Brief outline:
Diagnosed borderline underactive 2006. On low dose of Levo 50 to improve my energy levels etc
2008 bloods ok but Serum follicle stimulating hormone tests 2008 and 2009 were 62.6 and 69.5 (range 1.0-10.0) No idea what that means. I've only just got my test results off the NHS app.
In 2011 my bloods were see-sawing with TSH of 11.58 (0.27-4.2) so saw private dr. Put on Levo 75 and novathyral 75 twice a week - an improvement in t3/t4 results and TSH.
2013 TSH 0.1 - below range but stayed at lower end until I had to stop taking the Novathyral mid 2020 as, now retired, I just could no longer afford the private Dr. nor the Novathyral prescriptions.
June 2021 saw consultant re not feeling great just on levo also bloods showed elevated TSH 6 (0.3-5) and a T4 above the range. I had levo increased to 100. Due review apt but after chasing Endo Dept found out this consultant moved hospitals. No one thought to tell me or change my consultant. In Sept my GP bloods showed a TSH of 5.81 - so still above the range and very high for me.
Jan 2022 TSH 3.76 saw a very well regarded female consultant at same hospital. She felt Id never been at my optimal - put me on Armour. Said I had to see her after 3 months to review and maybe tweak. She gave me 100 tablets of one grain.
She did the right thing for me as I felt so much better in every way with Armour.
Tried to get my follow up apt. Fobbed off that the consultant was busy, on holiday, away - but in July they actually said they'd no idea where she was but she had left!!! Again no attempt made to ensure I had my follow up.
Armour has made me feel so much better in every way. I only take one grain daily - no one has discussed this dosage with me as there's been no review at all.
The hospital Endos (all male now) do not want me to take Armour as its 'black listed". My GP won't prescribe it either and is not supportive because of costs. So in July I explained I was out of medication and what were they going to do to sort this mess out.
There followed dozens of phone calls to the Department and to PALS. So embarrassing.
I was ignored constantly and told by an Endo secretary I was requesting an extremely expensive medication and was out of order. Hmmmm.
However, after explaining the situation about twenty times the secretaries were sympathetic. They knew I had just been left without any medication or communication of any sort for quite a while and was understandably anxious. They did pass this on.
Eventually I got a response saying I should just go on Levo and shouldn't have been given Armour!
Spoke to the Head of Endo and said I really felt Armour was working well for me but he said it wasn't legal to prescribe it. I asked if it could be done on a named patient basis. He didn't understand this. I refused Levo and said I wanted Armour as it worked wonders for me so far.
Apparently the hospital pharmacy also refused to give it and the Lead Clinical pharmacist for the area, based in another hospital said no too. However, when I phoned him he was taken aback when I said a consultant had prescribed it back in January. He had been told I'd self medicated with it!
He was very good, sanctioning Armour to be prescribed - but it took two weeks for the Endos to accept this.
The Hospital Endos have not seen me at all. They're disinterested and I think I am probably on the same black list as Armour by now!
However, after along fight have said they've put my request for Armour to the CCG.
Meanwhile they said I had to go on Levo - I said it was not legal to take me off an existing prescribed medication with no reason. With the Pharmacist's support I have managed to remain on Armour - but just for now.
Every two weeks I have to go to the hospital pharmacy for 14 tablets.
I have insisted my bloods were repeated - my TSH is well above the range. In July it was 7.01 and August it was 6.9.
This is not any where near normal for me. I am wondering if my Armour dosage is too low?
I do get slight palpitations now and then at night. But I am so stressed with all of this maybe thats why. Despite asking that a consultant might now give me a review appointment its not happened. It's quite scary just being left like this.
I hope this all make sense. I'm so frazzled and worried about my health.
Any help and advice would be gratefully received as I feel I am just bobbing along without knowing if I am ok or about to keel over.
Armour is my way forward I feel, but how?
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