"Changing medication"

So here I am six months after my horror story started.  I was working as a ward nurse when I received a letter from my local GP practice inviting me to attend as I had been selected to switch from combined therapy (T4/T3 levothyroxine/liothyronine) to T4 (levothyroxine) monotherapy.  I had been previously well established on combined therapy since 2011.  The letter explained that the health board was no longer prescribing liothyronine – explaining that there was no difference in symptoms when receiving T4 or T3. The evidence base for this was not cited. The letter recommended not to source T3 privately and not to request a private prescription for T3 because that would not be given either. In fact there was no option other than to accept T4 monotherapy.

Within 2 days of a reduced dose of T3 (in an attempt to “wean off”), I felt horrific symptoms which increased over the next weeks - overwhelming fatigue – could hardly move, no energy, sleeping more than 14 hours a day, freezing cold (low body temperature), pain in joints developed, painful acid reflux after eating, hair started to fall out, skin dry and rough, brain fog – forgetfulness, memory slips.  In fact, I could not drive my car as I couldn’t remember what to do and felt very shaky and anxious.  Over the next months my life was on hold – I could not work, could not exercise – I put my gym membership on hold.  I was lucky if managed to shower and get downstairs, I put my study on hold.

I went to see a private endocrinologist as I was not getting to see NHS one.  I wanted to know if the medication regime proposed was (a) sensible (b) safe (c) would I regain my former health?  This endocrinologist suggested not on the lower dose and also said, after looking at my history, it should not have been changed and the dosing drop was cruel.  The doctor recommended the dose be reinstated. 

At the end of October the dose was reinstated.  I requested to see endocrinologist but was rejected with reasons being there was little point as I was on previous dose.  I saw a different GP within practice and argued that I had not recovered, was I just going to be left?  I had provided evidence obtained from a private organisation that I was DIO2 homozygous, very suggestive that I had a conversion difficulty and that T4 to T3 would not happen efficiently – i.e. evidence that liothyronine was needed.  I found out subsequently that I am also DIO1 homozygous.  My 2nd request to see endocrinologist in light of these results was rejected again. 

The dose of liothyronine has been increased slowly over the past months but I have still not reached my former wellness. I am still struggling. I have taken advice and read widely from Thyroid UK and the British Thyroid Foundation, the European and American foundations too.  I am doing all I can to try to achieve wellness – I supplement with Vitamin D and the Bs, as I’d privately tested and had less than optimal results. I have had my adrenal function tested privately – it is not optimal but not terrible either.  I am resting, avoiding stress, eating a wholesome diet – trying to avoid any further allergens outside of the coeliac diet I follow.

As a coeliac patient, I also had a review with the consultant.  I follow a strict gluten free diet which is reflected in my excellent blood results.  However, my liver function is off a little as are inflammatory markers.  The gastroenterologist referred me to endocrinology – to help restore my wellbeing to how I was last September – but rejected once again. So it’s me and the GP and the fight to maintain liothyronine and the fight to regain wellness.

As an NHS ward nurse, it has certainly not been a cost saving.  It’s been very expensive – my personal losses – work life, social life, health and wellbeing, loss of university experience (to improve my knowledge in my area of work).  It has cost the Health Board in finding a replacement whilst I have been unable to work as well as pay my salary.

I’m fed up of hypothyroidism.  I really wish that levothyroxine worked wonders for me.  It doesn’t. I have tried to prove why. The evidence has not been appreciated by endocrinology. Without liothyronine, for me there is no life.

I’m back to work on an extended phased return. I have not recovered but am better than I was.  It will take some time to restore. My dose may need further adjustment.  I have no hyperthyroid symptoms and I measure my vitals regularly.  It is a slow, slow recovery with no easy fix.  I am grateful to the GPs who have supported me. This has been an extremely regrettable situation, one which I had no control over and that has been extremely detrimental to my wellbeing.  It should not have happened.