Hi there. Thank you for your question. I will be helping you out with your queries
Have you had your vitamin D levels checked?
Please let me know.
Hello - no I did not, but I have been taking Vitamin D supplements regularly
I think that you should have a vitamin D test done to make sure its normal even though you are taking the vitamin D supplements regularly.
Have you had your thyroid function checked?
T3, T4 and TSH?
Would the vitamin D levels affect the CK totals and muscles so much?
Thyroid function was checked and is normal
Yes low levels of vitamin D can cause myositis and high levels of muscle enzymes. Even though your level of 1275 is high but its not as high as you think.
Its only mildly high.
Levels in the thousands is something that is considered very high.
I thought that the CK was very high as the range given for the blood rest was up to 300
Is the test for Vitamin D just a standard blood test?
Yes its a standard blood test.
Done all over the world.
Vitamin D deficiency is very common.
Have you had your calcium levels checked as well?
I have just sent you my recent test and biopsy results, can you explain what they show other than high CK?
I have not had calcium levels checked
Please wait a moment
When these levels were raised were you already on some kind of statins?
I think that you should have vitamin D and calcium along with phosphorus levels checked.
statins = cholesterol medications like zocor.
No statins initially, they were prescribed in May 2013 after my initial CK test which was at only 500 in April 2013
I am just checking regarding the calcium test, I have had so many done that I am not sure
But both drugs were prescribed when not actually needed, in the Philippines
I did not have calcium levels checked
You should have:CalciumPhosphateVitamin D levelsYou should also be on all unnecessary medications because those are one of the most common causes of such elevation of muscle enzymes and symptoms like what you are having.
I think that at the present moment you need to wait and get the CPK repeated after a few months to see how it goes and now your symptoms go. Plus I would recommend doing these tests that I mentioned in the meantime.
All medications were stopped after 2 weeks and that was a year ago and I understand that those could not have caused permanent damage, is that correct?
What would you determine to be really elevated CK totals?
Should I not worry about these at the level they are?
The really high levels are over 10,000
Levels of over 1000 are high but not very high.
They can be said to be mild to moderately high.
Are you with me?
Yes I understand, it's just getting very frustrating with the information I am being given being so conflicting and unfortunately a lot of the tests have been done in countries where the medical care is not so good
Can you please confirm that the drugs I was prescribed should not have caused any permanent damage?
yes the damage is temporary in the vast majority of cases.
I mean if its due to medications
Could I just ask, if the tests for calcium etc etc come back OK, what would you suggest next?
If calcium, vitamin D and phosphate come back normal, I would just wait for another CPK test to know how everything is going.
Could you tell me what you would consider to be 'normal' CK levels? There is a lot of conflicting information out there
i.e. what is the range
Your CPK level at 500 was only very slightly elevated so if its dropping and comes down to this level or around this level I would be satisfied.
But since then it has been around 1300 so that is a considerable change, during that time and since then nothing has changed in my personally including diet, lifestyle etc and that is why it is confusing
So for a year now the levels have been elevated
I understand that its frustrating.
Have you had any antibody tests done?
Like ANA, and antibodies against various muscle fibers?
Have you been to a rheumatologist?
I don't think so and I have not seen a rheumatologist, I was hoping to find one here
there must be one around you somewhere.
You should ask your doctor to refer you to one.
I think that the person best equipped to manage you would be a rheumatologist as far as I am concerned.
If only it were that simple! As noted I am in a country where the healthcare is very poor
Can you note the tests that you would recommend
Sorry I had ANA test, it was normal
I think that first of all you should have:CalciumPhosphateVitamin D and then we will proceed from there.
OK, did you see that I noted that I did have an ANA test and it was normal
There are many other antibody tests that also need to be done.
What would you suggest?
I would name a few antibody tests that should be done.
Anti Jo 1 antibody.
Anti Mi 2 antibody.
these are the main antibody tests
ANA has already been done and was okay
So that does not need to be repeated
I would also like to do ESR and CRP tests done if you have not had those done already
What are the last 2 for?
To look for inflammation
If there is inflammation anywhere in the body e.g. in the muscles these are supposed to be raised.
In myositis they are usually raised.
But I already had a biopsy done on my leg, the results of which is what I sent you - something else is needed?
Sometimes inflammation is patchy.
Meaning that the biopsy may not have hit a representative area.
So even in cases where there is inflammation a negative biopsy still does not definitively rule out myositis.
Sometimes MRI of the muscles are helpful in showing the inflamed areas of the muscles.
What do the 2 tests you mention involve?
MRI is like an x ray
specialized x ray
I know, sorry I meant the ESR and the CPR
I presume they are just blood tests also?
I am somewhat confused how to proceed now as you started with suggesting some tests for deficiencies and now we are talking about MRIs etc
Did the discussion end?
all are blood tests
we will go step by step
First do the calcium, phosphate and vitamin D and if those are normal then we will proceed to the next step
You need a good doctor who understands you and who you can follow up with.
Is there a rheumatologist on this site?
Let me know if you have more questions.
For now, no - thanks
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