Please comments on test results on ERFA NDT trial

[SmPea]

I am seeing private Endo tomorrow, so would really value any thoughts on my test results I got this morning.

Test was done fasting, 8.00am and 1/2 grain of ERFA taken 10.00pm day before.

I have been on trial for nearly 8 weeks. On day one stopped Levothyroxine 100mg and next day straight on to 1/2 grain 7.30am and 1/2 grain 12.00 noon. After 4 weeks increased 7.30am 1 grain and 12.00 noon still 1/2 grain. All as directed by Endo.

My FT3 is the highest it has ever been but I am surprised by very low FT4 and TSH higher than expected.

Current supplements Vit D K2 2,500 daily, Magnesium 600mg most days. I did start taking 1 x Igenus B Complex for a while but stopped over 3 weeks ago.

I have noticed my brain is brighter, a bit more energy but still have constipation, sleep not so good, waking after 3 hours then waking every 1.5 hours after that, more vivid dreams. My unintentional weight loss has become more stable - thank goodness - as was heading to be underweight ☹️ Aching joints from time to time too. Dry eyes more often especially in waking.

Overall I don’t feel any worse than I was on Levothyroxine and some ways better.

I have also been gluten free for 7 months.

Thank you in advance of any replies.

[SeasideSusie Remembering]

SmPea

Still a way to go I think, an increase would be beneficial.

On NDT one would expect to see TSH below 1, maybe even suppressed, FT4 lowish in range and FT3 in the upper part of it's range.

Folate I would want in double figures, other nutrients OK.

[SmPea in reply to SeasideSusie]

Thanks, SeasideSusie hopefully the Endo will say an increase is needed too! I’ve only had one telephone consultation with him, but will see him tomorrow and hope to get an idea of his approach to all things thyroid, hoping we can work together. Had some appalling treatment by other NHS Endo’s and GP’s. Breaks my heart that I’ve been forced to go private as I so believe in the principles of the NHS.

[pennyannie]

Hey there again;

The blood tests and ranges were introduced alongside the Big Pharma companies launching synthetic thyroid hormone replacements in around the middle of the last century as options to the NDT treatment of the previous 100 years prior to the " science " of blood test analysis, the guideline and ranges, that we currently seem wedded to.

So the above should be used more as a guideline and compared to your bench mark number of T3 and as you say your T3 is the highest it has ever been so we have some improvements but still have some other issues of hypothyroid.

A hundred years ago, you would have had been given a slightly bigger nugget of pig thyroid to take, as you still have symptoms.

On NDT the TSH is usually low suppressed, and the T4 can be low in range and if you feel ok - this is ok : though read some people prefer to see theirT4 higher :

Since we need to convert the T4 into T3 in order to function I see my T4 as surplus to requirements if my dose of NDT is about right for me.

Some people feel the fixed ratio in NDT not to their liking and add in a little T3 or T4 to fine tune to find the elusive " sweet spot " :

Personally, I 'd just slowly increase by a 1/4 grain each week and keep building up a little more, monitoring temperature and blood pressure daily.

There will come a week, when the 1/4 grain increase has a negative effective.

You may feel a bit anxious, nervous, edgy, and just " not you " -

Simply drop back down to the previous dose you were on, stay on this slightly lower dose for 6-8 weeks and then take a blood test, just to see where you are, and where you feel best on NDT.

There are eye drop ointments that are especially for overnight use, slightly " gunkier " and heavy duty - just ensure that any lotions, potions and drops are preservative free.

P.S. Since you have Hashimoto's you will feel better with a lower TSH so to reduce gland stimulation.

[SmPea in reply to pennyannie]

Thanks pennyannie that is so informative and helpful. I may get back to you if my Endo appointment doesn’t go in the right direction! Having years of poorly treated Hashimoto’s has made me into such sceptic!!🤨