Some of you will remember my whining posts, trying to evaluate if my symptoms are attributable to hypothyroidism or not. I've had many thyroid blood tests over the last 24 months, including several "full panels" conducted privately. All of the data I have (the most pertinent being: symptoms burdon, evelated but in-range TSH, low in range FT4 and elevated TG Antibodies) has told a story for quite some time now. My symptoms really became most noticible in autumn/winter 2018 when I started to notice for the first time in my life extreme cold intolerance, terrible persistent constipation, and after increasing frequency of pre-syncope and eventual full syncope episodes, an A&E visit led to Cardiology giving me a full workup re. extreme bradycardia and low blood pressure. What led up to all of this was being treated by Psychiatry for 7 months with lithium carbonate, as a mood stabiliser for bipolar disorder. All of my physical symptoms just worsened while on lithium, albeit my mental health was improved. After Cardiology removed my lithium, because they suspected it was contributing to my low heart rate (turns out it wasn't directly, at least not as in "lithium induced bradycardia"), my symptoms did not improve. I've been suffering with the effects of this low heart rate and blood pressure for over 12 months now. I've had "every test under the sun" as most doctors comment, yet they still find no cause. I've been told countless times by the NHS that my "thyroid function is fine", even though I have private tests which confirm autoimmune thyroid disease. I've given up asking NHS GP's at this point, because they just treat me as a hypochondriac and push me aside. They have actively refused to trial me on levothyroxine because my TSH results are "in range". They do not consider my symptom burdon not my quality of life it appears.
Anyway, the purpose of this post was to say that I have, after a huge amount of deliberation and research, decided to self-trial levothyroxine to see if anything improves. I started on an initial dose of 50 mcg 10 days ago and can honestly say that I have already (after about 7 days) noticed a significant improvement in my cold intolerance symptoms. I am no longer having to wear 7 layers on my top half just to be able to tolerate going outside in a British December! I have been wearing gloves, often even indoors, since late September, because my hands (and feet) have been getting so cold. It's been unbearable most of the time, and very painful. It's clearly not normal to feel like this, but doctors just tell me to put up and shut up because they can't find a cause. But now I am already feeling the benefit from the thyroxine and have been outside walking and cycling in very cold and inclement weather, with what I would consider to be a "normal" number of layers on! No need for gloves and hat!!
My plan is to continue to monitor my resting heart rate and BP, basal temperature, symptoms and test bloods in 6 weeks. I'm very hopeful that in time I will also see an improvement in constipation symptoms which will mean I won't need to rely on Laxido twice a day any more. Hopefully I will also see some modest increase in my resting heart rate and BP, so thst I don't feel like I'm going to pass out *every time* I stand up (my current resting heart rate is typically 36-40 bpm). My bradycardia related symptoms have been so bad again that my psychiatrist has been suggesting I need to restart discussions with my GP about a pacemaker again... to me it seems like utter madness that I feel like I've been left to rot, swept aside, unheard- and perhaps all along, as I have strongly suspected, it's been autoimmune thyroid disease all along. And why not fix the root cause of the issue, rather than going in all guns blazing? I can't understand the "do no harm" mantra of our doctors in cases like this, because I've been subjected to so many invasive tests and threatened with a pacemaker, perhaps in time they will prove to be unnecessary.
I'm well read, informed, careful and considerate when it comes to my health care. I'm really not happy that I've had to resort to self prescribing levothyroxine, however in light of all of my long term data, I consider it to be a safe and well considered trial- essentially no different to a considerate GP agreeing to trial levothyroxine on me to see if my symptoms burdon improves! Assuming that I gain all of the benefits and encounter no associated problems, this still doesn't get me out of the woods. I have no idea how to strike up a discussion with a GP to explain my course of action, but of course I should be entitled to a proper diagnosis (on file), for my doctors to be aware and considerate of my apparently genuine condition and for the meciation to be NHS prescribed. If anyone has any tips here, they will be great fully received!
I will continue to move forwards with slow and careful consideration. I intent to remain of 50 mcg levothyroxine for 6 weeks and will then order an appropriate full panel blood test to assess progress, before making any adjustments.
I find it particularly maddening that the NHS won't consider a diagnosis based on presence of elevated TG Antibodies (which I have, along with symptoms and previously elevated TSH), but that they only consider TPO Antibodies as diagnostic when it comes to autoimmune thyroid disease.
Thanks for hearing me out and I look forward to any feedback.
Blood tests after a trial of Levothyroxine
Clutter and others - Success in getting a trial of levo
NICE Guidance on Thyroid Disease - Final Guidance
RANDOMIZED CONTROLLED TRIAL EVALUATING THE CARDIO-METABOLIC EFFECTS OF LEVOTHYROXINE AND LIOTHYRONINE
A trial of T3...Hashimoto's and Depression
