Hemochromatisis with a Ferritin of 394.0 ug/L -... - Thyroid UK

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Hemochromatisis with a Ferritin of 394.0 ug/L - range for women is - 13.0 - 150.0 yg/L -

victoria99
victoria99

For a very long time I have been looking around to help myself to move forward in understanding my thyroid disorder so I hope that this makes sense (especially to my two tutors)! I think there might or could be a link between my raised Ferritin and some family members including my mother who died in 1951 at the age of 41 with "auricular fibrillation". I have spent the last few days trying to evidence this but I am afraid my increasing brain fog might mean that I am simply "over the rainbow"! This (as many of my friends here will know) it is identified as "too much iron" or perhaps better as hereditary haemochromatosis. I have looked at several podcasts about this and reviewed some (what I think) are relevant sources.

My cousin this afternoon identified a few family members who might have had the relevant gene mutations from one parent or even two parents but, of course, this is not yet confirmed. An overload of iron causes seems to cause havoc in the whole body just as thyroid disorders do; in fact it could be mooted that they are inextricably interwined one with the other.

One gentleman I viewed earlier today spoke about being regarded as his friends and family as "always complaining". However, after a long journey trying to find what was wrong with him, his efforts concluded in a very unexpected but wonderful "end game"! He and his brother both carried the gene mutation from both sides of their family which meant they were "carriers" too! DNA tests were performed and showed that there was evidence of this in the next generation!

I think someone here said that you must "listen to your own body" and I am trying to do this now although I might be hearing a lot of junk! (Sorry)! However, I think now that my use of Sertraline combined with Statins initially was an error, i.e. I tried to look at my past medical history which seemed to support this new revelation.

I think that I will now try to find out my own DNA so any help in this connection will be much appreciated.

Apologies for this rambling post but I thought I might try to consult Prof. Tort on my own behalf to get his views on my present situation. I see that some of our colleagues has done this already. Any help here will also be appreciated. The other person I thought of was Dr Karen Adamson. Both of these experts are in Edinburgh.

One of several sources I consulted was "Investigation of a raised ferritin result" found at: intranet/departs/Haematolog.... If I was OK I would be able to tell everyone more about things here but brain fog, memory loss, joint and muscle pain, wobbly legs et al prevents it.

Thanks to everyone for all their support and kindness.

PS. I am going to get a copy of Dr Skinner's book and others.

13 Replies
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victoria99,

I have Hashimotos, and Haemochromotosis (iron overload) which is a genetic condition where my body can not get rid of excess iron. The two easy identifiers are high ferritin and high transferrin saturation.

The term Haemochromatosis encompasses at least four types of genetic iron overload conditions, most of them recently distinguished from one another as a result of the identification of a series of genes related to iron metabolism.

There is a genetic test the National Health will do to identify if you have a mutated gene. You need to get your GP to refer you to a Haemotologist. Your GP may not know about Haemochromotosis (my GP didn't) so make sure you arm yourself with some literature.

Be aware that ferritin can raise through inflammation or an infection and if you have Hashi, inflammation is common.

Treatment is fortnightly/monthly theraputic phlebotomy until iron levels drop. My Hemo likes both my ferritin and transferrin saturation levels around 50, and I now feel well.

There is a HU forum for Haemochromotosis but not many members. The best support I found was through Haemochromatosis UK (link below).

.

Haemochromotosis UK

haemochromatosis.org.uk

Haemochromotosis Genetics.

hemochromatosishelp.com/wp-...

victoria99
victoria99 in reply to radd

Thank you Radd for your reply to my ramblings. Simply, your response to me totally accords with the work I have done over the past few days and what I have found. I could say that you might have been "walking and guiding me" in my journey. Enough said. I really appreciate your help here which is much appreciated by me and my husband. As far as literature is concerned I am now sure that I have more than enough evidence for my own GP. I have downloaded a fair bit of information already from your "other" society.

As I have remarked before this forum might be described as an all-encompassing refuge.

Thanks for your kindness and support here Radd.

SlowDragon
SlowDragonAdministrator

Your Gp should refer you to haematology for testing ASAP

Ferritin result was very high in previous post

healthunlocked.com/thyroidu...

Dear "Slow Dragon" thanks (as ever) for your advice. Must try to see GP ASAP. Enough said. Hope all is well with you. Many thanks - Victoria 99!

SlowDragon
SlowDragonAdministrator in reply to victoria99

You should see GP as soon as possible.

You posted those results originally a month ago

My ferritin has been over 900 for two years and I am having second appointment with GP in 20 mins. Liver function is OK .

SlowDragon
SlowDragonAdministrator in reply to Treepie

Treepie

I hope you insisted on referral to haematology asap

Do you have Hashimoto's?

redriverhealthandwellness.c...

verywellhealth.com/hypothyr...

Rarely, certain diseases, like hemochromatosis, can deposit abnormal substances (iron, in the case of hemochromatosis) in your pituitary gland, causing central hypothyroidism, or less commonly, your thyroid gland, causing primary hypothyroidism.

What are your most recent results for vitamin D, folate and B12 too

Treepie
Treepie in reply to SlowDragon

Slow Dragon

Thanks for your reply.

Yes ,I have Hashimotos although for the first time my tests last month showed a drop below the range max.

Active B12 ,220 (25.10-165) ,I am cutting down the supplement

D3 ,69.8 (50-200) started winter supplementing

Folate ,9.94 (2.91-50)

serum iron 21 ( 11-31) so GP says not haemochromotosis. However read vit C in excess can increase ferritin and have been taking 1000mg plus fruit etc.

For last two months had bad acid problems .Cider vinegar ,betaine & pepsin did not assist.PPI has made the difference but clearly do not want to stay long on that .

GP has fast track referred me to gastro enterology which he says is same dept.as haemotology to check for cancer although he says my symptoms do not suggest that is the problem.An endoscopy might reveal the cause of the gut problems but I think he was baffled by the ferritin.

SlowDragon
SlowDragonAdministrator in reply to Treepie

Are you on strictly gluten free diet?

Been tested for coeliac first?

Vitamin D may be better between 80-100nmol

You might benefit from a daily good quality vitamin B complex, one with folate in. This would help raise folate and B12

Could reduce then perhaps stop B12.

Interesting iron isn't high

Ferritin can be high due to Hashimoto's, although it's far more common to be low

If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 3-5 days before any blood tests, as biotin can falsely affect test results

endo.confex.com/endo/2016en...

endocrinenews.endocrine.org...

Treepie
Treepie in reply to SlowDragon

Not Gluten Free. Just ordered the food intolerance test as advertised in Thyroid UK mag. Not tested for coeliac .Gut problem only developed over last two months.

Been intending to purchase Thorne B complex with Folate when I had run out of B12 . Will probably await my appointment now at end of next week .

Had noted the biotin effect.Not sure if I stopped the vits sufficiently long enough before last tests,just four days ,a low dose though 150mcg .

Iron being normal is what has baffled the GP i suspect.

SlowDragon
SlowDragonAdministrator in reply to Treepie

Many of us with Hashimoto's need to be gluten free. I had absolutely no gut symptoms and two negative coeliac blood tests twenty years apart. Endoscopy revealed severe gluten intolerance.

The only way to know is to try it for 3-6 months. Absolutely strictly gluten free. Ideally test TPO antibodies before going GF and after 6 months GF

If antibodies not dropped and don't feel any different go back on Gluten, see if find symptoms get worse

Treepie
Treepie in reply to SlowDragon

Do not want to give up home made bread! But yes it may become necessary hence the food intolerance test and endoscopy.Bracing myself.

Last Thyroglobin antibodies 10.9 ( 0-115)

Thyroid Peroxidase antibodies 22.8 (0-34)

When diagnosed in mid 2014 TPO WAS 690, 43 IN 2016 AND 50 LAST April.

SlowDragon
SlowDragonAdministrator in reply to Treepie

Well antibodies have dropped impressively....perhaps you will be able to continue with home made bread

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