Thinking of self medicating any advice for dealing with Dr's?


I was diagnosed with Hypothyroidism in May of last year. I am now on 175mcg of Levo and my blood results are as follows -

TSH 0.01 (Range 0.3 - 5), FT4 15.8 (Range 9-21) , TT3 1.6 (0.9-2.5) (Lab won't test for Free T3)

I am still feeling terrible and I am thinking of self medicating. I am seeing Endo this week and am going to ask for Levo increase or T3 but I don't think I am going to be successful with either request due to low TSH levels and a lack of willingness from him to prescribe T3.

So, I am thinking of increasing my Levo myself - has anyone done this, is it easy to get?

Or, adding in T3 (someone has already helpfully told me where I can source this, although all suggestions are gratefully received in case there is a problem with that source at any point or whatever).

My question is, do I tell my Dr's I am doing this? I if I don't they will see a reduction in my TSH on my next bloods and decrease my Levo (which I would then compensate for, and this would continue until they weren't willing to prescribe me any Levo I imagine). Pretty sure they would figure it out.

So, what do Dr's do if you tell them you are going to self medicate? Hearing anyone's experiences would be really helpful.

Thanks for reading.

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20 Replies

  • Kittenmittens, there's no way to determine how a doctor will react. Most doctors will advise you not to self medicate if you say you are considering it. Some will agree to continue monitoring you when you self medicate even if they won't prescribe T3 or NDT, while others will refuse to treat you unless you follow their treatment regime.

    I'd been self-medicating 6 months and when I knew it was working for me I told my endo. We had a heated debate about the benefits of T3 with me saying how much better I felt on T4+T3 and him saying there was a lack of good evidence to support T4+T3. Nevertheless he agreed my health was vastly improved and has been prescribing T4+T3 since then.

  • The short answer to your question is that your doctor will have ten thousand fits. They are so fixated on TSH that nothing else has any meaning.

    Given that you have lowered your dose it would not be unreasonable to retest, and to test for free T3. But to be honest, you need to wait at least 8 weeks, and by then it will be almost May anyway. Certainly you won't be able to fiddle with your dose again before you see the endo.

    I don't know how easy it is to obtain T4 without a scrip,if its possible I am sure someone will send you a private message. You already know about T3, and you could also consider NDT. Its very much horses for courses, and you just have to keep trying different things till you find something that works.

    I tell my doctor(s) that I self medicate. They hate it, of course, but its my right to kill myself whichever way I like - as I point out to them. I then say that I would like their support because its not as if I am doing this out of perversity, and so far not one has refused to treat me. But they have limited access to, and understanding of, the tests, so there is only so much they can do even if willing.

    Beware what will happen a year or two down the line when a new doctor comes along. They will tell you that you don't need the medication and do their best to persuade you to stop. I did, and nearly two years later I have still not recovered from 8 weeks on thyroxine only. My serum free T4 was lovely, and my free T3 non-existent on it. That sent me into adrenal overdrive, and my cortisol is still stupidly high all the time. If you find something that works, don't let anyone talk you out of it!

    At least you are seeing an endo. In 15 years no-one has thought to refer me to one.

    The other thing you need to do is to make sure that your other levels are good. Iron is critical and your ferritin (stored iron) needs to be at least mid range. Vitamin D (D3) and Vitamin B12 are also essential to proper thyroid working, and utilisation of thyroxine.

  • Its vital that you get tested




    Vit d3

    Because if they are not all halfway in their ranges your body cannot correctly convert t4 into t3 and that may well be why you are still not well

    If your going to self treat use NDT its likely to give better results

  • My Endo said he would worry if my TSH went below 0.10 as I would be thyrotoxic.

    Your TSH is well below that so I wouldn't have thought you need more T4 Levo ....surely that would make it worse.

    I would have thought you need an FT3 test to see what your T4 is doing as your FT4 is good.( which is available for converting)

    It may be that you need some T3 added to help if you are not converting well.

    How can they make an accurate diagnosis if they don't get the full picture?

    I think you would have to find an Endo who is in favour of FT3 testing.If the Endo recommends some T3 and gives you a prescription to start you,then perhaps your doctor will be willing to carry on with a repeat prescription for you.

  • I changed to NDT about 5 years ago and never mentioned it. The doc continued to test my thyroid every year and there was no great difference in tsh, free t4. ( it went down a bit) and free t3. So the doc never noticed.

    Have now moved docs with the intention of asking for the NDT i am now taking, but the reality is, i havent bothered to mention thyroid at all in 8 months.... So unless she reads my notes she wont know i am hypothyroid.

    I know this doesnt your question about what to say to the doctor but it's perfectly possible to have all the tests and for them to never spot any difference

    Xx g

  • i certainly would get t3, not t4 meds. They need to be converted and are not thae active hormone, but a prohormone.

  • Hi,

    I told my GP I was going to try NDT, & he expressed concern that I'd be wasting money on "snake oil". I explained it was what was used prior to synthetic T3 & T4, & I thought I should have printed some articles off, so he could read up on what & why.

    Six months later, he had to agree it worked, & said he was happy I was feeling better.

    My previous GP rolled his eyes at everything a bit different, & pushed anti-depressants, so would have been scathing.

    My endocrinologist appointment is due soon. I think that's going to be the awkward one.


  • The important person is You! What is good is that you are feeling well.

    Some Endos are well informed ......may be yours will be too. Hope the appointment goes well.

  • My GP tried her utmost to talk me out of it. Really shook my confidence. I then had to tell my oncologist and was dreading it. After I'd explained it all, my oncology asked if I was medically qualified since I seemed to know more about thyroid meds than her. In the end, she just said I seemed to know what I was doing and wished me luck.

    Different doctors, different days. Remember that you're telling them, not asking their permission.

  • May also be worth investigating food sensitivities:

  • Dont tell them your self medicating and go ahead. Use your clinical symptoms as your guide to getting better not blood tests as they are fundamentally flawed and a waste of time. stop taking your meds a few days before having blood tests as they will panic if your not in their range.

    Look at all other ways of returning to good health, reference Dr Sarah Myhill's website.

  • I don't know where would I be now if I didn't start self medicating years ago. But I realized that there was no way I could have any sort of "relationship" with my doctor after that. But it was a small price to pay considering that I feel like a completely healthy person now and while I was dealing with doctors I was a wrack and my life was falling apart.

  • I am on a prescription given by an endo who won't raise it not because of problems but because its expensive, I am taking NDT my first bit of advice would be NOT to take any thyroxine before a blood test and ignore the doctor if you feel well!

  • My GP has said that he thinks I might do myself long term damage by self medicating but has shown in various ways that he knows little about thyroids issues so I havent taken much notice. He has agreed to do blood tests and there has been no conflict or arguements just an acceptance by the doctor that I am taking NDT. My doctor is a kind gentle person who does not force his views on people. I have change surgery and looked for a gentle doctor in the new surgery. I felt it was important to keep them informed. It was not as bad telling them as I thought it might be. I think as long as they dont have to prescribe it they are OK about it.

  • I started a similar thread a few months ago about whether to tell my doctor I'm on NDT, you can see it from my profile page if you want to read more.

    My conclusion was that I'd wait until I'm confident I want to stay on this dose before talking to them, so that I'm in a position to say 'you left me sick for 3 years and now I'm better'. It sounded far too sticky to have the intermediate discussion about wanting to try something and it needing more adjustment.

    I agree with others, what you will likely want to do is decrease T4 and add in T3, so you should end up on a similar total amount of medication. Your doctors won't be skilled enough at reading the tests to tell the difference. You might want to do your own fT3 test before you start, you can get them from BlueHorizon, through the ThyroidUK website for around £70.

  • I now self medicate with NDT as Doctor was concerned about upping my last dose and had to ask higher up in rank if it was OK or not. I started to get tearful and Doctor referred to me being depressed, I (quietly) shouted back I was NOT depressed only upset because if he did not up my Levo I would never get well again. I did manage to get it upped, but when I went back downhill again I knew I needed another increase, I knew then it would be a bigger fight which I did not want. I feel far better being in control.

    *Only YOU know how ill YOU feel, so only YOU know how much medication YOU need.

    I have not told my Doctor about taking NTD and never went back for a review of my bloods after I was not allowed my blood result printout before visiting the Doctor.

    (worried my bloods would look different.)

    Also my Mum in her late 70's was not given enough Levo, (her blood tests proved it,) 75 Levo was not enough for her, she too had gone down hill, so she now has a top up of NDT along with her prescribed Levo. I asked her Doctor maybe it is her thyroid ?

    Dr. said 'NO it is NOT her Thyroid.' What can you do when you know that it is. ?

    Mum perked up a day after starting her NDT.

    Mum's Doctor does not know she is on NDT either.

  • My mums doctor thought a tsh of more than 30 was ok for my mum..... The doc doesnt know about her raised antibodies because she has never bothered to check..... ( Mum is fine, - she self treats with ndt)

  • :O

    That is shocking to have a TSH of 30 and her Doctor not knowing something was wrong, galathea.

    Pleased to hear your mum is on the NDT and feeling 'fine'

    Such a crazy world we live in when we have to self diagnose and self treat ourselves and sometimes our family members too.

  • You definitely don't want additional t4 it's not working is it, throwing more at it won't work. I also don't think your bloods will go much lower on tsh, I'm on 87mcg of t3 and my tsh is the same as yours.

    I also self medicated - once the new surgery took away what I'd been on for thirteen years- and found what helps - I have m.e so there is a limit to what helps- I tried NDT but that didn't suit me because my body was turning all the t4 into reverse t3, so I ended up going t3 only.

    I moved gps and informed her I was self medicating then got referred to endo who I informed again and he prescribed it and even offered me NDT despite health board being unhappy and the gps surgery hate the cost of my t3.

    So a) you need to find out why things aren't working and that may mean other things like iron etc or it may mean you get a private full panel done including rt3 to see what is going on. Then b) you need to work out what suits you. If you don't find reverse t3 problems I would be thinking of trying NDT it just suits some people better, or dropping t4 and then slowing adding in some t3 is a cheaper option. If you are an rt3 problem person you may need to go t3 only.

    This all needs to be explored slowly and with patience there aren't short cuts. Then hopefully you will find what makes you feel well. It's at this point you inform your GP of your choice and be prepared to pay for it yourself if they or an endo aren't prepared to prescribe.

    Good luck and hope this helps.

  • I told my doctor that I would treat my own thyroid. She asked why I would do that. I said that I thought NHS treatment of hypothyroidism was inadequate and sadistic. She looked a bit startled but made no further comment.

    The subject of my thyroid has never come up since. (I pay for my own testing.)

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