Going to give this another go. Hoping it makes more sense than my last post.
Here are my blood results and the medication I was on during each test:
Bloods on 50mcg of Tirosint:
TSH 1.87 mIU/L
T4 17.7 pmol
T3 3.9 pmol
Bloods on 75mcg of Tirosint:
TSH 1.06 mIU/L
T4 17.5 pmol
T3 4.4 pmol
Bloods after 5 weeks of NDT:
TSH 3.12 mIU/L
T4 13.6
T3 5.3 pmol
I initially tried 50 mcg Tirosint which I responded well to and was then put on 70mcg of Tirosint and it was an absolute nightmare I became really mean and my PMDD was the worst it had been in a long time. I then dropped back to 50mcg of Tirosint and felt as close to normal as I had in a while, I wasn't constipated and felt relatively good but the following nagging issues were still present:
- Muscle fatigue specifically my arms before my period
- Severe PMDD 2 days leading up to period
- Cold feet and hands but my body temperature regulation was definitely better
In an attempt to get rid of the above my Endo recommend I try NDT grain 1 and said I can go back to the Tirosint if I don't like the NDT.
Now I've been on NDT grain 1 for 6 weeks and I definitely feel more motivated and alive but the following issues are still here:
- Muscle fatigue specifically my arms more frequent but not as intense
- Constipated (I was not constipated on the Tirosint
- Over heating (I feel like a heater constantly. I'm so warm my body feels itchy).
- A lot of my hair falling out daily
- My partner reckons I've been more obsessive (anxious) and I agree
- Insane increase in appetite
- Fingers and toes are still cold but it looks like circulation has improved in my feet as they no longer turn purple.
I saw my Endo yesterday and he suggested I try taking an extra 1/4 grain of NDT every second day to see if it resolves everything as my numbers are looking good but there's room to increase the T4 and it's clear some things are better. He said I don't have to if I don't want to and to be really cautious with the increase which has made me even more unsure of increasing the dose. The other option is that I have Grain 1 NDT with 25 mcg compounded Levi-thyroxine.
Now here's the thing even with the improved mood etc., the side effects of the NDT just feel like a deal breaker to me but it's also only been 6 weeks and I had my 2 year old niece here for over a week so I didn't really get to monitor my symptoms leading up to my period and I'm currently beyond exhausted after looking after her.
So I'm thinking of sticking to taking grain 1 for another 4 weeks and actively monitoring and writing down how I feel and any symptoms I have and then seeing if I want to increase my NDT.
If I still feel like NDT is not it I might just switch back to my Tirosint for 6-8 weeks and see how I feel on it and then go see my Endo once I've done some experimenting on my own.
My current gut feeling is that I'll be better off on Tirosint and Cytomel as I'll be able to tweak and find the right dose of T3 for my body where I can't really do that with the NDT. I'm skeptical of upping the NDT as my appetite increase has been insane and I'm sick of feeling like a heater.
All of my other vitals (Vitamin B, Vitamin D, Ferritin etc.) are in good standing.
I guess what I'm asking is what advice do you have for this situation? My gut is telling me the NDT is not it even with the few improvements it feels as if the Tirosint was just a better fit.
Do I give the NDT another 6 weeks to see if the symptoms I'm currently having resolve, try an increased dose, try the compounded Levo-thyroxine, or do I go back to my Endo and make a case to shift back to Tirosint and trial taking Cytomel with it?
I'm not sure how much longer my insurance will pay for appointments so I need to do the most with the time I currently have. I will pay to see my Endo but it's not cheap so trying to make the most of it.
Thank you for taking time to read this.
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Nibs94
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You need to increase the NDT always do it gradually I did it weekly by a 1/4 of a grain so you need a pill cutter. I settled on 1 1/2 grains some need more some need less. With NDT you go by how you feel I never had blood tests because I felt well and I also knew my TSH would be very low. Doctors don’t like a low TSH even though it is a pituitary hormone not a thyroid hormone. It is the T 4 and T3 that counts
I would strongly advise you not to increase NDT by 1/4 grain every week. That's much too fast. Every two weeks maximum in the beginning, but the higher your dose goes, the more time you should leave between increases.
Five weeks was a little too soon to test. It takes at least six weeks for a dose to settle, sometimes more. And your results don't give us much information because you haven't put the ranges. But that last TSH is obviously too high. Your FT4 is low because of the T3 in the NDT.
If I were you, I would increase by 1/4 grain now, and then wait six weeks and retest.
I saw my Endo yesterday and he suggested I try taking an extra 1/4 grain of NDT every second day to see if it resolves everything as my numbers are looking good
That won't work. For T3 to do what it's supposed to do you need to take the exact same dose every day.
And your numbers aren't looking good because of that high TSH - it should be much lower than that on NDT.
What do you mean by ranges? Still figuring all this out. I also felt like the TSH was high on the NDT and so when I look at my number on the Tirosint they appear to be good which is another reason I'm skeptical of NDT at the moment.
Will have a look at increasing the NDT as you've advised. Thank you
Ranges are the numbers that you usually find in brackets after the blood test result. For example:
FT3 4.2 (3.1-6.8)
We need to see how high within the range the result is. Results cannot look good, bad or indifferent without the range, and ranges vary from lab to lab so we always need the ranges that came with your results. Otherwise, impossible to interpret them.
That is your opinion but we are all different. I initially started on 1/2 grain for 3 weeks I then increased by 1/4 grain a week if I felt jittery I would decrease by a1/4 of a grain. A lady in the USA advised me on this method and she has taken NDT for over 30 years. It is all trial and error with NDT and you go by how you feel not by blood results. Years ago when there was no Levothyroxine and only NDT people felt well. I wish they had never introduced the TSH test myself
1 grain of NDT daily is effectively a starter dose. It’s only going to be enough in the long term if you’re very petite.
Given the advice your endo has given about taking an additional quarter grain every other day, it doesn’t fill me with confidence that he knows very much about NDT (or T3 containing medications).
So I’d say it’s too soon to know whether NDT is right for you because you aren’t on an optimal dose. And the only way to find out whether it is a good fit for you is to very slowly increase your dose over the next few months in the way that GreyGoose has already described.
75mcg is often the hardest dose to get through and on to higher dose as it’s enough to significantly reduce your own thyroid output but not enough to offer full replacement
With thyroid hormones you need to build any dose slowly - and then run a blood test 6-8 weeks after being on the same dose to have any idea what is going on internally.
It takes around 6 - 8 weeks for your body to lose the effects of whatever hormone replacement you were taking - and to rebuild itself with whatever thyroid hormone replacement you replaced with -
Swapping or sticking too fast and you will have no idea which treatment option suited you best and best left to playing cards !!
All we can see is that your T3 has improved on the NDT and that is the hormone that runs the body and would suggest you slowly build up from 1 grain in 1/4 grain increments - I went weekly - some suggest fortnightly - as NDT takes time to bed into the body.
Monitor and track yourself on blood pressure, pulse and body temperature - am & pm -
There comes a week where you sense you've gone too far - I just felt a bit anxious and edgey in my body - so you then drop back to the previous dose you were on - stay on that dose 8 weeks and then run a blood test to see what is going on -
With NDT the T4 can appear low - compared to when on synthetics - but this does not matter if you feel well as it is all about getting your T3 to a level that gives you back your health and well being.
If you build up and get to 2 grains - stay there for 8 weeks and then run a blood test to see what's going on - if your T3 is moving and there is relief of some symptoms but not all - start again slowly building up from 2 grains and monitor on your physical symptoms.
No thyroid hormone replacement works well until your core strength vitamins and minerals - those of ferritin, folate, B12 and vitamin D are up and maintained at optimal levels - I now aim to maintain ferritin at around 100 - folate around 20 - active B12 125 ( serum B12 500++ ) and vitamin D around 125.
I think my thyroid is kinda working so I took a low dose compared to others. I like my levels quite high because I feel like I can cope with life. At the moment I think I am levelling out I am sleeping better and no Graves’ Rage thank goodness 😉
I'm with Graves and post RAI thyroid ablation 2005 and seem to be able to get by on 1 + 1/2 grains taken in the middle of the night at a toilet break- so well away from anything else and it generally ' wakes me up ' around 2 / 3 hours after ingesting -
On synthetics my T3 was never higher than 25% through the range with a T4 at 100/110% through the range - 24 hours after last dose of T4 - fasting blood test :
On NDT my T3 is 90/110% and my T4 around 25/30 % through the range 10/12 hours after taking NDT on a fasting blood test.
I thought I was dealing with dementia - and had no idea what my kettle was or - and why it was in the fridge !!
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Always have low Free T4 levels whether on NDT or not
Going to give NDT a try
Endo switching me from T3 only to NDT.
From NDT to T3 - Difficult going. 
Do I need more or less NDT?
