Hi Everyone, first time poster here, but unfortunately long time sufferer.
Firstly apologies for my rather depressing user name (I may change it) and for the sob story you are kindly about to read.
Until 2 years ago I was working as a professional in a very tough industry. Working many hours, under lots of pressure, but still had the energy, most of the time, to play sport and go to the gym in my spare time as well as see friends, go to social events and more. However all of this was becoming harder to do, about 3 years ago I was driving to a car park to sleep on my lunch breaks, except I was too stressed to sleep. Also at this time I fainted/fitted 3 times, which hadn't happened to me since I was going through a marriage break up late 2007 and into 2008.
Back to 2 years ago.. I was away with friends for a weekend, and was so exhausted the whole time I couldn't join in the activities, excused myself to the hotel to sleep, but as usual, I couldn't sleep. By the time it came to the journey home I had my first ever panic attack at the airport, quite a mild one to what I experienced in the months after, but it scared the life out of me and then I had to go on a plane home. 2 of the faints/fits I mentioned earlier have been on planes. Around this time on my commute, approx 1 hour motorway drive, especially on the way home I kept feeling that I was going to pass out because I was so shattered, which made me panic.
Basically by this point I was in a right state. Exhausted, didn't know why, and starting to notice anxiety and panic issues.
I promised myself on the plane that I would finally go to the GP to get myself checked out, which I did a few days after getting home. I was found to be hypothyroid with hashimoto's. They put me on levothyroxine. I quickly got worse and went back to GP only a few weeks after the first visit because I felt like I was going to collapse everywhere I was going - Tesco, work, driving, seeing friends. A further blood test found coeliac disease, which was then confirmed by biopsy.
I was actually relieved! Take the thyroid hormone every day and eat gluten free for life and I'll be fine! I'd found the answer.
Here I am 2 years later, I have been let go from work. Which I was on a phased return worked 3 part days a week anyway. I am more exhausted than ever, yet I am doing less than I've ever done! I haven't played sport in nearly 2 years, I never see friends anymore, I can't do anything at all past about 4pm because I'm just completely gone. My eyes sting first thing in the morning from where I'm so tired.
There are several other symptoms too but I don't care about them, I just want this overwhelming exhaustion to lift and get my life back. The way I see it is that the weight gain, hair loss, freezing hands and feet will all get better naturally when I find out what's wrong with me.
Anxiety is a bit better than it was, and it was crippling at one point 18 months or so ago. This is better due to a combination of things: CBT, Pregabalin, and the fact I don't go anywhere to feel anxious.
Ok lot's of back story there, thank you for reading.
My endocrinologist has been brilliant, my GP's have been awful. They keep trying to label me with CFS/ME but I won't accept it, and constantly try to prescribe me anti-depressants.
I spoke to an amazing woman called Lorraine a few weeks ago, who is advocating change to thyroid treatment through the Scottish Parliament. She was very passionate and helpful and has helped me decide to have another push to try to treat myself, not that I'm not trying of course! After speaking to Lorraine I realised that talking to other people for advice, hearing their stories and not facing this alone may help me on a mental level.
I was on 75mcg levothyroxine and 100mcg on alternate days, and about 3 months ago managed to persuade my endocrinologist to prescribe me T3. He dropped my levo to 25/50 on alternate days and added 20mcg T3. Within 2 weeks I was in a terrible state, literally almost dropping to the floor with tiredness. He has increased my levo to 100 along with the T3. However I'm still so shattered. Latest blood results below:
20/05 (before T3 added) T4 =18.9 (range 10.3 - 24.5) TSH = 0.99 (range 0.27 - 4.20) T3 =3.9 (range 3.5 - 6.5)
28/07 (with T3 and dropping levo down) T4 = 6.5TSH = 1.09T3 = 4.6
I am due a blood test in 3 weeks following increasing levo back up.
B12 tests have been normal, as have cortisol and iron. I take Adcal D3 for low vitamin D and low calcium in my forearms which was picked up in bone density scan following coeliac diagnosis.
Any help or advice would be gratefully appreciated.
Thank you so much for anyone who read all the way to the end of all that!