Testing can become an important area for health recovery. Diagnosis doesn’t necessarily mean the end to your health investigations, and certainly for ME/CFS peeps, it’s not advisable to leave your testing and results in the hand of your GP or even ME/CFS service. You’ve got to get a full picture for yourself.
It’s essential you take some responsibility here if you want to properly heal. Even if you’re on medication, this won’t solve the root cause, it’s just a crutch to help with pain and for management purposes. Try to get knowledgeable about what you’ve been tested for, what’s been ruled out and what needs further attention. Here’s a list of essential things to know about your tests:
- It’s a myth that your Doctors surgery contact you if a test has come back abnormal. Often the tests aren’t looked at until you’ve made the appointment and you are sitting in the same room with your GP unless I’m the case of emergency testing. In one case, I found a immune test which was abnormal, and even had highlighted the words: CONTACT PATIENT, three years after this particular test. In fact it was in the first batch of tests I had, just when I began to feel unwell – what I now know to be the start of ME/CFS!
- Ring ahead of your appointment and ask for a print out copy of your blood tests – look them over first before your appointment
- The list on the left indicates what is being tested
- The next list on the right is your test result – generally in a number format
- The last list on the right is the reference range to show what is normal and abnormal
- Look at your result and compare it to the ref range
- Even if you get told it’s fine, it matters a great deal if your result is near either end of the ref range
- A good doctor should check for this even within the range, whilst reviewing the symptoms you describe
- This means you have a good detective – generally there isn’t the time for them to do this, or even explain things to you
- If there is a star next to your result, this means it’s to be looked at – generally it means abnormality, so they doctor should take it further or at least discuss it with you
- Often the computer makes mistakes and does not add a star next to an abnormal result
- If the doctor really is rushed, you may even get told your blood test is fine, when it’s in fact abnormal – this has happened to me 7 times!
- In addition to a basic blood panel, electrolytes, B12, folate and ferritin, other good tests to eliminate are immune: IgA, IgM and hormones, serum cortsiol and thyroid TSH and antibodies, try and ask for your T3 and T4, although unlikely on NHS. Try to eliminate Lupus, Lymes and get rhumatoid factor checked. Also worth checking on celiacs disease.
- Keep notes of your doctors sessions and any errors encase you need to log a complaint
- Request any referrals you need
- Don’t allow yourself to be put into the mental health box – comorbid anxiety can be part of the condition and of course you would be depressed if you are so terribly Ill, but there are normally other things going on biologically which won’t be addressed or corrected if you give in to being victimised purely as a psych case.
- E.g. Dysfunctional ATP (severe metabolic anormalities) can appear like depression
- The impact of knowing the difference means, ironically high doses of magnesium and B12 could help you on the road to recovery, but an anti-depressant could do little to physically move you on!
Don’t give up, or be talked down to. Find out what’s happening, use your recovery plan in addition to medical help and interventions. Equally I find it important to continue to work on self-awareness and the psychological component is essential to making long-term recovery and transformation, because there may equally be some elements of internal stress and pressure which you may be putting on yourself. It’s a integrated approach. Check out the blog on How to make a Recovery Plan for more info.