this is a response, buried in a post line, to lots of people agreeing with a reply to my original post, saying feck docs, don't have energy etc.....my reply is said with love to us all. live long and prosper x
I know where you are coming from, I and my family have been there, lived it and are living it. BUT it doesn't help, does it, that everybody doing this method of self medicating and then not telling docs is compounding their bl***y belief that T4 works for everybody.!!! Sorry, not meant to upset you but that is the case. One of the reasons T3 is so tricky IS THE LACK OF LONG TERM DATA ON PATIENTS ON IT proving its saftey if use correctly. ! "You will get cardio and bone probs etc etc.." . will i?? ask where is the data? There is none I can find and they never produced any to show me.
BUT
There will never will be any if we don't stand up and win.
AT LEAST TELL YOUR GP AND INSIST HE ADDS TO YOUR NOTES.
IT IS NOT UNLAWFUL TO SELF MEDICATE.
live long and prosper
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juliat
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Good advice. Even if T3 medication does increase the risk of atrial fibrillation or bone problems (which it will do to some extent in some cases) that is not a valid reason not to prescribe. All medicines carry risks. Cardiac and bone risks can be minimized by monitoring, prophylatic medication and lifestyle changes. There are substantial risks in not prescribing L-T3 in patients who need it. Not least the inability to exercise, elevated cholesterol and weight gain. These risks are greater than the risk of prescribing.
It's clear from patients' responses that supraphysiological doses of L-T3 are usually required. The severe symptoms these patients suffer are not due to the small amount of T3 that is missing when a patient with primary hypothyroidism is given levothyroxine only treatment. Thus, trials of physiological doses of L-T3 in patients with confirmed primary hypothyrodism are irrelevant. These trials are based on hypothesis rather than clinical data (patients' response to L-T3). It doesn't matter if there have been 15 or 20 such trials. Data from 20 useless trials is no more valid than data from 1 useless trial.
This is why it is important for your doctors to know what you are taking and how you are responding. It's feedback. Doctors can see improved health and the doses required to elicit that improvement. They might also spot signs of over-medication which a patient might not notice. They can also precribe medication to mitigate any potential long term risks.
Hi juliat..... During my last consult with my GP she said we need to discuss my " phased return to levothyroxine" my reply was "I point blank refuse to go back onto t4, I will buy my drugs online and self medicate" I asked if she would still continue my care for other ailments and monitor my bloods and she said yes she would. My second application for funding is being processed currently with no hearing date as yet, I bitterly regret moving to Somerset although my doctor told me it is now a nation wide directive to stop the prescribing of t3..... I still say we march on Downing Street chain ourselves to the railings
Pixielula I am begining to think that the only way we will get change is to get out there and be seen. Maybe we should do a poll see how many of us feel that this maybe the only way , and how many would be interested in doing something. As i know i have had a enough . Its just been a curse on my life . I would come with you if i had to crawl there if we could get change. Moan over.
I am probably being a little naïve here Juliat, but I wasn't aware that patient notes were shared in this way, thought that data was always obtained from controlled clinical trials. 2 years ago I was prescribed T3 through a private endo. Neither T4/T3 combo nor T3 only worked for me (in fact it made me a whole lot worse) and this will all be contained in my patient notes. Since then I have self-medicated with NDT, my doctor has been informed and I don't collect prescriptions for T4.
If you are collecting and using T4 meds and topping up with your own T3, I would agree that this needs to be on your records.
With potential long term risks I'm thinking of patients such as myself who require high dose L-3 treatment resulting in a suppressed TSH. The second study you cited illustrates the case that liothyronine can be as safe as levothyroxine (it omits to note that patients on liothyronine are generally in a worse condition). This is probably due to the superior care these patients receive from those doctors who are willing to prescribe L-T3. The treatment is potentially more hazardous (on high doses) but the risk is mitigated by good care. You need to work with your doctor to get this care.
But when your doctor refuses to work with you?? My TSH was 'only' 4 so they wouldn't treat me at all. My TgAb were 100 times above range & I could barely stand up.
"You need to work with your doctor to get this care."
And where pray, are these magic doctors that will work with us?
Self-medication is the last resort of the desperate and the desperately ill after years and years of being rebuffed, humiliated, put on antidepressants and KEPT ILL etc, etc, etc.
Oh how we long for good care and doctors that are open to a two-way discussion.
Honestly, the tone of this post and yours jimh, is that no one's quite thought of that route. The first thing we want and expect is to work with our GPs as it is afterall, our health but for thousands of us it hasn't quite worked out that way.
Stop putting the onus on the patient to turn around an entire professions' attitudes towards us. We've been there, got the kicking and learnt from painful experience.
GPs are not going to enter into an independant study then all gang together to provide a meta analysis of people on T3. More likely, if we descend on them en masse, they'll use whatever powers they have to close any way of getting T3 privately.
And people like HarryE above and below? What advice/solution for his "you're not ill - go away" situation would you recommend?
The question is if one is self medicating should you tell your doctor? I would for two reasons:-
1. The doctor can see your improvement and has the potential to learn from it.
2. The doctor can monitor you. We can judge how we are responding to our medication but most patients would not for example be able to spot asymptomatic atrial fibrillation. Thus, a GP can monitor the patient and if necessary prescribe to mitigate any (small) risks. Note I'm not suggesting self treating with thyroid hormone carries higher risk than other medical treatments.
It may be that your GP will not agree to such care. In which case the doctor patient relationship has broken down and the solution is obvious.
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Telling GP that you are taking T3
What time(s) of day do you take your T3 and why? 
