Had a follow up appointment today following a brain scan at the end of September. I have a small benign meningioma discovered last May during an MRI scan for Thyroid Eye Disease. Consultant said we would "watch and wait" and that I would have an annual scan, that it was unlikely to grow very quickly and after my scan I would just get a letter confirming all was OK. Imagine my shock when I got an appointment for 2 weeks later. Of course I tried not to panic, but whilst I've been keeping busy, i haven't really slept very well. So I was delighted when he said that there was no change and that even if it did grow, there was room for it to grow without interfering with anything! Huge sigh of relief. That was this morning.
This afternoon, I had an appointment with my endocrinologist. I was expecting the usual fight with him over my T3 medication and costs of it etc. Imagine my surprise when he actually asked how I'd been. Listened to what I said. Gave me advice about dosing T3 and admitted that most consultants don't like prescribing T3 because it's difficult to monitor. He drew a picture for me of how T3 works (I didn't let him know that I know how it works). He knows cost isn't an issue for me as I get a private script and get my T3 from Germany as I don't see why NHS should pay the ridiculous cost of it. He suggested that I titrate T3 to how I feel (OMG). I am on 100mcgs of T4 and 20mcgs of T3, holding on this dose as I was originally on 150 mcgs of T4 and endo asked me to reduce to 10mcg when I introduced 20mcg T3.
I am heterozygous for DIO2 gene and he had remembered this and remembered that he had said I could go up to 30mcg T3 because of this. Told him that I did increase after having a GP blood test as there was scope to improve my T3 from 4.7 in a range of 3.1 - 6.8 as I was still having symptoms but that I developed mucin and put on 11lbs in a month so I stopped all meds for 10 days, during which my TSH rose to 9.7 (it has been 0.05 or less for several years). In the past I have had TRH test and MRI scans on my pituitary because they couldn't understand why my TSH was so low. This endo said to me today, "when you're on T4, your pituitary doesn't need to produce TSH so it becomes irrelevant"! This is the first doctor who has said this. All others have panicked, said I was over-medicated and that I should reduce T4 or I would have heart problems and osteoporosis!!!! I could have kissed him. So I do not have hypopituitarism!!!
They also did a dexa scan in May and he said all normal. Hips are low side of normal but no evidence of osteopenia!!! I had been told I had osteopenia - he was surprised when I said this, the consultant who told me said it was because I was overmedicated. I told him it was because I'd not had dairy for about 15 years because I'd had a gall bladder problem in my 30s. So today I told my endo that this is evidence of T3 working!!!! I have terrible problems getting the forms off the hospital and have in the past complained to PALS. He even printed off the blood forms for my next appointment in 6 months.
I came out of that appointment walking on air!!!! Whilst I'm not yet optimal, I feel that there's a chance that I can get there. He isn't putting hurdles in my way which is fantastic!!! What a turnaround from the beginning of the year.
I then had Rock Choir tonight, so all in all a perfect day! There is light at the end of the tunnel and hope for us all.
money matters more then we do
First Endo appointment was not what I expected!!!
Visit to GP re digestive issues.
My endo has stopped listening... I feel desperate .
Endo redeemed, a good consultation and outcome...
