ferritin level - at what level do you get symptoms ?
Posted , 5 users are following.
Hi,
I am a 42 old male. I have a healthy life style ( sport , diet , ... ) . For 2 months now, I have the following symptoms : fatique, muscle and join pain, occasional headache. 2 blood tests indicated that I could have haemochromatosis. Additional tests ( echo, mri, ... ) and blood work do not show any sign that could explain the elevated ferritin level. My iron is 162, TIBC is 249, ferritin is 610 and saturation is 65 %. My hematocrit, Hb and all other parameters are normal. Genetic test was done and it was negative for the usual mutations ( C282Y and H63D ) but also for S65C. According to the internist, it could still be a rare genetic mutation. I'm now having weekly phlebotomy to bring back my iron levels to normal. My internist however is not really convinced that the symptoms ( joint pain, fatique, ... ) are related to this because my ferritin level is elevated but not very high. However my GP says that it is possible to have symptoms with even slightly elevated ferritin level. Are there people on this forum that also experience symptoms even with "mildly" elevated ferritin levels ( e.g. 600 ) ? Also can I expect that these symptoms go away once I'm back to normal ferritin levels ? Also I'm having some symptoms that appear not to be the usual problems associated with iron loading (e.g. occasional headache, muscle pain, occasional tinteling sensation ). Anybody experiencing some symtomps that do not match with the "usual" suspects ? I also had a extensive neurological exam ( MRI, EMG, ... ) to indicate any neurological problem. All were negative.
Regards,
0 likes, 6 replies
Guest Guest
Posted
Dear P36240,
I had a similar situation recently (posted several months ago - regarding Niacin). The basis of the post was that I am heterozygous for C282Y (carrier) and had similar symptoms to those you describe. I had been taking 2000mg of Niacin for several years for cholesterol. The prolonged use resulted in liver toxicity which caused the issues. I ceased taking the Niacin and returned to normal within a few weeks. You didn't mention if you had liver function tests (LFT's). Mine were elevated because of the toxicity. If you are taking meds, supplements, etc. I would suggest you get LFT's and speak with your physician to see if that may be the issue.
Hope this helps and best of luck!
Guest Guest
Posted
Hi,
I'm not taking any meds or supplements and my LFTs are ok. I also had an echo to check for fatty lever or cirrose and both are negative. Thanks for you response !
sheryl37154 Guest
Posted
Even if you did have haemochromatosis, you would have to find effective treatments for your joint pain and fatigue. Venesections and reduction in ferritin do not always alleviate these problems - not for everyone. I am C282Y/C282Y with aggressive loading but have been de-ironed for many years now (<50) and now have 3 monthly maintenance vx, but still suffer from fatigue (very short days), bone and muscle pain (had to have both hips replaced because of osteo-necrosis) and had to give up work which alleviated these issues among others.
But each issue has to be treated as if I did not have HH anyway. My heart pain (including arrhythmia) dissipated with vx, but comes back if my ferritin level increases to 80 for some reason. For me, this is the only issue that resolves with vx. I did not have liver problems but a whole lot of other issues which are worked on independently.
Hormones can be affected by HH and it sneaks up on you, and low testosterone can cause some of your symptoms. This generally does not come good by itself even with vx. Ask for your pituitary gland hormones to be checked too, as well as Vit D and Vit B12. Deficiencies in these can have a major effect on your health.
My husband is H63D/H63D and his testosterone went very low, he is unable to absorb Vit B12 and has to have injections. He had a lot of problems until this was discovered. I can't absorb Vit D and tablets do not help at all. I was put on to a practitioners' brand of Vit D3 drops. Blood test showed an immediate increase.
So ask your dr to continue his investigations on your health issues, and regardless, donating about 500 mL every 3 months is usually good for people anyway.
jacqueline34675 sheryl37154
Posted
can i please ask my dad has very high serum ferritin at 749, and also vitiman b12, should be under 771, and is 810. He was diagnoised with prostate cancer and wondering if this could have raised it?
sheryl37154 jacqueline34675
Posted
As you are querying this on a haemochromatosis forum, can I assume he has been diagnosed with haemochromatosis? After googling acceptable levels of B12, 810 is within that range. Any form of cancer can raise serum ferritin as does inflammation.
I have a B12 injection everything 3 months to help increase the volume of my blood to aid venesection as, now after 30+ years of venesections, my blood is difficult to remove.
My husband was found to be very B12 deficit after suffering 2 years of severe depression after Hodgkins Lymphoma which anti-depressants would not help. A B12 deficit causes neurological problems. My husband's well being was improved considerably.
I hope this helps.
miller.jones Guest
Posted
In your case it sounds like you have some form of illness some people can have a cold and it makes them like as you described also colds can last for months in some people without the nasal type symptoms.
I hope they did the usual tests kidneys/liver thyroid these all can cause those symptoms you have mentioned even diabetes.