Hi All, would appreciate some guidance! I’m presently transitioning from Levo 0.112 + Cytomel 5mcg, to NDT. My endo seem to be confused/ uneducated in regards to how to proceed, so I have been tweaking my dose as necessary. He was reluctant to make the change, stating that it’s difficult to adjust doses. We agreed to start at 75 Levo + 30mg NDT. It was good for a couple of weeks, then the headaches, weight gain and hair loss intensified. It has been a rollercoaster for the past year. I started tweaking doses and he had no objections. ( 60mg NDT +50 mcg Levo) I started feeling a little better, until he told me that my FT 4 was too low, so he increased Levo to 75, stating that 60 NDT had only 15mg T4 & 5 mg T3. That’s when all he’ll broke loose. Labs on this dose is as follows: FT3: 4.9 (2.5-58). FT4: 14 (9-19). Tsh: <0.01 (0.32-4.00) Ferritin: 187(5-272), Vit.D: 143 (75-250) B12: 1028 (138-652). Was supplementing sublingual B12, so I stopped for now. Where do I go from here? I’m sweating more than usual, sometimes feeling cold, having bowel movement after each meal, interrupted sleep, no motivation although energy level is ok. Lost 10 pounds over 3 months (good) heart rate at rest: 60-64. Just a little reminder, I had TT for papillary cancer in 2017. I’m 66 years old, weigh 77 kg, height 5’6”. I’m now stuck and overwhelmed, can’t really trust my Endo’s judgement. Any suggestions would be very appreciated. Thanks!
Lost and frustrated: Hi All, would appreciate... - Thyroid UK
Lost and frustrated
Which NDT are you taking? They are not all the same.
Also which levo? Some people can only tolerate a particular brand.
Thanks for replying Anthea! I’m taking Synthroid & ERF NDT, that’s all it says on the container. I have been taking the same brands forever.
Rosebud1955
stating that 60 NDT had only 15mg T4 & 5 mg T3
He is wrong. 60mg NDT = 1 grain.
1 grain NDT = 38mcg T4 and 9mcg T3
Be careful not to mix up mg (milligrams) and mcg (micrograms), there is a very big difference. T4 andT3 in any form do not come in mg - it would blow your head off!
Hi Susie, thanks for replying. The Synthroid is in micrograms (0.112 mg) Do you think my current dose is close to my dose of Levo + cytomel? That’s where my confusion lies. Based on my present weight loss, frequent bowel movements, and sweating, I’m thinking that my dose is a little off. It’s confusing because my heart rate is only 60-64. Do you think I should decrease the NDT a tiny bit? I eventually want to be on NDT and maybe a a tiny bit of Levo to help regulate my dose. What’s your take on it? I know each individual is different, but I do value you opinion. Thanks!
To be honest I have no experience of changing from synthetic to NDT, using NDT plus adding some synthetic, and I don't think there is any way of saying X amount of NDT is equivalent to Y amount of synthetic or any combination. So I'm afraid I'm no help here. Humanbean has given you the best answer below so I'd take it from there. I really think it's a case of just trying and see what suits.
Thanks, I will.
1 grain of NDT is approx equal to 100mcg of T4 in its action.
I think there are differences of opinion on that, shaws. The makers of NDT claim that 1 grain of NDT is equivalent to 100mcg of T4, but I think quite a few people have found that to be not true.
As SeasideSusie said above :
1 grain NDT = 38mcg T4 and 9mcg T3
This would suggest that 9mcg T3 is equivalent to (100 - 38) mcg T4 i.e. 62mcg T4, suggesting that T3 is nearly 7 times as potent as T4, and this is simply not true.
I think a lot of doctors "overvalue" T3 because they are scared of it. Many people, including me, have found that T3 is roughly 3 times as potent as T4.
So that would suggest that 1 grain of NDT is equivalent to :
38 + (9 x 3) mcg T4 i.e. 65mcg T4.
If 1 grain NDT is "worth" 65mcg T4 then it makes sense of people feeling they are being under-medicated.
I’m presently transitioning from Levo 0.112 + Cytomel 5mcg, to NDT
112 mcg Levo + 5mcg T3 is equivalent to (112 + 15)mcg T4 = 127 mcg T4.
To find out what this is in NDT terms divide the total by 65 :
127 mcg T4 is equivalent to roughly 2 grains of NDT.
Hi, thanks for replying! So if 60 mg NDT is equivalent to 100 Levo, that suggests that I’m probably over medicated. (100+75) would be way higher than my regular dose of 125mcg Levo. That would explain my weight loss, sweating and frequent bowel movements. What would you recommend? I was thinking 62.5 Levo +45mg NDT. I eventually want to be on just NDT but it’s difficult to regulate. Endo thinks 8 will have to add a small amount of Levo. That’s where my confusion lies. Any suggestion is much appreciated. Thanks!
What is your ultimate aim? To end up on NDT only? To try Levo + T3?
Or to end up on some combination of all three - NDT, Levo and T3?
The more complicated the combination the more difficult it will be to alter dose if things aren't going well. After all, if you are taking three different hormone products and you don't feel well which one will you change?
The other thing to bear in mind is that some people don't do well on certain makes of NDT, Levo or T3. So that adds another layer of complexity to the problem - which makes are causing a problem and how can you tell when you are taking all three whether it is a dose issue or a maker issue?
In your shoes I would suggest switching to 1.5 or 1.75 grains of NDT on the assumption that you might need to increase dose after a few weeks.
It isn't unusual for some people to need 3 - 5 grains of NDT. Two grains isn't a high dose.
Also be aware that it takes a while for the body/heart to adapt to T3. It appears to be common for people to have periods of a fast heart rate (HR) for a short time after taking a dose of something containing T3. But then the heart rate normalises, then it can speed up again when the T3 "runs out".
But these issues aren't dangerous assuming your HR isn't going dramatically fast for a very long time.
Incidentally, in the UK there is a system for recording adverse effects from prescribed drugs and hormones. The system started (pre-computer) in 1967, although for many years there was little data recorded. But since computers and the web became available it is now easier for adverse effects data to be recorded. Since 1967 there have been zero deaths in the UK blamed on NDT and T3. And there have only been 21 deaths for Levo in that time.
You might find this link of interest :
healthunlocked.com/thyroidu...
but I doubt you will be able to look at pages from the UK government being in the USA - but I could be wrong.
Hi, thanks for taking the time to explain. I eventually want to take NDT only. I’m presently on 45 NDT and 62.5 levo. I feel o.k but having frequent bowel movements, sweating, and loosing weight, low heart rate 60-64. I just want to stabilize. I previously tried combination of levo + cytomel. I experienced daily headaches and head pressure so I think the cytomel was a problem. I can’t survive on Levo only, the fatigue was unbearable + weight gain. I really feel good on NDT but just not able to come up with the right dose. My endo is not knowledgeable, actually scary. He allows me to tweak my doses so that’s helpful. I have to tell him when to order blood work etc… Had it not been for this wonderful forum, i would be bed ridden. I’m so thankful to all.
1 grain of NDTs has the approx 'effect' of 100mcg of T4 but it does have all of the hormones a healthy thyroid gland would have. Blood tests will not correlate and the emphasis is always about how the 'patient feels' on a particular dose. Gradually increased until symptoms resolved.
When NDT was initiated in 1892 there were no blood tests at all and it was the skill/knowledge of the doctors to gradually increase dose until symptoms were relieved and patients no longer died. due to hypothyroidism.
Hi Shaws, thanks for replying. So, what dose ofNDT would be equivalent to 125 mcg. of levo. I eventually want to take NDT only, but my Endo says it’s tricky to regulate NDT only, so he will add a small amount of levo to help me regulate the appropriate dose. My brain is too tired to understand it all. Thanks!
I am not medically qualified but, like many on this forum, have tried approx everything that's available (even without a prescription). I am now on T3 only - prescribed,
The problem with the Endocrinologists is that they'seem to be fixated upon theTSH alone and only take notice of the it and I think they get confused with NDTs as it contains all of the hormones a healthy gland would have.whereas they usually deal with levo alone (i.e. T4) which should be converted to T3. T4 is inactive and has to convert to T3 - the active thyroid hormone.
How could doctors from 1892 onwards have the knowledge that NDT saved many patients lives as before NDT nothing was available and we just died. There were no blood tests as they hadn't been invented.
When NDTs were given, small doses were added slowly until patient felt well -there were no blood tests. The following are some links by Dr John Lowe and I hope is helpful. Dr Lowe was a scientist/researcher/doctor. He couldn't bear people suffering unnecessarily and would never prescribe levothyroxine.
This is Dr Lowe's history (he was an adviser to TUK but had an accident and died.
web.archive.org/web/2010103...
He also stated that blood tests were invented so that Big Pharma could have more profits.
Good morning :
I switched from 125 mcg T4 to NDT :
You can monitor NDT just as you would T4 - I don't understand your endo's reservation and to keep you on some T4 as well as all this is doing is confusing you both and eroding the unique ratio of T3/T4 found in NDT and which works very well for very many people.
On NDT you dose to the relief of symptoms and not a blood test or range both of which were introduced to be used with Big Pharmas T3 and T4 thyroid hormone replacements.
Your TSH will likely be low suppressed : your T4 may well be lower than when on Big Pharma preparations but your T3 should be proportionately higher and you track on the T3 .
I take 1 dose a day at around 3 am when I wake for a toilet break.
I take a blood test at around 10-12 hours later - just once a year now more for my vitamins and minerals.
My T3 comes is at around 90-110% through the range with my T4 at around 25-30% :
If I eat breakfast my levels are lower than if I fast.
If my ferritin has dropped this shows in correspondingly lower T3 and higher T4 readings.
I wouldn't like to wait 24 hours and then have to drive to get a blood draw - I hate driving at the best of times - so this could just be me - but I know I'll be better at doing everything after taking my medication.
P,S, Did you take bench readings of T3 and T4 before you switched to NDT ?
I monitored and dosed myself according to symptoms and my blood pressure and pulse readings taken twice daily remained constant - and my temperature rose from 35.4 to 36.6 where it usually hovers now, 4 years on.
P.S. Here is testament to my memory not being great as I'm replying here though now reading around find I wrote to you 3 months ago in another one of your posts - apologies for the repetition - !!
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