The need for CK checks
For McArdle disease (GSD5) and some other muscle GSDs it is a good idea to get an understanding of your Creatine Kinase (CK) levels. This involves a series of blood tests to establish your baseline level – that is the level of CK you have in your blood normally, without any particular injury. Over a number of blood tests you can then establish your average level. Several research papers have reported the average level across many patients as being around 2,400 iu/L. If your baseline level is above this figure it may be a prompt to see if you can improve your self-management to reduce your baseline level.
The turnaround time for this test means it is not ideal for episodes where you feel you may need medical attention. CK is not the only factor, you must consider feeling very unwell and/or reduced urine output. However, a level of over 10,000 iu/L would certainly suggest that medical attention would be a good idea. This test could also be useful to check your CK level when you have a bad episode, to help you develop an understanding of the level of damage you have done in each scenario.
Problems with accessing CK checks?
With GP surgeries being overloaded, some people find it very difficult to obtain a timely CK check when they have an episode. Ideally you need to establish a procedure whereby you can go in to the surgery without an appointment to get a blood sample taken by a appropriate member of staff. Having to wait days for an appointment to have blood taken will undermine the value of the results.
The alternative is to go to the A&E department of your hospital, but there you may wait many hours and could even be refused a blood test. (For those with McArdle Disease, it should help if you take your Medical Overview booklet with you and show the section on CK.)
This is just an option. Obviously, stick with the NHS if at all feasible, but now there is…
A private alternative
Medichecks now offers a postal-based service for CK checks. You go online to their website and order the CK blood test, the pack will be dispatched by first-class post so hopefully you will very soon be taking the blood and returning it in the prepaid packaging. When opening your Medichecks account it is a good idea to put a comment in the reasons for testing section, about having McArdle disease (or other GSD) and that a high CK is expected, just so that the medical interpreter does not get alarmed.
The pack contains everything that you need and full instructions on how to take the blood. There is a helpline to call if you have any questions. The test requires a finger prick using the lancet supplied, then squeezing out enough blood to fillone of the tiny tubes. (It can be a little challenging to achieve the required volume but you soon get the hang of it.) You then seal the sample in the packaging and return it, post paid, to the lab.
You can have confidence in the results as Medichecks use fully accredited laboratories just like the NHS use.
The response time
Medichecks will put your result securely online and send you an email to advise you to log in and see the result. The quoted turnaround is 3 days from when Medichecks receive the sample. If when ordering the test you authorise your results to be given without medical overview by Medichecks, the result is likely to be available a little sooner. So if all goes smoothly, the whole process from ordering the test kit to receiving the result is a three to four day turnaround.
These turn around times are not really suitable for checking on severe episodes of rhabdomyolysis, when urgent medical attention may be needed.
If you still wish to use Medichecks, you can cut this turnaround time by about a day. Order a blood test to hold at home for when you need it. This will normally give you your CK result within about 72 hours of deciding you need it. (Just be aware that you have six months within which to use the test before it expires.)
An alternative more comprehensive test
Medichecks also offers many other tests. One is called “Baseline Fitness”, covering 16 tests (including CK). This is excellent value and could be of interest, but remember you are likely to need help in interpreting the meaning of any results which are out of the normal range.
Discount for AGSD-UK
We have negotiated a discount with Medichecks. When ordering your blood test online enter the discount code “GSD520” which gives 20% off the full price of tests. The normal prices are £39 for the CK test (£31.20 with discount) and £69 for the Baseline Fitness test (£55.20 with discount).
Please let us know how you get on
If you have difficulty accessing a CK test through the NHS and decide to give this private option a try, please let us know how you get on. Contact us via the “Message us” form.
Photo: the blood test kit from Medichecks is very well presented – with lancets, blood collection tubes (for CK you just fill one), protective packaging, disinfectant swabs, complete instructions and a pre-paid return envelope.