Feeling down and annoyed at myself! Have been prescribed NDT as I was becoming more hypo again on a lowered dose of Thyroxine (following a random period of TSH being suppressed with higher normal FT4 - had put this down to a Hashi flare (although thanks to this forum this may be questionable if FT3 was not high). I think the latest hypo had something to do with the reduced dose but also had a brand change from Mercury Pharma to Teva, that seemed to coincide with a few weeks before I started feeling hypo. Plus had tummy trouble so may not have been absorbing. Latest bloods in picture attached. Vit D improved with supplements and ferritin on way up, but know B12 is an issue (thanks to this forum). After recent endo appt where was told to stop levo and I didn't have Hashi's, I went to see a private doctor who has prescribed NDT (half a grain twice a day working up to 1 grain twice a day over two weeks). The truth is am not sure I will get anywhere near 1 grain twice a day at the moment. Day 1 was lovely and my hypo symptoms almost went completely overnight, but they were then replaced with the strangest anxiety and ?adrenaline/cortisol rushes and tense in upper tummy with nausea coming in waves during day and night, and an odd feeling that something horrible might happen. Tinnitus has become louder also.
I think I may have broken my HPA axis through the work I was doing during the pandemic and so have a feeling my problem may be cortisol related, but also recognise that my vitamins and iron still need further work which can have an impact. Doc did warn me about cortisol reaction.
Was thinking to perhaps take a day off from NDT tomorrow and then restart the next but maybe just half a grain a day for 2 weeks and continue working on vitamins (albeit I stopped them due to the diarrhoea)?
Think was just so wishing to stop feeling so hypo 😞.
Thanks for listening more than anything else and the ongoing support provided for so many people in this forum. 🙏
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kreamtee
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when I started NDT it took about six weeks for the awful headache to go. I had other symptoms as well but that was the worst. However, it did get better and I haven’t looked back. Hope it works out for you
The T4 - Levothyroxine will take around 6-8 weeks to fully leave your body and as that slowly reduces within your body you slowly replace with the Natural Desiccated Thyroid.
Stop the T4 and the following day take 1/4 grain :
Second week increase to 1/2 grain so forth and so on :
Monitor yourself am and pm with pulse, blood pressure and temperature.
If, you get to 2 grains you stay on 2 grains for 6-8 weeks and then run a blood test to see where your T3 now sits.
Your TSH will likely be low suppressed and your T4 likely lower than when on T4 monotherapy BUT your T3 should be proportionately higher :
If not - maybe NDT is not the best treatment option for you.
If happy with your progress and symptoms relieved but not 100% you start off again in weekly 1/4 grain increments.
There comes a week when you don't feel as good as the previous week, so drop back down to the lower dose and stay on that dose for 6-8 weeks letting in bed in and then run a blood test if you want to see your T3 level and that is most likely your best dose on NDT at that point in time.
All thyroid hormone replacement options work best when your core strength vitamins and minerals, ferritin, folate, B12 and vitamin D are up and maintained at optimal levels.
Your vitamin D looks to be just over 100 but if I'm seeing this right, and it's very faint, your B12 serum and folate are both low and your ferritin is at 30 and very low in the range - and you likely need to have an iron panel run to rule out anemia.
Everywhere I researched suggested ferritin needs to be 70 for any thyroid hormone replacement to work well and would suggest you build up these core strength vitamins and minerals first before embarking on this experiment so give yourself the best chance possible.
Thank you Pennyannie very much for the reply. Yes - started on the half a grain twice a day as the doctor had prescribed, but as you say I think too much. And thanks for the helpful guide in dosing.
Absolutely take on board what you are saying about my vitamins also (although you wouldn't believe it my ferritin has improved as was 5 in 2016! I know I have a long way to go though). The Vit B12 is a bit contentious as the GP said there were some lab errors pushing most of their results under range, but will repeat and supplement. Have just felt all 🙃 with various symptoms and didnt know what supplement was causing what (or not!).
It just seems a shame starting this experiment when your vitamins and minerals are not in place .
When I started self medicating I decided to stay on T4 monotherapy for an extra year while I built up my vitamins and minerals as I wasn't prepared for NDT to fail me as I had run out of options.
Looking at your print out your T4 on monotherapy was only at 58% through the range so not really high enough to give T4 a chance of working well.
It's generally recommended that T4 needs to be up in the top quadrant to work well, and of course with optimal vitamins and minerals already in place.
Yes understand. I did talk through all the options with the doctor, including what you mention. This was what she recommended whilst supplementing (but recognise this may not be the best way from reading the forum). I guess I also felt a bit trapped, as have an endo that wanted me to stop thyroxine altogether and a GP who is very supportive but very conscious of TSH. I suppose underlying this was a fear that I may not be given the option of being fully given a go on Levo or T3\T4 if that makes sense too. Will see how I go and if not the right time I will see if can switch back to Levo and build up vitamins etc., as hopefully all won't be lost.😊🤞
Well the NDT will likely work better for you than the T4 and as your core strength vitamins and minerals build you may find your dose of NDT needs adjusting down as you become more able to fully utilise the full spectrum of thyroid hormones that this option gives you.
agree with advice to introduce ndt slowly. Suggest you get b12 levels checked, however, if supplementing with b12 the interpretation will be difficult.
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