An update to my previous post 6 days ago. Tried to speak to my doctor, she was unavailable and another doctor gave me a repeat prescription for 50mcg Levo and said I had to speak to my doctor if I wanted a change in dose.
Finally managed to get a message to my doctor today, requesting an appointment or phone call. Explained FT4 still very low, TSH still higher than I would like and I don’t feel better. Advised by Thyroid UK that I am undermedicated.
Reminder of my test results:
FT4 : 7.8 (7.7-15.1)
TSH: 3.9 (0.34-5.6)
Just got a text message saying “please be advised: Thyroid blood test normal , continue Thyroxine same dose”. No call, no discussion. Don’t know what to do now, presume I just stay on 50mcg and hope that in time I will feel better. Can’t afford to go private so am a bit stuck!
Grrr!
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Xmrkn20
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Just got a text message saying “please be advised: Thyroid blood test normal , continue Thyroxine same dose”
Don’t know what to do now, presume I just stay on 50mcg and hope that in time I will feel better.
It's the squeaky wheel that gets the oil. Make a nuisance of yourself. Use this information, list your symptoms and emphasise what effect they're having on your life:
Replacement therapy with levothyroxine should be initiated in all patients to achieve a TSH level of 0.5-2.0pmol/L.
Also, Dr Toft, past president of the British Thyroid Association and leading endocrinologist, states in Pulse Magazine (the professional publication for doctors):
"The appropriate dose of levothyroxine is that which restores euthyroidism and serum TSH to the lower part of the reference range - 0.2-0.5mU/l. In this case, free thyroxine is likely to be in the upper part of its reference range or even slightly elevated – 18-22pmol/l. Most patients will feel well in that circumstance. But some need a higher dose of levothyroxine to suppress serum TSH and then the serum-free T4 concentration will be elevated at around 24-28pmol/l. This 'exogenous subclinical hyperthyroidism' is not dangerous as long as serum T3 is unequivocally normal – that is, serum total around T3 1.7nmol/l (reference range 1.0-2.2nmol/l).*"
*He confirmed, during a talk he gave to The Thyroid Trust in November 2018 that this applies to Free T3 as well as Total T3 and this is when on Levo only. You can hear this at 1 hour 19 mins to 1 hour 21 minutes in this video of that talk youtu.be/HYhYAVyKzhw
You can obtain a copy of the article which contains this quote from ThyroidUK
Email : tukadmin@thyroiduk.org
and ask for the Dr Toft article from Pulse magazine. Print it and highlight Question 6 to show your GP.
tattybogle has a post with even more links that will be useful, hopefully she'll pop along and link to it.
You have to push back (hard) if you want to get anywhere with NHS . if it was me , i would :
Find a way to contact the GP who just texted you ... even if you have to write a letter (on that stuff we used to used to call 'paper'), and physically hand it to a receptionist. "For the attention of Dr ..."
In the letter:
~ include quotes from these references healthunlocked.com/thyroidu... which advise GP's to keep TSH below 2/2.5 on levo,
~ repeat your request for "a trial increase to 'x' to see if it will improve current symptoms which are having a significant effect on daily life"
~and something like "if you still feel unable to increase dose after reading the enclosed references, please reply in writing stating clearly why you disagree with those recommendations , why you are refusing a trial increase to 'x 'mcg , and what harm you think it would do to try it .
~keep a copy of the letter.
if they ignore it ....send another copy to someone higher up at the surgery ,, ie practice manager ?
Thank you. My plan is to stay as I am but get a private blood test in 8 weeks. Meantime I have now got vit D3 which may help. If blood test shows no improvement, I will stand in reception until someone sees me!
As the others have said, you need to be persistent and make a nuisance of yourself - nicely. It's awful that they haven't even listened to your symptoms. if necessary email or speak to the practice manager. Good luck!
Thank you. I agree, I plan to see how things go (ie give them a chance to be right), get a private blood test through Thyroid UK discount code and then go and see someone.
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