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Time to put pressure on the medical profession re treatment

Posted , 6 users are following.

kathryn53888
kathryn53888

Hi fellow sufferers,

I have been doing my own research re Thyroid and how it works ( I am a research Nurse  with hypothyroidism) I am so tired of  being sick and tired and increasingly so. What is the use of have 'normal' blood tests if our symptoms dont get any better or indeed worsten?

Let me explain T4 is the inactive form of thyroid hormone produced by the Thyroid gland, this needs to be converted by the liver into the active form of thyroid hormone (T3). This T3 is what is needed for the cells to give us energy.The test the NHS does is for T4 which circulates in the blood.The confusing thing is that we are all prescibed Levothyroxine whcih is a synthetic form of T4 (so our blood results look normal but our symptoms may not improve) We need T3 for energy (and weight loss)

I am on a mission with my GP's re this as they are not authorised to prescribe anything else (eg a combination of T3 and 4). It is really annoying as in fact they are treating our blood results and not the person with the symptoms. I suggest we arm ourselves with the relevant information and canvass for change. You will be surprised at how little your GP knows about how the thyroid functions - be prepared for them to get a little annoyed!

Yours for good health!I 

5 likes, 12 replies

12 Replies

  • linda60516
    linda60516 kathryn53888

    Posted

    Hi  

       I also am a RN. I just asked my PCP to change my Synthroid to Armour. I was told she was not cofortable and referred me to Endo. Great, but the MD I called did not have a 1st available till February??

              Unbelievable!!

     

    • kathryn53888
      kathryn53888 linda60516

      Posted

      I hope you get some positive feedback, the trouble is they go by the guidelines and dont deviate, even Endocrinologists give T4 (Levothyroxine). I am seeing the Hepatologist as I now realise the liver has to be in good health for the thyroid to function well. the more people you challenge the status quo, the quicker they will look at the evidence (and by that I mean the glaring evidence of hndreds of people on levothyroxine still suffering symptoms! go well 
  • linda60516
    linda60516 kathryn53888

    Posted

     It is very difficult to just sit back. After all, it is our bodies...

     

    • kathryn53888
      kathryn53888 linda60516

      Posted

      Exactly! Here in the UK I think we rely on the medical profession too much and have lived in a culture of 'do as you are told' when it comes to medicationa and disease etc. These times are coming to an end as people are questioning more - yes your right as a nurse I have always said that to my patients "Its your body you need to know what is going on" you will be surprised at people who have had operations and dont know what was done! Power to the people! 
  • Carmen2374
    Carmen2374 kathryn53888

    Posted

    Hello Kathryn, Greetings from Sydney Australia

    thank you for dharing this realistic info

    pls keep us updated with new info

    I had my thyroid out 3 years sgo

    on levo 100mg per day nil on sundays

    my life has never been the same ever since taking this drug, aches and pains are in my daily days, shortness of breath, weight is good if anything i dont eat much, foggy brain, and dry skin.

    Thank once again

    Regards 

    Carmen

    • kathryn53888
      kathryn53888 Carmen2374

      Posted

      Hi Carmen,

      Sorry to hear that. Dont be afraid to keep going back to your GP with your symptoms. Look into your Nutrition though as this is key (its not just about calories!) We were not meant to live suboptimally in terms of health - whats the use of living longer if we are struggling? We have to get to the root of the problems and not ust shrug them off (or be given anti depressants). I wish you well on your journey.

  • alyssa1971
    alyssa1971 kathryn53888

    Posted

         I am in the US and I'm going to ask my new physician about Armor.  I, too, am on Levo, but now on a 150 MCG dosage.  I believe my Hypo/Hyperthyroidism caused me to go menopausal early.  I began experiencing symptoms at age 28.  The only reason I have a 9-year old son is because of IVF!  

         Anyway, I've heard of Armor but my physician recently retired and he'd taken over for my Endocrinologist, since I'd been stable a while.  Problem is, now I"m exhausted and was experiencing migraines and mood swings terribly.  I wasn't sure if it was from my thyroid menopause now!  

         I'm expecting a new panel of bloodwork before he says anything.  I'm ready to take on this new doctor with tons of questions.  He's going to wonder where I heard Armor from.  lol

    • linda60516
      linda60516 alyssa1971

      Posted

      Yes. If you don't stand up, you won't feel better.

      Also, I just started taking Levo at Bedtime. Check out the research. It says it is better absorbed.  I can already feel the difference. My temperature in AM was 97.1. A far cry from 96,0. But I will not stop here. As the temperature goes up, the swelling/weight retention goes down. I also dangle my feet and do leg exercises to stimulate the blood flow.

       

  • lynda15964
    lynda15964 kathryn53888

    Posted

    Hi Kathryn yes I totally agree with you I felt worse on them than off which I did for 3 months.  I never had so much energy for years and I felt really well too.  I did ask the Doctor if I could possibly have had too much levothyroxine and he really couldn't answer me - he also had to refer to a handbook which only advised him on which dose to start me off again on - which incidentally was 50mcg with a repeat blood test in 8 weeks.
    • kathryn53888
      kathryn53888 lynda15964

      Posted

      We are all on a journey and need to arm ourselves with as mch knowledge as possible - the trouble is we look at things in isolation instead of the whole system. Liver health is also key in getting the T4 converted to T3 so if the liver is sluggish (fatty) then its not going to be funtioning properly. I wish you well
  • Search_tpa
    Search_tpa kathryn53888

    Posted

    Hi, read you discussion with interest.  Just wondered I you had heard of 

    THYROID PATIENT ADVOCACY (UK)?

    i only found out about them last year when I was at the 'end of my tether' with feeling sleepy all the time, and everything else that goes with it.  Website has some great research articles and the forum discussions are busy with questions about dealing with thyroid issues not recognized by nhs.  There seems to be some well informed folk offering possible solutions too.  

    I've felt better supported by this website that I ever have been with primary care. Not a dig at primary care, they follow guidelines and can't be expected to be at the forefront of research.  But your right, changes need to be made within the nhs establishment.  One example is that T3 reportedly costs the nhs over £100 for one months supply, but I can buy 100 tablets (more than 3 months supply) for personal use for £14? And that includes postage. Aye from Cyprus!  I can't see nhs being keen to supply us (that don,t do well on t4 only) with t3 at that price.........

    kind regards, kerry

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