Feeling rough again!

So as many of you predicted my initial feelings of improvement upon starting a low dose of Levo are disappearing.

I probably don't feel quite so tired but the aches and pains are still there along with the other symptoms.

I was feeling optimistic as for the first time in years I had my monthly period and I didn't have to take any pain relief it was also much lighter and I definitely felt an increase in energy, less tired etc but now I'm pretty much back to square one.

I guess at least I can argue the case that i did start to feel better so obviously the Levo had some effect.

I suspect this is where I might start to hit a brick wall with my GP so I've done a bit of research and there is a clinic local to me in Winchester called the The Natural Practice and they prescribe NDT, they also have appointments in one week and do all the relevant blood tests etc so if my GP doesn't support me then think I'll go there.

It's so disappointing to feel that you might be improving then go back to square one again, although I know my dose was tiny I guess I shouldn't expect it to do much!

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  • Poor you. Your TSH is probably falling, so you are not producing as much T4, but it is not being replaced because you are on such a tiny dose of Levo. It looks from your previous post that you have been taking it for about three weeks, so you would have to wait another three weeks to be tested so the dose can be increased. But there's not guarantee your doctor would do that, is there? Or, you could increase the dose to 50 yourself and see what happens. The Natural Practice sounds like a good idea, if you don't want to self medicate and they do all the tests (make sure they include T3, folate, ferritin, B12 and D3, plus TPO and IG antibodies, if you haven't already had them done). At least you'll be getting somewhere quicker than waiting to see if your doctor will increase the Levo. As you said in a previous post, you are not prepared to carrying on feeling rubbish. It's a scandal we have to spend our own money to get well, because the NHS won't treat us properly. Let us know how you get on.

  • Other experienced members will be along to give advice on going the NDT route. But, knowing that you had a sympathetic and supportive GP, in your shoes, I would give it a try and perhaps get an appointment and bloods at the 6 week rather than nearer the 8 and go with a positive (hard when starting to feel rough again) approach that you felt better but you'd like to try an increase especially since 25 is a tiny starting dose. If you can do private tests at same time so you get FT3 too, that's going to be helpful if you need to press your point.

    I had the same improvement with periods and it has only got better - it's the first time in years thst I've not had to take heavy duty pain relief and it does feel better.

    Whichever way you go, I hope you get continued support so you can get well 😊🤗

  • Munchlet I'm a believer in going with your instinct too, which might be the private pathway for you. Do what feels right 😊

  • Hi Munchlet. I sympathise with you. Thank you for mentioning the Natural Practice. I see there is one near me. Have you any idea of the cost etc?

    Foreversummer

  • Hi Foreversummer they quoted me £150 and I think that's an hour appt, obviously any prescriptions on top but they work with integrated Dr's it says they are qualified GP's but they prefer to use natural products and work with your GP so I quite liked the sound of that, they recommended a Dr Willis to me and said I could see him in a week. Their website is quite good and if you have any questions they have a contact form on their which is what I used and they will get back to you.

  • That is usual i.e. begin levo on a particular dose then a few weeks later not so good. So increases of 25mcg levo every six to eight weeks until you are symptom-free is the ideal until we reach an optimum dose (optimum means we feel well with no symptoms). Unfortunately some doctors stop increasing when TSH is 'in range' but we need a TSH to be 1 or lower.

    You have to allow a reasonable time to gradually increase levo.

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