FAQ/Frequently asked questions
If my child is born on March 17th 2003 to January 25th 2009, is it then possible for me to find out, if it is screened for CTD?
Answer: If you remember being asked by health personnel, if you wanted them to do a PKU screening on your child, then it is most likely, that your child as done the screening. If you do not remember, you can call the National Hospital in the Faroe Islands on phone number 30 45 00 local 5618 or 5600 by stating the name and birthdate of your child and the mother’s, too.
Can you have CTD symptoms if you are a carrier of the CTD gene?
Answer: Even though the carnitine transporters in carriers of the CTD gene do not function completely, and the carnitine level in their blood is low, it has not be proven to have any significance on the well-being of the CTD carrier. There are no examples known of severe illnesses or death in connection with CTD carriers. There has been speculation concerning the fact if carriers of CTD are in a higher risk to be diagnosed with heart diseases or an increase in miscarriages, but this has not been proven. The plans are to undergo scientific research to clarify this.
Do CTD carriers have to be in a carnitine treatment?
Answer: At this point there is no result stating that CTD carriers benefit from carnitine supplements, and due to this, it is not recommended to give carnitine to carriers.
Should CTD carriers who are pregnant take carnitine supplements?
Answer: No, because since it is known that CTD carriers, who are pregnant have a lower carnitine level than they usually have, when they are not pregnant, it is not proven that it has any effect on the mother or the child.
It is not advised to to be examined for CTD during the pregnancy. If a woman is examined for CTD during her pregnancy, she is advised to be examined again 6 months after giving birth.
It can be estimated whether or not pregnant women from families where a child has CTD, should be treated with CTD supplements – not for the mother’s sake, but to give the baby, who may have CTD, the best circumstances.
Is it possible to have a low level of carnitine in your blood from other disease than CTD?
Answer: Yes, and two of these disease are very common in the Faroe Islands. They are called HBC defect and can be treated with biotin, and the other is called 3-MCC deficiency, which prior has been treated with carnitine, but it is not publically estimates as necessary to treat people with symptoms of the disease with carnitine supplements.
Is it possible to do a genetic research on CTD?
Answer: Yes, but with the warning that all forms of mutations are not known. Due to this fact the genetic research is not suited for the screening of CTD, since it does not find everyone with CTD, who have the known mutation called N32S.
What is a normal carnitine level in the blood?
Answer: This is a difficult question, since there are many laboratories and measurements with their own normal area. Below you can see a list on the normally measured numbers in the Faroe Islands:
Possible CTD carriers
Possible CTD patients
Free carnitine measured at the Metabolic Laboratory, Rigshospitalet
Derived carnitine in dry blood, Hannove
Free carnitine in dry blood (not derived)
How can I be tested for CTD?
Answer: If you are born prior to 1985 and your parents are related to a person with CTD, you can go to your doctor and get a free blood test to assess the free carnitine in dry blood. Relatives in this sense means parents, siblings, cousins or second cousins.
All Faroese people can have this same test done for the cost of 100DKK, which is paid in connection with the blood test.
People born in the Faroe Islands after 1985 have tested their carnitine level with the so-called PKU test, which is done on all newborns a few days after birth. These blood tests are available at the Serum Institute and the research for the carnitine level was competed in 2010-1011.
Since the CTD screening with the PKU cards is not 100% reliable, it is necessary to do the blood test again, if you have any symptoms of the CTD illness.
Is it necessary to fast prior to measuring the carnitine level in the blood?
Answer: No, it is not necessary.
Will I receive an answer on the test results?
Answer: No, only when the level is low, the person will be contacted by a doctor from the National Hospital in the Faroe Islands to make plans for an extended research to state if the patient has CTD or not. When the tests are over, the person will be put in a carnitine treatment until the test results are back.
How can I be tested, if I am Faroese but live abroad?
Answer: If you are born prior to 1985 and have parents, who both are Faroese, you can go to you doctor and ask for a blood test to measure the free carnitine in you blood. A guidance concerning this matter is on the website Sundhedsstyrelsen. Faroese people born in the Faroe Islands after 1985 and till March 16th 2003, and have a mother with Faroese p-number, have their carnitine level tested with the PKU testing, which was taken few days after birth. These blood tests are available at the Serum Institute and are examined for carnitine.