How likely is it a UK GP will help me get these tests and treatments?

[markielock]

Hi guys,

I recently finished reading Dr. Sarah Myhill's rather illuminating book on diagnosing and treating CFS. It showed me there was a legion of tests and avenues that the doctors and specialists whom officially diagnoised me with CFS didn't explore. It also revealed a lot of the avenues they did explore, such as the short synacthen test, were incomplete or pointless for truly identifying fatigue or mitochondrial dysfunction.

I have recently moved so I don't have a specific GP yet I visit yet and I don't believe I live in the vicinity of a CFS-friendly doctor. I want to visit my new surgery and tell them about the condition, what's happened in the past, where I'm at now and what I'd like to try.

I would happilly get all these tests done privately and have a GP interpret them but I noted Sarah Myhill is no longer giving these tests out and I can't seem to find an alternative (if you can think of any alternative ways of getting them tested, please let me know!!).

My best option, as I see it, is to present the tests and treatments I'd like to try to a GP. However, I'm not sure this is the most effective way of presenting them to a GP, if I'm using the right language or even how likely they will want to explore these if they didn't in the past. I'm anxious about the doctor looking at me like I'm a hypochondriact and I am always worried about GPs not understanding or taking my condition seriously, which happened so often in the past (including the recent past), despite diagnosis and medical history.

These are the avenues I'd like to explore and would present to the GP:

General Mitochondrial function

• ATP Profiles: This group of tests look at levels of ATP, how well energy is released from ATP, the rate of production of ATP from ADP in the cells, and movement of ATP and ADP across mitochondrial membranes (‘translocator protein function’, which can be blocked by toxins or changes in acidity (pH))
  
  
• Plasma cell-free DNA – This is a measurement of cell damage
  
  
• Red cell NAD levels – This is a measure of the efficiency of energy production in the cells
  
  
• Co-enzyme Q10 levels - in case i need to change dosage
  
  
• Acetyl L carnitine levels - in case i need to change dosage
  
  
• Superoxide dismutase (SODase) levels - Three types of this enzyme should be measured. They indicate levels of zinc, copper and manganese, also gene studies to give an indication of toxic damage.
  
  
• Glutathione and glutathione peroxidase studies – These tests indicate levels of the trace element selenium
  
  
• Red cell magnesium – This test can be done as part of the ATP profile or separately.
  
  
• Thyroid function profile - This is a batch of tests for levels of the two thyroid hormones in blood – free T4, free T3 – and for thyroid stimulating hormone (TSH) which controls their production.

Tests for toxic stress

• Fat biopsy for pesticides and/or for volatile organic compounds
  
  
• Toxic elements in urine after taking a chelating agent called DMSA - testing for heavy metals.
  
  
• Translocator protein studies - part of ATP Profiles tests, but relevant here too as toxic chemicals can block this function.
  
  
• DNA adducts – This looks to see if toxins have stuck onto DNA
  
  
• Lymphocyte sensitivity test – This looks at sensitivity to chemicals, heavy metals, silicones and volatile organic compounds
  
  
• Electrical sensitivity

Tests for evidence of damage to cells

• Cell-free DNA is the test that measures DNA that is within the bloodstream and not contained within a cell membrane

Treatments

• Vitamin b12 injections
  
  
• Magnesium injections

I am quite shocked my previous tests didn't check for these things: especially how my mitochondria are functioning, which would categorically show if I am experiening poor energy production and flow etc...

Thanks for any help you can offer,

Mark

 

[Esther12]

I think that there are some problems with some of Myhill's work, and she seems to recommend some tests that have not been properly validated. I'm afraid it's been a while since I looked into the specifics of this stuff. I think that the MEA is currently doing some research assessing one of the mitochondria tests she has used.

I know some patients have found Myhill's approaches helpful, but I think that she can be over confident in a lot of things that she says.

 

[Indigophoton]

Hi markie, not sure you'll have much luck getting a GP to either carry out or interpret most of those. You might consider the Optimum Health Clinic. They generally get a bad rap on here because of their psychology side, but you can access the nutritional/testing side without having to have any contact with their worldview if you wish.

Have a look here, http://www.theoptimumhealthclinic.com/nutrition/. They seem to have most of your list. Just say that you're not interested in any psychological input (unless you are); they don't push it or even mention it again then in my experience (a few years ago). They are very on the ball with all the testing, and can interpret it for you. You can deal with them remotely if need be; they can send out kits for you to get blood etc drawn locally and posted to the relevant lab.

 

[Plum]

If you want to proceed with the tests Dr Myhill recommends I suggest finding a Dr from the ones listed on her website that is close enough for you to visit with: http://drmyhill.co.uk/wiki/Practiti...Allergy,_Environmental,_Nutritional)_Medicine

That is how I got the tests done.

 

[markielock]

Hi guys,

Thanks so much for the leads, I'll chase them down.

I think that there are some problems with some of Myhill's work, and she seems to recommend some tests that have not been properly validated. I'm afraid it's been a while since I looked into the specifics of this stuff. I think that the MEA is currently doing some research assessing one of the mitochondria tests she has used.

I know some patients have found Myhill's approaches helpful, but I think that she can be over confident in a lot of things that she says.

I agree. I think, overall, she offers a great overview and general roadmap to health, but she doesn't seem to make clear where she gets the data from to form these conclusions; there isn't a great deal of references for the information she presents on her website or even in the book on CFS so I can't go dive in to the studies or journals she follows etc...

I'll look into the MEA, but if you have any leads on where I can learn more about testing mitochonidral function and the science behind it, I'd be most appreciative.

 

[Esther12]

I'll look into the MEA, but if you have any leads on where I can learn more about testing mitochonidral function and the science behind it, I'd be most appreciative.

I wish I could be more help. It can be confusing and daunting to try to start looking at the evidence on this, but this is outside of the stuff I'm really familiar with. Maybe @charles shepherd would be able to link you to some MEA introductory resources on this?

 

[skipskip30]

It never hurts to ask but from my experience I wouldn't get your hopes up about a lot of those tests. You might want to just ask for some of the more 'normal' tests first such as the thyroid t4 t3. Ease your way into it rather than everything at once

 

[charles shepherd]

Mark

You might find it helpful to read:

1 The report (and pp slides) from our meeting at the John Radclife Hospial in Oxford last week on research into mitochondrial dysfunction in ME/CFS:

http://www.meassociation.org.uk/201...ondrial-muscle-research-in-mecfs-17-may-2016/

Also includes info on the other research we are funding into mitochondrial dysfunction in ME/CFS

2 The research that we have funded to compare the results of the commercial test (which has not been validated and is therefore viewed with scepticism by doctors who work with muscle disease)

http://www.meassociation.org.uk/201...-further-mitochondrial-research-20-july-2015/

3 The report from the Sussex meeting last Saturday on Research (Dr Amolak Bansal) and Management (myself) of ME/CFS:

http://www.meassociation.org.uk/201...ghlights-of-burgess-hill-meeting-14-may-2016/



Dr Charles Shepherd
Hon Medical Adviser, MEA

 

[markielock]

Thanks guys,

This has been very illuminating and answered more than I was expecting!

@charles shepherd , I shall look into these sources with great interest - thank you!

It never hurts to ask but from my experience I wouldn't get your hopes up about a lot of those tests. You might want to just ask for some of the more 'normal' tests first such as the thyroid t4 t3. Ease your way into it rather than everything at once

This is a very good point - perhaps I should try and get the more 'common' tests done. What I'm really interested in is checking my magnesium levels and try to push for the magnesium and b12 injections, which have been helpful for seemingly a lot of people. I'll see what I can do.

 

[skipskip30]

Testing for b12 seems very common so that might be a good one to ask for. Im not sure about testing for magnesium but it could be worth asking about.

 

[charles shepherd]

MEA info on magnesium supplements:

Research into magnesium status in ME/CFS, as well as the use of magnesium supplements, is summarised and referenced in the Treatment section of the MEA purple booklet

Based on this evidence, most doctors, including myself, take the view that in our current state of knowledge there is no sound evidence of magnesium deficiency in ME/CFS and the use of magnesium supplements is therefore a very speculative and unproven form of treatment for ME/CFS

It is also worth noting that magnesium can cause side-effects - especially at higher doses, some of which are symptoms of ME/CFS:
http://www.webmd.com/vitamins-suppl...gredientid=998&activeingredientname=magnesium

So it is possible that using a magnesium supplement could exacerbate ME/CFS symptoms such as dizziness and gastric symptoms

Dr Charles Shepherd
Hon Medical Adviser, MEA

 

[charles shepherd]

MEA info on vitamin B12 status and treatment in ME/CFS below

The most important piece of advice here is to NOT self-treat with vitamin B12 supplements/injections until you are sure that you do not have pernicious anaemia - as this can cause fatigue and ME/CFS like symptoms

And if not properly treated, or left untreated, pernicious anaemia can cause a very serious neurological complication - sub acute degeneration of the spinal cord


MEA notes on vitamin B12 and ME/CFS


1 This is a very helpful document which describes in some detail how people with a blood test which indicates varying degrees of vitamin B12 deficiency should be assessed and managed:

http://www.ruh.nhs.uk/For_Clinician.../B12_-_advice_on_investigation_management.pdf

2 Research into vitamin B12 deficiency in ME/CFS, investigating vitamin B12 deficiency in ME/CFS, and the use of vitamin B12 supplements, is covered in the treatment section of the MEA purple booklet:

http://www.meassociation.org.uk/201...e-latest-research-all-wrapped-up-in-52-pages/


This subject is also covered in more detail in Living with ME (Vermilion paperback available free from any public library)


3 At present, there is no sound scientific evidence of vitamin B12 deficiency in ME/CFS and no evidence from a good quality clinical trial to show that vitamin B12 is an effective form of treatment for ME/CFS. However, Regland et al from Sweden have reported that in a survey of 38 ME/CFS patients who had been receiving vitamin B12 injections in combination with folic acid at least once a week for six months, 15 reported a good response and 23 reported a mild response. Abstract: http://www.ncbi.nlm.nih.gov/pubmed/25902009


4 People must also make sure that a diagnosis of pernicious (= vitamin B12 deficiency) anaemia (PA) has been excluded before using vitamin B12. This is because some symptoms of pernicious anaemia can overlap with ME/CFS and if not properly treated pernicious anaemia can cause permanent and serious damage to the nerves in the spinal cord.


Sub acute combined degeneration of the spinal cord:

https://www.nlm.nih.gov/medlineplus/ency/article/000723.htm

5 Vitamin B12 deficiency can also be caused by lack of the vitamin in the diet (vegans being at special risk) and stomach or bowel conditions that either effect the ability to produce intrinsic factor or decrease the absorption


6 Vitamin supplements are not recommended in the NICE guideline on ME/CFS. So most doctors are going to be reluctant to prescribe vitamin B12 injections to people with ME/CFS - unless there are sound reasons for doing so


7 What NICE regard as inappropriate prescribing of vitamin B12 can also lead to a GMC investigation:

http://www.sunderlandecho.com/news/...e-says-patients-at-risk-as-a-result-1-6725330

Good short summary on vitamin B12 deficiency:

http://www.webmd.boots.com/healthy-eating/guide/vitamin-b12-deficiency

PA Society:

http://pernicious-anaemia-society.org/pa-diagnosis.php

Vitamin B12 myths:

https://www.sciencebasedmedicine.org/vitamin-b12-the-energy-panacea/

Dr Charles Shepherd
Hon Medical Adviser, MEA

 

[markielock]

Thanks Charles, this is excellent information. I've don't believe I have been tested for a b12 deficiency; this will likely be how I approach my GP in regard to b12. Looking through the NICE guidelines, I'm suprised by how little formal evidence there is out there for what people usually use to manage their symptoms, myself included.

We'll get there eventually..!

 

[charles shepherd]

Thanks Charles, this is excellent information. I've don't believe I have been tested for a b12 deficiency; this will likely be how I approach my GP in regard to b12. Looking through the NICE guidelines, I'm suprised by how little formal evidence there is out there for what people usually use to manage their symptoms, myself included.

We'll get there eventually..!

All you need to know about a vitamin B12 blood test:

http://labtestsonline.org.uk/understanding/analytes/vitamin-b12/tab/glance/

NB: This is from a private pathology lab service

 

[ukxmrv]

The reason your GP won't be able to offer the tests to you is simply that your local hospital (or where your GP has a contract to send tests to) probably doesn't run those tests at all on any patients.

A while back I approached my PCT (as they were then) with a list of different tests to see if any London hospitals that they had contracts with actually did the tests. Very few of them were available even if my GP wanted to run them

From memory the other tests I could get from your list would have been

RBC Magnesium
Thyroid Function

some of your other tests may be available in different parts of the country if there is a specialty there with an interest in something related to the test or in a research setting. To find these I do a search of published research on each item and see if there is a disease associated to it that may have a test somewhere in a clinic.

That doesn't mean that your GP will be able to send bloods there or even to be willing to either.

 

[sarah darwins]

Your GP also has to justify every test they requisition in terms of the 'current guidance'. As the current guidance for ME/CFS is mostly doing nothing — and actively discourages biomedical investigation — your GP may be understandably loathe to try running batteries of tests. Their hands are tied. If you crave data about what's going on in your body — and most of us who have been sick a long time do — then private testing is probably your only option.

 

[keenly]

MEA info on magnesium supplements:

Research into magnesium status in ME/CFS, as well as the use of magnesium supplements, is summarised and referenced in the Treatment section of the MEA purple booklet

Based on this evidence, most doctors, including myself, take the view that in our current state of knowledge there is no sound evidence of magnesium deficiency in ME/CFS and the use of magnesium supplements is therefore a very speculative and unproven form of treatment for ME/CFS

It is also worth noting that magnesium can cause side-effects - especially at higher doses, some of which are symptoms of ME/CFS:
http://www.webmd.com/vitamins-suppl...gredientid=998&activeingredientname=magnesium

So it is possible that using a magnesium supplement could exacerbate ME/CFS symptoms such as dizziness and gastric symptoms

Dr Charles Shepherd
Hon Medical Adviser, MEA

Ignorance is bliss.

 

[keenly]

GPs are not very clever.