High prolactin high testosterone U.K.
Hi, I’m hoping someone who has experienced something similar can offer some advice.
We found out in mid-July that my son’s prolactin level was 1,444 mIU/L. His testosterone was also above the normal range. He has been experiencing hair loss but I didn’t notice and still don’t but he says hair are coming off in chunk, and had a pressure like headache that lasted for around three days, although thankfully he hasn’t had another headache like that since.
He has been referred to endocrinology, but his appointment is not until October. I’m worried because it feels like a long time to wait without knowing what is causing these results.
The endocrinologist requested repeat blood tests, including prolactin, testosterone and some other hormone tests. However, our GP removed several of them because they had already been done around a month earlier. I don’t understand why they were removed when the endocrinologist specifically requested them. I thought repeating the tests would confirm whether the levels are still high and whether anything has changed.
He has also been asked to have a testicular ultrasound, which has worried me even more. Has anyone else with high testosterone been sent for a testicular ultrasound? What are doctors usually checking for?
He may also need a pituitary MRI with gadolinium contrast. I’m very anxious about this because a family friend became seriously unwell after having contrast for an MRI. I understand that everyone is different, but it has frightened me.
Does anyone know whether contrast is always necessary to detect a small pituitary tumour, or whether a dedicated non contrast pituitary MRI could be done first? Are certain types of gadolinium considered safer, and should kidney function be checked before it is given?
I would also like to know whether prolactin should be repeated early in the morning after resting, and whether macroprolactin, LH, FSH, SHBG, thyroid function and the other pituitary hormones should be checked.
Is it normal to wait until October with a prolactin result of 1,444 mIU/L? Would it be reasonable for me to contact gp and ask them to reinstate the requested blood tests or consider seeing him sooner?
I have also read about supplements such as vitamin B6 and vitamin E possibly helping with prolactin. I’m not planning to give him anything without checking first because I don’t want to affect his results or interfere with finding the cause, but I would be interested to hear whether anyone was advised to take anything while waiting.
I’m not asking for a diagnosis or trying to replace medical advice. I’m just a worried mum trying to understand what should happen next, and I would really appreciate hearing from anyone who has been through something similar.