I’ve been on NDT since November and slowly increasing.
I’m on 1 & 1/2 grains at 6am and 1 & 1/4 grains at 2pm.
I started feeling well, but recently I’ve noticed I’ve got major dark circles under my eyes (noticed about 2 weeks ago) and they are puffy. I’m also experiencing issues remembering things and feel not earthed, jittery, my skin is also dry.
My weight is so unstable.
The positives are I have more energy and I’m starting to feel warmer.
I know they say blood tests are irrelevant while on NDT, but I did one in January.
I think I messed up as the blood test was taken about 17 hours after my NDT, so I presume my results are not correct?
Here they are
2nd January
TSH 0.103 (0.27-4.20)
T4 12.600 (12.00-22.00)
T3 5.44 (3.10-6.80)
I’m wondering if my NDT is working at all.
As what I can’t understand is that when I was on Levothyroxine (which made me worse) my T4 was always higher, yet NDT contains T4?
I’m so confused, is NDT not working am I heading in the wrong direction?
Best Wishes
Peanut31
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Peanut31
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The FT4 is bound to be lower when taking any form of T3. Some people do need their FT4 to be higher, so they add a little levo. But, that doesn't mean your NDT isn't working.
Do you always take your NDT on an empty stomach, one hour before eating or two hours after, just like levo?
Yes, my morning NDT is taken one and a half hours before breakfast, and I don’t eat anything till lunch time 11.45pm.
My 2pm NDT is taken a hour after my lunch, I then don’t have anything to eat until I get home from work at 5.30pm.
I make sure any Iron tablets are taken at night.
I don’t know what to do? I’ve been increasing my NDT every 2 weeks by 1/4, I’m due another 1/4 increase next Thursday, so I will then be taking 1&1/2 6am & 1&1/2 2pm.
Am I increasing too fast now, my hubby suggested adding T4, but I don’t want to muck things up.
I seem to always be hitting brick walls.
Another spanner in the works is I’ve been diagnosed with Chiari malformation MRI scan confirmed this. This would explain my neck stiffness, ears being blocked, balance issues, and pounding and ringing noises in my ears, extreme headaches.
I’ve seen a specialist and I can take medication if I can’t cope or worse case an operation.
At the moment I’m managing to deal with it as it not bad.
It should be two hours after eating, not just one.
It might be a good idea, once you increase to 3 grains, to hold steady for six weeks and then retest. Give things time to settle. And, if the next labs suggest you should increase again, increase every four weeks, rather than two. It can be so easy to miss your sweet spot.
Many members have found it hard to raise NDT if they have a cortisol problem or low iron levels, as either can make the acceptance of T3 difficult.
Also, because you have Hashimotos, depending on your present immune state, TSH suppression may be required to discourage thyroid activity but if the rate of T3 acceptance in your body is slower than the rate of increased NDT required to keep TSH suppressed, you risk a Hashi attack and feeling very unwell.
GG has already explained blood tests & I don’t think them irrelevant when medicating NDT as it is important not to allow FT3 levels to become too high. Particularly when adrenal issues may be present.
You said in a previous post that your “DHEA and other hormones are low”. Are you addressing this ? Are you supporting adrenals glands ? Have you had ferritin tested ?
I was advised (not on here) to take a very small dosage of DHEA, however, I’m not sure if you looked on my profile, but, I started to have awful symptoms of headaches, blocked ears, stiff neck, this took me to A&E twice the pain was unbearable.
I have recently been diagnosed with Chiari malformation which showed up on my MRI.
I have seen a neurologist. All my symptoms headaches, blocked ears etc are symptoms of this.
At the first I wondered if it was my thyroid medication, DHEA so they took a back step.
Hi Peanut31, I’m on NDT also just for 5 months now. I was on Levothyroxine previously for 11 years.
My T4 is always very low now on NDT. I don’t think there is much T4 in NDT it’s mainly T3. If you had this blood test 17 hours after taking your last NDT tablet and your T3 was 5.44. I would consider that your T3 is over medicated. As your TSH is suppressed also.
Next blood test do it without any time lag. See what your levels are like with your normal dose reflected. You can get the same symptoms if over or under medicated.
My Endocrinologist who is private only. Has advised me to stop NDT and switch to liquid thyroxine. which is provided by the NHS. I have just started it. It is so much more easier to control. As it’s liquid you can take a specific amount tailored to your needs. I can go up or down if required in as little as 5mcg’s. So now I don’t have to jump or reduce by 25mcg. I’m very sensitive lately to thyroxine for some unknown reason after 12 years on it. So control and consistency and keeping it steady is key for me just now. The liquid seems to be very good so far.
If your T4 is too low try taking a small amount of Levothyroxine as increasing NDT will increase your T3 also, which looks on the high side.
NDT is mostly T4 - usually about 38mcg T4 and 9mcg T3 in each grain. It is recommended to leave between 8 and 12 hours between last dose and blood test to get representative reading. So basically what you are advising is not useful. With NDT you don't increase of decrease by 25mcg at a time, but by 1/4 grain: approx 9-10mcg T4 and 2mcg T3. UK endos aren't trained to understand NDT or T3, which is why they tend to try to get patients back on T4 even if they have trouble converting. It's great if it suits you, but useless if it doesn't
Sorry if you think I’m was not giving useful information. I’ve been on NDT for several months. Each time I’ve had my blood done my T4 is far lower than it ever was on Levothyroxine. So low it’s under the range. And my T3 is much higher, well within range. I was informed that NDT has more T3 than T4 in it. I know you don’t reduce NDT by 25mcg and that it’s a quarter of a grain.
Sometimes for example when a person has had thyroid cancer they need to keep their TSH at zero. If they get bloods done well after taking their last dose. Then the Endocrinologist will request you increase your dose as the TSH will be higher and needs to be zero. Leaving hours when getting bloods done generally shows a TSH rise. Cancer suffers need to keep it suppressed. This is my sisters situation. We are all very different when it comes to thyroids and thyroxine. I was just trying to offer help from my own personal experiences. My Endocrinologist does prescribe T3. He says NDT is not physiological.
That's pretty usual for someone on NDT - the tests were devised for those on T4 only. Some people need T4 as high as mid range when on NDT but most do fine with it at the bottom of the range or even under range. NDT isn't physiological, but nor is T4 only.
I’m interested in your post and wh your Endo suggested that you stop your NDT? I didn’t know that you could get liquid thyroxine that’s a good idea and would be useful for someone like me as I find uncoated tabs very difficult to swallow. I have been wondering about going back on Levo too from Erfa for various reasons. I was on it for about 12 yrs previously also if I can do ok on it it’s easier to source - free on NHS. How did you change back to Levo initially and how are you now feeling on it? Ihave been on NDT much longer than you about 8 yrs so Imight have a battle on my hands. Did you have any problems to get the GP to agree to liquid thyroxine? I find that there is not effective enough communication between my private Endo and my surgery it’s as if the GP’s don’t understand the End prescribing NDT and they close their minds to what he is doing
I was having troubles on Levo tablets. Couldn’t understand as I had been on Levo tsblets for 11 years. I had to keep reducing my dose over 5 years from 125 daily to eventually 75 daily. Each time I took it my legs would buckle and even paralysis at times. Very odd. I’m undiagnosed! I stopped reluctantly Levo for one week and all my symptoms went away like a miracle. I was put on NDT by a private Endocrinologist. I have also struggled on NDT. Mainly to do with getting my dose correct so my legs won’t crash out on me and balancing T4,T3 and TSH. For me my T4 is always too low on NDT and T3 can go too high. So a new Endocrinologist suggested liquid thyroxine. I felt much better initially but now having the same issue as tsblets Levo and NDT. At least with the liquid thyroxine i can manage the amount I take as you measure it in a syringe. So now I split my dose throughout the day to avoid a big dump of T4 in one hit. It seems my issue is to do with metabolic rate increases. As I also get my symptoms with any form of exertion, which collerates with thyroxine uptake ref the metabolism. My GP had no issue in prescribing it for me. He’s just done my repeat. It’s more expensive than tablet form not sure how much more expensive. I think that’ll be the only sticking point. You could request it to your Endocrinologist or GP and put your case across best you can. It’s so much easier to obtain for me now than NDT. I haven’t had my bloods done yet while being on it, I hope that’ll be ok and no conversion issues. I do feel better if I can get my dose right each day. It’s been difficult for me transferring from NDT with my odd situation. I tried doing NDT and some Levo at first but for me that didn’t work. So I decided to stop NDT and switch to liquid. First 4 days I was like a new person. But then day 5 I got a little optimistic and took too much liquid in the first half of my day and ended up on the floor. So then I reduced slightly again and was ok again. I’ve put on 2 stone with NDT in less than a year. I’ve lots of fluid retention in my legs especially. I’m hoping moving to liquid form may help shift this.
Good luck with your GP and Endocrinologist. It has been a good move in terms of getting a consistent dose and knowing it’s the right amount instead of guessing. Especially for people like me who are hypersensitive for unknown reasons. Or like you who have trouble swollowing tsblets. Obviously it’s only T4 so if you have conversion to T3 issues it may not suit you. At first maybe do half NDT half liquid. Your Endocrinologist could help with a plan.
Maybe you could check with your pharmacist to see how much it costs in comparison with tablets before you ask, so you have armed information.
Good luck. Any more info you need just message me.
Just thought I’d share my experience Peanut31, I didn’t feel well on NDT only and added T3 which I take with every dose of NDT. My T4 Level is rather like yours but my T3 is higher (my tsh is suppressed, but it always is). Wish you good luck with your increased dose but if it isn’t the answer for you, here’s another possibility. x
Hi Peanut31, I like you struggled to increase my NDT over 1.5 grains so I held it there and added in T3. I had low cortisol. I dealt with that and recently needed an increase so I increased 1/2 grain and have coped well. Someone above mentioned the timing of your blood, I always do mine 12-15 hours after the last dose. Also what brand of NDT are you on? I know people were struggling with Naturethroid, it went out of stock for ages and seems like the formula was changed when it came back in production. Good luck
Hi, I would like to add my twopence, as I am not reading any similiar to this. Me too, hashimoto, ndt for several years, my lab test are quite similar, my tsh is lower. I was taking 1.5 morning and 1.5 around 5pm. I felt like I needed to rise my dose. Then someone suggested a book, and started taking Iodine (iodoral). I know there are many controversial opinions about this, saying iodine will make you worse if you have hashimoto. And really I started having hyper sympotms after a few days! like rage, sweating, hot flashes all the time (in december, me!), so what I did was lower the ndt. Now I am taking 1,5 grains in the morning and 1 in the evening. It seems the lack of iodine can make it difficult for the body to assimilate the ndt, and I usually do not eat much fish or seaweed, so it could be that i was low on iodine all the time. I could not find a single lab that would test my levels of iodine prior to starting it. Hope this helps.
I have been searching more posts about iodine here, there are several, but all against taking iodine (first of all without testing). I do not want to steal the post of Peanut31, but if any has any experience related, would love to hear it.
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Feeling worse on NDT- should I change my dose?
Ndt
