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Adjusting to new dose of levothyroxine

Posted , 20 users are following.

scriv
scriv

I have also just had my thyroxine dose increased from 100 to 125 mcg following a TSH test result of 31. I have been on thyroxine for 16 years and on 100mcg for several years and always felt balanced until recently.

I always knew that it took a while before the new dose had a good effect, but I am quite surprised that after 10 days I am actually feeling worse i.e. more hypo symptoms than normal.

I was therefore quite relieved to read a post on here saying they had experienced worse symptoms before feeling better...

Reassurance would be lovely from anyone else as I plod on hoping to get back to my former self.

1 like, 34 replies

34 Replies

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  • Guest
    Guest

    Posted

    Hi there, I am in the same boat by the sounds of things, and I sympathise with you totally. My raised TSH was a bit higher than yours and I am on 100mg at the moment but feel lousy. I feel so so tired and weak, and I don't feel as though I am picking up at all yet. In fact I am able to do less than I could last week during the day. Also my appetite is quite poor. I would love to know how long it takes to get a bit more like normal?? Hope you feel better soon smile
  • scriv
    scriv

    Posted

    I think it does take quite a while, remembering to previous occasions.

    My understanding is that the T4 we take as levothyroxine takes a few days to get converted to T3 which the body can use. Then all the cells dip in and take what they need....and then start to work the changes within themselves.

    A cell apparently needs about 6 weeks to before changes effective..so perhaps only then will we start to notice the knock on effect of that.

    I expect that's why they tell us to wait for 8 weeks before another test or assessment.

    It's a slow process, but we will get there!!! :D

  • Guest
    Guest

    Posted

    Hi

    Is your TSH really 31.1 ? doesn't sound quite right as that's very high considering you are on 125 of Levo, for most Hypo people a TSH of 1 or under is needed to feel well.

    I am on 150 and have a TSH of 0.08 which is about right for me.

    Check Thyroid Forums for info.

    • Jeannie63
      Jeannie63 Guest

      Posted

      I just had bloodwork done and my number was 34. It is very possible. They changed my dose and I go back in 6 weeks to see what it reads.
  • Guest
    Guest

    Posted

    Thanks for your info scriv. I hadn't realised about the T3 and T4 process. No wonder it takes a while! :roll:
  • scriv
    scriv

    Posted

    Yes, quite sure about TSH being 31.0, Guest... which was the very reason why the doctor upped the dosage from 100 to 125.

    I have been taking T4 now for 15+ years and have a yearly check-up. The TSH of 31 was thrown up on this annual check.

    After 8 weeks on 125 I had another test and now the TSH has gone down to 0.33..... however, this is now bordering on the hyperactive with some associated unpleasant symptoms.

    Changing dosage is never easy!

  • vanguard
    vanguard

    Posted

    It allways takes me about 6-8 weeks for my body to settle down, after re-starting l*thyroxine. I hate it!!.
  • scriv
    scriv

    Posted

    Me too.

    My earlier posts were over 3 years ago and so much has gone under the bridge thyroxine wise. I had been taking some dodgy levothyroxine which has now been withdrawn from the market which most probably explained strange test results back then.

    Anyway, all got sorted eventually and since last May I have been on a constant dosage of 100 mcg and am generally fine and balanced, but it took ages to settle.

    Got there though.

  • vanguard
    vanguard

    Posted

    Hi scriv, thanks thats re-assuring.

    I'm just over two weeks into my restart.

    It just seems strange that every time I have

    to restart, I get new things as well as the old ones

    It would help if my doctors were more helpfull

    rather than just giving me sleeping pills.

  • scriv
    scriv

    Posted

    I agree, your doctor's support is so important. My GP is marvelous with me and very supportive with all the ups and downs. She will never change a dose without a blood test but always looks at the bigger picture and how I feel. Can you home in on a doctor within your practice who you feel understands your issues and always see him/her?
  • vanguard
    vanguard

    Posted

    There are other gp's there. I will try another,

    they dont like patients flipping from one to another.

    But I guess thst's tough.

  • terese
    terese

    Posted

    Hello, just responding to the query about taking 100 or 125 mcgm alternate days - I was changed to this regime about 18 months ago as I was somewhat overmedicated according to doctor. My most recent test was found to be 'spot on'. Did not find this regime a problem, though had missed a couple of days in prior month. Have been taking levo... about nine years now. Then I had never considered the constant almost overwhelming tiredness and feeling down was due to a medical problem, just overwork and a recent bereavement! It was eventually picked up through a routine medical check I had asked for. Learned a lesson about not taking symptoms seriously. Hope this helps someone experiencing same.
  • Barnie
    Barnie

    Posted

    Hi I wonder if anyone can help me with feeling swoony and dizzy spells which have just started to happen in the last few days. Sometimes it happens at night in bed when I turn over on to my other side and also when getting up out of bed to go to the loo. I now sit a few minutes before getting up.

    My question is could this be caused by being a bit overmedicated on Levo meds. I am on 125 mcg per day but at my last test 3 months ago my TSH was 0.02 with T4 at the very top of the range. My GP felt it was a little over but was quite happy for me to stay on that dose if I felt well and I have felt well in the main. I do sometimes get like a fluttering in the chest (heart?) but this goes again and so I havent worried about it.

    Can anyone throw any light on what else would cause this dizzying? Could I be short in any mineral or something?

    Am getting a bit panicky in case it happens when I am out and about etc.

    Many thanks

    • sandy1979
      sandy1979 Barnie

      Posted

      Hi Barnie

      This sounds exactly like me and i've been reduced now from 200 to 100. I was having serious palpitations and 'swoony' lows in blood pressure as you say.

      i'm taking a multivitamin, magnesium and vitamin d3 at the moment but no idea if they're helping yet,

      Sandy 

    • vicki2016
      vicki2016 Barnie

      Posted

      Hi Barnie,

      i had the same thing, for thirty years, and it only got worse over time, the only thing that finally took that away was adding slow release T3 to my Synthroid, also Natural Desiccated thyroid took it away but I couldn't adjust to it very well, please don't let that go on forever, ask the doc for a bit of T3 (cytomel )

    • Barnie
      Barnie vicki2016

      Posted

      Hi Vicki - Thanks for your advice - really interesting.  Could you explain in more detail what your dizzyness was like?  As you will note my original posting was over a year ago.  The Gp diagnosed BPPV and that severe episode went after a couple of weeks.  However my balance has never been the same since - not dizzyness but more of a slight off-balance feeling - some days nothing at all and then others this slight off-balance thing.  I had some blood tests done a couple of weeks ago and I could see that I needed to up my dose of Levo as T3 very low and antibodies for hashi fairly active so in the process of upping my dose.  I am hoping that this off-balance may go altogether then.  Is this how it was for you over the thirty years or did you have real spinning episodes all of that time.  I have also had a very stressful year what with my brother dying suddenly and my husband having open heart surgery so not sure whether it is stress related too - not sure what is causing what.  Thanks for your help 
    • vicki2016
      vicki2016 Barnie

      Posted

      Hi Barnie, 

      sorry about all of the stress in your life I hope things change for the better soon, it didn't happen everyday but the episodes started to become more frequent over the years, I guess it was kind of like a drop in blood sugar, or almost like vertigo, And yes would even happen lying down, such a weird feeling, I was tested for everything, and everything came back normal, and it wasn't until I added T3 into the mix that that went away.. I know your post is from a year ago but I thought if you are still experiencing those symptoms it might be good to ask for some T3, I really can't tell you how much it changed my life, not only have the weird dizzy feelings gone away, so has the brain fog, the lack of energy the aches and pains ect, I feel wonderful

    • Barnie
      Barnie vicki2016

      Posted

      Hi Vicki

      Thank you for your kind wishes - much appreciated.  It isvery difficult - if not impossible - to get our doctors to prescribe T3 over here in the UK.  People who are on it here usually end up self-medicating and funding it themselves or finding a private Endo who still beleives in T3 but they are getting rarer.  I am going to see what I am like with the upping of my dose and if I still feel no better then I will think about how I can get some T3 if that would help the off-balance feelings.  Lovely to hear though that you have found such good health now and long may it continue for you. What we have do to get well - unbelievable isnt it!

    • vicki2016
      vicki2016 Barnie

      Posted

      Well, if you can't find a doctor to prescribe T3, is there any doctors that can prescribe, Armour (desiccated thyroid)? it is such a tough disease, what works for one doesn't always work for another, I hope upping your dose works, I hate the thought of people having to self medicate, and also it's very important to add vitamin D to your regime, especially on Synthroid, I had my levels checked and had none in my system, that makes one feel better as well.... All the best, let's get healthy this year!!!
    • Barnie
      Barnie vicki2016

      Posted

      I had my vitamin D checked too and I was severely deficient!  I have now got the levels up and am feeling so much better - i used to get awful aches in my hips etc and all that went once the Vit D levels came up to good levels.

      I have heard of Armour and that people do well on it - that is the thing i am just not brave enough to self-medicate as i feel i do not know enough about it,  I agree with you there, lets get healthy and more importantly stay healthy!

    • barbara98940
      barbara98940 Barnie

      Posted

      I am on a bovine NDT and it has made a dramatic difference to me: I'm warmer, I've lost weight, my muscles are no longer weak and fatigued and the shooting pains in my muscles have gone. I am in UK so I have had to self fund it and buy it over the internet however I have a very supportive GP who is running the blood tests on the NHS to check the dosage. The site I've bought it from has a lot of information on self medicating and I used that to work out the correct dose. I also started on a low dose and increased every two weeks so that my body had time to adjust to getting T3.
    • Barnie
      Barnie barbara98940

      Posted

      Hi Barbara

      Thank you for your helpful advice - have private messaged you so hopefully you will receive it

       

    • Parsey
      Parsey barbara98940

      Posted

      Hi Barbara, I was thinking about trying some NDT. Would you be able to share the site that you use with me? Thank you.
    • barbara98940
      barbara98940 Parsey

      Posted

      Hi Parsey, I'm on ThyroGold. I'll pm you details of the site you can get it from. I would urge you to read all the free information provide on dosing yourself. Hope it works as well for you as it is doing for me. One of the reasons it works well for me is that I don't convert T4 to T3 very well, so getting T3 (as well as T4, T1, T2 and calcitonin) helps. Barbara

    • Donmatt58
      Donmatt58 barbara98940

      Posted

      Can I get the information on where to get this?

      I'm sick and tired all the time!

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