Testing is the key to finding those vital clues to help you work out what is really wrong with you. Consider starting with the following two suggestions.

1) Get tested for Lyme Disease.  If your infection was recent and you remember having a bulls eye rash, ask your GP for the NHS Lyme test, or other test in your own country.  A bulls eye rash alone is considered diagnostic of Lyme but many doctors will try to dismiss it.

If your GP won’t test you, or the test comes back negative, you will have to order your test from overseas.  At the time of writing this there are several labs that offer testing.  I was tested by Igenex in the States.  Armin in Germany are widely used – in the UK order via www.aonm.org.  Or join one of the Lyme groups on Facebook and ask which tests members currently recommend.  (Remember – if you join a support group or forum – members are lay people like yourself.  They are rarely doctors or practitioners, just fellow patients sharing knowledge.  Decisions about testing or treatment have to be made by you after reading and informing yourself as much as possible.)

There are several excellent Lyme support groups on Facebook.

2)  Go to your doctor and ask for a full set of tests related to your thyroid.  At the very least these should be TSH (thyroid stimulating hormone), Free T4, Free T3, thyroid antibodies, iron, folate, ferritin, Vit B12 and Vit D.

Many labs, my local one included, will refuse to do the Free T3 test if your TSH is in range.  Yet the Free T3 test is the MOST VITAL of all the tests.  Your body does not use much T4, it converts it to T3.  T3 is the active hormone that your body needs most.  It is VITAL that this is tested.  My doctor had to put in a special request for the test to be done.  (See Why FT3 Needs Testing)

Ask your doctor for a full print out of the results.  You are entitled to this, although I understand some may make a nominal charge.  Once you have the results head straight to a thyroid forum, such as https://healthunlocked.com/thyroiduk a Facebook thyroid group or a similar forum in your own country.  Post your results and experienced members will interpret them for you and will help you to start working out whether you have thyroid problems.  (Please remember that most people on the forums or groups are patients.  They aren’t practitioners so you have to make your own decisions about whether or not to follow any advise offered.  I am also not a practitioner, just a patient, so again you must make your own decision about whether or not to follow any advise I might offer.)

3) Order the 24 hour adrenal saliva test.  I ordered mine from Genova Labs.  Members of the ThyroidUK froum mentioned in above can get a discount.

This is another vital test.  Your doctor might offer you a urine test, but this only tells you the total cortisol in any 24 hour period.  The saliva test takes 4 samples.  One on waking, one at midday, one late afternoon and one when you go to bed.  This test gives you vital clues about whether you have high cortisol, low cortisol or a mixture of both.

Again, once you have the results post them on a forum.  There is an excellent adrenal group on Facebook – https://www.facebook.com/groups/FTPOAdrenals/

What Will The Tests Tell You?

The Lyme and tick borne disease test may just turn out to be the single most important test you’ve ever had done. It was for me.  If it is positive it will tell you the underlying cause(s) of your problems.

The cortisol test will tell you how effectively your adrenal glands are working.  If they are not working optimally then any thyroid medication you take will not work properly.  This is why it is vital to know how you adrenals are functioning.  For me, adrenal problems were the first key to starting my improvement.

The vitamin and mineral tests will tell you if your levels are optimal for any thyroid or adrenal medication to work effectively.  Low iron or low Vit B12, for example, can prevent your body from utilising thyroxine effectively.  Very low B12 on its own can cause most of the symptoms of ME/CFS.  Another reason why testing is the vital clue.

The TSH test on its own tells you little.  TSH is not produced by your thyroid, it is produced by your pituitary.  For a variety of reasons, your pituitary may not function effectively enough to produce the level of TSH that your thyroid needs.  This is why it is VITAL to know your Free T4 and Free T3 levels. If you test positive for thyroid antibodies you might find that going on a gluten and dairy free diet will help calm the auto-immune reaction.

Other Tests

There are many other tests than can be done.  Start with the ones above and see what clues they give you.

You might consider asking for an Aldosterone test.  Aldosterone is produced by the adrenals and too little can cause low blood pressure.  I believe this is treated with fludrocortisone, but it isn’t a problem I have.

If you have both thyroid and adrenal problems, you might consider asking for other pituitary hormones to be tested or ask for your sex hormones to be tested as these are also controlled by the pituitary.

Testing is the key

Despite what your doctor will tell you, testing is the key if you have an unexplained or complicated illness.  You will need to learn to interpret your results and make decisions based on them for yourself.

You will need to read, learn and talk to others to help you work out which tests to order or ask for.  For example, I ordered a neurotransmitter urine test, which was very enlightening.

Make sure you always get a print-out of your test results and never start supplementing without first getting tested.  The symptoms of deficiencies and excesses can be similar.  Don’t guess.  Testing also helps you monitor your treatment.

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