since my son had his thyroid removed 4 years ago they cannot get his tsh level right has anyone else had this problem.

[nettie1]

he has been on very high doses of levo also on armor thyroid still high level way over 170 tsh. the doctor is now in talks with a pharmacist and looking at making some sort of injection.

[helvella Administrator Thyroid UK]

Has he had his Free T4 tested?

There could be an issue with the TSH not reflecting actual thyroid hormone levels.

Could you please try to let us know some more - like his age, weight, dosage, any other medicines, etc.?

Rod

[nettie1 in reply to helvella]

hi rod thanks for the reply.

his t4 and t2 are fine, he as been on 90mg of armor thyroid plus 100 mg levothyroxine he is now 20 had his thyroid removed when he was 16 he weighs about 12 stone and is not really showing any symptoms of having a thyroid problem expect high tsh levels.

he was born with high levels of tsh and had no problems till he was in his teens when he developed a goiter which was removed due to high risk of cancer, however while in surgery they discovered that his thyroid was not where it should have been it was on the side of his neck.

however, all went well with the surgery his para thyroids remained in tact and he healed well, but since the removal he has had very high tsh levels.

[helvella Administrator Thyroid UK in reply to nettie1]

Agreeing with Granitecitygirl below, pituitary.

Has he had the other pituitary hormones checked? (Prolactin, FSH, etc.)

There is something called a TSH-oma - an adenoma which secretes TSH. Or he could suffer from pituitary resistance to thyroid hormone - which in someone NOT on thyroid hormone, results in hypothyroidism.

Outside possibility of hypothalamus not producing enough TRH.

He needs someone who really knows his stuff.

Rod

[nettie1 in reply to helvella]

hi rod he has had none of these things tested, i will be speaking with the gp in the morning and ask about getting him tested.

thanks so much for all the information.

annette

[helvella Administrator Thyroid UK in reply to nettie1]

This is a link to a huge amount of pituitary information.

endotext.org/neuroendo/inde...

I am NOT suggesting you spend the next few weeks reading it all, but thought it might help to have somewhere to look things up.

Although we are not talking about an injury here, this site might also be useful:

headinjuryhypo.org.uk/

Rod

[nettie1 in reply to helvella]

superb thanks rod

[Granitecitygirl]

Has he had his pituitary checked? My dad had his removed when he was 18 and its his side of the family that are all auto-immune.

[nettie1 in reply to Granitecitygirl]

thanks for your reply i have been thinking pituitary for a while now have asked the doctor to do some tests, also if you don't mind me asking what was wrong with your dads pituitary.

[Granitecitygirl in reply to nettie1]

It was in the 70's and they said he had a cyst on it (I'm not sure how good diagnosis was back then). He put on masses of weight but I don't think it was Cushings as the weight was evenly distributed over his body not just on his trunk. Depending where it is on the pituitary depends what the symptoms are. The pituitary is the size of a peanut so I can only guess how small the cyst was!

[nettie1]

thanks will be speaking to the gp tomorrow great to get some information.

thanks

annette