Confusion and fog though in maitenence.
Posted , 4 users are following.
Diagnosis: Haemochromatosis with homozygosity for HFE gene.
Diagnosed June 2017 I had weekly venesections until January 28th 2018
When I was told I was in maintenance. Feb to April I was joint sore and in quite a lot of discomfort. The Rhumatologist thought it was inkeeping with GH arthralgia. As she suggested that the body had lost all the nutrients bone marrow needs and my body has to recover from the heavy amount of blood removal. I have felt much more like the self I should have been the last eight years, energy levels up and feeling good. Until last week 16 weeks without venesections I thought my numbers must have increased, so I went for an iron panel. All seems to be about where they want it for maintenance.
But my foggyheaddedness is back, two days of sheer confusion especially in the car when I am driving. My words not coming out clearly and my spacial awareness non existant. I was like this before my first venesections So please someone tell me is this norm the confusion and exhaustion when you are in maintenance? Is it just something that will sometimes happen?
Or am I going round the bend, have dementia or something?
I hope someone can help.
0 likes, 5 replies
ellen23311 ellen12819
Posted
I hit maintenance around the same time as you, and while I feel more awake and alert I have similar problems forming thoughts and speaking. Everyone at work thinks I’m drunk or something, forgetting tasks, muddling up the orders of sentences. I think the fog never really goes away, but that being in maintenance and going for venesections stops it from progressing further. It might be worth getting a blood test earlier than usual to see if your ferritin has increased, you might just need an earlier venesection to bring you back to normality.
Don’t sweat it if your experience of the condition isn’t the same as someone else’s, it affects us all differently but we’re al here for a chat if you need it
Ellen x
ellen12819 ellen23311
Posted
sheryl37154 ellen12819
Posted
I have been on a maintenance schedule of 3 monthly for years. 16 weeks sound like a long time between vx but then you don't give us the details we need to get some sort of judgement.
HH is a hormone thief and some symptoms are similar to low hormones so it is a good idea to get them checked as low hormones cause similar problems.
I ended up having severe fog, memory problems, unable to work out what to do at traffic lights,my brain stopped talking to my bladder, and unable to put more than 2 words together after I was prescribed beta blockers for arrhythmia. it took a couple of years to be able to get my words together and I still have blanks. Did the beta blockers dilate my blood vessels and let iron into my brain at a time when my ferritin level went up because my haemotologist tried me on 4 monthly? It was never investigated. It was all too hard for them. All I could do was keep having venesections.
I had to go back to 2 monthly for 2 years to get back to where I was before that change.
ellen12819 sheryl37154
Posted
Thanks first, for commenting on this. x
It sounds like you have had a tough time; GH and the arythmia. Beta blockers have had some bad press though I am not upto date as I have never taken them, your ferritin was raised, so your round of more venesections seemed to be the answer, (though not one about the hormone levels). My ferritin they say is not climbing fast its around 168 and tranferin saturation about 60, not climbing enough to warrant more venesections yet. I had a hysterectomy at 28 so fluctuating hormones is not what is causing these intermittent lapses. I suppose I am scared I have some sort of dementia .... and that they will miss it because they "presume" its the GH. I am 60, it can hit most any age and it is known to be something that needs identifying as early as possible to have any chance of slowing it down, 60 is still young for getting that awful condition. But my worry is borne out of fear as nobody seems to want to do anything because of the GH and ferritin levels. 😡😢 Ok rant over, sorry but it is a worry and I feel I am making a fuss (or the doctor does) when I need to get on with it.
sheryl37154 ellen12819
Posted
My level had gone up to 80 because my dr changed me to 4 monthly. 80 was bad for me because it caused arrythmia and chest pains. !!! Weird, I know, but that is just how it affects me. I hated the backward step of having to be venesected every two months for 2 years. Never again will I allow the haemotologist to change me to 4 monthly.
Your TS% is still too high and would not be helping you. I had the biggest change in how I felt when I started taking 100mg aspirin per day to make venesections easier because my veins were going on strike. I also take CoQ10 and Vit E now after reading that it is beneficial for repairing the damage to our mitochondria from having high TS% for more than 6 years.
The aspirin had the unexpected benefit of seemingly flushing out stagnant iron from my cells (that is how it felt to me - not a medically proven fact) and I suddenly felt lighter, walked faster and most my body pain left me.
As I kept having 3 monthly venesections even though my ferritin got down to 20's, my TS% has finally reduced.
BTW, I am 67 and I know what you mean about feeling like you have dementia - I am getting so forgetful and my brain does not think as fast as it used to (which was lightning fast before I got the symptoms of HH). There is research that has found that iron in the brain causes dementia but you don't have to have HH for this to happen. In fact it is those who don't have HH or have never been treated that it effects more. We are lucky because we are having venesections to remove iron from our body (and hopefully our brain).
Just keep having regular venesections. I have also been trying to learn a new language to keep my brain exercised. Some people do cross-words, etc.
Have you heard about the psychiatrist who found that her husband was exhibiting signs of dementia? He could not draw the face of a clock. She started giving him coconut oil and he improved. The test being able to draw the face of a clock correctly. I now consume coconut oil by cooking with it, mixing it in my yoghurt, and adding a teaspoon to my coffee. It is lucky I enjoy the taste. I am trying to be proactive.