After all the wonderful advice I had here I managed to finally get hold of a GP at my practice (not the one I was originally dealing with) and luckily for me she has thyroid issues so knew all about it.
I stated my case point by point and told her I'd had a private blood test and she listened nd said she would start me on a low dose (she said 25mg to begin with as I have Osteopenia) and is referring me to an Edocrinologist as I am 'so borderline' to see why I am having so many symptoms and blood tests every 2 weeks after starting Levo to see if my T4 goes up. Also possibly a scan.
Do you think they will start me on Levo and then take me off if T4 goes up? I don't want to end up back at square one. She asked me if I'd also had a test for antibodies and I told her they were both under range but she didn't seem convinced that this ruled out Hashis.
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skyrocket
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skyrocket that is encouraging news and you are over the first hurdle.
Take one step at a time - I too am quietly concerned about being back at square one, but worrying won't help. It is very good news this particular GP is on your side 😊.
Thank you Solstices it's a big relief because I was steeling myself for a row. My mum told me she has underactive thyroid (she found out after losing her hair and putting on loads of weight) and I strongly suspect my Grandma to have it too as she has the same symptoms as my mum.
I have this horrible pressure on my throat which feels like someone has their hand round the base of my neck and swallowing feels laboured. I just want to feel well again!
skyrocket it's good that you are seeing an endocrinologist especially with the throat tightness and that GP is going to monitor you closely, she might up your dose before the usual 6-8 weeks perhaps.
It's a strange kind of relief when you're taken seriously isn't it?!
I've been on Levo for 3 weeks now and grain free for 4 and I'm starting to see improvements in some symptoms - sinus, feeling icy cold, base of spine back ache, generally feeling brighter and wanting to do things. I know though that I have to pace myself. But it seems to be going in the right direction. I have optimism which I haven't felt for months.
This forum has been like a trusted understanding friend who knows what it's like and can offer the necessary information to help you get yourself better. However understanding friends and family are, unless you've experienced it they cannot truly comprehend how it feels to have the life sucked out of you.
You're off to a good start. Best wishes for it to continue. X
The goal of Levothyroxine is to raise your FT4 so that you become euthyroid, it would be madness to withdraw it when it is doing it's job. For most patients euthyroid will be when TSH is 1.0 or lower with FT4 in the upper range. FT4 needs to be in the upper range in order that sufficient T3 is converted. Read Treatment Options in thyroiduk.org.uk/tuk/about_...
Your GP is right, negative antibody results don't conclusively rule out Hashimoto's. You might just have been tested at a time when your antibodies were low but some people are sero negative and are diagnosed via ultrasound scan.
According to Izabella wentz, the Thyroid Pharmacist, about 20% of us with Hashi never test positive for antibodies. If that us the case, they can scan thyroid. With Hashimoto's it will apparently look granular.
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Well! Doc wasn't 'interested' just clueless!
Nurse phone call update
Dr wants me to go back on levo
