Hello, I was (eventually) diagnosed with Hashimoto's 25 years ago (the misdiagnosis nearly killed me, I was literally a week away from a coma, the consultant said.) I've been on 150mcg on day one and 175mcg day two, for 25 years.
Every time I move house, the gp decides to reduce it, then puts it back up again, saying the bits of paper go wrong! However, this house move/doctor experience is not going well. They reduced it to 150mcg daily for the last 3 months and now want to reduce it even more.
Being autistic, I do not have a grasp of why, and cannot communicate my frustration and terror at this situation well. I have written letters as well as had phone calls, they replied too but today they now want to reduce it more. The old notes are lost on this move from Scotland to England, so I can't 'prove' the reason why the old gps returned to the usual dose and I feel utterly powerless and devastated.
I had no side effects before, the old story is that my 'numbers' are not right and the doctor is not 'happy'. I don't care what makes the doctor or bits of paper right, no one ever took my 'normal' thyroxine level before Hashimotos, and today's practice don't care. The side effects I am having now it is reduced, they blame on the menopause, which (as I'm 55 and some years into this) I consider to be sexism.
I have no agency or influence in my own care, they are a brick wall. I am captured. I'm terrified of putting on weight as I also have Ehler Danlos syndrome from which I am already in daily pain (loose joints) and I'm really scared. They just don't listen.
Does anyone know how I can make them hear me, or can I change gp's? Who can I go to for help please? Many thanks.
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hcmoss68
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Hello, welcome to this forum. There are many excellent knowledgeable members who will be along to help you out. Firstly, do you have your latest blood test results? If not, can you access them online? Alternatively, you can request a print out. If you post the results, we'll be able to comnent fully.
ALWAYS get thyroid levels tested early morning, ideally before 9am, only drink water between waking and test and IMPORTANTLY last dose levothyroxine 24 hours before test
Dose should NEVER be adjusted by TSH alone
Most important results are always Ft3 followed by Ft4
ESSENTIAL to also test vitamin D, folate, B12 and ferritin
What vitamin supplements are you taking
Refuse to reduce dose any further
And get FULL thyroid and vitamin tests
Testing options and includes money off codes for private testing
Medichecks and BH also offer private blood draw at clinic near you, or private nurse to your own home…..for an extra fee
If GP says " I have to reduce your dose because the guidelines say i can't let you have a below range TSH" .....
The first paragraph in the NICE (NHS) Thyroid Disease, Assessment and Management guidelines says :
nice.org.uk/guidance/ng145
"Your responsibility
The recommendations in this guideline represent the view of NICE, arrived at after careful consideration of the evidence available. When exercising their judgement, professionals and practitioners are expected to take this guideline fully into account, alongside the individual needs, preferences and values of their patients or the people using their service. It is not mandatory to apply the recommendations, and the guideline does not override the responsibility to make decisions appropriate to the circumstances of the individual, in consultation with themand their families and carers or guardian. "
Thank you so much, really useful info there. I have refused to reduce the dose, utterly, utterly refused, both by phone and in writing. They have adjusted the prescription without my consent and I can't do anything about it. Its a terrible feeling!
I had a similar situation (not with Levothyroxine specifically mind). I got in touch with my old GP and explained the situation who kindly wrote a letter to my then new GP.
I don’t know if this will work for you, but it did for me.
If you've been formally identified as autistic, then you have the right to ask your GP for reasonable adjustments under equality legislation.
One adjustment could perhaps be that you ask them not to reduce your levo dose until you've had time to process their actions and prepare your case in writing to remain at your previous dose.
It should make them reconsider the pressure and stress they're subjecting you to. If they don't comply, you have grounds for formal complaint.
I don't know enough about autism advocacy per se, but I really need to read up on this area.
I do know that PALS are not the best people to approach for help, since they're compromised by lack of independence within the NHS. In action, they're no better than a post box between complainant and health practitioner.
The National Autistic Society may be able to point hcmoss68 towards local charities which offer various types of help to autistic people. Medical and other forms of advocacy may be included in the services of such organisations, but this no doubt varies by region. The NAS itself does not always serve well the people it was set up to support, but it should at least hold the relevant information. autism.org.uk/
Another place to look for advocacy services is one's local authority website. The county council or unitary authority will be the one to look at.
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