Eventually the breakthrough I have been waiting on. What is your results with added T3?

I would like to start by saying a huge thank you to all that has responded to my few queries and those that have posted has taught me so much about my ‘disease’.

As I was self medicating in conjunction with the assistance and monitoring of my doctors and endocrinologist, I queried to how much I should be taking of NDT to prove a point regarding my T4 to T3 conversion. I would like to let you know of the outcome.

I was able to get an emergency appointment to see my endo as its close to my wedding (very fortunate). I brought the blood results I posted which he keeps a record of and started by saying that I understand that he has the qualifications but something just hadn’t felt right in my body on 150/125/100mg of Levo.

I admitted that from our last conversation I had ordered NDT and to air on the side of caution had been taking one grain which was reflected in my most recent blood results. I explained how the side effects had disappeared and that I felt ‘normal’ although my levels were low and had been able to run 5k’s and not take a month to recover!

I was astonished how open he was and that he explained that he did think there was a conversion issue which was indicated on the blood results and that it was the next route we were going to go down if the higher doses hadn’t achieved the optimal result, which they hadn’t in the past.

He then asked how I would like to progress taking NDT at 2 grains which he would write a script for which I would be required to pay. To say I was elated is an understatement!

Then I threw the fact that I would like to have children after I got married and would he be content to look after me on this protocol through this. He advised that the UK standard from Thyroid UK is obviously synthetic and not NDT as they feel they are able to control the medication more. He advised that the requirement dependant on the trimester vary and that at this stage would like to convert back to synthetic if/when pregnant. As this was a very open conversation and I understood his point of view and is a well respected endocrinologist, I then suggested trying a combination of synthetic T3 & T4 which we haven’t yet been done before we throw the variables of pregnancy hormones into the mix.

He fully supported this idea and stated that he treats the person and how they feel and not just the blood results. He also stated that if this did not work he would support the use of NDT and would write a prescription for a UK pharmacy. He then wrote a prescription for T3 alongside the T4 and suggested I return in 4-6 weeks!!!!!

I am absolutely delighted with this result that my research, politeness and persistence paid off!

I may be surprised to find that the T3 is all that is missing in the synthetic protocol and my body will work in conjunction with this. Only time will tell and I will keep you posted.

I am now taking 10mcg T3 twice daily and 75mcg of T4 – I hope and pray that I lose a bit of weight for my wedding and honeymoon and I shall be even happier!

7 Replies

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  • This is brilliant!!! Perhaps you could email me with this endo's name for our list that we keep here for people who ask for good endos in their area - enquiries@thyroiduk.org

  • Well done. Congratulations. If you pass his name to louise.warvill@thyroiduk.org if you didn't get it from her originally. I am sure you will be a lovely bride no matter what your weight is and am so glad that your NDT has worked so far. I take T3 alone now and am well.

    If your Endocrinologist is open-minded maybe he would like to read a scientific article re NDT, T3 and T3/T4.

    thyroidscience.com/Criticis...

  • Hi Shaws is it normal that the tsh should go upto 29 from 0,07 when you stop Levo 100mcgs and take T3 only?

  • I wouldn't think so. How much T3 are you taking? Usually, on T3 you have a very low TSH and high T3.

  • I am going onto 30mcgs T3 nhs and then 50mcgs levo just started that yesterday. My tsh was supressed as above says 0.07 as now on thyroxine 100mcgs and 20mcgs T3, but when I dwindled down t4 to nothing I continued with just T3 cynomel around 25 (50mcg gave me atrial fibrilations so reduced down) and tsh shot up to 29

  • That's a pity you a.fibrilations and hope your new regime works well for you.

  • Congratulations and well done. :-)

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