If you self medicate - have you asked for the thyroid medication to be noted down in your medical records?

I'm a bit worried about this, because if - say - I was admitted to hospital, surely they would need to know about any medication I take? And if not, couldn't it be potentially dangerous if they don't know?

If all goes well with the NDT - should I notify my doctor, and will/can they actually put this in their records if they haven't prescribed it themselves?

12 Replies

  • They should put it in their records. If you went into hospital, take your medication with you and take it as usual. If they query NDT as most are ignorant about it just say it's hormones for your thyroid gland. Don't let them persuade you to change to levo as their understanding is nil.

  • Thanks Shaws. Do you think a letter to my GP would be the best way to go about it? Do I keep it brief and to the point, or do I explain the reasons why I'm self medicating - and should I also mention that their diagnosis of CFS is utter tosh? :D

  • You made me laugh with the 'utter tosh' but, no, I don't think you can say that as that's what they've learned in medical school (I presume).

    Initially, if you decide to self-medicate, I wouldn't say anything at all as it may not work as you wish. I tried about 4 NDT's before I found a suitable one.

    Preferably you should have a blood test before you change over and then you have a comparison with your new meds. Normally, once you are on an optimum dose you only need a yearly blood test so if you are doing well you can then tell your GP the reason for your wellbeing. In the past, before blood tests for the thyroid gland, people were medicated till they felt well. Always remember to go slowly and 1gr NDT is equal to around 100mcg levo.

  • If you attend in a planned way, eg for elective surgery or similar , you would list your meds for them anyway, at admittance , or at the pre-op assessment point etc. If you were admitted in an emergency and were compos mentis I guess you would do the same, or if unconscious a family member would be there to speak on your behalf. Perhaps belt and braces would be to wear a medi alert item. Or am I seeing this too simplistically ?

    Shaws right about ignorance, I even had a problem getting them to accept and understand that I was prescribed both T4 and T3.

  • Yes you're probably right. I suppose I just want it on my records - regardless of any potential hospital visits (none planned!). If I could convince my doctor that I have a thyroid problem, which hopefully I'll get under control (because of the meds), then they can remove the chronic fatigue diagnosis? In a way, I just want to say 'look at me, I'm well. You got it wrong. Put THAT in your pipe and smoke it' :D (I may be eating my own words if I still feel unwell in 6 months time).

  • I'm absolutely with you on that! :-) :-)

    Perhaps then, take action when you've got demonstrable evidence that you're well (a before and after picture on your file would be a great reinforcer LOL).

    Good luck

  • I had this inner debate too sip. I really wanted to go & tell the GP to stick their stupid ideas as I've proved what they all said wasn't true, but in the end I went to see someone privately to back me up & write to my GP.

  • Hi Sip,

    I'm similar to you in that my GP does not know I am self medicating with NDT.... It's a good point because I did not consider the unexpected hospital//accident issues, although I am officially6 registered as on 25 mcg loading does Levo.

    I would think you are in a better position to tell your GP unlike me who is actively disagreeing with their treatment. I will pluck up the courage to tell mine along with a symptom improvement declaration...in writing first - ahem.

    Glad to read you feel improvement. I suspected my thyroid for ages but it has only recently been picked up in standard lab tests. It all got clouded with a fibromylagia/cfs diagnoses. Take it you have read Dr Lowe's work. Good luck

  • I've told my GP what I'm doing and told them that CFS and fibro are none excistant and are labels given to people when they don't know what's wrong or don't believe the symptoms of a patient as the bloods are still, only just, in range, but I'm a rebel and have had enough of it all.

    My GP knows I'm using hydrocortisone and I self inject B12. Haven't told her I've added T3 for depression and mood yet but have asked for T3 tests which she won't do and I did hand her a paper on the use if T3 in yesteryear for depression and psychological problems.

  • How did she react to you handing her info? I've been tempted to do that, but I feel a bit 'wrong' doing it lol. Like I'm saying I know more than them.... hmmmm....... I'm starting to wonder if that's actually true though!

  • She had no choice. I thrust the stuff at her. I told her what I'd read and provided her with the academic literature. We probably do know more. We read up on our illnesses they only have limited knowledge. I read articles from the British medical journals and medical papers, books, learning from knowledgeable drs.

  • Your point is, in my book, a very important one.

    When it comes to self-medication, getting hold of whatever you want to take, and getting onto a reasonable dose are the easy steps. (Well, maybe not very easy, but not that difficult.) Staying on it despite everything life can throw at you is the difficult bit.

    I agree with you that it would be best if it were in your records. Even if it were, an emergency situation would be difficult as I doubt many hospitals have any stock of desiccated thyroid and they might be very unwilling to give it to you even if you were carrying your own.


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