Here is the letter I plan to send, if anyone has any input or thoughts on the letter or generally about my thyroid/symptoms please comment
Dear Dr Toft,
I am writing in advance of an appointment I have with you on the 28th October. I am aware my GP has already sent a referral letter but I want to provide you with some more information about the situation from my perspective.
In the autumn of 2013 I commenced the final year of my degree at University. The first term was a massive struggle as I battled with the following symptoms: extreme fatigue, cognitive impairment, brain fog, low blood pressure, low body temperature, freezing hands and feet, weight gain and constipation. These symptoms prompted me to visit my GP. The GP ordered a set of blood tests, which came back normal apart from the presence of Epstein Barr virus in my bloodstream. I have never had a period of time where I was laid out with glandular fever so this was unexpected to me. As a result of this, my GP suggested I had Chronic Fatigue Syndrome and/or Fibromyalgia and instructed that I research both as well as referring me to the CFS service.
I took the advice and researched both conditions. This was when I came to understand that my clinical symptoms were indicative of a problem with my thyroid, and also that the standard blood tests ordered by my GP had only measured levels of my TSH. Before I accepted a CFS diagnosis which I didn’t feel was right for me, I went back to the GP and asked if I could have more bloods taken to include my levels of free T3 and free T4. The GP declined, stating my TSH was completely normal at 1.75. She stated if I still wanted to know, I would have to get the blood tests done privately. As a student, this was not easy to afford but I asked for the referral anyway and had my bloods taken at Spire. By December of 2013, these results had come back and showed that whilst my TSH was in range my free T4 was 10.8 (12-22) and my free T3 was 2.7 (3.1-7). This led a different GP in the practice to prescribing me a 50 mcg starter dose of Thyroxine. Within 6 weeks I felt immeasurably better. At Christmas time I considered dropping out of University because I didn’t feel I could pass exams in January as the term had been so terrible. I persevered and the medication started to kick in. I felt completely different and had so much more energy, brain fog disappeared, blood pressure normal, normal body temperature, daily bowel movements etc.
My blood levels were tested at 6 weeks and the GP increased my thyroxine to 75 mcg and then 100 mcg 6 weeks later, in order to get my T3 and T4 at the top of the normal range. This was mostly because I wanted to feel as good as I possibly could. I left university in July of 2014 and returned home to and registered with my local GP. Over this time, I was frustrated with the GP’s lack of understanding of my medication/TSH levels. I took matters into my own hands and started increasing the medication myself (up to 200mcg). I thought this would make me feel better, but it didn’t. I still had regular blood tests, but my T3 and T4 never went over the normal range.
A relapse in symptoms came in October 2014, and I was lucky to get a referral to endocrinology at Musgrove Hospital. The reason I was referred is because a locum GP at the surgery thought that there could be an issue with my Pituitary Gland. This is because despite having such low free thyroid hormone levels upon diagnosis, my TSH had remained low. I also had an Adrenal Stress Saliva Test done privately in July of 2013, which showed significantly elevated Cortisol levels (attached). At the hospital my pituitary function was checked by a Synacthen stimulation test. I also had an MRI scan of my pituitary gland. Both the stimulation test and MRI scan were normal. This has therefore ruled out any problems with my pituitary gland.
For the last year, I have been taking 125mcg of Thyroxine and have not been increasing the dose off my own accord. However, I still don’t feel right. I am extremely tired a lot of the time, and my energy patterns are consistent with the adrenal fatigue type i.e. very tired and slow in the morning and during the day and a huge surge in energy from about 7pm, and often not being able to fall asleep until at least 1am.
Over the past year, I have seen about 10 different GPs, and despite the consultant endocrinologist monitoring the results of my tests at Musgrove, I never spoke directly with her. I feel as though I need greater oversight of my condition, given that it has been such a rollercoaster over the last two years and especially because I still don’t feel well, and I do not currently feel like I have sufficient energy to work full time. This is what has prompted me to research and find a thyroid specialist who can perhaps give me some more insight and hopefully improve the management of my condition.
I look forward to meeting you on the 28th,