Jaw & tongue numbness update.

[t3rcam]

After being admitted to a London hospital my daughter was diagnosed with post partum lymphocytic hypophysitis. She wrote to 8 endo’s and 4 got back to her. They were all provided with the same information and blood test results as the endo in Aberdeen. Considering she was admitted within 4 weeks of writing to him the London endo was at least curious and knowledgeable enough to carry out investigations. It is shocking that my daughter has had to do all her own research and progress her own medical care. She has been prescribed thyroxine as a result of secondary hypothyroidism. It has been 5 weeks since she started the thyroxine but she usn’t sure that it is working. In fact she is worried that it is making her worse. She is back to London in April. Potentially she may become another victim of the poor thyroid and adrenal testing currently being used. Although her T4 has increased from 12 to 16 (12-25) and her TSH is now 0.99 down from 5.55 she still feels unwell. She will have a full thyroid check done through medi-checks before she returns to London. Although this doctor has helped her far more than any other he did say that he does not consider T3, Rt3 when making a diagnosis. It will be interesting to see what he does in April. After diagnosis and being prescribed thyroxine her GP wanted to stop it.............. shocking to say the least.

[helvella Administrator]

I know nothing about Lymphocytic hypophysitis - but did find a bit of information. Has she had any other hormone/pituitary tests? Like FSH, prolactin, growth hormone and ACTH. She might have got the thyroid side addressed - what about anything else?

For anyone else who needs a brief overview:

rarediseases.info.nih.gov/d...

[t3rcam in reply to helvella]

Thanks for your reply helvelka. Yes all of these were tested in London and she had an ITT test. She is a nurse and has become very knowledgeable. She is querying high saturation and bilirubin at the moment.

[helvella Administrator in reply to t3rcam]

Insulin Tolerance Test might be better than not having one - but as many pituitary hormones as possible should be tested. If she is low in, for example, ACTH, then she could well be suffering adrenal insufficiency. And so on.

[gabkad in reply to t3rcam]

t3rcam, was your daughter treated with steroid for the inflammation? Is she still on this? Just wondering because withdrawal can be exhausting too. ACTH would be suppressed if she is on steroid and can be suppressed for while if steroid is withdrawn.

[Marz in reply to helvella]

Great link - helped me to understand a condition I had not heard of - thank you

[Mary-intussuception in reply to Marz]

Yes, I agree, and it's good to know that an information centre such as GARD exisists.

So thank you , all , for post & replies.

[Mary-intussuception]

It's been such a long journey (over 9 months?) and your daughter has researched and worked so hard to get this far. So glad to hear that she is getting somewhere at last. I have never heard of Lymphocytic hypophysitis. Hope she now gets fully diagnosed and appropriate treatment.