I think I'm experiencing the "brain fog"

Posted , 9 users are following.

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

23 Replies

Prev
  • Posted

    Thanks all for your replies.... Here's a bit of background:-

    Diagnosis Nov 2012:- C282Y homozygote in the HFE gene. NOT overloaded at the time, Ferratin 181 g/l Transferin saturation 57%. They told me to watch my diet, try to lose weight & I would be seen again in 12 mths.

    Next appt Nov 2013:- slightly higher levels apparently but not overloaded, next appt 12 mths & if levels the same & Possibly would discharge me.

    Last appt 2014:- said my levels had gone up - not enough to start venesection but cannot discharge. I didn't ask for the figures, like an idiot! Said they would see me in 12 mths again & will start venesection if levels are higher. So my next appt with haematologist is Nov 2015.

    From what's been said it seems very unlikely that my iron levels could have increased so much in just a few weeks to cause "brain fog"

    I am however, prone to depression & anxiety so following your comments I'm inclined to think my memory loss could be down to that? I also have psoriatic arthritis & get very tired.

    • Posted

      A few more bits on gluten vs. psoriatic arthritis / memory –

      I hope some of this might be helpful - ?

      Emis Moderator comment: I have removed the links as they were to sites unsuitable for inclusion in the forums and a couple of them gave pop up warnings about the sites. If users want this information please use the Private Message service to request the details.

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

  • Posted

    Up to ferritin iron 150 is considered normal, 200+ is overload.  I have seen that a pathology group are now saying more than 120 for a menstruating woman is overload.

    A TS% >45 (female) is indicative of hereditary haemochromatosis.  74 is definitely over.  You should be having venesections now.  If you are menstruating, frequency may be reduced, but generally a (good) haemotologist will de-iron you to at least less than 50 to get the stored iron out of your organs then let you go up to where it is comfortable if you have a problem with a low ferritin iron.

    My optimal level is 34 but everyone is different.

    I suggest you acquire as much info about HH as possible so that you are aware of where you are at, keep your lab results, and you won't have to be anxious, depressed or worry about having complications which may ultimately be related to something else.

    Contact your country's HH assoc for more info, and see if there is a local support group for you to go to and compare notes.

    I find in my support group, that those who are only Carriers but have high ferritin levels, also have a fatty liver which is really causing their high ferritin levels (not the single gene), and have huge beneficial results in reducing their ferritin iron when they have cut out bad fats, sugars and starchy foods.  Their fe levels drop by the hundreds without venesections.  They had reasons why they could not nor wanted to venesect.  

    I have also had reports that carriers with high ferretin levels have felt better after donating blood.  But their problem does not go away without dieting as above.

    If your dr has suggested you lose weight you may be complicating matters with a fatty liver.  This is just my experience with people who have addressed this.

    Keep in touch.

    • Posted

      Thanks very much for your advice & ideas. I have decided that next week I will call haematologists secretary, tell her my concerns & ask for an appointment. I will feel better if I can at least explain how I am feeling & get their opinion on whether my iron levels could be causing the symptoms. I can also get more facts & figures
  • Posted

    Hi, shaziebabes,

    Just in case your brain fog is related to fatigue, a few thoughts on hemochromatosis as a possible cause of fatigue.

    I’ve got a different type of hemochromatosis (exact type not diagnosed yet, but a C282Y mutation has been ruled out) and gradually became so fatigued after having a hysterectomy (just under 11 years ago) that I had to stop work (just over 2 years ago).  I’m *still* exhausted after having enough blood removed to bring my ferritin down from 1438 ug/L to 188 ug/L. 

    However, there may be hope - Sheryl37154 just mentioned below a Canadian physician, Dr. Paul Adams, who has experience treating hemochromatosis.  If you do a Google Scholar search on “How I treat hemochromatosis” you’ll find a 2010 paper with that title by Dr. Adams and a Dr. Barton – it was the first hit when I did the search.  There are several mentions of fatigue as a symptom of hemochromatosis that gets better with de-ironing but not too much de-ironing, at least for some patients – fingers crossed!!  (I thought the information on the joint pain/swelling was interesting too): 

    (page 319)  Many patients who report pretreatment fatigue indicate that this symptom improves with phlebotomy. Some patients report being energized by phlebotomy; some are reluctant to discontinue phlebotomy treatment after iron depletion is achieved.

    A distinctive form of arthropathy occurs in some patients with hemochromatosis, especially women ; many other patients have age-related or other types of arthritis similar to those observed in persons without hemochromatosis.  Consistent with previous reports, our informal observations suggest that arthralgias increase during phlebotomy therapy in some patients; some report decreased joint pain or swelling after iron depletion is achieved.  Arthropathy in many cases appears to be unaffected by phlebotomy management.

    (page 320)  We discontinue phlebotomy therapy in most patients when their SF level is in the lower reference range ( ~50/g/L). Some patient support groups have advocated more intensive phlebotomy therapy to achieve and maintain much lower SF levels, but some patients so treated develop fatigue and other symptoms because they develop iron deficiency.

    • Posted

      Thanks for that.... Wow, imagine if phlebotomy helped my fatigue AND reduced swelling & pain in my joints? Party time!! I will definitely look at the article. I'm having my iron levels checked this week so I hope to have more info when I call for the results. At least if they say that my iron levels are not high enough to be causing "brain fog" then I'll know it must be stress. I can't believe how well informed you all are on this forum. Thanks again
  • Posted

    YES!!! I've experienced all of the things you've described and its the WORST!!!

Report or request deletion

Thanks for your help!

We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.