Hi
Have the opportunity to try NDT but I am not sure how to titrate the dosage. It was recommended to start of with 1 grain in the morning and 1/2 grain in the afternoon. Currently taking 137.5 mcg Levothyorxine ( T4).
Any advice would be greatly appreciated.
Thank you
Kaycee
The recommended protocol is to start off with 1 grain of NDT (60 - 65 mgs) and increase by 1/2 grain every 2 weeks or so. Then stop increasing at the 6 - 8 week point and get labs done to see how things are going. You want Free T 3, Free T 4, TSH and anti-bodies (just in case of hashimotos). What are your labs results now?
If at any point you start to feel anxious, increased heart rate, nervousness, insomnia, irritability etc... these are signs/symptoms of being hyper. So be prepared to back down to a lower dose of NDT where hyper symptoms are alleviated.
It is always a good idea to keep a log/notebook (nothing fancy) of daily body temps/heart rate and blood pressure (if you have a bp cuff machine), dosage of NDT and how you are feeling, generally. Do take temps about 3 - 4 pm in the day. This is when body temps are normally at their highest.
If conversion is your only problem, you should feel improvement within a few days/weeks. It does take a while for the body to adjust to having T 3 in the system. If your B 12, D 3 and/or iron numbers aren't optimal, it can make it difficult to optimize your NDT dosage. So when you have labs done, get those values as well. Some folks have to try to tweak their NDT dosage and work on the others as well at the same time. Be patient.
Thank you, phoenix
Diagnosis of Hypothyroidism 10 years ago and treated with T4 only.
Hashimoto's Thyroiditis diagnosed last year and same treatment.
TPO Antibodies: 175 considered High
TG Antibodies: 1136 considered Very High
TSH: 2.28 considered High
Total T4: 71.9 considered Normal
FT4:15.4 considered Optimal
FT3: 3.9 considered LOW
Taking Vitamin B complex
Vitamin A, C, D, Cod liver Oil and Zinc
had Cholesterol level checked and that was within normal range
Also, does the T4 dosage have to be reduced when taking NDT or can it be stopped altogether?
It is a bit confusing and feel apprehensive as GP is not supportive.
Thank you again
Kaycee
Without ranges, hard to know where you stand. Free T 3 should be in upper range and Free T 4 should be in mid-range. TSH will be close to 1+/1-. Remember, normal is not necessarily optimal. Lots of folks have 'normal' readings but are suffering with hypo symptoms.
If you have hashis, taking NDT may be problematic. There is some school of thought that opines that if your body is attacking your thyroid gland (which is what hashis is), it may attack the NDT. I would suggest getting those antibody numbers down. Some have managed this by going gluten free and by taking selenium (no more than 200 mcgs - 400 mcgs per day) and eating as clean as possible and as you can afford.
I was taking Synthroid for a year or so and was miserable with hypo symptoms (especially profound exhaustion and body aches/depression). Doc agreed to switch me to NDT (I am in the states) and it was like a miracle. I did stop Synthroid (synthetic T 4) one day and start NDT the next day. I was in so much misery, I didn't care if it would create problems or not..lol.. After six weeks, doc took blood tests and continued increasing. He followed me pretty close with labs that first year on NDT. Now I just get labs once per year.
This is just my experience. I did not have hashis and my other values (B12, Iron, D3) were good. Apparently, conversion was my only problem and no adrenal involvement.
I was such a believer after my results with NDT that I persuaded my sis to try NDT. She did have hashis and had been taking synthetic T 4 (synthroid and levo) since the eighties with no problem. Her doc agreed to prescribe NDT and after just a week, she couldn't take it. She had heart palps, insomnia, nervousness.... you name it. She went back on Synthroid and was happy as a clam. So, NDT isn't for everyone.
Phoenix, you can't just stop increasing and test. You need to leave 6 weeks after the last increase before testing. 
goose... it all depends on the increase, how much and if you reach a good place with body temp, heart rate and the alleviation of symptoms. That can't be quantified, rather, it varies from person to person. Plus, a person could take 6 - 8 weeks to get to that good place and you are saying to wait another six weeks after last increase? Lots of things can be wrong and can go wrong in that six weeks. Here in the states, docs will test every six weeks for a few months until dosage of NDT is determined. I've got a feeling that I have misunderstood something, my friend.
Yes, I'm saying to wait another six weeks after the last increase, so that the T4 in the NDT has time to be fully synthesised. I don't know what you've understood, but there's really not much point in testing right after the increase.
Wow... been on several boards for years now and honestly... that is the first time I have ever heard of waiting to test for a whole six weeks after the last increase. I am not saying you are right or wrong... just have never seen that before.
Makes no sense to me as T 3 is absorbed and begins it's work in short order and the T 3 is what is really going to make the difference IF conversion is the primary problem. T 4 is T 4 whether synthetic or natural and, in this case, she has been on T 4 for some time. Again, if conversion is the primary problem, there will be little or no change in the T 4, just the NDT compensating/providing the lack of T 3.
One could be in danger of being under medicated and under treated for that whole six weeks after last increase. It never hurts to do labs to see what is going on and how you are reacting to the NDT. The labs can also reveal if something else has reared it's head since beginning the NDT protocol. We always hope and pray that all goes smoothly and for many, this proves to be the case. But there are also those who hit the proverbial bump in the road and find they have other things to work on.
greygoose... I appreciate how hard it can be with the NHS to get labs compared to here in the states. Maybe that is why the reluctance to get labs done any sooner? Like I said, when one first starts NDT OR Synthroid here in the states, it is pretty routine to get regular labs until a dosage is found and most symptoms are relieved.
there will be little or no change in the T 4, just the NDT compensating/providing the lack of T 3.
Are you 100% certain of that? There are some that say with T3 in the mix, conversion is likely to improve. Do you know for certain that it doesn't? And, NDT only contains a tiny weeny dose of T3, so quite a bit has to come from conversion. Besides, T3 isn't as instant as people think. It doesn't build up in the same way that T4 does, but it does build up to a certain extent, and some improvements take time to take effect. Occasionally, when building up the dose, it's good to take time out and let things settle.
One could be in danger of being under medicated and under treated for that whole six weeks after last increase.
What danger? No more dangerous than waiting six weeks for a test when taking levo only. I think you're exaggerating a little bit with that.
The labs can also reveal if something else has reared it's head since beginning the NDT protocol.
Like what?
I appreciate how hard it can be with the NHS to get labs compared to here in the states. Maybe that is why the reluctance to get labs done any sooner?
I think you mean 'impossible' don't you? But, even if self-treating and paying for your own labs, it makes sense to wait a while after a certain number of increases - plus if you've got to pay for your own labs, not many people can afford this continual testing.
per the sttm website... stopthethyroidmadness.com/n...
"When first starting out, one grain (60/65 mg) has been a safe “starting dose” for most, patients have reported–but it’s individual. Nothing is black and white. Why just one grain? Because patients discovered that the body may need to adjust to getting direct T3 again, and there may be other issues which can reveal themselves as they raise, such as sluggish adrenals or low iron levels. So starting higher carries a risk of an overreaction if either of the latter two are present and not yet treated, patients have learned the hard way and reported back about. Not everyone has issues with either, but it seems important to mention it.
Do some doctors start patients lower than one grain? Yes. They may feel there is a good reason. But patients who want to start lower learned to keep going up, bit by bit, to counter the feedback loop suppression. i.e. those lower doses have made some patients feel even worse if they stay on them too long. But again, it’s individual.
And again, no matter what patients start on, they have reported learning the hard way that they have to make sure their iron and cortisol levels are optimal.
How do patients raise NDT?
Those who start on natural desiccated thyroid (one grain is common apparently) report that they found it wise to raise by approximately 1/2 grain every two weeks or less to prevent hypothyroid symptoms from returning due to suppression of the internal feedback loop in the body, which can happen if we stay on a low dose too long before raising.
They also want to introduce the direct T3 wisely so their bodies can adjust to it.
Most patients start to slow those raises down somewhere in the 2 grain area, or as they are approaching the 3-grain area (some are optimal in the 2 grain area). The slow-down is also because it gives the T4 time to build (which can take 4-6 weeks, literature seems to state) and show its conversion-to-T3 results…then inch their way up if they know they aren’t optimal, with their doctors assistance. Labs are usually needed around this time.
Some patients end up in the 3-5 grain area when optimal, some on less, and some on more. It’s very individual. (Janie Bowthorpe is on 3 1/2 grains, for example; used to be on 4 when she was estrogen dominant).
REMEMBER: we have to have optimal levels of iron and cortisol to raise without problems, as reported by patients over the years. "
I'm sorry, but what is your point? It more or less says the same as I said, only I would say six to eight weeks rather than four to six.
I started on NDT after a year on levo. I was on 125mcg levo and started on 1 grain NDT increasing by 1/2 a grain every week until I got to around 2 grains. At that point I was struggling to increase any more despite being symptomatic and found it was due to high cortisol. I took Holy Basil to get my cortisol down and after around 6 weeks I began increasing again and to cut a long story short I am now at 4.5 grains and feeling really well. I have Hashimotos and haven't found that to be an issue with regards to taking NDT although I have gone gluten free. My antibodies are now (at last test) almost within normal range after 2 years.
I have simplified my journey on NDT somewhat so feel free to check out the posts on my profile if you want to see problems I encountered as it has very much been a case of 2 steps forward, one step back but ultimately NDT works for me.
Regular testing is crucial but as greygoose said, you need to allow a good 6 weeks following a dose increase before testing otherwise (particularly if you are paying for your own tests) you will be wasting time and money.
lol.. I think I am missing something. You say you increased by 1/2 grain every week or so. Then you say one needs to wait a good six weeks following a dose increase before testing? Am I nuts or am I just dense?
You don't test after every dose increase, so the idea is that you gradually increase until you reach around 2 grains or an elimination of symptoms and then you hold that dose for around 6 weeks. After that you test your levels, see how you feel and then decide whether you need to continue to raise, reduce or stick where you are.
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