A Diagnosis – At Last!

After Angel spent two day patient visits on ward-D2 (in April) we finally got some form of clarity on her situation…

Results showed that Angel’s cortisol levels were much lower than tested in February, because of this it was advised that she would benefit from cortisol replacement treatment (hydrocortizone).

From the four main hormone groups: GH – Growth hormone; TSH – Thyroid; ACTH – Adrenocoricotrophic);ADH – Antidiuretic, ADH is the only one Angel is NOT missing/low on. So for this reason, she is now classed as hypothalamic syndrome – multiple hormone deficient.

This wasn’t caused by the proton beam therapy, but is more likely to be due to trauma to the brain or head surgery. The only head surgery Angel had was in order to insert an Ommaya Reservoir, which is permanently fixed  (in case a further cyst develops on the tumour).

Doctor Blair sent a letter to Angel’s GP, instructing her to start her treatment of hydrocortizone tablets; but as usual things were not straight forward for us!

As per advised at Alder Hey and in the letter – Angel started taking the tablet course of hydrocortizone.

After 10 days of taking the tablets, she went for a review appointment at Alder Hey – on the 6th May.

She left home with her Mum at 7:15am to get to her 9am appointment… only to be told there was no appointment booked. Bev tried to get in touch with the specialist endo nurse, and hoped she would come up and see them (since they’d traveled all the way from Blackpool)

The endo nurse turned up at 10am to tell us that we weren’t meant to be there, even though they were told to keep this as a review appointment (last time she went in for bloods).

Endo nurse then advised that we could wait until her clinic had finished, or go home. By this time Angel was stressing and anxious about not having an appointment.

At this point, Bev wanted to go home, but Angel was upset and said she would rather stay and just get it sorted.

As Angel decided to stay, the nurse asked to see what medication Angel was on, when Bev got the tablets out to show the nurse, it turns out she had been prescribed the wrong hormone!  (Hydrocortizone for mouth ulcers… a big difference from being adrenal deficient) so no wonder they had seen no improvement.

(Apparently this is not a rare occurrence, and these sort of mistakes do happen… due to poor communication and correspondence at the GP… or hospital…?? We’ve no idea)

After speaking to the consultant, it was advised that the endo nurse gets cover for her clinic, and would now stay with Angel and teach her how to administer growth hormone, hydrocortizone and emergency medication.

She now has the emergency meds (which she keeps with her, in case of adrenal crisis) and hydrocortizone tablets which she will take daily (for the rest of her life) but is still waiting for the growth hormone injections to arrive.


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