My 19 year old daughter has congenital hypothyroidism and has been taking levothyroxine since she was 4 months old. She's had regular blood tests through her life and her doseage has remained pretty stable ( 75mcg/50mcg alternate days). She is fit and well with no symptoms and her last set of bloods were fine ( last year). Her next check up is due in December. She's been called for a short synacthen test then which no one has ever mentioned and I thought tested cortisol levels. Is this a standard test for someone with congenital hypothyroidism? I'm confused as to why now?
Hi Kirsty, if you take a look at the thyroid medication information, you’ll see that it states that persons with adrenal disorders should not take thyroid medication.
From the thyroid medication instructions, everyone shoukd be tested for adrenal disorders prior to thyroid treatment. However, this is not practice and most thyroid patients are never tested for adrenal disorders.
From what I found online, the synacthem test is generally used for diagnosis of addison’s disease, though can offer information about pituitary and other brain/hormone functions.
Side effects are generally minimal aside from tiredness following the test. However, the test is not advisable or peopke with asthma.
A lot has changed in the two decades since your daughter was diagnosed. Blood tests have improved, and there are so many more things they can test for.
If it were me, I’d review your daughter’s entire medical history and information using current standards and information based on newer studies. You may find a very different perspective with newer information.
I suspect the synacthen test is an effort to find more information about your daughter’s condition. It may be “now”, simply because the test is readily available, affordable, and allowed by insurance standards..
Thank you. We will see - I’m going to suggest my daughter finds out why this is needed. We know exactly why she has hypothyroidism ( her thyroid gland did not move down during development - the most common cause of congenital thyroidism). She was monitored very closely between birth and 16 at Sheffield Chikdren’s Hospital. She is now under the care of another hospital. I just think it’s very odd she has been asked to go for this when her bloods are always fine and she has no other symptoms of anything else including Addison’s.
Kirsty, good points. Always best to avoid invasive tests if they're unnecessary.