Q&A 91: iron overload and MS

My short answer is no. Current scientific and clinical evidence does not definitively establish that iron overload due to haemochromatosis worsens the prognosis of MS.

Case study

I suffered what I now know was optic neuritis in my left eye in 2010. I buried my head in the sand somewhat as I feared I had MS (my mum was diagnosed with SPMS when I was 8 years old), and I chose not to see a neurologist – I suppose I did not want to face reality at that time. I recovered from the optic neuritis after about 3 weeks and had no further relapses, but suffered a lot from invisible sensory symptoms (mainly tingling in both legs) over the years. I have never been in pain with the condition, but my balance got progressively (and noticeably) worse to the point where I felt I had no choice but to seek help. I did not have to wait very long for my diagnosis. I went to see my GP in late February 2020 to report my symptoms, and he referred me to a neurologist immediately, whom I saw in March 2020. The neurologist sent me for an MRI scan, which I had in April 2020, and I was diagnosed with MS in May 2020.

I was diagnosed with PPMS in 2023 and started on ocrelizumab (Ocrevus). I currently have an EDSS score of 4.5. I am by no means depressed, but I do suffer from anxiety at times and fear of the future. The MS-Selfie research article “Uncertainty associated with MS: Are you comfortable with it?” primarily concerns RRMS. Does this mean there is an inevitability with PPMS, and the same level of uncertainty does not apply to PPMS? I am guessing that it depends on a lot of different factors, as many things do, but I just thought I’d ask as I see hope as being essential when dealing with this condition, and I have only ever heard negative things about PMS outcomes. Is there anything to be hopeful about or optimistic about this condition besides priority parking and free theatre tickets?

Marginal Gains

Since my diagnosis, I have become obsessed with trying to improve my chances of having better MS outcomes. With that in mind, I have been attempting to adopt the principle of Marginal Gains as a treatment philosophy for the management of my MS, as suggested in MS-Selfie. I have been relatively happy with my holistic management of the condition so far. However, I find it challenging to abide by a healthy diet when relying on others to go shopping every week/cook every day. Also, fatigue/weakness affects my ability to exercise as much as I want.

Iron Overload in Multiple Sclerosis

Part of my attempt to make marginal gains (and to deal with potential comorbidities) has included having private blood tests done every 6 months or so. These blood tests check 150 data points linked to key health areas. My blood test results have been largely unremarkable, apart from the fact that I have had high iron levels and high ferritin levels in my blood. It was suggested that a potential reason for this was supplementation. I was taking broccoli sprout extract supplements then, as I had read that the sulforaphane compound within them calms inflammation and promotes anti-ageing, among other things. However, I know broccoli is high in iron, so I stopped taking the broccoli sprout extract supplements, thinking that this might make a difference. I had my blood tested again 6 months late,r and my iron and ferritin levels were still high. I considered the supplements I was taking again and discovered that vitamin C can help the body absorb iron. Therefore, I stopped taking vitamin C supplements, but my blood test 6 months later still showed high iron and ferritin levels. I was referred to my GP by the private clinic to investigate matters further.

To cut a long story short, my GP had my blood sent for genetic testing, which revealed that I have genetic hemochromatosis. This condition causes the body to absorb excess dietary iron, resulting in iron overload of the liver, pancreas, heart, joints, and other organs. Hemochromatosis is a treatable condition, and I am currently having it treated by venesection weekly. However, if hemochromatosis is not diagnosed and treated early on, iron can build up in the body and cause serious problems, including liver damage, diabetes, arthritis, and heart issues.

I didn’t think about a connection between iron overload and MS until recently, when I revisited Professor George Jelinek’s book, Overcoming MS (Second Edition, 2016). I by chance stumbled across a paragraph about iron. It is noted that “There is evidence that iron plays a role in inflammation” (see Zhang et al., Cytokine toxicity to oligodendrocyte precursors is mediated by iron. Glia, 2005). It is also noted that “iron overload may play a part in the development and progression of MS” (see N Abo-Krysha and L Rashed, The role of iron dysregulation in the pathogenesis of multiple sclerosis: an Egyptian study. Mult Scler,2008).

Further Questions

A simple Google search of iron overload in Multiple Sclerosis reveals that there have been several studies since the two mentioned above, investigating the relationship between iron and MS. As a lay person, I have not tried to understand/read this research properly as I see no point, but my additional questions to you are as follows:

In your opinion, and on the balance of probabilities, will my discovery and treatment of iron overload improve my MS outcome and slow my MS progression? In other words, had I not discovered my hemochromatosis and iron overload, would my MS disease course/MS progression have been more severe, in all likelihood?

If my discovery leads to better MS outcomes, would it be worth it for others with MS to have blood tests for iron/ferritin, and if high, a genetic test for hemochromatosis?

Are there any other genetic tests (like the test for hemochromatosis) that you know of that are available to the general public and could reveal a condition that would likely play a part in the progression of MS disease?

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Prof G’s answers

Q1: Does this mean there is an inevitability with PPMS, and the same level of uncertainty does not apply to PPMS?

As you know, I am in the camp that classifies MS as one disease and not three or four diseases…..