High Ferritin - Low Haemoglobin (awaiting diagnosis to this mystery)
Posted , 4 users are following.
Hi Everyone,
So I have been getting constant High Ferritin results and low Haemoglobin (blood iron) results.
In the beginning the GP thought I was severely anemic and gave me iron supplements, which resulted in me being sick to my stomach with severe cramps, dizziness, fatigue and extreme itchiness on my arms and legs. Then another doctor did a test and they saw that the Ferritin levels where very high, but iron levels in my blood were still very low.
They have also tested me positive for Cytoplasmic Antibody, negative for inflammation.
3 years on the latest test this week was that my heamoglobin is low but not anemic, and Ferritin still very high. They are testing me next for Hemochromatosis and liver function.
Has anyone else had this presentation of Hemochromatosis?
General symptoms included:
- extreme fatigue
- lightheaded
- easily get infections
- abdominal pains and digestive issues
- joint pain mostly in hips and shoulders
Thank you for your comments!
0 likes, 8 replies
lisa76912
Posted
Also wanted to add in symptoms:
(all of which I just prescribed to being a mother to be honest)
sheryl37154 lisa76912
Posted
This is mysterious. There is a form of haemochromatosis called ferroportin. I am not experienced with that, but it is worth looking up.
Is your TS% higher than 45%? Is your MCV >94%
Another, is that your high ferritin may have nothing to do with haemochromatosis but more to do with inflammation and/or infection, liver problems, malignancy, alcohol, etc., given your issues.
Gilbert's syndrome? I have come across a couple of people with this with similar symptoms.
Even if it is found that you have the HFE genes, there is something else going on. I hope you find out soon so that it can be treated. Let us know how you go.
lisa76912
Posted
Thanks for the reply Sheryl, this is the first doctor who seems to be testing me properly. She tested for inflammation and said it was normal. I haven't received all the details of the test results yet as I only received a call from the nurse and them referring me to get more tests done. I have also had consistent high ferritin and low haemoglobin for more than 3 years so there is definitely something going on.
Next up - test for haemochromatosis gene and check liver function...
I find NOT knowing very frustrating. At least if I have a diagnosis I can get it treated.
I will definitely check out your suggestions.
Will keep you posted.
lisa76912
Posted
Hi Sheryl, I am still kind of figuring out how to read these results...
I am 39 years old, no alcohol abuse, no obesity, no diabetes, no inflammation markers, pretty healthy otherwise (when not exhausted and getting infections) oh and history of endometriosis
In 2018 test results:
MCV = 87.4 (79 - 100) so normal
Haemoglobin = 12.2 (12.4 - 17.7) so low
Ferritin = 197 (15-160) so high
Previous years results:
Saturation levels at 3% - very low
Red blood cell count 3.95 - low
Iron 2.4 (9.0-30.4) low
Ferritin 148 (10-120) high
sheryl37154 lisa76912
Posted
You have two Ferritin results listed but I think the first one must be something else as the last one is consistent with the range.
148 is a little higher than the range but is not considered a dangerous high.
Venesections are not allowed at less than 11 or thereabouts.
Infections can cause massive increases in ferritin and you say you get a lot of infections.
I wonder how much inflammation is caused by endometriosis. I had that all through my abdomen and it is not fun - the pain is terrible, so it must be causing inflammation, as well as causing very heavy periods - in my case anyway. With severe endometriosis you are virtually having periods in your abdomen. This will cause a low Hb.
I wanted to be discrete about asking if there is a possibility of approaching menopause. I know now you are 39, but that is when I had to have a hysterectomy, oopherectomy, and as much endometriosis in my abdomen removed as the eye could see by the surgeon.
With endometriosis, your ovaries may not be working as well as they should be, giving you menopause symptoms which are very much like haemochromatosis for a woman, and that was one of my first thoughts when I read your symptoms. I suggest you ask your dr to test all your pituitary gland hormones.
After the hysterectomy, I was no longer menstruating and the symptoms of HH hit me with a vengence. I was not diagnosed until 9 years later when one of my hips broke up. There was no google back then so I could not investigate for myself.
You did not mention your TS% which is an important marker for HH regardless of your ferritin level. So if your dr is going ahead with a genetic test, that is really good. But I feel that you also have something else going on as well, which needs to be treated. Any issues, even if they are caused by HH, still need to be treated in the normal way.
Keep in touch and let us know how you go.
ally_4949 lisa76912
Posted
hi
I was diagnosed with hereditary
haemochromatosis last november, i have been having weekly venesections, all the symptoms you describe i had. terrible joint pain shoulders & neck manly extreme fatigue, its makes you feel awful
ALLYCAT
lisa76912 ally_4949
Posted
Hi Ally, thanks for your comment. Have you been feeling better since your venesections?
lisa76912
Posted
Okay, so I now had another call from the doctor (GP) and she is not sure how to read my blood test results so she is referring me to a Haematologist.
The GP is saying that she thinks it is probably just an anomaly and that there is probably nothing there.
However by Ferritin comes back at 220 one week and at 150 the next? (anything over 150 is considered high)
And then my Iron Saturation is only 16%
So nothing makes sense.
I am frustrated because they were supposed to do a Gene test but instead tested the blood levels again.
And now she says she thinks there is nothing there...
So many doctor's have been puzzled and kept trying to refer me to other ones.
I am hoping the Haemotologist will be a bit better at finding out what is wrong. If anything.