stopped my levo now joint pain all gone

Hi I know I've done the unthinkable and stopped taking my levo completely.

The background to this is that 25 yrs ago I was feeling really tired and went to my Dr for a 'pick me up?'

I should also say that at the time I was working full time running two businesses, working full time as a teacher and also bringing up a family. The Dr said I was hypothyroid (had never heard of it) prescribed 100 Levo which was quite quickly upped to 150 and told me I would be on it for life. - Which I have been with weight gain being my only side effect (I thought).

But in recent years I have read up on this a bit mainly because of severe joint pain - for the last 5 years I've been backwards and forwards to Doctors and Hospitals for this, I've had X rays, physio, examinations,referrals, blood test after blood test and painkillers but it reached the stage last year where it was affecting my life so badly I could no longer walk round a shopping centre, get down on my knees or even get out of a chair without walking like a zombie and I now work from home . The final diagnosis was that my symptoms were probably related to osteoarthritis and could be age related (I'm 62 now) but I felt they were just trying to give me some label to put an end to it.

THEN I read that joint pain was sometimes a side effect of taking Levo so I thought supposing all those years ago I actually was just tired because of a busy period in my life and that I didn't really need extra T4

at all.

So 10 weeks ago I stopped my Levo as an experiment and after 2 weeks my joint pain had gone as if by magic. Now I can go out walking again and get down on my knees with grandchildren, buy proper shoes etc. My life has completely changed and I am so thankful but I have also read that it takes 8 weeks for the T4 to be out of your system so I needed to see what else would happen.

Apart from weight gain of 5kg since I stopped (we have had Christmas during that time and I am doing nothing to actively lose weight)Nothing else until the last couple of days when I have noticed a sore throat and my face is beginning to look a bit puffy although I do have to say I'm surrounded by viruses and tonsilitis at the moment.

I should say that my Dr doesn't know I have stopped taking my meds. I never do see the same Dr anyway but on the occasions when I have asked if there is a link and the possibility of changing some of my T4 to T3 that has been immediately dismissed as not being prescribed in the UK and I don't need it.

I know how much better my life is now without the joint pain but I'm also not daft so I know that if I need T3 then I should be getting it from somewhere, so if it is the Levo making me ill then do I just buy some amour now and try that or perhaps 50 levo and add in T3?

Sorry about the essay but any advice would he helpful as I really, really don't want to go back to how I was. Also if anyone could advise me on a safe place to buy my own amour that would be great.

17 Replies

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  • If you buy Armour, it already contains T3.. As Armour (1 grain) is equal in effect to around 100mcg of levo you could just switch over to 1.5 grain and then if after 2 weeks you feel you need an increase go up by 1/4 gr at a time every two weeks. Drop down increased dose if you begin to feel it's too much. (As you've already stopped levo for a few weeks maybe just start at 1 grain).

    I agree about pain with levothyroxine. It also happens when you're not at an optimum of thyroid hormones too or undiagnosed.

    If you decide to go levo/T3, drop to 100mcg levo and add 1/2 tablet of 25mcg T3 combined it is roughly 150mcg levo.

    ]b]"I am not a medical professional and this information is not intended to be a substitute for medical guidance from your own doctor. Please check with your personal physician before applying any of these suggestions"

  • Thank you for that it's really helpful I just need to find somewhere reputable to buy it from

  • asdf75, Do you have thyroid results and ranges (figures in brackets after results) you can post from when you were taking 150mcg Levothyroxine?

    Rapidweight gain and now your face is becoming puffy which suggests you have become very hypothyroid. You should ask for a thyroid test. If you don't want to see your GP you can order private thyroid tests from Blue Horizon and Genova via thyroiduk.org.uk/tuk/testin...

    I had joint/muscle pain and a lot of other adverse symptoms which cleared after I stopped Levothyroxine. Since then I'm fine on Levothyroxine plus T3 which calms the adverse effects Levothyroxine only caused. My T3 is prescribed on NHS. Some CCGs will only allow prescription of T3 if recommended by an endo, and others have banned prescribing of T3, but it can be bought online without prescription.

    _______________________________________________________________________________

    I am not a medical professional and this information is not intended to be a substitute for medical guidance from your own doctor. Please check with your personal physician before applying any of these suggestions.

  • Yes thank you I need to source a supply of T3 now. I'm not due another blood test for about 3 months and didn't get much response at my surgery when trying to get a copy of my last results but I'll look at doing my blood tests privately and post them on here.

    I'm one of those people who can put on a lot of weight really quickly and then lose it quickly when I'm dieting so I'm not unduly worried about 5kg in 2 months as I haven't even tried to lose that yet. I wanted to see what difference it made to my body by just not taking the levo. I know one thing for certain - I'd rather choose to be fat and have no joint pains anyday.

    Thanks for your help

  • Asdf75, Ask your GP receptionist or practice manager for a printout of your recent results. The Data Protection Act entitles patients to their results and if you request them within 40 days of testing there should be no charge other than a nominal £1-2 charge for paper and printer ink. If necessary make a written subject access request.

    ico.org.uk/for_the_public/t...

    If weight gain was the only adverse effect of hypothyroidism you might choose not to medicate but there can be serious health implications including damage to major organs in long term unmedicated hypothyroidism.

    ____________________________________________________________________

    I am not a medical professional and this information is not intended to be a substitute for medical guidance from your own doctor. Please check with your personal physician before applying any of these suggestions.

  • yes I intend to go back and ask again this week. I'll post them on here if I can get hold of them. And yes I do understand what you're saying about long term damage I just really wanted to try something else rather than just keep taking the T4 I wanted to see if I'd ever really needed it in the first place. But I've also read that if you take T4 long term then your tyroid will eventually stop producing it anyway. The trouble is that I think I've over read the subject now and I'm trying to sort fact from fiction.

  • Asdf75, 150mcg is a substantial dose. I think you would have felt overmedicated, and your biochemistry would have shown overmedication, if you weren't hypothyroid and required replacement.

    Your thyroid will stop/reduce production when you are taking 150mcg Levothyroxine. It should resume production, if it is capable of producing hormone, when you stop replacement. After 10 weeks you won't have Levothyroxine in your system. If TSH is high and FT4 and FT3 low you need replacement. You'll have to experiment to see whether T4+T3, T3 only, or NDT is better for you if you need replacement,

    ___________________________________________________________

    I am not a medical professional and this information is not intended to be a substitute for medical guidance from your own doctor. Please check with your personal physician before applying any of these suggestions.

  • Hi yes my thoughts exactly can't really believe that I just kept taking that dose for all those years without ever questioning it just because many years ago a doctor told me to. Should have looked into this a long time ago. Incidentally my sister is on 225 a day and her weight has almost doubled and my daughter has also been on 150 for quite a few years is really struggling with weight gain and horrible side effects and is getting more and more poorly each year so I would love to find answers for all of us. I never wanted to be a Doctor but now I wish someone in te family was!

  • Asdf75, surely you've had thyroid function tests? They would have indicated the dose you needed.

  • I think you mean the normal blood tests which I've had routinely through the years but with no feedback other than initially when I was increased to 150. Quite honestly I was quite happy and accepting of that it is only recently that I've started questioning my symptoms and side effects and wondering if there is a better way.

  • Asdf75, TSH will determine whether you need thyroid replacement. FT4 and FT3 will determine whether the dose is optimal. The Data Protection Act entitles patients to their test results. Results requested within 40 days of testing should be free of charge other than a nominal £1-2 which may be charged to cover paper and printer ink costs. If you want older records you can buy a copy your entire manual and electronic GP records for £50.

    If you have adverse effects on Levothyroxine, it is worth trying Levothyroxine plus T3, T3 only or NDT. Unfortunately NHS has a firm bias towards Levothyroxine replacement and won't always prescribe alternatives which is why so many are buying online and self medicating.

    ________________________________________

    I am not a medical professional and this information is not intended to be a substitute for medical guidance from your own doctor. Please check with your personal physician before applying any of these suggestions.

  • Thank you I have ordered NDT and I'll be off to the surgery again this week to ask again for a copy of my last blood test.

  • I just wanted to point out that Armour is a brand name of NDT (Natural Dessicated Thyroid), it's currently the most expensive NDT in the world, and thankfully it does have some competition.

    I can never remember all the different names of NDT there are, but here are some of them : Nature-throid, Erfa, Westhroid, NP Thyroid, Thyroid-S and Thiroyd (funny spelling is deliberate).

    The cheapest one is Thiroyd, followed by Thyroid-S. Both of these are from Thailand. The others I mentioned are from USA or Canada (I think - I could be wrong). I don't know anything about the prices of the others but I'm pretty sure they are much more expensive than the two I've mentioned.

  • Thanks for that I am a bit worried about buying medicines abroad so I'm trying to find other people who have been buying it overseas with no problems

  • Hi! I stopped Levo (my doc doesn't know either!) last October and replaced it with Thiroyd which is made in Thailand. I was worried it would be dodgy but I have no problems to report three months on. I am now on 3 grains daily but still need to find the dose that's best for me. It's a slow process but good luck on your journey, whatever you decide.

  • Thanks Michelle and good luck to you too.

  • asdf75 - I am on 100mcg of Levo and 75mcg alternate days.

    I recently found out I have a faulty DIO2 gene which means I don't efficiently convert T4 to T3. While I wait for an appointment with an Endo (hopefully to prescribe some T3) I have begun to suffer joint swelling and pain and have been diagnosed with Osteoarthritis like you. I suspect I may have too much rT3.

    I have noticed a few forum members mention Osteoarthritis and I am beginning to wonder whether it's just a coincidence or whether it is thyroid related. I am 60 years old.

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