Dr ringing today, worried I'll get my words jumbled!

So my original GP is ringing me today and I plan to tell him that it's my intention to self treat my thyroid.

I'm getting in a panic about what to say, I'm worried I'll just end up getting jumbled up with my words.

I was thinking about saying that whilst I appreciate that my levels aren't quite "outside" the acceptable NHS ranges I've been reading up a lot on the thyroid and how the ranges don't suit everyone. I also thought I'd list my symptoms over the years and how they are increasing and the NHS hasn't managed to resolve any of them but just prescribed more and more meds to mask the problems!

I was also going to say that my plan is to try Levo for a few months on the lowest dose to see if I felt any improvement.

Does that sound ok and is there anything else I should add in?

Obviously it would be easier if he would just agree to a trial of Levo but not sure he will!

Thanks

25 Replies

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  • Hi Munchlet, sounds very reasonable to me, but I'm not a doctor. You could mention that NICE guidelines suggest that a trial of Levothyroxine is recommended when someone has hypothyroid symptoms, but is within the so-called 'normal' range. Then ask for a trial. I am always wary about telling my doctor I have been reading up on stuff. Doctors hate to think we are more intelligent or up-to-date than they are.

    If I am panicking about talking to someone, I imagine talking to them as they are sitting on a toilet. It helps me.

    Good luck and let us know how you get on.

  • It might be easier to say you are now a member of Healthunlocked Thyroiduk.org.uk and have asked some questions and you are expecting responses quite soon and you will contact him when you have. He must know you feel awful.

    In the UK we are diagnosed if TSH is 10. In other parts of the world it would be if the TSH reached 3+. Some doctors do prescribe if you are just over the top of the range. The fact that they don't take into account our clinical symptoms (which all doctors knew and diagnosed upon and prescribed) nowadays and understand that the TSH alone is the criteria whilst ignoring crippling symptoms.

    You will get advice from members who've been in the same boat as yourself and if you send him copies of the links (not too many) then you can say that you are now going to self medicate as you have many symptoms.

    We can feel quite ill with the clinical symptoms even if our bloods are 'in range' .

  • Munchlet,

    Why are you telling your GP? You won't get his/her approval to self medicate. Why not do it and see whether it works for you and then tell your GP?

  • Totally agree with that! Can't see the point in telling him.

  • It sounds silly but I kind of want it noted, not actually sure why or what it will do but in a way I think I want them to know I'm not prepared to just sit waiting to fall out of their precious ranges and I'm taking matters into my own hands.

  • You could also 'note' your new regime by keeping a diary of how you go on when you start to self-medicate.

    You sound very organised. You have written down what you want to say (and can add the good suggestions from here).

    Don't get sidetracked is all I would add. You'll only have his attention for a short time. You don't want to spend it defending why you're doing this (you can write him a letter telling him that, if he doesn't already have your views, when you send him the links).

  • I told my GP of my intention to self-medicate. He suggested I'd be wasting money on snake oil, but had to agree it worked, when he saw me with no fleece, coat & scarf in July. He was then supportive when I anticipated issues with my endocrinologist, who was a scathing about NDT & T3 as most.

  • I understand why you want your doctors support as I was scared to self medicate and really wanted both my GP's and Endo's support and supervision. I knew my GP wanted to help but he couldn't as it was "too specialist" but he did get me an urgent appt with my Endo who agreed to help me self medicate - medication I had already bought and was going to take either way. So haven't they got a duty of care to look after us?

    Maybe I've been lucky but if you don't ask for their help then you'll never know. Good luck

  • MissFG,

    Duty of care would be to advise patients not to self medicate. Why should a doctor supervise treatment s/he hasn't approved or prescribed?

  • True but mine did and surely it's better to supervise me if I'm going to do it anyway?

    He knew I wasn't converting and needed T3 but was obviously unable to prescribe due to cost so technically he did approve just hasn't prescribed it to me on the NHS

  • Well, quite apart from the fact that there's absolutely no point in telling him any of that, I have to say that trying the lowest dose of levo for a few months is unlikely to help anything. You should at least start with 50 mcg (lowest is 25 mcg, and likely to make you feel worse than you were before), and increase by 25 mcg after 6 weeks. Taking 25 mcg for several months is definitely going to make you feel bad, and he will then be able to say : you see, it wasn't your thyroid! Shooting yourself in the foot, my dear!

  • Umm never thought of that greygoose!

  • Ahhhhhhhh well, there you are, then. You have to think these things through to their conclusion. :)

  • Hey munchlet. Good luck today, whatever you decide to do.

    In your shoes, especially if you feel that your GP may get defensive, I'd be as consultative as possible and not present your GP with a fait accompli. Think of the things s/he might say in order to refute your assertion that you need to/have a right to self treat, write them down and come up with a rebuttal. As shaws suggests, you are fine to mention HU TUK as it is linked on the NHS patient website nhs.uk/conditions/Thyroid-u... about half way down on the right hand side. It would hardly be there if the nhs had any problem with it.

    Remember you have no need to feel in a panic. You are in control, with the means to self medicate in any event. Bringing your GP with you will simply make the journey easier.

  • I was prescribed Levo from my GP and felt terrible, I sought a private Endo who prescribed Nutri adrenal and Nutri Thyroid ( now out of stock in the whole of the U.K., ) and I have been fine. I had the conversation with my GP about self medicating and asked for his support by arranging for quarterly blood test to monitor. He agreed and does show an interest... It's important you still have that connection with him.

  • Thank you so much guys, I've written myself some notes, mainly noting how my TSH is slowly rising over the years and the FT4 dropping to the point it's only just in range. I've also listed my symptoms and the fact that they've never found an explanation for them or managed to resolve them with treatments.

    I'm also going to say I've been researching on Thyroid UK and found that with a lot of people they need their ranges to be adjusted to feel well and taking all of this into account and the fact that I have a history of thyroid disease on both sides of my family and my thyroid is enlarged with nodules I've decided to self medicate

    I was going to finish buy saying that I understand if he can't in any way endorse or support this but obviously if he does in any way feel he can help me, ie doing blood tests to check levels regularly or maybe even offer a trial of Levo then that would be great if not then fair enough I'm just keeping him the picture.

  • "a lot of people they need their ranges to be adjusted to feel well"

    Don't you mean 'their doses adjusted'? Best to use the right vocabulary if you want to be taken seriously. But, that's pretty obvious, anyway. It's very rare for a starter dose to be adequate for anybody.

  • Yes I did mean meds, I just want him to realise that I may well be feeling awful because I'm only just in range and as I never had my thyroid tested when I was well, it may be that in order for me to feel normal I need the levels to be a lot further up in the range rather than just inside. Does that make sense?

  • Yes, perfectly. :) It's not just being in-range that counts, but where in the range you fall.

  • Are you sure you've marked all the symptoms :)

    thyroiduk.org.uk/tuk/about_...

  • Thanks Shaws, I had previously but forgot about that checklist, that will make it a lot easier as I'd forgotten about ones like swollen scalloped tongue and the tinnitus!!

  • The doctor might be hard-pressed to know two symptoms. :)

  • I'd ask the question but go in with the presumption he's going to say no to the levo. I would definitely give him the chance though. Have you thought of trying the over the counter non hormonal Nutri thyroid or (is it) Thyro gold? I had great success for low level hypo. They may be more supportive of you trying that.

  • I had the same thing. But i was then self medicating so i went in armed with blood results and a copy of STTM and the Riddle of ILLlness book which i kindly gave to her.she did not say much except my TSH was very low and she was concerned about osteoporosis and heart and was going to review my bloods in 3 months and refer me to an endo.

  • There is just a small possibility that it may not be Levo that you need. l had to make a strop with GP before Xmas as l knew lwasnt believed (and had been treated for years by amazing Healer who died 4 years ago - gone steadily downhill without help and failing fast) and asked her to give me Levo. She said she cdnt and l have recently seen a lovely young and open minded Endo. The first time l saw her - with a typed list of all my symtoms over many decades - she said l suspect you have low Cortisol - which is the case. l had decades of 'just borderline' and wish l had kicked up eons and 6/7 GPs ago. lve always been vastly over-tired, irritable and had the most hideous PMT++. The point of all this is that the Cortisol issue does not show up in the ordinary Throid test. That is why l never got anywhere for 40 years. l had never even heard of this problem affecting Adrenals and relation with Pituitary etc

    Also be aware that different Labs have different limits for the thyroid results - doc told me. l was always on bottm figure or below but nothing ever occurred to them. l would firmly rehearse in your mind what you want to say and at same time 'picture' the scene and a postiive outcome and resolve determinedly you are going to get an answer. Thats what l had to do. Dont forget you are entitled also to Second Opinion.

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