Levo lowered in Nov, exhausted help!

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Was on 100 mcgs doing good , lowered to 75 mcg feeling drained, slugged, getting signs of crashing bloated and gaining weight again! Constipated had a massive fire up of dermatitis , got test done result showin within range, 3.5 TSH, so sick of this anyone help, iron at 60 which they find acceptable too! Shame this crap is not happening to them, going back Wednesday to explain all this and ask them to up me again, never been referred to a endo should I as about this too? Just feel they are not interested here , got severe lung condition I will need a transplant at some point and seriously so sick of feeling this drained and ill, see a specialist 3 x yearly going to mention all this to him as well, but I do know thryoid crash signs it totally collapsed last time and only after 16 months of my pestering did they do the darn test, just want to feel like I did last year! Help please 

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  • Posted

    We know our bodies better than they do! I have had the same problem many times with Doctors telling me my dose was too high without checking my levels. I had one try to drop me from 276mcg to 75mcg without testing my blood. I called and made a formal complaint and went to another Doctor. After getting my results they told me I needed 276mcg to be balanced. Change Doctors they are there for you not the other way around. You can become so depressed from the pain in your body from not taking the correct amount of medication. 
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  • Posted

    Hi,keep pestering! Just because there's a range, doesn't mean we're all in exactly the same place in that range.You know how you felt before against how you feel now.If you're anything like me, you'll forget some of what you want to say to your doctor.Write it down, or write him/her a letter beforehand explaining everything.This gives you time to think it all over properly,and for your doctor to have all the info before your appointment.And if you can wait a few days longer,make sure you have a double appointment booked to throughly discuss things,and to ask for a referral to an endocrinologist.Wish you well.Gill
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  • Posted

    I will ask on putting me back up on Wed this is a new surgery as we moved in Jan so prepared to give benefit of the doubt but not to be ignored. Will ask to see endo too if I get nowhere many thanks for reply and nothing surprises me over throyid lack of care and concerns, sad
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  • Posted

    I'm appalled that doctors don't listen to us! We do know what's going on in our bodies better than they do. Even though the results are "normal" if you are having symptoms, the dose of med isn't right for you. Might be good to see and endo. Keep pressing till you feel better, keep after them till you feel better! 
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  • Posted

    Hi Kitten1,  Your story is exactly mine.  In 2013 a GP insisted on dropping my 100mcg dose of Oroxine to 75mcg .. based on TSH alone which was 0.08.  I had been on 100mcg for about 27 years and felt fine.  T4 and T3 was good. Blood pressure and heart rate was also good.  The TSH reading had dropped a bit from it's usual 0.63 after I had a bowel resection to 0.08.  Every doctor that I pointed this fact out to just looked blankly at me and did not even consider that this could be a factor.  To cut a long story short I became severly hypothyroid after about six months, became very ill and actually feared for my life.  When my temperature dropped to 35.2 it finally dawned on me that I had become very hypothyroid.  I refuse to headbutt doctors any further - they do not know what is going on with the thyroid.  The Endo was the same - just going by TSH - useless!!!I  I put my medication back to 100mcg and refuse to allow any doctor to change it - I've been fine ever since.  You must look after yourself and make your own judgements about your health.  Only 'you' can do it. Don't waste months or years being ill when you don't have to.  Doctors fooling around taking you up and down when they are really unsure of what they are doing .. you are just being the guinea pig.
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    • Posted

      OMG! I am so afraid of this happening to me I ballooned in size last time! How did you up your meds without their consent was thinking of just doubling my dose too I have the 50's but thought they would shout it up on re order if I did this?
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  • Posted

    Hi Kitten,  You asked .. how did I raise my Oroxine back up to 100 from 75?  I am in Australia and you are probably in the UK?  I attend a medical centre where there are many doctors and I can see any of them.  When I finally went to see a doctor there I was very ill by that time.  The doctor that had lowered my dose was not on duty that day so I just saw another and told him the story and my symptoms and told him I was putting the dose back up.  He agreed!

     You must stand up for yourself - you already know the dose that you need to be on to be healthy and you need to go back to that dose.  Research thyroid conditions on the net and become well informed on the subject so that you can be better prepared to talk to doctors.  If you get no satisfaction from your current doctor you 'must' find another who will listen to you.  'Always' get a copy of your thyroid tests so that you can understand the numbers and keep track of your condition yourself.  Don't let doctors change your medication on TSH test alone - must have free T4 and free T3 as well.

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