Self medicating?

I have noticed that a lot of people are self medicating. i have read and think I understand why you do this.

I'm just wondering. Are you open with your doctors about what you are doing? How have they been with you.

I know when I post my bloods if you guys think I need something extra that my doc won't supply me with I'd be tempted to. However, it would make me worry. How do I know what am actually getting.. Do we order from pharmaceutical companies?

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26 Replies

  • Thanks. So have you been open with your doctors?

  • Thanks. It's so nice to not be alone anymore. I can't wait to feel well again. It feels like such a long time a go

  • No information on how to access prescribed medications are allowed on the open forum and it is against the Guideline No. 23 but members can send a Private Message, or the person asks for a Private Message to be sent to them.

  • Yeah. I am going to get further tests done if they are willing. :/ I will then post for everyone's opinion.

  • Arugula, Please observe posting guideline #23:

    23. Do not post advertisements, links or information of any sort whatsoever, on where or how to obtain UK prescription only medications without prescription.

  • sorry

  • Sorry

  • Sddixy, I told my endo I had been selfmedicating T3 in addition to T4. I'm still not sure whether he then prescribed it because of the improvement in my health, or to stop me buying it on the internet.

  • Everyone seems so much better. I hope they don't refuse my tests. :)

  • Yes I have told my GP I'm self medicating. He gave me a little bit of a lecture about how everyone thinks if natural is in the name (NDT) it must be better (?!) However he then accepted my reasons as to why I was doing it (prescribed medication made me worse not better)

  • I have self medicated for years. I am open with my doctor(s) and get mixed results. Last year I allowed myself to be persuaded by one rather inexperienced GP in my practice to stop the Natural thyroid (I take Thyroid-S) and its taken over a year to recover because the sudden change poleaxed my adrenals.

    But I did find one GP in the group who is happy for me to take it. He said he was happy for me that I had found a solution that worked for me, and he is happy to test to support that. With the others I simply say, 'This is what I am doing. If I smoked, or did drugs or drank in excess you wouldn't refuse me treatment or monitoring, and all I ask is that you do an occasional blood test' Its been met with mixed responses as you can imagine.

    There are some members of this board who get no support from their GP at all. In that case you are down to private testing, but I would say do it anyway if you really need to.

    I suffered severe hypo symptoms even when my TSH was relatively low (2.7 or so) and by the time it was 3.5 my career was shot and my partner and I were on the rocks. I managed to discover the late Dr Skinner and he put me on levo, but it had no effect on anything but my TSH. I still felt awful. When I tried T3 I had horrible side effects (very rare, I have never come across anyone else who reacted to it) but despite the pain I suddenly came alive. At that point the BMA suspended Dr Skinner, so I couldn't go to him for a trial of NDT. So in desperation I decided to go it alone, and its been fine, except for the fact that it got the GPs excited every so often.

    So, I was desperate enough to overcome my fears! I had nothing to lose. Maybe you could consider what is the worst that could happen if you did, and if you didn't? And the best?

  • Thank you for sharing your experience. I feel I'm going to have to make sure I know my argument when I go in. Not sure how it's going to be taken

  • If your TSH is still at six (or over 1.5 anyway) I would start by asking for levo to be raised. Your doctors should be feeling pretty embarrassed that they let you get so bad before testing your thyroid.

    And don't jump into self-medicating until you have really given the levo a decent chance. Remember that about 90% of patients do fine on it, its just that this board is populated by the other 10%. So yes, its full of self-medicators here but that doesn't mean you have to be one of the unlucky ones too!

    Wait at least 8 weeks on the highest dose that they will give you before deciding anything. Then go back and ask for all the other tests as well if they haven't yet been done - Ferritin, D, B12. When everything else is ruled out, then go back to your GP and tell them you are thinking of self-medicating because you feel so desperate.

    Getting treatment optimised is a long slow business, and you do need to be patient because there is really no short cut.

  • Yeah I'm not ready for other stuff yet but I was going to request my other bloods be taken and see how they feel about fT3 as far as I am aware I haven't been tested for that yet. Fingers crossed I am going to be one of the lucky ones. I just feel so craps right now.

    This morning I rode my horse now I'm in bed exhausted. Thinking about what rubbish I can feed my kids because I'm too tired to cook. :(

  • Isaac Asimov used to love when he could start a book with, "The Ancient Greeks"... well I love when I see Gordon Skinner's name and can join in ;-)

    Like your attitude Ruthi: its good you've found that NDT works for you! Me too, I was in the gutter... finished and with only once a TSH of 3.8, other times 2.6 or 2.8 but I'd had it! When I see some really high TSH's I wince for those people [who may not be so ill??].

    Although I'm sometimes virtually 'fixed', often 75:25 and sometimes still pretty ill [very low temps in winter is the problem], the difficulty I had was getting diagnosed... which took me to Dr Skinner. Had many a laugh and dance with Gordon Skinner and he did everything by the book: started on Levo which made me ill quite quickly, then Armour Thyroid which was great for 2 1/2 years. I didn't always agree with him but he was of the old school and treated people appropriately and humanely. I use T3 now [never prescribed by GS or any doc], with the occasional use of Armour. You are spot on: when you have nothing to lose, maybe something to gain... what choice is there?

    From what I see, it is those doctors who have used T3 and NDT themselves [quite a few really good docs] who totally get it, who understand what its about! These are hormones we are taking and if they aren't right we pretty much find out and adjust or stop/change. And no, we are not 'ill' as in on medication(s) BUT we can become quite ill when not treated with these hormones. BTW, I stopped the pill [after more than a decade] because I didn't want to take it any longer and would never have considered HRT... I take thyroid hormones because I absolutely need them and would prefer it if that was not so :-)

    Hope you don't mind me twittering on - be well and Sddixy of course :-)


  • I told my GP that I self-medicate. When she asked me why I said "I think the guidelines used by the NHS for the treatment of hypothyroidism are inadequate and sadistic." She looked slightly shocked at that, but accepted it. We've never spoken about it again. I've also said I don't want to be monitored with NHS thyroid function tests. Since I'm on T3 only, my TSH is probably zero, or very close to zero. And I can just imagine the arguments I would end up having. I just side step the whole subject by doing my own tests.

  • Our local lab tests T3 when TSH is suppressed. So I now get my free T3 tested on the NHS. But that is a recent innovation, from the last 3 years or so. Before that my GP had to beg for my T3 to be tested.

  • I'm asking for further bloods in the morning.... The ones that I have been advised on here. I'm hoping they done refuse. I guess I just need to tell them I've done some research and had some help from you guys and hope that they just go with it. :)

  • I haven't yet plunged the courage to tell him and im really scared of the reaction. but i think eventually i will have to come clear. I still get my levo prescription though to make sure they don't suspect anything i just don't get it from the pharmacy.

  • Really. Do they not call you for annual tests?

  • Each four months I think? Because my levels were all over the place. Since I'm self medicating I've had just one blood test. But it makes no difference in the outcome. They would just check if I'm in range or not. And I'm in so what could they say? As far as I'm medicated they can't tell what I take

  • I take Nutri Thyroid and my GP is aware. I originally saw Dr P and told my GP I'd consulted with him, and he is happy for me to have 6 monthly bloods as long as I go back to Dr P if there appears to be a problem.

    One thing that worries me is if I'm rushed to hospital or have an operation, and I'm essentially self medicating, ... what would happen then?!

  • Well that's good thy your doctor is is aware. Its maybe worth carrying a card in your purse with your medication wrote down. However, if the doc knows he has probably put it in your notes that you self medicate.

  • Luckily I found an endo that prescribes NDT but he keeps trying to reduce the amount I'm on. I simply refuse, I am quite capable of reducing my meds myself should I need to and refuse to fight with him over getting a raise of meds when I need it (mostly in winter when you need more). He doesn't like it that my TSH is supressed but its better for me and NO-ONE can change or reduce your meds without your permission!

  • Good for you. You obviously know your body and condition very well. I'm learning and with the help of this forum I will go to the docs feeling confident :)

  • I've been to hospital twice as an emergency since I started self-medicating. In both cases I simply told them when they asked if I was on any medication. I told them 'its the only thing that makes me half way well, so I take it' and since my illness wasn't hormonal and no endo got involved they just accepted it.

    When I had pneumonia earlier this year the junior doctor asked to see the packaging, and actually asked quite a few intelligent questions. But she didn't argue or suggest that I was wrong to take it.

    So don't worry about going into hospital!

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