise of tumours <2cm (there must be more than i out there).  so the head and neck oncologist promised he would write a case study after 10 years (so that there was at least some known outcome over a longish term).  that will be 2021!!!!!  i see him again tomorrow so i will remind him, he may feel inclined to do it earlier.

      we know that cancer thrives on iron - so we are more susceptible to cancer but of course no proof for this particular case.  i bet none of the other patients (all of european origin) were tested for hh.

      back to hh, copper seems to be another suspect.  i am just reading a paper on hh (or iron overload) on the brain, and wilson's disease (caused by excess copper) has popped up.  i have come across small suggestions of copper being involved with hh before.

      funnily, many, many, years ago, i was inspected by an iridologist at a street market.  he told me i had too much copper in my body, plus reproduction organ problems, and my parents did not give me a very good constitution.  many years later, reproduction organ problems (tick), excess copper - put that down to excess iron instead (tick), poor constitution - certainly ended up with that (tick).  now, since seeing excess copper pop up now and then, i am having second thoughts, and have requested a blood test for this for next time i have to do bloods.

      we have copper water pipes and until today (having checked with my husband) i thought it was only for hot water.  i was told many years ago to not drink from the hot water tap.  if it is both pipes, we are stuffed!

      i did request a lead test prior to my hh diagnosis when i was trying to find out what was wrong with me.  google was not around then.

      the paper i am reading is using mice and iron overload, but it does not seem to be leading to anything conclusive.  the paper is called "brain changes in iron loading disorders", the researchers i know are olynyk and johnstone.  it has already been proven elsewhere in the world.  i think the answer lies in having the blood brain barrier breached by something else, i have read that even angina tablets can do it, as well as  severe liver inflammation - there must a lot of others and no connection has been made.  although there is a reference to studies done by crichton and colleagues which i have yet to chase up.  i have seen an picture of an mri showing iron deposition in the brain.  it looked like a dark cloud.

      another study has connected those with h63d to alzeimers.  my husband is homozygous h63d and i think that is where he is heading - he might beat me to it!

      i have read about ferroportin disease but i don't know much about it (because it does not affect me!!) and i have not yet come across it with anyone else yet.  perhaps it is not checked for in australia either.  i must ask my husband's dr as he has the best knowledge of haemochromatosis that i have come across so far.

      ferroportin sounds very tricky to treat - like thalasemia (sp?).

      prof adam paul is the haemochromatosis expert in canada if you can find a way to get on to him.  i have met him and he is very approachable.  he started the hh blogs and assoc in canada.

      don't they test your hb before doing phlebotomies?  are you heterozygous with ferroportin?  if so, it seems that heterozygots cannot replace red blood cells as fast as we homozygots, so hb tests are very important. (there="" must="" be="" more="" than="" i="" out="" there).=""  so="" the="" head="" and="" neck="" oncologist="" promised="" he="" would="" write="" a="" case="" study="" after="" 10="" years="" (so="" that="" there="" was="" at="" least="" some="" known="" outcome="" over="" a="" longish="" term).=""  that="" will="" be="" 2021!!!!!=""  i="" see="" him="" again="" tomorrow="" so="" i="" will="" remind="" him,="" he="" may="" feel="" inclined="" to="" do="" it="" earlier.="" we="" know="" that="" cancer="" thrives="" on="" iron="" -="" so="" we="" are="" more="" susceptible="" to="" cancer="" but="" of="" course="" no="" proof="" for="" this="" particular="" case.=""  i="" bet="" none="" of="" the="" other="" patients="" (all="" of="" european="" origin)="" were="" tested="" for="" hh.="" back="" to="" hh,="" copper="" seems="" to="" be="" another="" suspect.=""  i="" am="" just="" reading="" a="" paper="" on="" hh="" (or="" iron="" overload)="" on="" the="" brain,="" and="" wilson's="" disease="" (caused="" by="" excess="" copper)="" has="" popped="" up.=""  i="" have="" come="" across="" small="" suggestions="" of="" copper="" being="" involved="" with="" hh="" before.="" funnily,="" many,="" many,="" years="" ago,="" i="" was="" inspected="" by="" an="" iridologist="" at="" a="" street="" market.=""  he="" told="" me="" i="" had="" too="" much="" copper="" in="" my="" body,="" plus="" reproduction="" organ="" problems,="" and="" my="" parents="" did="" not="" give="" me="" a="" very="" good="" constitution.=""  many="" years="" later,="" reproduction="" organ="" problems="" (tick),="" excess="" copper="" -="" put="" that="" down="" to="" excess="" iron="" instead="" (tick),="" poor="" constitution="" -="" certainly="" ended="" up="" with="" that="" (tick).=""  now,="" since="" seeing="" excess="" copper="" pop="" up="" now="" and="" then,="" i="" am="" having="" second="" thoughts,="" and="" have="" requested="" a="" blood="" test="" for="" this="" for="" next="" time="" i="" have="" to="" do="" bloods.="" we="" have="" copper="" water="" pipes="" and="" until="" today="" (having="" checked="" with="" my="" husband)="" i="" thought="" it="" was="" only="" for="" hot="" water.=""  i="" was="" told="" many="" years="" ago="" to="" not="" drink="" from="" the="" hot="" water="" tap.=""  if="" it="" is="" both="" pipes,="" we="" are="" stuffed!="" i="" did="" request="" a="" lead="" test="" prior="" to="" my="" hh="" diagnosis="" when="" i="" was="" trying="" to="" find="" out="" what="" was="" wrong="" with="" me.=""  google="" was="" not="" around="" then.="" the="" paper="" i="" am="" reading="" is="" using="" mice="" and="" iron="" overload,="" but="" it="" does="" not="" seem="" to="" be="" leading="" to="" anything="" conclusive.=""  the="" paper="" is="" called="" "brain="" changes="" in="" iron="" loading="" disorders",="" the="" researchers="" i="" know="" are="" olynyk="" and="" johnstone.=""  it="" has="" already="" been="" proven="" elsewhere="" in="" the="" world.=""  i="" think="" the="" answer="" lies="" in="" having="" the="" blood="" brain="" barrier="" breached="" by="" something="" else,="" i="" have="" read="" that="" even="" angina="" tablets="" can="" do="" it,="" as="" well="" as=""  severe="" liver="" inflammation="" -="" there="" must="" a="" lot="" of="" others="" and="" no="" connection="" has="" been="" made.=""  although="" there="" is="" a="" reference="" to="" studies="" done="" by="" crichton="" and="" colleagues="" which="" i="" have="" yet="" to="" chase="" up.=""  i="" have="" seen="" an="" picture="" of="" an="" mri="" showing="" iron="" deposition="" in="" the="" brain.=""  it="" looked="" like="" a="" dark="" cloud.="" another="" study="" has="" connected="" those="" with="" h63d="" to="" alzeimers.=""  my="" husband="" is="" homozygous="" h63d="" and="" i="" think="" that="" is="" where="" he="" is="" heading="" -="" he="" might="" beat="" me="" to="" it!="" i="" have="" read="" about="" ferroportin="" disease="" but="" i="" don't="" know="" much="" about="" it="" (because="" it="" does="" not="" affect="" me!!)="" and="" i="" have="" not="" yet="" come="" across="" it="" with="" anyone="" else="" yet.=""  perhaps="" it="" is="" not="" checked="" for="" in="" australia="" either.=""  i="" must="" ask="" my="" husband's="" dr="" as="" he="" has="" the="" best="" knowledge="" of="" haemochromatosis="" that="" i="" have="" come="" across="" so="" far.="" ferroportin="" sounds="" very="" tricky="" to="" treat="" -="" like="" thalasemia="" (sp?).="" prof="" adam="" paul="" is="" the="" haemochromatosis="" expert="" in="" canada="" if="" you="" can="" find="" a="" way="" to="" get="" on="" to="" him.=""  i="" have="" met="" him="" and="" he="" is="" very="" approachable.=""  he="" started="" the="" hh="" blogs="" and="" assoc="" in="" canada.="" don't="" they="" test="" your="" hb="" before="" doing="" phlebotomies?=""  are="" you="" heterozygous="" with="" ferroportin?=""  if="" so,="" it="" seems="" that="" heterozygots="" cannot="" replace="" red="" blood="" cells="" as="" fast="" as="" we="" homozygots,="" so="" hb="" tests="" are="" very="">

      we know that cancer thrives on iron - so we are more susceptible to cancer but of course no proof for this particular case.  i bet none of the other patients (all of european origin) were tested for hh.

      back to hh, copper seems to be another suspect.  i am just reading a paper on hh (or iron overload) on the brain, and wilson's disease (caused by excess copper) has popped up.  i have come across small suggestions of copper being involved with hh before.

      funnily, many, many, years ago, i was inspected by an iridologist at a street market.  he told me i had too much copper in my body, plus reproduction organ problems, and my parents did not give me a very good constitution.  many years later, reproduction organ problems (tick), excess copper - put that down to excess iron instead (tick), poor constitution - certainly ended up with that (tick).  now, since seeing excess copper pop up now and then, i am having second thoughts, and have requested a blood test for this for next time i have to do bloods.

      we have copper water pipes and until today (having checked with my husband) i thought it was only for hot water.  i was told many years ago to not drink from the hot water tap.  if it is both pipes, we are stuffed!

      i did request a lead test prior to my hh diagnosis when i was trying to find out what was wrong with me.  google was not around then.

      the paper i am reading is using mice and iron overload, but it does not seem to be leading to anything conclusive.  the paper is called "brain changes in iron loading disorders", the researchers i know are olynyk and johnstone.  it has already been proven elsewhere in the world.  i think the answer lies in having the blood brain barrier breached by something else, i have read that even angina tablets can do it, as well as  severe liver inflammation - there must a lot of others and no connection has been made.  although there is a reference to studies done by crichton and colleagues which i have yet to chase up.  i have seen an picture of an mri showing iron deposition in the brain.  it looked like a dark cloud.

      another study has connected those with h63d to alzeimers.  my husband is homozygous h63d and i think that is where he is heading - he might beat me to it!

      i have read about ferroportin disease but i don't know much about it (because it does not affect me!!) and i have not yet come across it with anyone else yet.  perhaps it is not checked for in australia either.  i must ask my husband's dr as he has the best knowledge of haemochromatosis that i have come across so far.

      ferroportin sounds very tricky to treat - like thalasemia (sp?).

      prof adam paul is the haemochromatosis expert in canada if you can find a way to get on to him.  i have met him and he is very approachable.  he started the hh blogs and assoc in canada.

      don't they test your hb before doing phlebotomies?  are you heterozygous with ferroportin?  if so, it seems that heterozygots cannot replace red blood cells as fast as we homozygots, so hb tests are very important.>

    • GillianA
      GillianA sheryl37154

      Posted

      Hi Sheryl,

      I do hope your oncologist writes up your case – he could get two papers out of it:  a report on initial case recognition and management now, and a ten-year follow-up in 2021!  Maybe you could offer to be a co-author in reporting your own case and do an initial draft to get the ball rolling?

      Your point about copper is very well taken – there a type of genetic iron overload, aceruloplasminemia, in which tissues – including brain – become iron overloaded, but iron levels in the blood are low and can lead to anemia.  There is a nice short summary on the condition on the Genetics Home Reference website from the US NIH.  Although, recent work indicates that not everybody with aceruloplasminemia gets neurological symptoms, so it’s worth asking about aceruloplasminemia for anyone who has both tissue iron overload and low(ish) hemoglobin and/or serum iron.  We *can* test for ceruloplasmin in Canada and my hematologist did check me for it, and my ceruloplasmin level is fine. 

      I hope they do more work with MRI looking at what tissues get iron overloaded in what types of hemochromatosis and how fast the different tissues clear (or don’t) in relationship to changes in ferritin and/or serum iron as phlebotomy treatment progresses.

      I’m sure your cold water pipes will be made of copper if your hot water pipes are – but if you run the cold tap until the water coming out is fresh-out-of-the-ground cold, then that cold water won’t have been hanging around in the house pipes long enough to pick up enough extra copper (or lead) to matter.

      I don’t know what my genotype is with regard to ferroportin disease, because the testing isn’t available in Canada.  I would only need one affected gene, though, because ferroportin loss-of-function is inherited as an autosomal dominant.  My mom doesn’t have iron overload, so I’m blaming my iron problems on my father.  I started off with weekly phlebotomy over a year ago but am now down to every four weeks – as long as my hemoglobin is over 110 g/L.  If it isn’t, then I have to wait until it is until I can have my next phlebotomy.

      Thank you so much for the lead on Dr. Paul in Canada – I will definitely attempt to make contact with him!

    • sheryl37154
      sheryl37154 GillianA

      Posted

      Oops!  Prof Paul Adams - I seem to be reversing things a lot lately.  He is easily googled.
  • GillianA
    GillianA shaziebabes

    Posted

    I can remember feeling like that at about the same age - but in my case, it was because of low estrogen levels perimenopausally, and got completely better once I started using a bit of transdermal estradiol.  I understand that iron overload can affect ovarian function, but this happened to me when I was still having really heavy periods and my ferritin had not yet gone up, so I can’t blame it on having hemochromatosis.  (I would advise against taking oral estrogen in this sort of situation, because when you take oral estrogen, it causes the liver to make extra sex hormone binding globulin, which is a hormone carrier protein.  It will bind up and inactivate hormones in general.  This is not a problem for a hormone that you are taking because the dose is just increased to compensate, but it can make you deficient in active levels of the hormones you aren't taking.)  In any case, low estrogen can lead to poor memory.

    You mention that you have been diagnosed with hereditary hemochromatosis but you don’t say what kind – it is possible that some of the less common types of hemochromatosis involving high ferritin but normal or low transferrin saturation, such as aceruloplasminaemia and ferroportin disease type A, might cause memory problems by affecting the brain directly.  Your doctor(s) should be able to tell you exactly what kind of hereditary hemochromatosis you have and if your memory could be affected by it.  It’s probably also a good idea to get and keep copies of all your lab tests so you can track them yourself – and see if there is any relationship between changes in your blood test results and how well your memory is working.

    Of course, there are all kinds of other things that can affect memory – lots of medications affect memory, including those used to treat anxiety or insomnia, muscle relaxants, statins (in some people), recreational drugs, etc.  Other causes of memory loss include sleep deprivation, B1 and/or B12 deficiency, and much more.  If you are having any other symptoms besides the memory loss, those could be very valuable clues to help you and your doctors figure out what’s going on.

    I hope some of this is helpful; I know how frustrating it is when your memory quits on you!

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