Panhypopituitarismo - Multiple Hormone Deficiency - Insipid Diabetes

[mamamouse89]

My son has MPHD and is not taking it well. He is 30. Lives with us in a happy environment. Is there anyone here with this illness. To get more ideas on diet, videos etc that may help him or help me to help him. He has has 2 ops one the brain tumor that actually caused the hormone deficiency. He is on hydrocortisone. Mi ruin. Thyroxin and insulin. I am looking for guidance from parents or adults with this. . He started at 10 years old. I am in Spain.

[BadHare]

Diabetes insipidus is a pituitary condition. You might find this organisation useful for wider hormone related information: pituitary.org.uk/informatio... as well as Thyroid UK.

[shaws Administrator]

Welcome to our forum and am very sorry your son has such a complicated illness, especially from such a young age.

I note your son is on levothyroxine and I'm not medically qualified. I wonder if your son is able to convert levothyroxine into liothyronine (i.e. T4 to T3).

What he may need (as many times we - on this forum- find out) that we cannot improve on levothyroxine alone. Levo is an inactive thyroid hormone and its job is to convert to Liothyronine (T3) and it is T3 which is required in our millions of T3 receptor cells, the heart and brain containing the most.

I think it would be an idea to get a Full Thyroid Function Test and blood draw always has to be at the very earliest, fasting (he can drink water) and allow a gap of 24 hours between the last dose of levo and the test and take it afterwards. A FTF test is:-

TSH, T4, T3, Free T4, Free T3 and thyroid antibodies.

Post his results onto a new post for comments.

Quite a number of researchers have proven that a combination of T4/T3 restores many to good health. I am hypothyroid but was far more unwell and remained undiagnosed until I diagnosed myself when TSH was 100. I couldn't improve on levo (T4) and was far more unwell and only take liothyronine (T3) alone now which has restored my health.

There are also NDTs which are the original thyroid hormone replacements from 1892 up to the present day. Unfortunately for many, who would have been prescribed it in the UK, the authorities withdrew this through making False Statements about it. NDT was prescribed due to clinical symptoms alone and patient given a trial - no blood tests. It contains all of the hormones a healthy thyroid gland would have done. T4, T3, T2, T1 and calcitonin.

A Full Thyroid Blood test has always to be at the earliest possible, fasting (you can drink water) and allow a gap of 24 hours between last dose of thyroid hormones and the test and take it afterwards. This helps keep the TSH at its highest as doctors seem to only take notice of the TSH (which is from the pituitary gland) and ignore clinical symptoms and prevents a reduction in dose.

Your son needs a Full Thyroid Function Test, which is:

TSH, T4, T3, Free T4, Free T3 and thyroid antibodies.

Also B12, Vit D, iron, ferritin and folate.

Following the advice above, post the results with the ranges on a new post for comments. FT4 and FT3 are very important.

thyroiduk.org.uk/tuk/testin...

thyroiduk.org.uk/tuk/testin...

Most doctors seem to rely upon a TSH result alone which isn't always accurate.

thyroiduk.org.uk/tuk/thyroi...

[SlowDragon Administrator]

Doctors should be testing his FT3 and FT4 to check levels of thyroid hormones. His TSH will presumably be especially unreliable

Important to test vitamin D, folate, ferritin and B12 regularly too