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.
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Rita-D
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When I saw him in April, he was still spouting all the usual rubbish (they must have all been given a script to follow)! He said that T3 has no proven efficacy other than to improve QOL and not the numbers. I accused him of prescribing by numbers (much like painting by numbers) and told him that I would take improved QOL over numbers any day, as that's what every patient wants! I think the only reason that he changed his attitude is because I proved that I am heterozygous for DIO2 gene and as I pay for my T3, I am not costing the NHS any money other than for T4 and standard blood tests.
I still think that he would spout the usual rubbish to any new patients unless they're knowledgeable as that's the brief they've been given by NICE/NHS England. I will let Louise know, but not sure how good he would be with someone who can't argue their case. He's the head of the department and when I saw him in April he had a student with him as he did yesterday. I think the "paint by numbers" accusation stung him! He was very prepared for me when I saw him yesterday and said he was just wanted to help me to feel well! First doctor ever to say that to me!
Endo is not doing the prescription. I have an NHS prescription with GP and it's on EMIS (Patient Access) for repeat prescriptions, so I can go down that route if I want to. I just do private as I wanted to prove to him that it's not a whim and that I will do whatever I need to get T3. Also endo has recorded on his file and by letter to GP that if NHS won't prescribe, then I will source myself from the internet. (This was before I discovered defective gene). They all know I mean business!
I did discuss T3 post-Brexit, but he said it's just scaremongering. I'm not convinced that it is though.
Brilliant to read. It’s great that some people are still getting proper treatment and being treated with respect. It’s depressing that it is probably the minority, but it shows it can happen. xxx
I am happy for you and it is such a relief when we talk to a Specialist who really knows his stuff and considers the patient instead of the result of a blood test.
If you're in the UK, please send an email to Dionne at Thyroiduk.org.uk of his name for her list:-
It was a real surprise yesterday as I have had difficulties with him in the past (I really believe that it's simply because of the brief that they have been given by NICE/NHS England. He was prepared for me yesterday as when I saw him in April, I accused him of "prescribing by numbers" when he said T3 has no proven efficacy and that it doesn't improve numbers only QOL! I laughed at him and told him that improved QOL is what all patients want! They're not bothered about numbers. He had a student with him as he did yesterday and I think he was stung by my accusation! How good he would be with someone who is not knowledgeable, I'm really not sure. I went in to the appointment expecting a fight and was so pleasantly surprised by his attitude. Maybe the ITT campaign is starting to have an effect?
I do hope so. I still have to connect with my GP who told me they would no longer prescribe T3 if I needed. I have been fortunate to source my own but it has been very difficult this year. It is disgraceful that the NHS can be blackmailed - first to the withdrawal of NDT by False Statements made about it and then sudden withdrawal of T3. I always thought of doctors as being anxious to relieve patients symptoms and restore them to good health but on reading most posts the professionals seem to know nothing at all about prescribing thyroid hormones that suit the patient and relieves the symptoms. However, the are happy to prescribe 'other medications' for symptoms, i.e. antidepressants, pain relief or anything else instead of proper thyroid hormone replacements.
WOW !!!! YAAY !!!! You Have A Winner . A Dr who Listens what you have to say and knows and understands thyroid dosing and allows you to be involved in your care . A Dr that is NOT Threatened . Your Dr "GETS IT" . Lets hope this pattern follows globally .
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money matters more then we do
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