Hi every one.
I thought I would post an update to my post of last October. Following the very helpful advice from DippyDame and others I read the book on Impaired Sensitivity to Thyroid Hormones. Everything applied to me including lots of problems within my family.
I decided to make the change from 125mcg liquid levo and 47.5mcg lio to lio only and to take it in a single dose in the morning. I started reducing levo by 25mcg on the 31st October and a few days later when I felt hypo, I increased lio. I continued to reduce levo every seven to ten days. Almost immediately, I felt so much better. The big difference being that I was sleeping so much better. I was no longer laying awake all night. On the 19th November we went on holiday to Orlando. ( I was taking 55 mcg lio and 100mcg liquid levo ) For the first time in years, I really enjoyed the holiday. We did lots of walking - 4 miles or more most days. There was no searching for toilets everywhere we went! I slept eight and a half hours straight one night - I haven't done that in over thirty five years! Most nights I slept six or six and a half hours straight. I woke up full refreshed and raring to go.
It was wonderful until two days before the end ( 2/12 ) when I caught my husband's bad cold. A week later it had gone into my sinuses and it has stayed there. I have continued to reduce levo and increase lio. I have now stopped levo completely. I settled on 90mcg lio but then I felt hyper and reduced it to 87.5mcg. I was still feeling bad so I reduced it to 85mcg but then I felt really hypo and put it up again. I am not able to find a level that I feel good on. On the 3rd January my blood pressure was the lowest ever - 120 /65 but now it's shot up to 150s again. From previous experience being under medicated causing my blood pressure to shoot up as well as being over medicated.
Every thing has improved. My very droopy eyelids are raising, my vision is much clearer. The missing hair on the outside of my eye brows is growing back. I feel much more with it - no longer going off in my own little world all the time!! No constipation etc etc. I haven't lost any weight but two weeks in Orlando and Christmas may be to blame!
I am struggling with what level of lio I should be taking. I am worried about my blood pressure - I initially thought it was due to over medicating but now I feel hypo and it's still high and I'm now wondering if the sinus problem is to blame.
After much research, I emailed Addenbrookes hospital on the 20th December and asked if their thyroid specialist could help me and would see me. I was amazed to get a phone call from them an hour and a half later confirming they would see me. The following Monday I delivered a letter to my gp asking her to do an urgent detailed referral as per their request. I also told her that there was no point in my seeing the endo at my local hospital as even if he agrees to see me, he wont be able to help me. As I'd heard nothing and nothing had been on my medical records, I emailed the doctor last Wednesday. The reply was confirmation my gp has received my letter and she is "reviewing " it. Meanwhile, monthly notes are added to my medical record stating that they are very concerned about my over medicating and that my TSH has been checked within the last twelve months!! It also states that I am prescribed 45mcg lio daily. Four times in the last five years, I have been ordered to reduce lio from 47.5 to 45mcg. Four times it has made me too unwell and I have put it back up to 47.5mcg and each time I have told her that.
Addenbrookes does not operate the normal nhs waiting list. Instead it triages all requests based on detailed referrals from gps. I am now worried that they won't view my referral as urgent as my gp is taking so long to send it.
As long as my gp continues to prescribe my usual 100 lio tablets monthly, I have sufficient for another three months. I am very worried about after that. I get on really well with Thybon Henning. I was prescribed it after reacting very badly to the uk options. I doubt I will do any better on the non prescription options that are available here because of the many fillers that they contain.
Any advice or suggestions would be greatly appreciated. Thanks for reading this.
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