Letter to doctor about self-medicating

I have been taking Thiroyd for 6 weeks now and am starting to feel great. As it is nearly time for me to submit my next prescription for levo I have been wondering how to tell my doctor I am self-medicating. I found a sample letter on the STTM website and thought about using that, asking that it be placed in my notes. My daughter who is suffering from chronic fatigue and severe B12 and Iron deficiencies and is now also self medicating, told me of incidences she has read about on her health forum of people being 'struck off' from their GP practice when they have admitted they are self-injecting B12. Before I take action, I would love to hear of some of your experiences of telling your doctor you had taken your thyroid health into your own hands. Thank you.

8 Replies

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  • I have that yet to come, I've started on T3 and so far there are small signs that it's helping me. I might tell them if they ask I suppose but I avoid the GP as much as I can because although some are willing to help they tend to wobble if you ask them difficult questions or they respond with a mouthful of what they learned at med. school. Ok I guess if they're dealing with something fairly common but when I called my Herpes, herpes and the GP said "let's just call it a cold sore ..." I lost what little faith I had the arrogant git.

  • Prescription repeat or TFT? It's personal choice, some like to keep their GP in the loop but, as you say, you run the risk of their wrath. Others feel they don't need to know, having been failed by their GP who's shown no interest in helping them regain their health.

    It's early days for you and good that you're improving. Why not leave it longer til you've settled on the right dose for you?

  • I would also add, in my experience anyway, that GPs do not realise that other thyroid meds exist. After all they've been taught that Thyroxine is all you need.

    Time after time I've seen the look of panic on a GP's face when I tell them I'm self-medicating with T3. Despite trying to explain why I'm always shut down, they're not interested in whether I'm feeling better.

    My response now is that my health does not depend on numbers on a lab report arrived at by use of a test that was never designed as a stand alone test. I therefore manage my condition myself and am the best person to do this.

    I think they have me sussed!!!

  • Eannj,

    Very few GPs are so dictatorial they will deregister patients who self medicate. When I told my trainee GP I was self-medicating he was apologetic but didn't think I would get it prescribed on NHS (he was wrong).

    You don't have to tell your GP until you are certain you want to continue self medicating. Your practice probably doesn't monitor prescriptions unless you submit them prematurely.

  • My "self-medicating" consists of adding 12 micrograms of self-purchased Uni-Pharma levothyroxine to 100 micrograms Actavis from the NHS.

    I told my new GP, she had asked why I was taking the unusual dose of 112 micrograms. "Oh OK. So I'll supply 100 on prescription and you'll top it up. That's fine."

    I am not so naive as to think that there might not be good and valid reasons to avoid telling GPs (and other medics), but as a basic principle, I think we should tell them. Otherwise how can we expect them to understand, to maintain treatment if in hospital, to monitor? They might even learn when you come back every year for a decade that a bit of liothyronine doesn't necessarily kill you. :-(

  • I announced to my GP this morning that even if he can't prescribe NDT for me I will do it myself. I think this startled him a little, but he didn't show any signs of throwing me out, thankfully! :D

  • In the middle of this myself. I need a new GP / DNP. That speaks my language. And frankly, I am composing a letter that will require her to look at the staff ineffectiveness along with her inattention to the fact I was dealing with stage IV cancer for all Spring and Summer. So I wish you the best on this one. If they all kicked us to the curb what would we do though? For some things, a GP is a necessity.

  • No, your GP will get very excited when your TSH drops well below range, but very few will strike you off. I do make sure that any new doctor I see gets the message loud and clear that its done our of desperation, and I would be much happier getting the care I need to make me well. I do also say I understand the risks I am taking, but since I was suicidal before NDT it doesn't seem a difficult choice. I wasn't quite suicidal, but it lost me my relationship and my job, so it wouldn't have been surprising had I felt that desperate.

    Its worth making sure your story is clear in your head, and rehearsing what you plan to say. In general GPs have been taught that very low TSH is lifethreatening, so its not surprising they get into a flap. You need to bring them down to earth, ask them to look at you and agree that you seem well.

    I suspect that I am lucky because it is clear that I am intelligent and well educated, and I speak BBC English. In some cases I have watched doctors switch to my level as the move from someone less articulate to me. Its much more difficult for people who lack my confidence(and bolshiness!).

    Personally I would break the news in person, rather than sending a letter. If you send a letter you have no way of managing their inevitable reaction. Face to face they have to stop and listen - although hearing is more difficult for some.

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