I was diagnosed with Thyroid Cancer in 2006, which resulted in me having my thyroid and several lymph nodes removed. I was give radioactive iodine etc and the treatments were a success.
I was put on (eventually) 200mcg of Levo per day and although i struggled for energy etc accepted this for about 10 years. I was then persuaded to see a private endocrinologist who tested me (as i had started to take NDT) and he said my thyroid levels were fine, to come of the NDT and then diagnosed Chronic Fatigue. He prescribed a digestive nutrition treatment, azeo-pangen and a vegetable capsule supplement, which does seem to help.
Essentially though i would like to add the NDT into my daily routine but not sure how to reduce the Levo. I have NDT tablets which are 1 grain (65mg) containing 9mcg T3 and 38mcg of T4. Also the date on the tablets ran out in November 2018.... is this an issue?
I also currently take 200mcg of Levothyroxine
Ive tried the GPs but they really don't seem to understand and im also not sure i have chronic fatigue as people i know with it (inc ME sufferers) can't even get out of bed. Im a 52 year old male builder about 14stone -7 and reasonably active and manage to run my own business and im still on my tools as they say, hence my reticence to believe in the Chronic Fatigue diagnoses.
ANY ADVICE is hugely welcome
From a very tired builder!!
Written by
wolthebuilder
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Can you clarify this for me - I might not have read this right - you were on NDT but the private endo said your thyroid levels were fine so to come off the NDT??? - weren’t they only fine because you were on it? That sounds like rather moronic advice to me - and if he told you to stop taking the NDT - did he put any kind of thyroid replacement in its place - did he then put you back on 200mcg of Levo?
If he took you off all thyroid replacement - or at the very least off a form that has T3 in it to replace it with T4 only, I would question the CFS diagnosis too. To be honest, he sounds a bit of a pr*t who appears to be f*cking about with your meds.
In the end, it comes down to how do you feel what are your symptoms like? Hopefully someone experienced with NDT can give you dosage advice - I just wondered whether you ought to ask that private endo for your money back! Good luck with the NDT. 🤸🏿♀️🥛
My endo said i did not need NDT and i was to carry on taking 200mcg of Levothyroxine as he said i had chronic fatigue. Ive been struggling so im trying to convert to either NDT or T3 as well as Levothyroxine but im unsure how to go about this
Just to say a fully functioning working thyroid would be supporting you daily with approximately 100 T4 ( Levothyroxine ) + 10 T3.
I just think that if there has been a medical intervention and the thyroid ablated or surgically removed both these vital hormones need to be on the patients prescription.
Some people get by on T4 alone, some people simply stop being able to convert T4 to T3 and some people simply need both these essential hormones dosed and monitored independently to bring them into balance and to a level of wellbeing acceptable to the patient.
T3 is generally considered roughly 4 times stronger than T4 : the body runs on T3 :
Many people are forced into self medication owing to doctors only testing TSH bloods, and not prescribing either T3 or NDT all due more to costs and guidelines than basic common sense.
T3 can be sourced, as can NDT privately, at much cheaper prices than the Nhs procurement procedure currently in place.
Some people take NDT only, and others add T3 or T4 to their NDT -
Some people say 1 grain NDT is equivalent to 100 T4 whilst others say it's more like 75 T4 . As you can see, there are different options available, the focus is finding the balance that is right for you.
You can simply swop from Levothyroxine to NDT - but in the first instance suggest you check out your B12 and Folate, both are under half way through their ranges and both need to be more in the upper quadrant, and I can't see a vitamin D blood test.
If you're serious about going on NDT it's only fair that you treat yourself to " in date " tablets to give yourself the best possible chance.
Excellent advice thank you very much. I will try and adjust my meds by maybe 1/4 grain ndt and 100mcg of levo instead of 200mcg of levo and see how it goes.
Should have also mentioned that your conversion of Levothyroxine to T3 looks good, as detailed in the above blood print out. Your TSH is highlighted as being of concern but since you haven't a thyroid, I don't believe it's an issue.
When starting NDT, as you may know, you start very slowly with a 1/4 tablet, and slowly increase over a period of weeks. and on reaching around 2 grains there should be some relief of symptoms.
Some people split this medication and dose twice a day, others take it all at once.
As you can see, it becomes a question of trial an error, but having been there before guess you have some previous knowledge of how your body adjusted on NDT.
Your Thyroid and How To Keep it Healthy is a very good book on all things thyroid. It is written by doctor Dr Barry Durant Peatfield who has hypothyroidism. It is an easy, funny read and very relevant to all of us. We may not now be with our thyroids so it is even more important that we know what this amazing gland does so we can attempt to compensate for its loss.
I had the same problem. I have been to I don't know how many private endos and 'specialists', spent virtually all my savings and now treat myself. I was stable - according to doctors, on 125mcg of Levo for over 20 years, which means I had slow pulse rate, arrhythmia and tiredness which I pushed through, being a perfectionist and a then-neurotic about being active. I ended up with chronic fatigue.
So I now self-treat. I am prescribed 125mcg Levo by the morons, but take 75 along with 3/4 grain NDT. I privately purchase the 1 grain strength and cut them with a pill cutter. When I occasionally get ectopic beats and a too slow pulse, feel cold, unusually tired (for Myalgic Encephalomyelitis, ME - the proper term for so-called chronic fatigue), dull-witted and generally hypo I add-in the other 1/4 grain to make up 1 grain for that day. That seems to right whatever is wrong and I'm ok again for days, if not weeks.
I used to take the 1/4 grain out of the 3/4 grain dose before I went to bed, to give my body sufficient boost in T3 to wake up in the morning normally, rather than wake up with raging anxiety and fast pulse rate from too little T3 and my body relying on adrenalin to wake up all the systems, so to speak, but eventually I began to have a racing pulse in bed at night, so I tried taking the full 3/4 grain dose in the morning and hey presto, problem solved. For now.
As for calculations I took 2 weeks to swap over Levo for NDT. I worked on the total amounts of thyroxine, i.e. 1 grain NDT = 65mcg thyroxine. I know that that is made up of 9mcg of T3 which is 4 X the strength of the T4, but I keep the calculations simple. So in taking 75mcg of Levo plus 3/4 grain NDT I'm roughy in the area of 125mcg of thyroxine in total, having around 123-124mcg of thyroxine altogether. But 6-7mcg of that is made up of the ultra powerful T3, so I reckon I'm there or there abouts.
I work on the premise that my body gets sufficient T3 and T4 to hum along until it needs a top-up, or a helping hand. Maybe I'm not converting enough T4 to T3, not absorbing enough T3 at a cellular level, or just not. But I've learned to read my body. And I respect T3. It is very powerful. I was too hyper on NDT alone, so I am better with the mix. But you might need NDT alone, or Levo and NDT, or Levo and a bit of synthetic T3, in the form of Liothyronine. The thing is, you need to start trusting your subjective experience, rather than the textbook militant ignorance of the medics who have forgotten, somewhere back in the misty halls of time, how to diagnose rather than read. And then begin to slowly try different approaches.
Speaking of reading, it can give a rough guide to the overall snapshot of that particular moment in time and eating when the phlebotomist's needle pierced your tender flesh. Looking at your test results, your T4 looks good, your T3 is a bit high. It appears from your post that these results are on 200mcg of Levo. If so, you're converting T4 to T3 very well. Why do you want to add-in the NDT? Are you feeling tired? And the NDT is out of date. Chuck it. If you want to find a source just ask on here and you'll get private replies.
As for your endo, he/she/it was probably startled by the level of your TSH. Ignoramuses are very ticklish about the TSH levels. Don't be too worried at this stage. Or any other. Each lab has a different range, each person has a different range for health. At the moment you're still in the normal range according to others far better equiped than me to say that - most of whom are dead from being, it seems to me, hounded by the GMC Magesterium henchmen for speaking the truth.
Lastly your B12 is way too low. You need to supplement and do so fast and for a long time. This is vital - you cannot function well on that level of B12. If you have problems absorbing B12 from the gut then injections are the only way forward - a whole different ball game. But very easy - I do it daily, and I do not like needles. The site to look at is B12d. It's made a massive difference to me and to others.
Finally, I'm sorry to be able to say, welcome to our world!
Thank you so much for the detailed advice. Im going to sit down and carefully formulate a plan over the next week and start adding B12 supplements immediately.
thereupon for adding/supplementing with NDT is the severe tiredness
Most welcome. If you write a post with the question, people will pm you with a reply. If you want to private message an individual, click on their name and their page will appear. On the upper right hand side there will be a message icon.
By the way, I know that we don't tend to go on blood stats as far as medicating is comcerned, but your T3 and 4 levels look good. I would suggest you try injecting B12 to start with rather than altering the thyroxine - it's far safer, you'd get results quickly and you'd bypass problems with absorption. Very eassy to do. I would urge you to look at the B12d site.
Hi, I lost my thyroid in 2015 due to goiter and trachea movement, before that my thyroid was working well. I was then put on Levo only and became very ill within 8 months. I then joined this site, it has taken me nearly three years but I am well again now on NDT which I source myself. I have no other health problems at all. I never visit a GP or Endos, just sort myself out with help obtained on this site.
I do a once a year blood test and take 2 grains of NDT per day, you will need more.
Your B12, and Folate are low in the range, this can cause fatigue. Someone on here will more knowledge should be able to advise you on these.
I am coming up for 73 years and feel well with no thyroid, you can too, it does take time. I also wasted my money going down the private route all to no avail.
Hi I was on levothyroxine 100mcgs T3 30mcgs and as was still not 100% on this
I wanted to try NDT, I did this with my Endocrinologist but had to buy own NDT,, at 1st he added 30mcgs NDT (half grain reducing Levothyroxine by 50mcgs,
, About 4 weeks he added another 30mcgs NDT and reduced the Levo another 50mcgs so I took the NDT 30mcg (half Grain) am and 30 mcgs (half grain) pm,
I took the T3 evening and at 2 am as couldnt fit it in other wise, I felt a little under medicated so after two weeks I got another 30mcgs NDT added
IM now on 3 x half a graIns per day, and the T3 I have reduced to 20 mcgs which I take in middle of the night,,,
I think the idea is to add slowly every two weeks with reducing levo at same time,,, I did feel a bit rough with each change but was only a day or two
.. I am lucky my Endo is working with me on this,, what area do you live in,? as if you live near where I do or close by I can give you name of Endo that does this,, PM if you like ..
I feel better on NDT
My Endo says most people who have thyroidectomys feel better on NDT or T3 ?T4 combination..
You may just need an add of T3 this can also make you feel better,, I just never did get on with Levothyroxine,, Im hoping to get rid of the T3 and be on NDT as will be easier for me but My Endo thinks because of my genetics I may need to keep a bit of T3
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