Hi, it’s been a really long time since I posted because for once I was feeling really well with all my various conditions, so much so that I started my own little business walking dogs. About 6 months ago I started to really struggle with my energy levels, breathlessness (as if I was getting less fit) and then I began having falls. Bad, out of nowhere face plants, and feeling generally unsteady on my feet and very dizzy.
Fast forward 5 months and I’d been seen by a neurologist for a brain and inner ear scan, a vestibular physio who said it wasn’t a vestibular issue, and then to a cardiologist as my GP suspected I may have Postural orthostatic tachycardia syndrome, with my blood pressure hovering at 90/50. He’s done an echocardiogram, 7 day heart monitor and is talking about a steroid to raise my blood pressure, but saw no spikes in heart rate to support POTS. Both neurologist and cardiologist said I need a walking aid as my lack of balance so pronounced, and I have lost business because who wants their dog walking by someone who could fall and drop the lead and injure their dog. It’s been gutting. It’s also really hard to walk more than one dog when carrying a walking stick.
3 weeks ago I developed alopecia, I’ve had it once before but at a time when by brother was fighting for his life, and this time there is no traumatic cause. The locum GP decided to run thyroid function tests just to check my levels. I should point out that since I was diagnosed with under active thyroid my levels were being checked every 3 months along with a lithium test (bipolar) and my GP was fantastic. He’s been on long term sick for 12 months but I was still getting the letter every three months for a blood test perhaps stupidly assuming this routine was being continue
Last week I got the royal treatment when the surgery rang and said I needed to be seen that day, and I even got to pick which GP I saw. At this point I thought it was terrible news.
It turns out it was pretty shocking, as my TSH which should be suppressed was actually 11. FT4 was around 1 but for some reason FT3 hadn’t been tested. Turns out I hadn’t been tested in 12 months!! Worse still, my endo had written to my doctor when the list of meds including liothyronine was published to be axed by the NHS. She suggested trying 150mg thyroxine but if I became symptomatic should probably get T3 on a private prescription because of conversion issues.
For some reason that dose was input into the GP system as 50mg thyroxine, so that what i’ve been unwittingly taking for 18 months. You’re right to wonder why I didn’t notice the dose on the box, but because of severe memory issues and the sheer amount of medication prescribed, (some very dangerous), my GP and pharmacy decided to prepare weekly dosette trays for me to save confusion or missing important meds. So each day I look at the blister pack and check the shape, colour and number of the pills in each window and take at the 4 intervals as prescribed.
I’m so sorry for the essay, I hope at least someone has stuck it out! My question is by just adding the extra 50 that I should have been taking, will this be enough to have an impact fairly swiftly, or should I see my endo (at the cost of £250) and see if she would do anything different? My fear is that having taken 18 months to get to rock bottom, will it take as long to get back to where I was? My biggest fear is falling and hurting a dog in my care, or falling and breaking my leg so I can’t work and my business folds. This is literally by dream job and I can see it slipping away 😢
Thanks for listening
Xxx