Has anyone had experience with Dr Sarah Myhill, Dr Damien Downing or Elliot Overton?

[Mumma02]

Just what the title says! My entire body is shutting down. Have been on a decline since having my second child 3.4 years ago and in desperate need of help to keep surviving.

M.E/CFS symptoms
Small fiber neuropathy with autonomic involvement with no identified cause.

Can't keep waiting for NHS appointments that get me nowhere - while getting worsr as the days go by. Holding down my job and kids is getting too much.

Willing to pay privately but also not a millionaire so needs to be for somebody worthwhile.

Hi. Sorry you're struggling so much.

If you google 'mumsnet myhill' you will find several threads discussing her and CFS. I've got her book, but haven't ever seen her.

If you wanted to try a few things before seeing her, I have had far more help from nutritional therapists than the NHS. I always use members of BANT. Some offer SIBO and stool testing etc.

If you haven't already, I'd also recommend getting copies of blood test results from your GP and checking your numbers for ferritin and thyroid. GPs will often tell you they are normal when they are far from optimal.

For example, GPs usually say ferritin over 12 is fine. In reality lots of people feel terrible at this level and ideally you want to aim for it to be over 100.

@helleborus thanks for replying. My ferritin has ranged from 9-25 (currently 20) for the last 3 years. I don't think it's ever been much higher than 30 though so was doubting this was the cause of everything. Were you diagnosed with CFS? I don't actually think I have this - but some kind of illness linked to this which sometimes causes me the symptoms. Including orthostatic intolerance at times, random anxiety, muscle aches etc.

Following as I've just come across Sarah myhill

You can get Vit b12 injections everywhere now I’d start looking into that

eat as clean as you possibly can

and walk walk walk as much as possible if not walking do yoga

Yes, I was diagnosed with CFS about 20 years ago, interestingly when my ferritin was 13. Like you, I had a toddler and had very low ferritin values and been fatigued since giving birth.

You might find this paper about iron deficiency interesting
www.ncbi.nlm.nih.gov/pmc/articles/PMC5986027/

I only received treatment for my low ferritin 5 years ago when it had been left so long it caused me to be anaemic so I 'qualified'.

Prior to that I'd achieved significant improvements in my health through following a very low sugar diet and taking various supplements recommended by the nutritional therapists. They felt candida was causing a lot of my issues.

Different treatments work for different people with CFS. Unfortunately it might just be a case of trial and error until you find what helps you. I think my CFS symptoms are probably the result of a mix of causes.

I should also have said that learning to pace myself was vital. Forcing myself to keep going when my body was saying no was the worst thing I could do.

I hope you have some help and support to enable you to get some rest.

This is very interesting as I have been struggling with various symptoms post Covid, and had wondered if a deficiency could be worsening it. Where might one find out what the optimal levels for iron, thyroid, B12 etc are please?

Ferritin needs to be above 50 at least, ideally 70-100. I've had CFS/ME for decades but only realised I had low ferritin in the last 5 years. I took loads of prescribed iron supplements which eventually helped after 3 months but gave me a terrible time with my stomach and after a year my levels were low again.

In the end I was so sick of the exhaustion that I paid for a private iron infusion a year ago and the consultant also taught me how to self-inject B12 as those levels were low too.

My health still isn't perfect but I definitely have more energy and my ferritin levels are over 100 a year later.

The consultant suggested I may have something wrong with my gut which is impacting absorption of nutrients. He suggested a low histamine diet and checking for autoimmune issues. I haven't got very far with either of those yet though.

As an aside, have you signed up for the Decode ME study OP?

Also, I used Medichecks to get my full blood results. They offer an 'active' B12 test which is meant to be more reliable.

Sorry, forgot to answer the main question! I saw Dr Downing about 20 years ago. He asked lots of questions about my diet and did a few tests but ultimately made no impact for me. That's not to say he hasn't helped others of course.

I've read lots of Dr Myhill's work and found it interesting but was ultimately put off by how much she sells products via her site.

Unfortunately with something like CFS/ME where there's no clear treatment people will try/sell all sorts and it's easy to spend a lot of money getting nowhere (like me!).

I would start with a full blood panel if I were you so you can really see what your various levels of ferritin, B12, folate, thyroid, red blood cells etc are.

@belimoo were you diagnosed with CFS or did it turn out to be deficiencies? Did Dr. Downing actually treat you or just advise?

I was diagnosed with CFS a few years before I saw Dr Downing. He did a few (expensive) tests and asked me about my diet but didn't make any helpful difference.

I was told CFS/ME is like a puzzle and you have to just work on making every aspect of your health as good as possible. So vitamin and mineral deficiencies is one obvious area to correct but it won't be a total cure unfortunately.

Incorporating a regular rest period in to your day was another recommendation which helps. You have to make sure you're lying down with no distractions, including your phone or TV. Even if it's just for 15-20 mins I find it helpful.

I had several appointments with Dr Damien Downing and had loads of very expensive tests but he didn’t help me at all and my chronic fatigue is no better. I can’t afford to pay someone who hasn’t helped.

Have you actually tried getting a diagnosis through the NHS? I did. Recently. I am under a specialist clinic and it is very good.

Have you had an iron panel done?

@Quitelikeit had results back last week actually.
Hb - 123
Ferritin - 11
T Sat - 6.5%
Iron - 6

I feel terrible!

@dizzydizzydizzy do you mind me asking what symptoms you had and what you were diagnosed with?

Insomnia
Dizziness if I try to do too much - can be physical such as walking or cognitive such as doing paperwork
Headaches
Sore throat
Irritability
Forgetfulness
Aches and pains

There are loads of symptoms and everyone has a different subset of them.

Your ferritin is far too low. I would feel horrendous at that level. It needs to be above 50 or even 70 ideally. When mine was at 9 I could barely function at all. I'm not saying that's your only issue but it would be interesting to see how you feel if you fix that.

Save your money and just sort your iron out.

Do you know why it is so low? Common causes would be diet and/or periods. If it's neither you may need more tests to see if you are bleeding.

Can you pay privately to see a haematologist? You need someone v experienced to look at your bloods who can then decide what it could be or at least know what to test next

@AnnaMagnani my periods are very heavy with clots so I bet it's that.

@Quitelikeit what can a haemotologist actually diagnose?

You need iron tablets, however without sorting out your periods you are going to struggle to increase your ferritin. It's like trying to fill a bath without putting the plug in.

Honestly not seeing what a haematologist is going to diagnose here. The bloods are obvious - lack of iron, as is the cause - heavy periods.

Agreed. Your iron is very low. NHS cut off for iron deficiency is 30.

Be careful. Two consultants told me I had CFS/ME and basically told me I would need to give up work etc. Turned out I had low B12/Folate, low ferritin (although not as low as yours), very low vitamin D and secondary hypothyroidism. Ten years on I am perfectly well.

Low iron causes heavy periods and heavy periods cause low iron. It is a vicious circle. If oral supplements don't work you may need to look at an iron infusion. See what the NHS iron protocol is for your area and go from there.