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Very glad I have found you :-)

liddoljak profile image
13 Replies

I have congenital Hypo and my GPs are driving me nuts. Cut my dosage last July, then again in October put on a stone in weight and feel generally flat and rather fed up. I was feeling pretty fine before and I only went for the blood test as I had been avoiding having it done, didn`t see a particular need .

So feeling annoyed I booked myself a blood test and the results have come back as "normal". I have an appointment with my GP on Monday and this chap will hopefully listen. It`s been remarked on previously that apparently slightly over treated works best for me.

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liddoljak profile image
liddoljak
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13 Replies
Clutter profile image
Clutter

Remind the GP that you have a lifetime experience of your body, congenital hypothyroidism and thyroid replacement dosing that suits you.

Request the dose that you felt well on, even if you have to titrate over a couple of weeks. Tell GP you WILL have the right dose even if it means you resort to online buying.

Glynisrose profile image
Glynisrose

Can I ask why you agreed to the lowering of your meds? If you don't agree to it the doctor can't reduce it!!

HarryE profile image
HarryE in reply toGlynisrose

Well they can if they refuse to prescribe the amount you need

helvella profile image
helvellaAdministrator in reply toHarryE

Absolutely.

A doctor is supposed to stand behind every single prescription they ever write. If they think that a certain dose is inappropriate they can, indeed, should refuse it.

The problem appears to be when they do so out of ignorance

They are also not supposed to change doses without discussion - and effectively to try to get you (as patient) on-side. But if that fails, and they dig their heels in, you have to go to another doctor.

liddoljak profile image
liddoljak

Hi

Would err on the side of accepting the gp s advice, but he does prescribe in the end and was putting a case around possible fractures later due to over treating now. So at tbe time didn't feel I could argue. However I have been finding out lots of interesting Information overl the past few days.

HarryE profile image
HarryE in reply toliddoljak

As far as i've managed to find out, the fracture thing is a total myth. I know my bones would be much better if I was able to walk like I normally do, rather than spending every day on the bloody sofa!!

shaws profile image
shawsAdministrator

Even Dr Toft who was President of the British Thyroid Association says in an article that:-

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).

Even while taking the slightly higher dose of levothyroxine a handful of patients continue to complain that a sense of wellbeing has not been restored. A trial of levothyroxine and tri-iodothyronine is not unreasonable. The dose of levothyroxine should be reduced by 50µg daily and tri iodothyronine in a dose of 10µg (half a tablet) daily added.

****

If you want a copy of this article, email louise.warvill@thyroiduk.org. It's from Pulse Online the doctors magazine.

shaws profile image
shawsAdministrator

Do most endocrinologists and doctors believe in mythology.

HarryE profile image
HarryE in reply toshaws

It would seem so ;-)

Glynisrose profile image
Glynisrose

NO, unless you actively agree or say nothing the doctor can go ahead and reduce your meds, if you say NO then they can't!!

HarryE profile image
HarryE in reply toGlynisrose

I don't think that's the case. If they won't give you a prescription, what can you do about it?

Glynisrose profile image
Glynisrose

They can refuse you a prescription but as the NHS rules stands they cannot reduce or otherwise alter your prescription without your agreement if you say nothing then you are deemed to have agreed I would NEVER let any doctor reduce my meds, especially based on the faulty TSH blood tests!!

liddoljak profile image
liddoljak

Well went along to see my Gp today, he is the best at the practice and has been away for a while, the appt was late as he was running lte, he always does because he gives time to all!

He has said I should increase levo by 25 mcg on Wed and Sundays then book an appt for a blood level in two months time when he intends to do a full blood scan checking out level of all including pituitary, iron etc etc. So glad he is back :-)

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