I have looked after myself, purchasing my own NDT for the past 14 years after seeing Dr. Peatfield in 2007. Since the withdrawal (temporary I hope), of Nature-Throid/WP Thyroid I have been casting around for alternatives withexcipients I can tolerate. In the process I let this slip to a GP and, last week, out of the blue, I received a letter saying I had an appointment with an endocrinologist at the local hospital, the first ever - nothing ventured nothing gained I thought...
I arrived out of breath, having dashed up stairs and through the large car-park in a rainstorm. After the routine squirt of alcohol upon entry, I was quickly ushered into a room where, out of breath, heart pounding, the routine blood pressure was taken. This, despite me suggesting maybe we should wait for me to get my breath back? Then, after being weighed with wet boots on, straight down the hall to the endo - a young Chinese woman in a mask.
In a nutshell, she offered me a trial of synthetic T4/T3 which would be better than levothyroxine alone as my body dislikes synthetic stuff, BUT she insisted my painstakingly-arrived-at dose had to be halved, not, as you might think, following a blood-test, asking me questions and carefully listening to answers, but simply because it is THE RULE, and she showed me the 'Grampian guidance for combination levothyroxine and liothyronine therapy to be prescribed on a trial basis for selective patients with primary hypothyroidism'. What she offered me was what she is PERMITTED to prescribe, she said. One size fits all it would seem. (Maybe creative thinkers would find a way round though).
I also told her my hypotheses of 2 war amputees to whom the doctor offers only one size of prosthetic leg despite one being 6'4" and the other 5'4". How well would they be able to walk?
Hearing my protestations, she explained that if my levels showed low in the range, in 3 months time, the dose could be raised by a tiny amount. I exclaimed there was no need to wait 3 months, I could tell her there and then, levels of T3/T4 would be low in the range and I would hardly be functioning.
I explained to her that I am intolerant to gluten/maize starch and maize derivatives like dextrose. She attempted to look up ingredients of generic types of T3/T4 used by NHS but was unsuccessful as she didn't know the names of the products. She suggested I take the prescription to a pharmacy, open the packet and read the ingredients. I'm hoping the pharmacist can do this so I could exchange it straight away if wrong.
"But you are a lot healthier than other 70yr olds I see", I missed the chance to suggest that it might be because I've never been on NHS prescriptions monitored by NHS endocrinologists but have self-treated with NDT for 14 years and found my own balance my own way - after all I've lived in this body a long time.
Regardless of how upsetting it would be to my already beleaguered adrenal glands, cutting 4 1/2 grains of NDT in one fell swoop with synthetic T4/T3 goes against all the titrating advice I have ever been given.
And, finally, at the end of 'the consultation' which seemed more like a gentle lecture, not too condescending, I was invited to have a blood-test. But I said, I took my NDT 90 mins prior to meeting. "Oh, that doesn't matter we can adjust according to your weight".
I must have looked utterly blank because, I'm sure, if I could have seen her mouth, she would and been smiling benevolently...
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Diana49
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50 levo 20 lio is the Grampian one-size fits all that a few of us in Moray were started on. Needless to say it doesn't fit all and I have been adjusting my dose since then and having interesting discussions with the endo team at ARI. Got to be prepared to be pushy!!
I agree with everything except your description of the lady being Chinese. I don’t think that’s relevant to the story in any way and the fact of the matter is NHS guidelines and medical training in the UK are the real culprits.
I would suggest you edit out that description of the doctor.
I was invited to have a blood-test. But I said, I took my NDT 90 mins prior to meeting. "Oh, that doesn't matter we can adjust according to your weight".
That must win some sort of prize for being one of the most non-sensical things an endo has said. I swear they are issued with a little booklet on graduating, entitled 'What to Say When You Have No Idea What You're Talking About'!
It sounds like a nightmare and doesn’t inspire hope. I particularly like the description of the blood pressure test. The same thing happened to me. I’d left plenty of time to get to the endo, only it turned out there were so many covid checks and the endo’s office was on the 17th floor, so I found myself running around a building and panting on arrival, promptly had blood pressure checked. Considering it usually languishes around the 60s, i marvelled that for that brief period it came back normal not low! Lol!
Ah well it'll save you a bit on costs getting 20 a day from them. I guess you'll have to top up privately. It is really sad and bizarre however that there's such variation in prescribing across the U.K. and yet each doc is so certain of what they say. Kingston nhs seems to allow for more variation.
The NHS should stop wasting money 'trying. The biggest problem is that they want to cover everything and in my opinion, make pig ears if most health problems. Shoot me down!
Would'nt it be wonderful if they created a pill that had both T4 and T3 in it - ooohh and they could stick some T1 and T2 in it even if they think it does not do anything, and then prescribe that!
Oh, hang on, such a pill exists.... but the NHS does not make money from it and that cannot happen!
According to one appointment with the Endo, where the nurse weighed me and took my blood pressure, I was under 6 stone, and blood pressure was 40/60, so pretty dead. At the time I weighted 9 stone (sigh!). No one took any notice of the measurements...
Well aware you were not referring to this synthetic product, but possibly of some interest:
1960/06/11 Diotroxin
Liothyronine and L-Thyroxine. — Glaxo Laboratories, Ltd., Greenford, Middlesex, announce the introduction of Diotroxin tablets on June 13. Each tablet contains 10 microgm. of liothyronine sodium (L-triiodothyronine) and 90 microgm. of L-thyroxine sodium. Diotroxin tablets are in Schedule 4b of the Poisons Rules and may be supplied only against prescriptions. They are issued as tax-free dispensing packs of 100 and 1,000.
I thought you were describing my appointment with an endo at first! I had an almost identical experience. I went home feeling dreadful. Thankfully the very kind and, most importantly, knowledgeable, people here wrapped a warm blanket around me to help restore my confidence and reminded me that they and I know far more than the Drs on this subject. My endo was smiling beatifically too, it was like being mugged by a cuddly teddy bear. In the words of Kris Kristofferson Don't let the B******s (get you down)
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