I feel I need to just pop on today to ask how long will it be until I start to notice a difference in my body on ndt?
31 days today and I'm pleased to report no gastric issues 👏 this is the longest I've ever been on thyroid medication without suffering horrendous side effects, my instructions we're to take one grain 0.5 for 2wks if I have no gastric issues take another grain [2 grains in total] for the next 5wks then get bloods done.
OK ...I did as instructed but after around 4 days on the 2 grains [0.5...0.5] I started to feel slightly hyper symptoms 🤔 slight tremor in hands and sweating way more than usual , and when i move around I'd get a red tomato face 🥵, my sleeping is also suffering ..can't sleep ..[ I took 0.5 one grain at 8am then the next 0.5 one grain at 2pm .
After another 2 days I felt slightly jittery,hyper so I decrease it down to one and a half grains thinking maby I'd increased to much.
I've been on one and a half grains since , but nothings changed with sleep pattern but tremor as gone but not sweating and my face flushes when getting up and move around 🥵...I just can't sleep at night but want to sleep all day , ive tried taking it before bed to and thats made no difference 🙈...I had an early appointment last week and we're up at 7.15 [ it killed me😔] so I thought..." I'll sleep tonight...but no still wide awake at 2am, 3am and so on😡.
So...I know my TSH was 45.66 Ts very below normal range, classed as very hypo by gp and endocrinologist ....so could it be I'm still hypo? If so why the hyper symptoms 🤦♀️ I'm a bit confused atm but of course I don't think I'm going to be doing cartwheels down the street after one month on ndt🤷♀️
Advice from members who are or have taken ndt and how you got on with it would be much appreciated ❤️❤️❤️
Thanks
Written by
birkie
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I'm guessing the problem might be that the ratio of T4 to T3 in your compounded NDT isn't suiting you.
It may be that you need a little less T3 and a little more T4. Quite a few people who take non-compounded NDT (e.g. Armour, Thyroid-s etc) find that they do better by adding a low dose of levo to their NDT, typical 25mcg.
Not necessarily. People taking pre made NDT tablets can't change the tablet ingredients, so they have no choice but to add either levo or lio tablets accordingly, to get the T4/T3 ratio that works for them.
But because Roseway are making your NDT from scratch, they may be able to make up your capsules to a different ratio. Yes, it might mean adding some synthetic T4, but it would be a small amount of the raw ingredient, not a pre-made branded tablet.
Worth bearing in mind when you have your consultation. Blood test should give an indication. e.g. your FT3 might be too high and/or your FT4 might be too low.
Yes my TSH was 45.66 Ts extremely low very hypo, the lovely adviser at roseway mentioned that very thing stating it may take some time for your body to come out of hypo maby several months on the ndt.
She advised after 7wks to get my thyroid bloods done...now my surgery have actually agreed to do my thyroid bloods in around 3wks [ win there] don't have to pay for private ones, and it will be interesting to see my ratio between T4, T3 ..my surgeon in Liverpool who I'm under for primary hyperparathyroidism did a thyroid panel when I was on synthetic T3 [ still struggled on it due to gastric issues] but I'd taken my 10microgram dose at 4.45am and she took bloods at 10. 45am my T3 was 11.04 to high but the T3 had been in my system nearly 5 hours she felt I could be hypersensitive to T3🤔 although I never really got the full SP off her as to why that could be a factor, she only said "sometimes the T3 hormone can remain in the blood stream not getting into the cells....🤷♀️ is this resistance I wonder???
You have been very hypo indeed and no wonder you are needing to sleep throughout the day. You would prbably be doing the same on any type of thyroid hormone until you get closer to where you need to be dose wise.
My instructions we're to take one grain [0.5] After 2wks, and if I have no gut issues then take 2 grains 0.5..0.5. ..I split my dose but as I said I started to notice hand tremors and more sweating jittery ect fast heartbeat to, so I decrease to one and a half grains, still on one and a half now....tremors have diminished but red face and sweating fast heartbeat are still with me , with insomnia at night and wanting to sleep through the day🙈
I'm with Graves post RAI thyroid ablation 2005 -and started self medicating NDT 2018.
I only take 1 dose - 1 + 1/2 grains at around 2/3 am at toilet break -
when I increased to 1 3/4 grains I started feeling a bit uncomfortable in my skin and a bit edgey - so dropped back down to 1 + 1/2 grains and took a blood test 8 weeks later -
my T3 was then 110% and my T4 25% through the ranges - the exact opposite of when on T4 monotherapy and I felt very well and this is still my best dose on NDT.
My blood pressure and pulse remained stable and I tracked my temperature slowly rise from 35.4 to 36.6 where it tends to hang around most days.
Maybe try taking just 1 dose early morning and slowly build it up ?
I split it now..because I was taking one grain 0.5 at 8am took one full dose🙈 maby I should have split that dose🙄 but took advice from roseway clinic, I split the 2 grains one 8am one 2pm...that's when after around 5/6 days I noticed the hyper symptoms.
So dropped to one and a half split one grain 0.5... 8am...half grain 2pm...
I'm going to go back to one grain and split that instead of taking the full dose see how I go then👍 it probably just requires some tweaking....at least I don't have to deal with this💩💩💩 anymore 😂😂
I find taking it in the middle of the night my stomach is as empty as it's ever going to be - and around one and half/two hours later I sense it's taking effect in that I'm stirred a little ( but not shaken !!! ) and easily fall back to sleep for a couple more hours.
The only I kick in I felt was the hyper one, knew right away maby its to much 2 grains...I did change to taking it at night but never felt any difference,maby didn't give it long enough, I dont have anything on my stomach I don't have what you call a breakfast just a cup of tea after one to 2 hours, if I feel OK I may have a ryvita don't eat cereal it effects my gut , coupled with the synthetic medication, I had server diarrhoea 🙈 even eaten on it own it makes me run to the toilet. So in the morning my stomach is empty and I have my tea at 4 , 4.30 no later..don't eat after my tea 👍
Historically I never ate breakfast - and now it is either an egg and / or some chicken liver pate - no bread - and some grapefruit segments at around 9.00 am - but being up at around 6.00 am I do enjoy my coffee very soon after rising.
I eat my main meal including protein around mid day and in the afternoon some fruits and 2 cups of tea by 6.00 pm and that's me done for another day.
Isn't it weird tho, I'm eating way less now on protein also ..meat /fish with salad , no potatoes or carbohydrates no bread for me either, or rice no dairy because of my colitis and lactose intolerance...and I'm fatter that I've ever been😡🤷♀️ and I have a watershed.. never eat before bedtime
It's likely water, once optimally medicated it will likely fall away -
I found after around a good 9 months I had a waist - and had dropped round a couple of dress sizes - I'm still with a large frame 5.10 and size 9 shoes - and probably now around a size 18 - not that I've bought any news clothes as my life style at 77 is not what it was.
What about trying to track your progress on physical, factual readings -
I found it helped me understand my body better when I started self medicating NDT :
AM & PM readings blood pressure, pulse and body temperature -
Nothing much happened on the first 2 for me - but I was able to track my temperature slowly rise from 35.4 to 36.6 - where it seems to be most days now - 6 years on ?
I have my blood pressure monitor by my bedside and I have my apple watch on ..I noticed my heart rate spiked when taking the 2 grains that along with the hands shaking and the sweating more , I recognised it as perhaps taking to large a dose but it was what I'd be told to do🤷♀️ obviously we're all individuals and think the 2 grains after 2 wks was to much for me.
My heart rate spiked as seen on the blood pressure monitor but my BP was normal, I'm now going to re set and take half a grain per day for 2wks split then try to increase slowly 👍
Yes - monitor yourself as suggested so you have bench readings to work from as you settle and then slowly try again to find your best dose on the NDT.
2 grains seems to be the ball park dose -
I read that when I got to 2 grains - I was to stay on that dose 6-8 weeks and then run a blood test and if my T3 had not moved from the bench mark reading and no symptoms alleviated it suggested maybe NDT not the best treatment option.
I think without a thyroid and Graves we maybe need less - I only managed 1 + 3/4 grains and recognised symptoms I'd had when with Graves - edgey and just uncomfortable in my skin so dropped back down to the lower dose of 1 + 1/2 grains where I'd felt ok.
My blood test on 1 + 1/2 grains gave me a T3 @ 110% through with a T4 @ 25% through the ranges which was the exact opposite in percentage terms of what my results had been on T4 x 125mcg monotherapy - not that you'll have a comparison as you were never able to tolerate any other treatment option for any length of time.
I was told by the representative at roseway to take 1 grain which is 0.5 for 2wks if I'm OK no side effects then go to 2 grains for the next 5wks then get thyroid bloods done.
But I think like you say I've probably taken to big of a dose .so I'm going back to 1 grain and I'm going to split it ..half and half then get bloods done in 3wks👍
Yeah that's fast, after a few weeks you can feel the dose build up. Try that, yeah, flushing face can be overdose and high cortisol, insomnia the same. You're definitely overstimulated. Blood test would definitely help
I can’t believe after what your body has been through you would have in any way ‘recovered’ in this short time. birkie give yourself a chance. Even if you had just had flu you could not expect to be fully recovered in this short time.
We are full of expectations. I find it heartbreaking for myself that T3 was not a ‘magic bullet’ for me. However I am still learning stuff.
I know nothing about NDT but I would trust yourself and the replies you have had.
Basically it sounds like you have gone too fast over too short a time. Your poor body has a good bit of catching up to do!
I should think you will take quite a time to come down from that high TSH birkie . So glad your digestive problems have eased on NDT though. I would have raised it by only 1/4 grains at a time, and Roseway will give a lower dose than that. I take 0.625 grains at 8 am, 1/2 grain at 3.30pm and 0.625 grains at 11 pm, but will lower early dose to 1/2 grain when my new prescription comes (on order now). Sleep at night is very hit and miss, and rarely get a full 8 hours together. I hear every car going out during the night, although very quiet here during the day. Some nights do not manage to go off to sleep until about 2 am. Hope it begins to work well for you soon birkie .
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