Morning everyone, I would really appreciate opinions on my situation please.
I have hashimotos and, after 15 years of being very unwell and fighting for the right treatment, I got the help I needed.
For the past 5 years I have been very healthy indeed as I found a GP who manages my symptoms not blood tests ( unbelievable for many to understand I know!). Being prescribed T3 changed my life beyond belief and after lots of tweaking my medication has been 250mg Levo and 15mg liothyronine 3 x a day for 4 years and I have NO symptoms which is amazing. I did have a mini stroke 4 years ago caused by stress and dangerously high BP but I take BP medication and daily aspirin and am under control now.
A year ago I developed a lump on my tongue which has lead to many scans and tests and 5 operations to remove lumps, 2 under general anaesthetic. This is not linked to my thyroid in any way and came out of the blue, I gave up smoking using a vape and this may be the cause but there's not enough proof as vaporising is fairly new so there's not enough scientific evidence yet. ( I no longer vape!).
2 of the lumps removed were cancerous but thankfully there is no spread and it was all removed so no further treatment required but the consultant recommended that I remove refined sugar and artificial sweeteners from my diet which I have done and start taking curcumin ( from the turmeric plant) as oral cancers react well to it in scientific research. I now take curcumin every day and feel fine on this.
The general anaesthetic appears to be where the problems lie as my heart rate and blood pressure were extremely high during the surgery. In August last year my heart reacted badly and led to 3 trips to hospital with tachycardia ( heart was racing at 185 for nearly 3 hours in A and E on one occasion!).
After tests with a cardiologist it was decided that my heart is very healthy but must be reacting to trauma of surgery and my medication so this should be reduced to 200mg Levo and 10mg lio 3 x a day. This happened in August and has lead to no changes in my symptoms so I'm happy!
Fast forward to 2 weeks ago and another general anaesthetic! The anaesthetist told me that I had worried them during the operation as my heart rate and BP were very high and he thinks this may be because I am thyroid toxic as my TSH is 000.8 so my medication needs to be further reduced and I need to be referred to an endocrinologist. I was kept in over night for monitoring. My BP and heart rate were high for a while but settled overnight and I was discharged.
My lio was decreased further to 150mg immediately after surgery and T3 kept the same and I have been ok for the last 2 weeks thankfully ( no tachycardia just occasionally a few palpitations) but I have been recovering from the operation so not at work and going to excercise classes, walking and socialising and living a busy life so it's hard to tell if I will become symptomatic again.
As I'm sure many of you will understand I am petrified of becoming really ill again, I really can't cope with being labelled with fibromyalgia, chronic fatigue, irritable bowel, depression, anxiety, etc etc etc again,which was the case for many years.
Please can someone tell me how long it will be before my body will tell me that my medication decrease is too low? I am due to go to Greece and Italy on May 31st for 18 days so it's unlikely that my endo appointment will be through before then and I don't want my holiday to be spoilt with low energy etc etc.
I must admit at this moment in my life I HATE having thyroid disease so much, I just want to be normal! I am sure that being symptom free for 5 years is something many of you would give anything for and I am thankful that I had this time believe me but can't bear the thought of going backwards.
Thank you to anyone that has taken the time to read this, I would really appreciate your thoughts.