My Endo wants me to drop my NDT from 1 3/4 grains (split doses) down to 1 grain to add T3 of 20mcg per day in.I showed DIO2 positive 11months ago and its now been agreed at my expense to add T3 to see if this helps all symptoms, mainly gut pain and function and weakness and fatigue. I am wasting away as i simply havnt been able to fully sort the gut on NDT alone.
I still dont understand (might be the brain fog !) why Endo wants to see a higher TSH by reducing the NDT to 1 grain, he says despite NDT there should still be a registering of TSH. I feel i do best when my T4 is arond 18-20 and T3 around 6.......
That said, why cant i just add T3 to the 1 3/4 grains of NDT say starting with 2.5mcg in the morning and 2.5 mcg in the evening, would that be how to do it ?
Or if i reduce to 1 grain of NDT do i have to reduce down from 1 3/4 gradually or do i go straight to 1 grain a day, and then how many days weeks till i start adding T3 ? Bearing in mind i feel absolutely dreadful now, very weak ,v difficult to absorb (have hypochlorhydria, difficult at present to take HCL as have ulcer)
Last test T4 13.1 (9-23) , FT3 5 (2.5-5.7) , TSH 0.02 (0.3-4.2) , Vit D 99 (70-150) , B12 active 234 (37.50-188) , Ferritin 84 (13-150) rest of Iron, FBC, Glucose, Liver all good.
I hope someone can advise me please, im exhausted fighting for my health like so many of us on here.
Every best wish G.
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Gillybean1
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Thank you for your reply. Yes i seem to be ' everything free, at the moment, wasting away,with this wretched gut inflammation which comes and goes. My take on it is the low HCL creating undigested food, causes the sore spot, and the lack of T3 getting to where i need it in the gut, ie emptying of gallbladder and peristalsis of colon normally, creates havoc.Chicken and egg,taking betaine really helps my stomach but irritates sore spot in small intestine. Slippery Elm helps,bone broth, cabbage etc, but im knackered from food not nourishing me. I was hoping a small amount of T3 say 2-4 times a day might solve this. At the moment i take 1 1/4 NDT in the morning and 1/2 grain 6 hours later and my gut is definetely more tolerant and less painful when i eat the first meal of the day and is worse by evening after the lower dose of NDT, so im thinking the T3 is very relevant would you agree?
GF 7years ( can you believe Coeliac test was done 5months after i had been Gluten Free and then again 18mths after i was Gluten Free, so my records state not Coeliac, BUT Endoscopy said 'flat villi' inline with Coeliac disease.)
DF 6years, SF 5years. Ive also tried Grain Free for 6months with no inprovement and Nightshade free for 6 months and im very strict to keep to it, but no improvement there either.
Blood test such as Liver function, CRP, FBC all normal, so i conclude with the DIO2 positive maybe i just need more T3 generally to heal these sore bits and be able to eat more generally with HCL and Enzymes added in.
My only concern is will additional T3 make me drop more weight because im just under 7 stone now, and look dreadful?
Thank you again for your reply. Im really hanging alot on T3 being the missing piece of the puzzle and rids the pain of 7years now,very waring on not just me.
Yes the Slippery Elm is brilliant but not for ongoing use, it really coats the wall of the stomach bag so stops the irritation but i suspect it might impede release of pepsin from gut wall when you need it upon eating. And an hour after eating i think it really does need an extra glass of water because it definetly slows the process in the small intestine down without it, but again very very soothing.
I couldnt get into your profile on your gluten issues, but i hope you found it better leaving it out. The NHS screen i understand checks for 32 markers which seems alot until i read the USA screen cover 70+ markers which makes the UK test pretty incomplete. At the end of the day so many of the immune disorders being research seem to be linking gut, gut permability, in their findings to date, but there is way more research to be done all round as to whether its the food chain,environment,antibiotics,vaccines,water, or all of these things that have tipped the balance.....time will tell,probably not in my lifetime.
Im very glad to read you found a balance with T3 in split doses, youve given me great hope,thank you.
Thank you for your reply SlowDragon, sorry ive been out of it again with the 'ole gut pain prob' i lose days of my life. I will go very carefully with the T3 as advised just hope the brand suits, its an expensive waste if it doesnt, Endo wouldnt write 3 private scrips a month at a time, anyway im keeping positive that all will be fine.
From my own experience on T4/T3 combo...the more T3 I add the greater my TSH goes down, so not sure what your endo is hoping to achieve? What dosing produced your preferred FT3 of 6 and FT4 18-20? Presumably your endo is unhappy with that dosing...so you could opt for DIY dosing?
Thank you for your reply. I was on 2 1/2 grains of NDT a year ago which produced a better energy but still had gut problems, so moved it up to 2 3/4 but at the same time i drop out a supplement drink i was taking daily and the effect of dropping out its Calcium content created a very unpleasant first 'thyroid storm' presumably the Calcium had interfered with the NDT uptake, so like snakes and ladders i went back to the beginning and started building up again with NDT to the present 1 3/4 that i take today. I dont know if i missed my sweet spot last year or if ive ever reached one ! Certainly doesnt feel like it right now.
Yes Endo didnt like that even lower TSH either.I can do DIY dosing just dont want to lose any more weight because i cant absorb and digest properly as i am.
Some days i think 'right im just gonna do it T3 and get on with it' then in comes creeping fear and im stopped in my tracks because i havnt felt this unwell for ages and worry im going to get worse.
Many thanks for your support though, it really helps, G.
Presumably he thinks you're taking too much T4 for someone who can't convert it.
If you can't convert the T4, reducing your NDT by 3/4 grain would reduce your T3 by 6.75 mcg. And, he wants to replace it with 20 mcg T3? I don't think he's thought this out very clearly.
Your FT3 is almost right up the top of the range. Adding in 13.25 mcg T3 would almost certainly take your FT3 well over the top of the range. Is that what he wants? Because if you do that, your TSH will most certainly be undetectable. Of course, he is wrong in his ideas about the TSH, but even so.
What I would suggest would be to reduce your NDT by 1/4 grain, and add in 5 mcg of T3. Wait six weeks and get retested. If you still have room to increase T3, reduce NDT by another 1/4 grain and add another 5 mcg, wait another six weeks and test again. And, continue like that.
It would be a tremendous shock for you body to reduce your NDT by 3/4 grain and add in 20 mcg T3 all at the same time. Increasing/decreasing hormones should should always be done in small quantities and giving your body adequate time to get used to the changes. It makes for a much smoother ride.
Very lovely to here from you again, thank you for responding.
I dont know what Endo is thinking, maybe he is just apeasing me. He cocked up as it was 5years ago i said i was suspecting a gene problem, he said if your bloods then show a problem i will do the test for you, save your money in 2013. Last year id had enough, did the test ,it came back positive and waved it under his nose.So this is supposed to be a trial to see if it improves everything but mostly my gut problems.
I have long bleated on to Endo and Gp that if i dont fix this gut inflammation it will be the death of me. Now i know about the gene fault i realise im hanging alot on T3 helping me but i really am at the end of the line here. I have to try something different,im simply wasting away and starving from malabsorbtion problems. Yes Betaine and Enzymes help, but not when my gut is inflammed, Yes GF,DF,SF done 6 months no grains, 6 months no Nightshade neither which helped.
Its a great suggestion GG to reduce a little NDTand add a little T3 and 6 weeks i didnt know about that time frame, i was expecting 2 weeks to retest and add or reduce time frame.But i feel more comfortable doing it gradually rather than going cold turkey,i also dont know what sort of reaction i will have to synthetic T3 im going for the Hydrochloride version from Thybon,based on price and i gather absorbtion can be slightly smoother than the sodium T3.
This might be a stupid question, but does it matter if the T3 pushes my FT3 out of range if i feel ok, pulse and BP ok and no jitters? What happens to people on 40,50,60mcg T3 wouldnt their ranges be sky high?
I dont understand what Endo means re TSH still being detectable then, perhaps he prescribed 20mcg a day because thats the lowest dose tablet available in the UK, i dont know, i really dont, im just fed up and exhausted with fighting and struggling for my health and being heard.
Thank you so much for your support GG, youve made me howl with laughter on many occasions over the years ive been reading your sharp,witty remarks, its a delight, long may you continue.
This might be a stupid question, but does it matter if the T3 pushes my FT3 out of range if i feel ok, pulse and BP ok and no jitters? What happens to people on 40,50,60mcg T3 wouldnt their ranges be sky high?
This is complicated. And depends of many things. Depends, for a start, how much over-range your FT3 goes. I'm not a great believer in sticking rigidly to the ranges, because they are man-made and arbitary at best. And because the T3 in the blood does nothing. It's only likely to make you feel jittery, etc. if too much gets into the cells. Some people have trouble getting it into the cells, but there are no tests that can tell you how much is getting in. So, people who are taking 40, 50, 60 mcg - I take 81.25 at the moment - won't necessarily feel over-medicated if the T3 is not getting into their cells. And, if they have an absorption problem in the gut, then their results wouldn't even be over-range. I have come across people taking much higher doses than that and their FT3 is bottom of the range. It depends on so many things. We can only try and see what happens.
I dont understand what Endo means re TSH still being detectable then, perhaps he prescribed 20mcg a day because thats the lowest dose tablet available in the UK
It's rather doubtful that he did it for that reason, because people cut their tablets in halves and quarters. But, like many doctors, he doesn't seem to realise that taking T3 in any form is going to suppress the TSH if you take enough of it, and that's OK.
So, anyway, let us know how it goes on. I shall be waiting for your up-dates! Take care.
I don't think anybody really knows what effect cutting the tablets would have, but I don't think it has anything to do with hours. The only concern is that the tiny dose of T3 they contains would not be equally distributed across the tablet. But T3 won't evaporate from a cut tablet, if that's what you mean.
Sorry for late response, major gut flare and ive lost days again. Thank you for responding.
Yes i did mean i had heard that they (T3) deteriorates on cutting, im glad to hear thats not true.
Could i ask your advice again please on taking the additional T3? I currently take the 1 3/4 grains of NDT in split doses daily, that is 1 1/4 grains AM (T4 47mcg +T3 11.25mcg) and 6 hours later 1/2 grain (T4 19mcg + T3 5mcg)
So would it be best over this next 6 weeks to drop the 1/4 grain NDT in the morning dose and add the new 5mcg T3 to that, or would it be better to drop the 1/4 grain AM add in 2.5mcg T3 (difficult to cut! ) and drop the PM NDT from 1/2 grain to 1/4 grain and add a second 2.5mcg of the new T3 then?
The reason i ended up splitting doses of NDT in the first place was i couldnt tolerate presumably more of the T3 content, despite Folates, iron, D, B12 all being good. i am one of those though that seem to be the other way round to most on here in that ,my adrenals are poor some of the time (lack of sleep-gut pain) and starving from lack of absorbed food due to inflammation, Catch 22, so i have felt for ages now that lack of T3 and as i now know about my DIO2 fault, has pulled my adrenals down and everything else too.
Im hanging alot on T3 helping me,just hope to goodness this Hydrochloride version agrees with me,otherwise its a very expensive waste as Endo refused to write monthly scripts to give me an option to switch brands. Anyway staying positive that this will be my year of change.
Ever grateful to you for being here Greygoose,with kind regards Gillybean1.
I wouldn't try cutting the T3 pill into anymore than quarters - you'd lose a lot in crumbs! So, I think, if it were me, I would make the necessary changes to the morning dose. Your body should be used to the T3 by now, so it shouldn't cause any problems.
Thank you again Greygoose, ok i will stick to morning dose for adding in for 6 weeks as you advised,re test and drop and add and retest, till symptoms are relieved.....onwards and upwards.
Just to say, I guess the myth that the residue of a cut t3 tablet must be disposed of sounds like a marketing ploy to get us to buy more.
I have some novothyral tablets, which are a combination t4 and t3, with marked ridges for splitting them. If t3 deteriorated from cutting, it would apply there too, but obviously the tablets were made with the intention of being split if necessary.
Thank you for your response, yes because its not like they make much profit already !! Ha Ha . I wish i could remember where i read it, these tablets are stuffed with so many fillers they look fairly indestructable really.
Somebody actually did bring that up with the manufacturers, and was told that just because there was a ridge in the tablet, didn't mean it was for splitting the tablet! But they couldn't explain what it was for! lol They really do take us for idiots!
Hey Gillybean I dont have Greygooses knowledge but just want to wish you all the best with your new T3 regime. Fingers crossed and toes for you. 😊
I think if your adding it in slowly like grey goose says your body is waking up slowly as it does it will use more of the T3 and then your ready for your next increase and so on until you reach the max for you. Thats my simplistic non evidence take on it!
Thank you very much for your reply, and so lovely of you to cross everything for me. I slumped badly the last couple of days hence my late response to you.
Im not sure how im going to tackle the split doses i currently do with the NDT and then adding T3 too, but i guess its all trial and error
I get what you mean about going slowly and literally 'feeling' the changes. Im just checking out the best prices of T3 Thybon around, gosh the big chemist chains do make it difficult for us, they are just not interested, ive found a smaller chemist who is a possible and just running the same request via a couple of others, it seems to take them so long to get their prices sorted......aaarrhhh.
Every best wish to you Waveylines, its fantastic to feel supported, G.
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