Hi, it's been a loooooooong time since I last posted mostly because I've felt so beaten down by my condition and the various demands of everyday living. When I last posted I'd finally managed to get started on T3, I had to buy it privately with a private prescription following an NHS consultation with an endocrinologist. I'd had a private genetic test which showed I had the D102 gene fault. It was the first time I'd ever seen an endo since being diagnosed in 2006 after having been ill since 2000. The appointment was brief but he put me on T3, I can't remember the dose now but I think it was someting like 30mcg per day which I split into three.
For three months I felt nothing short of miraculous changes, the sun came on in my brain, I wasn't crying everyday, I felt hopeful for my future for the first time in almost 2 decades, my brain fog gone I was becoming more organised and active, my thoughts weren't a jumble like a continually swirling snow globe. No palpitations or other side effects, I felt like a new woman.
Then I saw the endo again, another very brief appointment in which he reduced the dose by half, no explanation, no tests other than the usual bloods for thyroid, I was barely allowed to speak. I left the office in tears and in confusion, feeling robbed. I then took the halved dose for three months which pretty much had me back to how I was before taking it. And then Covid commenced, my next appointment was cancelled, my prescription ran out and the endo would not renew it. I should have chased it up but I felt defeated, I caught covid in the March of 2020 and was in bed for three weeks, I was grieving the loss of a close family member and suffered from long covid. I was lower than I had ever been, and there I have remained, with long covid continuing. I recently caught covid again (triple jabbed) it attacked my wobbly digestive system and now on top of everything else I have chronic diarrhea and daily nausea and stomach cramps that reduce me to a ball of pain curled around a hot water bottle on the sofa. Fun times indeed. I find it hard to find the energy to fight battles with the medics, and over the past two years everything is done via the phone not seeing anyone in person. I also have a chronic cough due to a lung condition and so most of my focus in terms of medical input has been on that and I'm currently having various scans and tests which started in September last year and I've still got three to go (3 done) the NHS is moving slower than a dead snail.
I need to try and find a more sympathetic and thorough endocrinologist, I'm in Surrey UK. Any recommendations would be welcomed. Thank you.
Written by
SurdoQueen
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Email Thyroid U.K. for list of recommended thyroid specialist endocrinologist and doctors who will prescribe T3
Private is likely the most realistic option
tukadmin@thyroiduk.org
Before considering booking any consultation we always recommend getting FULL Thyroid and vitamin testing done
How much levothyroxine are you currently taking
Do you always get same brand levothyroxine at each prescription
What vitamin supplements are you currently taking
If taking any supplements that contain biotin, remember to stop taking a week before all blood tests as biotin can falsely affect test results
Recommended on here that all thyroid blood tests should ideally be done early morning, ideally before 9am and last dose levothyroxine 24 hours before test
If currently or eventually back on T3
On T3 or NDT - day before test split daily dose into 3 smaller doses, spread through the day at approx 8 hour intervals, taking last 1/3rd of daily dose 8-12 hours before test
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)
Private tests are available as NHS currently rarely tests Ft3 or all relevant vitamins
List of private testing options and money off codes
You could email tukadmin@thyroiduk.org for a list of both private & NHS doctors/endos that members have received positive experiences with, or click here for a list of private endos that ThyroidUK hold.
It is rubbish having meds reduced or withdrawn that have made us well and many members now self-medicate T3/NDT after experiencing this. You will need to get labs done to see where you are and when doctors are uncooperative, members use private labs.
If you wanted to self-medicate, post labs results complete with ranges (numbers in brackets) and advise of present meds, for members to comment. Iron, VitB12, folate, & Vit D all need to be optimal for meds to work effectively, and you could then put a new post up asking for T3 sources for members to DM you.
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