I have been on T3 (140mcg daily) for some years now. I have steadily increased until I am at what I feel to be optimum dosage. I periodically check my bp, pulse and temperature.
My GPs dislike this treatment but have gone along with it as I can spout technical stuff when required and assure them that I monitor myself.
This morning I received a letter from my GP who quotes a whole lot of stuff about T3 causing strokes and osteoporosis. (The GPs insisted that I have a dexa scan and heart scan - both fine. (I am 56.)) He then goes through a whole lot of stuff about T3 being alternative treatment and not endorsed by endocrinologists and recommends that I stop all thryoid treatment. According to the surgery I do not have hypothyroidism as my diagnosis was on the basis of a private urine test - tsh tests were "within range".
Quote: "I accept entirely that there may be 'side effects' from your reducing or stopping this treatment. This may include increasing weight and decrease of energy levels. However, we would not feel it clinically justifiable to continue any form of thyroid hormone therapy to treat these."
Is he mad? Before diagnosis and treatment, I was awake for barely 6 hours per day. I put on 3 stones in weight while on on a continual diet. I could not function and lost huge amounts of money in my business because my brain did not work and I could not cope.
I cannot tolerate T4 and am sick when re-introducing it - at a GPs insistence.
As a part-time worker and with a husband not employed at present I would struggle to meet the cost of T3 privately.
This GP has offered to meet me should I so wish. I'm not sure that it would make any difference but I would like to know what I can throw at him, apart from some rotten eggs, which would make any difference to someone so entrenched.
I think that I will request my medical records.
Any suggestions gratefully received. Also - how much is T3 privately? I have an idea that it is around £20 for 28 20mcg tabs.
I am now going to trawl round for a GP who might prescribe T3.
Thanks.
Written by
penny
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If he is telling you to stop all thyroid meds then surely he must first ensure you have a thyroid capable of working at the very least.
Am not medically minded but if it hasn't had to work for "some years" the first question I would ask is whether it could work now! Whether the original diagnosis, particularly if it was many years ago, was correct is irrelevant now.
Yes, he does sound mad and there seems so much wrong with all this I have just picked up on one point!
Hi tegz, thanks for your comments. I have maybe 2-3 weeks' supply. I hope that I will be PM'd with suppliers as if I miss even two pills I stop working.
Hi Penny, this is everyone's nightmare when they are on T3 only. It is definitely mine and I perpetually wait for the letter you have just received. I hope this is not indicative of a general clamp down on prescribing. I know that you can buy it abroad quite cheaply and I think you will receive lots of pm's. Just for ammunition, my friend is prescribed it by the endocrinology department of the Royal Berks Hospital in Reading. If endos do not endorse it why is she given it. In truth it is not your high dose, so I guess this is all about cost at your practice. Do hope you will find plenty of studies to take to your appointment and convince him but he sounds unhinged, so as you say, find a new practice with educated GP's. Wishing you luck!
My suspicion is that your GP has been got at by the Society of Endocrinologists. I'd guess they have issued some "guidelines" and your GP is afraid of reprisals. Getting him or her to acknowledge that would, however, probably be a step too far. It might be interesting to ask?
You shouldn't have to pay to get the treatment you need. That's why we have the NHS - a service into which we all pay. It's not "free", we all pay, so we should all be entitled to the treatment we need in return. (Apologies for rant)
the paper... that says there MAY be a link to heart issues is written by a scientist who works for the makers of T4... there is NO independent evidence whatsoever..... this is scaremongering crap put about by drug companies.. it's disgraceful... I would self medicate... It's your body... you know what makes you feel well...
...expect the admin staff have been told to go through patients files to see where they make cut backs - ummmm. Unforgivable. I thought part of the Hippocratic Oath Doctors take was - to do no harm. Am sure you will overcome the problem. Best take your holidays in Greece next year and stock up as others on here have done. Also other countries allow you to purchase without a prescription. Under 2 euro a pack - I know that is not very helpful at the moment - but I'm sure all will be resolved....fingers crossed........
T3 in this country is supplied by one manufacturer by prescription only and costs the NHS a whoppingly obscene £52 for 28x20mcg tablets, hence a possible reason for your GP wanting to stop yours. I hope you know someone somewhere like Greece or France where they are available for less than 2 Euros without a prescription!
Hi Sandy12, I am sure that I do have tissual resistance to thyroid hormones as I am well on 140mcg of T3, although this is 20mcg higher than usual due to a duff batch of T3. I have explained to the GPs that their blood tests are useless as they test TSH and T4 but offer them as much blood as they wish. My TSH is < 0.01 and my T4 very low (no number to hand), as one would expect. When I add T4 in the form of NDT I feel sick again.
What really riles me is that the GP has decided that my life would be better with weight gain and a diminution in energy rather than risk a theoretical stroke. If he had been severely hypothyroid he would not reach that conclusion. I would rather risk a stroke than return to the half-life I had before diagnosis and treatment. (Not diagnosed by the nhs, by the way.)
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