Does anyone adjust their own hypothyroid medication?

I've seen on several thyroid forums that many people adjust their own medication up or down depending on symptoms.

For example, some people up their intake slightly over the winter to cope with cold etc.

How is this possible without running out of medication?

Are their doctors aware of it and give them extra to allow for this?

Just wondered why some people seem to have an extra supply of tablets.....

Thoughts or experiences?

17 Replies

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  • Your GP might not approve, but some people (my daughter included) who have not been diagnosed by their GP and have had to see a private doctor do indeed increase their medication over the winter, and their doctor actively encourages them to do this. The same applies if they have an infection e.g.cold, flu etc. They can increase this way because they buy the medication themselves. The doctor my daughter currently sees told her that she has to be her own doctor when he is not available to see her because she knows her body best. He does not rely on lab tests for diagnosis. She has never reached a state of over treatment that would cause hyper symptoms.

    Have you discussed it with your doctor?

    Jane x

  • Thanks for your reply Jane.

    I'm glad your daughter has such an understanding doctor and her treatment is working well.

    No, I haven't discussed this with my doctor yet. Early days just now I think as I have only seen him twice and don't yet know his thoughts about treatment etc.

    Although I have found him to be slightly 'unconventional' in certain aspects of treatment (not thyroid related) I am still apprehensive about him possibly 'going by the book' where thyroid treatment is concerned out of fear of getting in any trouble.

  • I'm afraid after years of illness I've taken the stance, it's my body I'll do what I want. The NHS has let me down time and time again therefore I do my best to control what I do. Yes I'm reliant on prescriptions for Levo, but I do let it build up so I can tweak the odd 25mcg here and there. I buy my own NDT. I do read up and listen to the advice on here and I do the tweaking very carefully. I'm armed with info re overmedication so I know what symptoms to look our for, I'm sure there would be no doubt anyway. I totally ignore blood test results I think to a large extent they can almost prevent you from recovering (in the hands of GP's) I'm hoping to medicate myself until I feel better.

  • I can totally understand why you feel like this.and I'm glad it's working for you.

    Can I ask, do you see a private GP or NHS and how do they feel about your medication adjustments, are you just left, grudgingly, to get on with it?

  • I'm trying so hard for anything to work! I'm seeing Dr S and he doesn't tell me off for what I'm doing! I don't want to see my gp and i will be avoiding all blood tests in the future.

    It's easy to build up meds just order early each time to give you a bit to play around with. My previous gp who i had good rapport with i was able to say i'd upped by 25mcg without a problem.

  • I just read your blog. Good on you for having the courage to go ahead with the letter etc. to your GP.

    I really hope you have a good outcome with everything, I've got my fingers crossed for you.

    What happened with your previous GP? He sounds like he was pretty reasonable.

  • Thank you, more to come on that one I think!

    My former gp retired a couple of months before I moved house. I've moved 45 miles away so a new practice. They seem to be in the Dark Ages here re anything to do with thyroid!

  • I was of the understanding that some labs refuse blood tests presented sooner than 6 - 8 weeks? Or perhaps it just depends on the lab / where you are in the country?

  • I do the whole finding my level myself! My gp takes no part in any of it! Lol

  • Can you elaborate on this a bit sporty?

    Do you and your GP have an arrangement where you have control your dosage?

  • Well it was as simple as me asking for such and such medication and him giving it to me! That was it. Think it said 2 to 3 grains as day on the bottle....

  • Thanks sporty.

    I'm guessing that your GP isn't NHS then. That explains a lot.

  • No he is!! Lol great in one way, I can get T3 and NDT but on the other hand there's no real guidance. They all seem to think take the drugs and that's it, all will be well!

  • Wow, that's amazing! You're very lucky.

    Did he prescribe T3 and NDT willingly, or did you have to fight for them?

    Do you also see an Endo?

    Sorry for all the questions.

  • No fight what so ever! I asked if I can try both and without answering me, set about writing the prescription! Strange I know lol

    I have never seen an endo no. I am under dr P privately though. My gp seemed to think we can do this ourselves lol

  • Yes I tweak my medication mostly by just 25 every so often. I know the signs by now and am damned if I am going to have blood tests every five minutes when just for the sake of putting my meds up or down 25 will sort me out. My doctor is good...well he's either good or terrified of me I haven't worked that out yet. He knows NEVER to say normal to me:) I'm just lucky I suppose as if I had the type of doctor I hear about on this site I would not be able to contain myself and there would be deep trouble. I have changed my doctor and it was the best thing I ever did. You wouldn't put up with a mechanic that messed your car up so why put up with a doctor who messes your body up! Simples!

  • Yes but this is with docs agreement but before the doctor agreed i also did it, i just asked for a repeat prescription when i ran out of tablets,it has been questioned by the surgery but i just told them i ran out which is the truth and they still gave me it.

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