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T3 with levothyroxine

Posted , 5 users are following.

aisha59175
aisha59175

Hi guys, im from the U.K. This is my first post. I have got so fed up with my uncontrollable underactive thyroid. I apparently have normal TSH and T4 levels over the 19 years i have had it. Im now nearly 30 and they symptoms are still debilitating. I asked for my ft3 to be tested as they do not do that here. It is very low but the Dr will not prescribe any t3 replacement. I have just bought some but I do not know if i should carry on taking 125mcg of levothyroxine and start the t3. Any advice on dosing would be helpful?

0 likes, 16 replies

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  • jennifer16462
    jennifer16462 aisha59175

    Posted

    Hi do you know your actual levels. We will be able to see if you are at optimal levels. 

    There are some people who take just t3, but if under a doctor, ive always know them to add a small dosage alongside levo.

    What symptoms are you experiencing?

    Maybe see a different doctor who will prescribe your dosage off your symptoms along with your levels.

    I always find the best thing to do is write down every symptom you are experiencing, go to the doctor and either ask to be referred to an endocrinologist. 

    I went through the same. I said if it’s nothing to do with my thyroid, what is it then? I want more tests doing. Then they referred me to a endocrinologist. I simply needed a higher dosage and a more knowledgeable person

    • aisha59175
      aisha59175 jennifer16462

      Posted

      Typical ranges:

      TSH - 0.4-4.0 mU/L

      T4 9-25 pmol/L

      FT3 3.5-7.8 pmol/L

       

      My blood test from 22/2/18 are:

      TSH: 0.78 mU/L

      T4: 19 pmol/L

      FT3: 3.8pmol/L

      The Dr is aware that my T4 is not being converted into FT3 correctly but isn’t able to prescribe anything as it is now blacklisted in the U.K. He did suggest that taking T4 and T3 together could be dangerous but would not give any further advice. He said because my FT3 level is just within range he cannot refer me to an endocrinologist. I have all ththe typical symptoms when i was diagnosed at 10. The considerable weight gain, constant fatigue, irritability, very low mood, not able to sleep but im exhausted. The list goes on. Any information would be appreciated. Man

      Aisha

  • olive8
    olive8 aisha59175

    Posted

    I agree with Jennifer don't treat yourself see another doctor. 

    It's dangerous to take a wrong dosage and can affect your heart. 

    Let us know how you get on. 

    • aisha59175
      aisha59175 olive8

      Posted

      I spoke to my Dr about it but because it is not readily available on the NHS he does not want to refer me to an endocrinologist and when I suggested i could buy some and try them he didn’t seem bothered. Dont really want to carry on living  with these symtoms i would like some sort of progress and alot of people have had to self medicate using T3 with gret results.
    • gwanwyn42509
      gwanwyn42509 aisha59175

      Posted

      I would also say  "insist on seeing an endocrinologist.  the doctor should refer you under the NHS. if not  can you afford to go privately

    • olive8
      olive8 aisha59175

      Posted

      You really can't self medicate yourself with T3 because my understanding is its in thyroxine and unless it's determined by your blood results you could do yourself more harm than good. Anyway taking thyroxine doesn't make you feel better in a week it takes a few weeks to get any benefit and if you were to take different dosages you would never feel right. You need to get another blood test and depending on the result of it get medication then and ride it out until you feel better or ask again to be referred. Once thyroid levels go wrong it's not easy to persevere with a change in medication. Too much medication can give you papitations and they are horrible. 

      Hope you feel better soon 

    • aisha59175
      aisha59175 gwanwyn42509

      Posted

      Hi, 

      I have asked the Dr to refer me as he is aware that my t4 levels are ok and it is not being converted to adequate ft3 which makes me remain symptomatic. I think he is reluctant to refer because of the cost of liothyronine which he believes the consultant will suggest. 

      Totally not a good enough reason but made me think if he thinks i need to be on it and its just to do with his cost i could try it myself. I can’t afford to go private unfortunately but looking at the prices of reputable T3 I don’t really know if i can afford that lifelong either.

    • aisha59175
      aisha59175 olive8

      Posted

      Hi, 

      I have asked the Dr to refer me as he is aware that my t4 levels are ok and it is not being converted to adequate ft3 which makes me remain symptomatic. I think he is reluctant to refer because of the cost of liothyronine which he believes the consultant will suggest. 

      Totally not a good enough reason but made me think if he thinks i need to be on it and its just to do with his cost i could try it myself. I can’t afford to go private unfortunately but looking at the prices of reputable T3 I don’t really know if i can afford that lifelong either.

    • jennifer16462
      jennifer16462 olive8

      Posted

      Olive8

      There is no t3 in thyroxine. Thyroxine is t4. And I may be reading things wrong but I think she said she was diagnosed over 19 years ago so I’m guessing been taking levo for that long?

      Aisha

      If there were conversion issues, wouldn’t t4 be higher? As the body starts to store this instead of converting it. My understanding is that an endocrinologist then lowers your levo (t4 ) dosage slightly and introduces a small amount of t3.

      Have you ever had a tsh higher than below 1? I become hypER if I go below 1.5. Some of my symptoms sre irritability, insomnia, low mood, fast heart rate.

    • aisha59175
      aisha59175 jennifer16462

      Posted

      Hi Jennifer, no I havn’t had a TSH above 1 since I was old enough to remember the results. I have asked for the a referral but my GP continues to tell me my results are within range and there is no need and to reassess in 6 months. Which is what we did 6 months ago too. Additionally he has said T3 is blacklisted on the NHS so he is not willing to go down that route. However, i know of patients (being a pharmacist) that have had their endocrinologist initiate the treat regime you suggested. 

      Some of you may find it easier to make progress with your GP but that hasn’t been the case for me, that’s the only reason why I am looking for alternatives and I have pretty rubbish for a long time and been patient with him.

  • lia32714
    lia32714 aisha59175

    Posted

    Insist on referral to an endocrinologist.

    Don’t take any meds without them being prescribed by GP or endo.

    I was prescribed T3 replacement with levo by my endo and I couldn’t move my legs and that was following my endo’s instructions.  It’s not safe to mess with the medication yourself 

    • olive8
      olive8 lia32714

      Posted

      the same happened to me by taking a supplement that played havoc with my usual medication. You would be surprised how many supplements can affect your thyroid.  Before I take anything new I always check with my pharmacist. Tell you one thing that I am sure has helped with no bad results is TURMERIC one capsule daily.  
    • aisha59175
      aisha59175 lia32714

      Posted

      Hi, 

      I have asked the Dr to refer me as he is aware that my t4 levels are ok and it is not being converted to adequate ft3 which makes me remain symptomatic. I think he is reluctant to refer because of the cost of liothyronine which he believes the consultant will suggest. 

      Totally not a good enough reason but made me think if he thinks i need to be on it and its just to do with his cost i could try it myself. I can’t afford to go private unfortunately but looking at the prices of reputable T3 I don’t really know if i can afford that lifelong either.

    • aisha59175
      aisha59175 olive8

      Posted

      I am a pharmacist guys hence why I am not taking this lightly. I work for the NHS and have many friends who are Drs and nobody can give me a straight answer. 
  • gwanwyn42509
    gwanwyn42509 aisha59175

    Posted

    why dont you join the British thyroid Foundation (£15 a year ) and seek advice from them. the whole thyroid situation is a minefield

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