Is numbness and tingling in hands and feet a common sympton?

Allergies, blood and immune system
1

I have recently been diagnosed and am still waiting to see a consultant at hospital.

I have many of the usual symptoms including iron TS level of 95%, fatigue, weakness, lack of concentration, and chronic joint pains. About a 2 months ago I developed extreme numbness and tingling sensations in my hands and feet which spread up my arms and my calves. These drove me to distraction keeping me awake and making it difficult to use my fingers properly. Although it has eased off now it is still there and some days worse than others. The pains in my hands are getting steadily worse.

My older sister began to develop the same sensations about a month ago and went for genetic testing. Her test came back negative and she is now feeling very frustrated and confused as we were both convinced she also had the gene. She was told her iron levels were high but also that her folic acid was deficient. She was prescribed this. She suffers from underactive thyroid.

We are trying to understand how she could be having such similar and severe symptoms but not actually have this gene. And if these sensations are unrelated to the Haemochromatosis why am I experiencing them?

confused

2

I'm not sure if you still check this forum since you posted two months ago already, but I thought I would try my best to respond to you.

I'm not sure how old you are, but you sound a good deal older than I am - I'm 24, and I was diagnosed with haemochromatosis when I was 21.

Do you know for certain that the pain in your joints is arthritis caused by your iron overload? What I'm thinking, and I'm 100% not a doctor here, is that maybe if your haemochromatosis is causing you that kind of pain, maybe yours is what's also causing the tingling sensations through your body.

With your sister, however, I would consider getting a second opinion. I'm not trying to be rude but sometimes doctors don't know what they're looking for when it comes to iron. I was told that, and I can't exactly remember what the measurement is, but your ferritin levels should be from about 12-50. When I was testing mine was at 500. Not good. Do you know what level your sister's was? I'm just thinking a second opinion might be good to alleviate some worry and also to double check since most of the time iron overload is hereditary.

Does she have a lot of red meat? Does she eat a lot of beets and spinach? Depending on what her levels were it could simply be that she eats too much iron or takes a supplement with iron causing her levels to be higher than normal.

And who knows, maybe your sister has something else that's unrelated to iron overload. You never know so it's always best to double check. If she does wind up having it, you don't want to have left it untreated.

3

Thank you for your reply, Megan. I haven't checked the site for a while but got an alert to your reply which I appreciate.

Things have moved on a bit since I posted that and it may be of interest to others to know what the outcome was. At the time both myself and my sister were very worried and having a lot of problems.

My sister has since been in hospital for several weeks and it seems she had Guillain Barre syndrome.She is still unwell but is being treated with immunoglobulins and is beginning to respond.

I had my first venesection today - have only had to wait six months :-( . I am optimistic that I will begin to feel better in the next few months.

I do have another query for the group. When I was originally tested my TS level was 94% and when I was retested in Nov it had changed to 71% (only got this result today). The nurse who took my blood today seemed quite surprised that it had gone down on its own as apparently TS levels don't generally change much though ferritin levels can. Just wondering if anyone else has had this happen and if they have any explanation.

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Sorry to hear about your sister - I hope she feels better soon, that's never any fun for anyone involved.

To be honest I'm not sure what my levels are for TS or Ferritin at this time or what they were when I began this whole process almost three years ago.

I would assume though that since your iron levels have dropped that the process of the transferrin protein absorbing the iron and dropping it throughout your body would decrease due to the fact that there isn't as much iron to be found anymore.

Have you made any changes in your diet since your original test? For instance, as I mentioned in my first post, have you eaten less red meat, spinach, prunes, a lot of green vegetables? If you weren't eating as many of these your iron levels would drop naturally. And when you were first tested were you having a lot of foods or taking supplements that provided you with more vitamin c? People with iron overload cannot take any pills with vitamin c in them as vitamin c helps with the absorption or iron, which is the opposite of what we all want.

What I'm also wondering is were you diagnosed with hereditary haemochromatosis or no? I have heard that sometimes if people have been sick for a period of time they can develop iron overload and it's my belief, I could be wrong as this form of it does not apply to me, that the iron levels will decrease over time.

Obviously I'm not an iron overload specialist. Those are just my thoughts.

5

My two sisters and my brother have been diagnosed with haemochromatosis , my mother died recently with liver failure although she never drank and heart failure due to cardiomyopathy so we think she had it too. When I asked the dr for a gene test to see if I had it he told me that he would take a blood test first to check my iron levels, they came back normal and he said I didn't need any gene test because of it, so my question is this- if my iron levels are normal does this mean that I don't have haemochromatosis ?

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I would generally assume so - but if all of your siblings have it, it seems odd that you wouldn't. Granted, I am the only one out of myself and my three other sisters and out of my whole family who does have haemochromatosis, so I know that strange things are possible.

But at the same time, your doctor can't just say "no" to tests that you'd like to have done unless it's not in your best interest. For me to find out whether it was hereditary or not it was just a simple blood test and I don't think that you being pushy and asking for one would be at all out of line, especially considering the circumstances of your family, and your mother just passing away from liver failure (a very common outcome of untreated iron overload).

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Thank you Megan. I have since seen the Dr again and has agreed with the gene testing.

I feel that if it comes back that I don't have Haemochromatosis and I am not a carrier then I must of been a 'cookoo ' in the nest ! I will keep you posted x

8

Hi cj, I am not a dr but have had years of experience with Haemochromatosis. It is ideal for your TS% to reduce. It means that you have now 74% of your ferritin iron available to be soaked up into your organs instead of previously 94% which is up in the aggressive level. Normal level is <40% (sorry for previous posts regarding Haemochromatosis where I have said less than 47% - it is no good relying on a brain with iron particles in it!).

As you have more venesections to get it down to <30 you hopefully will find your TS% reducing too. Unfortunately, mine remains around the 99% mark even though my fe is on maintenance level (venesections every 3 months). I find my optimal level is about 34. That is when I have less pain, fatigue, and rapid heart rate. I was horrified to discover that I have those symptoms when my fe was only 56. Everyone is different.

After your fe level is reduced to <30 to get all the fe out of your organs, you may find an optimal level for yourself. Ask for a copy of your blood tests and look back to see how you felt when you fe was at ?level. My hematologist took me back to 13. I had undiagnosed Haemo for 9 years after a hysterectomy and I was in a bad way. Trouble is severe damage was done at a molecular level, and apart from the liver, it does not repair.

You are entitled to a gene test, so I hope your dr is doing one for you. Again get a copy. Homozygous (2 faults) C282Y, generally more aggressive than D63H, and S65C. You could also have a combination of two mutations, depending on what your parents had.

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Thank you Sheryl. I am still becoming aquainted with all the jargon, etc to do with haemochromatosis and understand more and more as time goes. It is very interesting to read other peoples stories and advice. I have not read anything else about damage at a molecular level but it would make sense given the high concentration of iron in our cells over lengthy periods.

I have had the gene test done already I am double C282Y (is that how it is described?). I have now had two venesections and think I already feel they are making a difference to me. I was able to get my rings back on my fingers today for the first time in two months -- has anyone else experienced this bloatedness?

I was very interested to read what you mentioned about finding my optimal level. I will try to keep track of how I feel as my treatment progresses I can find this level.

I am sorry to hear how your own condition went undiagnosed for so long. I feel I have been lucky to have been diagnosed after my own hysterectomy in 2009 though it was very much by chance.

I am sorry to hear about your situation and how it went undiagnosed. I was also interested in hearing about your arythmia. I had this problem over a period of a few months though it eventually disappeared on its own. I had a heart monitor and echo cardiograph which both came back clear so I have convinced myself that it was totally my imagination. Is your rapid heart beat due to heart damage?

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Hi Megan

Just catching up with these posts. I was tested back in August and yes I have the double C282Y genes. I don't eat any red meat and haven't done so for about twenty years. Otherwise my diet hasn't really changed.

I did have a bad fall from a horse the week before my original bloods were taken and had hurt my back and had very severe bruising so I wonder if my levels had been raised due to inflammation. I think I read somewhere that this can happen.

In response to elaine48669 my other sister, who lives abroad and is also experiencing some symptoms, asked for the gene test and was told that as her iron levels were ok she couldn't possibly have it. However, I asked my haemotologist about this and was told that as I have it she should most certainly be tested and, as she is younger than me and still menstruating, this would account for her levels being normal.

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Hi cj, yes, inflammation, infection, malignancy can increase your ferritin iron levels - even sometimes a cold.

Your sister, being a first degree relative, is entitled to a genetic test as your haemotologist says. A 2nd degree may have to pay a bit if their levels are not high enough - YET! They should keep being monitored.

Your country may have an organisation for Haemo and they might have a letter which you can print off to take to your relative's dr describing the condition and how the person in question should have a genetic test. We have one in Australia which has the letter.

Another interesting site for which I cannot give the url as this website holds up processing if the content includes a website, is the Iron Disorders Institute, go to Forms, and click on Hemochomatosis Reference Charts (2.27MB). Page 2/2 gives all the normal levels in Iron Studies, and lists all the organs that are affected by Haemochromatosis.

My first hemotologist told me about the molecular damage. He was an old fellow on loan to the hospital. I wish I knew then what I know now so I could have asked more questions. I did ask why, if I was now "deironed", did I still feel so tired, etc. He told me that because the damage had been done years ago with the deposits of iron destroying my cells at a deep molecular level, they will never be repaired, only prevented from becoming worse.

The only thing that has made sense to me so far - as well as some words of wisdom from a specialist cardiogist that I had to be very assertive to see - that even though there may be deposits of iron in my heart muscle causing these problems, the only treatment is venesections. They can't cut any of it out!!!

Bloating - I do wake up with fat fingers, which dissipates, perhaps it was a threat of arthritis which has been reduced because of your venesections. I mostly bloat in the belly area - tried lots of things.

Everytime I had ECGs nothing showed up because you need to be having a problem at the time of the ECG except one time I felt a 'ping' and the technician nearly fell of his chair and asked if I felt that, as my heart had skipped a beat. Other signs are a pinching feeling mid chest, and if you lie of your right side with your left arm across your chest, you could feel it IF it was happening at the time.

When I was first made aware of arrythmia by a dr listening to my chest, (like, i did not feel it!!), I was put on a 24 hr halter monitor and found to have extra 21,000 heart beats in 24 hours. The medication (beta blockers) nearly killed as it dilated my brain vessels and allowed the iron particles in - do not let them give that to you!

The specialist cardiologist said most people do not feel real arrythmia, but I learnt to recognise it and now put on a monitor strap around my chest and it transmits to a wrist watch device and confirms it. Most runners wear one of these to monitor their heart beats, so you will find them in sports shops.

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Hi CJ75674, not sure if you still use this site as it was a long time ago. Was hoping for a little advice, I’ve recently been diagnosed with haemochromatosis and started developing the severe pins and needles in arms and legs along with numbness. Just wondering what your outcome was as not many people seem to struggle with this symptom? Was it linked to the haemochromatosis? I’m currently going down the neurological route aswell to disregard any other issues.

cheers,

Chris.

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Hello Chris

not sure if you still use this site

i have also recently been diagnosed with HH. it came about indirectly as my reason to seek medical attention was related to tingling and numbness.
i have also gone down neuro route . i have had about dozen phlebotomies to get my Ferretin down . no measurable effect on tingling symptoms etc . my hemotologist was not convinced the HH would account for tingling.

were you able to find any answers?

any information would be much appreciated

regards,

kr

14

Your symptoms also known as peripheral neuropathy are very common symptoms of Diabetes - Given that haemochromatosis and diabetes are undoubtedly linked, I wonder have you had your blood sugar (glucose) levels checked?