First ferritin test - is it too low for HH?
Posted , 3 users are following.
I am a 53 yo male - hypogonadism from teenager - Free Testosterone is only one-third minimum age-related level. Testosterone level is refractory to supplementation with testosterone.
First ever Serum Ferritin test - 361 ug/L (10-322).
Serum liver ALT test - 81 iu/L (<40) - all other liver tests well within range.
I have had lots of previous liver test panels - all normal - so first ever positive liver test.
I have two female cousins - daughters of my fathers sister (of seven siblings) with diagnosed HH. Both parents are of pure Irish descent.
My father could be carrier too. My pure English descent 80 yo mother has arthritis in first two fingers of each hand only, both hips arthritis, can now only tolerate one meal per day, and unexplained heart failure (totally healthy heart) requiring pace maker. Never had HH test - does my mother have HH?
I am one of 5 siblings - other 4 are healthy.
I have life-long chronic fatigue, weakness, lethargy, global muscle pain (myalgia) requiring tramadol, joint pain but only on excess joint use, unexplained (healthy) pounding heart on minimal exercise, can only tolerate one meal per day.
My questions - I had the above tests done when I had a disabling viral chest infection - what will my
GP do next when I see him for the first time about the results? What should my GP do? Will he dismiss my tests as viral related and ignore possible HH? What should I do? Should I forget about following up HH?
Is my Ferritin level high enough to suspect HH? It is only 39 above maximum level?
This scenario is giving me a lot of worry given my extremely poor health.
thx
0 likes, 13 replies
jed92784
Posted
Further to my post above, I found the British Society for Haemotology medical guidelines for investigation and treatment of HH - here
http://haemochromatosis.org.uk/haemochromatosis/clinical-guidelines/
Very useful - according to my first test results I should be given genetic testing and immediate start for venesection while awaiting results.
sheryl37154 jed92784
Posted
Hi Jed - HH is not just about ferritin levels. There are other blood results that can help you and your dr to test further.
Your transferrin saturation % (TS%) is important. If it is >50% you most likely have haemochromatosis. Also check your Blood Count test results - a very common test that drs do. Is your MCV >96? Another sign of haemochromatosis. Then a genetic test is required.
Any infection, inflammation, malignancy at the time of your iron studies test will send your ferritin levels upwards whether you have HH or not. I am surprised yours was not higher given the viral chest infection.
I am homozygous C282Y, one of 5 - all the siblings are heterozygous. My mother was heterozygous, and although my father was not tested before he died, his symptoms were very obvious.
My husband is homozygous H63D and his testosterone dropped considerably after having chemo and radium treatment for Hodgkin's Lymphoma. But HH is a hormone thief and hypogonadism in males is common or becomes common at some time as higher levels of ferritin kicks in.
Your mother will have to have the blood tests to diagnose. She most likely has had a Blood Count at some time, so if you can get a look at that, check the MCV. She most likely does not have a copy of her results, but see if you can find out.
Good luck.
jed92784
Posted
Thanks for replying, Sheryl.
My MCV is 90 fl (78-100) - so no clues there?
I am seeing my GP in a couple of hours and I will post again asap.
sheryl37154 jed92784
Posted
Jed, the reason why ferritin is brought down to 50 is to ensure that all ferritin is 'drained' from any organs where it might be deposited. This is only necessary if you are homozygous for one of the HFE genes or compound heterozygous for two HFE genes.
You will have to wait for your TS% to find out that possibility as then a genetic test can be requested. A level of ferritin 361 does not call for an immediate start of venesections - I am surprised if that is what the haemochromatosis org says. There are other factors that have to be taken into account.
If your genetic test is negative, you might feel more comfortable donating blood now and then. But be aware that if you are taking certain medications, you will be refused.
Investigate what 'Boron consumption' can do for you. I have not tried it yet, but it seems beneficial for a number of health issues including increasing hormone availability. I am in the process of ordering it.
jed92784
Posted
Sheryl, I have just returned from seeing my GP.
She said that my serum ferritin is "slightly" high at 361 (10-322) which has annoyed me. Venesection is used to reduce ferritin to around 50 so 361 is actually very high in comparison to venesection level.
Without the existence of my two cousins with HH, I am not sure she would have done anything!
She requested blood tests for Serum Iron and Total Iron Binding Capacity TIBC which are used to calculate Transferrin Saturation. She is not allowed to request the genetic test - I have to be referred to the Genetics Department at the hospital for that. And she will only make the referral after she has seen the results of the this blood test.
Plus, a repeat of the liver panel tests and some additional liver tests. She asked me about alcohol intake but I am totally intolerant of alcohol so never touch it. She said this was interesting in itself.
I am having the blood taken on Friday morning 25th and will post all results asap.
miller.jones jed92784
Posted
Some of what are have put regarding GP sounds odd but it does depend on the country you are in, could you post that detail.
361 is not that high and if you start treatment soon that will drop within few months easily.
Regarding some of the other issues you had mentioned in the original postwell this is inherited so you will have other family members with the markers but this doesn't mean they have the problem which is why they should get tested.
I can't answer some of what you are asking because it could be many factories so the advice I suggest is switching mother to Keto way of living it may help the same with yourself a lot of health problems are linked to the modern way of eating.
jed92784 miller.jones
Posted
I am in England.
Yes, I would like my mother to be genetic tested for HH - she has classic signs and symptoms. Obviously, my fathers sister is a carrier and it looks likely that my father is too.
I thought that lack of appetite is a HH symptom. It is not a question of a particular diet but rather the issue of her eating anything. She is losing weight every month due to this. I have the same issue - I can only eat one meal per day so I have to take a days worth of calories in one meal.
Is this due to the body rejecting any further iron or maybe the liver is compromised?
jed92784
Posted
hi Sheryl
Well, things have taken a more complex turn with the results of my latest blood test results.
Serum iron 10.1 umol/L (14-31).
Serum TIBC 60 umol/L (54-80).
Therefore, TSA is 17%.
So, it appears I am one of those patients with anaemia and iron overload together!
Does that mean, in my case, that my TSA result (which will always be low) is inconclusive for HH?
Do you know the explanation for how this iron scenario occurs?
I think one of my female cousins with HH has the same iron scenario - but I need to check that.
Regarding my serum ferritin level, 361 (10-322), according to the iron medical researchers who I have been listening to, they say that 361 is very high. They say that the proven "normal" level, in a totally healthy person, is between 80 and 100 and anything over 100 will contribute to health morbidity and mortality. And, the lab ranges are totally misleading. And, the whole iron overload science needs complete reform.
However, it is still no clearer whether I have HH. I am seeing my GP next week and will be asking to see a hematologist for anemia, iron overload and family HH investigation.
Do you have any comments?
sheryl37154 jed92784
Posted
What is your haemoglobin? (ie. your red blood cells). That will indicate if you are anaemic.
There are some very respected haemochromatosis researchers who believe the ref range should be overhauled to accept ferritin levels up to 650!!!! It would not work for me, I get arrythmia at a level of 54. A TS% of 17 would be considered as not being as risk of having HH. Maybe heterozygous, given your relatives, but not likely to load iron because of HH. Your ferritin is more likely to be from some form of inflammation somewhere in your body.
My TS% was up to 100% for many years. Some people's TS% reduces quickly, but mine did not. How about donating some blood at the Blood Bank and see how you feel? And see what happens to your blood results. Do not mention HH or high ferritin or they will send you away.
If you are truly loading iron and anaemic at the same time, these are symptoms of thallessemia.
Perhaps read info supplied by your country's haemochromatosis organisation, and phone them to query your situation. They will put you on the right path.
jed92784 sheryl37154
Posted
Thanks for the input, Sheryl.
Haemoglobin concentration 148 g/L (135-180).
Mean cell haemoglobin level 29.5 pg (27-32).
In fact, all the results of my full blood panel are in the centre of range.
I do not want to donate blood until I have seen a hematologist who will probably
want to repeat the GP tests - I dont want to skew the results.
I am going to have to remain open minded about where the problem lies.
Remember that my only other testable sign is hypogonadism - my Free Testosterone is one third of normal age-related level - and this is a major sign of HH.
Also, I have been unwell since I can remember as a child so it does point to a genetic disorder.
My father is almost certainly a HH carrier. My mother has classic signs of HH - arthritis only in first two fingers of each hand, hip degeneration and unexplained heart attacks requiring pacemaker. She spent a week in hospital having heart investigation and her heart is totally healthy based on all the tests. This suggestions iron overload in the heart to me.
Also, I might pay for a liver MRI scan to look for iron for my own piece of mind.
I will have a look at thallassemia - thanks.
sheryl37154 jed92784
Posted
So you are not anaemic with a Hb of 148. We don't usually load iron until adulthood as children need and use up lots of iron. Unless you have juvenile HH but you would be very ill by now and facing death.
Hypogonadism is indeed a sign, especially small testicles. Read up on 'Boron consumption' and see if there is anything in there that relates to you. It is a natural mineral that we ingest in our food if there is enough boron in the earth. A deficiency seems to cause all sorts of problems. I am ordering some for myself to improve the effectiveness of oestrogen. I can't guarantee it because I have not yet tried it.
Re your mother, after 9 terrible years of non diagnosis, my hips broke up because of osteo-necrosis. My blood was so thick with iron it was blocking the finer capillaries of the bones of my hip. The bone died and broke up, so two hip replacements at a reasonably young age.
HH, iron absorption, usually causes heart failure from enlargement of the heart. It becomes too heavy to work and should be able to be diagnosed. However, arrythmia is very common with HH.
Let us know how you go with your haemotologist.
jed92784 sheryl37154
Posted
A little more HH research suggests that, in my case, the only possible differential diagnosis to HH is Autoimmune Hepatitis (AIH). And to be honest, it also sounds more plausible.
The liver inflammation leads to high Serum Ferritin. All autoimmune diseases chronically reduce testosterone levels. It has a genetic susceptibility component and can occur after childhood measles infection.
It has numerous non-specific chronic symptoms (wikipedia) - fatigue, general ill-health, lethargy, weight loss (anorexia, loss of appetite), malaise, nausea, abdominal discomfort, arthralgia of the small joints.
Part of the diagnosis is the Anti-Smooth Muscle Antibody test for immunoglobulins which attack smooth muscle. This test is often positive in Fibromyalgia patients who, of course, have chronic global muscle pain, like me.
As part of my testosterone investigation, my Anti-Nuclear Antibodies were positive and there was the presence of gamma globulins of "unknown significance".
This link is by far the best clinical information I have found on elevated serum ferritin differential diagnosis -
This is a good link on Autoimmune Hepatitis other than Wikipedia -
It is looking more likely that I will be seeing a hepatologist than a hematologist, or both, but I will be asking my GP for the Anti-Smooth Muscle Antibody test.
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sheryl37154 jed92784
Posted
I hope your dr comes up with a diagnosis for you.