Move to NDT from T4 after thyroidectomy

[loveforlife]

I am going to move from T4 only meds to NDT, i have no thryoid and would like to hear from anyone who has had a thyroidectomy and accomplished this. Thank you to anyone who can give me any tips and support.

[johnmiller101]

It's not easy, I lost half of mine 30 years ago, and have been on 2 grains now for about

4 months and it seems to be OK. I tried 3 grains and lost much of my hair and got the shakes. So, you will have to experiment with the dosage. Get a blood pressure machine and if you pulse and BP is high, then cut back on your dosage. Good luck, John

[danym in reply to johnmiller101]

which ndt are you taking? i'm loosing a lot of hair on armour 75, but when i tried to decrease to 60, i can barely function

[johnmiller101 in reply to danym]

I take Nature Throid, 3 grains. use your blood pressure and pulse to guide you, as well as in bed temperature upon rising. You should be at 36.5 C. Check the internet for all these tips.

[waveylines in reply to johnmiller101]

People vary with their temeprature of what is the norm for them. Average temperature range is 36.6-37C. Mine is 36.7 or 36.8C usually.

[johnmiller101 in reply to waveylines]

When in bed, as you first wake up, it will be 36.5, if higher, lower your dosage if lower raise it a bit. The blood pressure is key too. If your blood pressure is high with meds, then reduce your dosage. And the same with the pulse. I am now at 3 grains per day. 1/ 1/2 in the morning and the same in the afternoon. BP now 117/60/ pulse 70.

[loveforlife in reply to danym]

Hi Danym, thank you for your reply. I am on T4 at present but need to move over as i am not converting to T3 very well any more and have loads of RT3, so I need to make the change.

[Raali in reply to johnmiller101]

Hi John I also had half of my thyroid removed and face a lot of issues. I just wanted to ask did you not take any replacement therapy for all those years since you have just started taking NDT?

[johnmiller101 in reply to Raali]

I think I started with the artificial T4, then after a few years, I switched to Armour Thyroid, Thyroid., I think 1 grain, then as the other side of my Thyroid started to not produce enough Thyroxine, I upped my dosage to 3 grains. This seems to work now, but I lost about 20% of my hair, so not happy about that, but blood pressure now normal.

[Hidden]

Hi I had my thyroid removed in 2015 before that I was not on any medication. I was put onto Levo and for 8 months became very ill. In June 2016 I found and joined this site. I knew nothing about the thyroid at all.

I was advised to take a private blood test the one I use now is Medichecks ThyroidUltraVit.

I then posted my results with the ranges on here fore answers. Take the test first thing fasting and leave off Levo for 24 hours priors to the test.

I now self medicate with NDT that I source myself and feel very well. I take two grains every day 1 x at 6am and the other at 2pm. I am nearly 73 years old too.

Start off with half and grains and every 10/14 days add another half and so on.

It did take me nearly two years to obtain the correct dose but you can do it. It raised to three per days and my FT3 results was way over the top range. It's a bit hit and miss and patience. Good Luck

[shaws Administrator]

This link is by one of TUK's Advisers, now deceased due to an accident. He would never prescribe T4 - only NDT or T3. He took one blood test for the initial diagnosis and thereafter it was about small adjustments and taking note of clinical symptoms and their relief.

naturalthyroidsolutions.com...

[loveforlife in reply to shaws]

Hi Shaws

Thank you for your reply; i will take a look at the information.

[pennyannie]

Hello Loveforlife

Just as a pointer a fully functioning working thyroid would be supporting you daily with approximately 100 T4 + 10 T3.

Personally, it just seems logical that if there has been a medical intervention and the thyroid either ablated or surgically removed that both these vital hormones be on the patients prescription.

Some people get by on T4 ( Levothyroxine ) only, some people simply stop converting the 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 wellness acceptable to the patient.

Since NDT was the tried and tested thyroid treatment for over 100 years and contains all the known hormones viz, T1, T2, T3 T4 and calcitonin that your thyroid would have given you I understand totally your decision.

My thyroid was ablated with radio active iodine, so a different situation, but I'm now taking NDT and doing so much better than when on T4 only.

I also tried adding a little T3 to a reduced dose of T4 - to mimic original thyroid production, but didn't have a guaranteed supply chain for the T3 and other brands of T3 I purchased didn't suit me. Seeing as I was having to source and pay myself for the medication, the cost and uncertainty of obtaining a specific brand of T3, didn't sit well with me.

I find NDT much " softer " on my body. I'm not in the fast lane as I felt I was on T3, but I'm not in the slow lane either, I'm the middle lane, my brain and cognitive function are all but back and I'm now trying build up my stamina and core strength.

You might like take a look at he following book, written by a doctor who has hypothyroidism.

Your Thyroid and How to Keep it Healthy - by Dr Barry Durrant Peatfield - it's a goto for all things thyroid, an easy sometimes funny read, explaining everything the thyroid does.

We may not have this amazing gland, which is responsible for whole body synchronisation, including your mental, physical, psychological and spiritual well being, so we need to understand and compensate for the implications of the loss.

[loveforlife in reply to pennyannie]

Hi Pennyannie

Thank you for your reply.

Can you tell me how you moved over, did you stop T4 one day and begin NDT the next or did you have a softer move over, and if so how did you replace. I have tried this a couple of times before but have failed.

Any help is very much appreciated.

Thank you

[pennyannie in reply to loveforlife]

I too followed the same advice as given in the link by TSH 110 - stopping Levothyroxine one day and starting NDT the next.

I also trialled T3 and found this synthetic much more powerful than NDT - but this of course, could just be me.

As you will read, everybody's take on how to, how much and when to dose differs.

It's also very important that your ferritin, folate, B12 and vitamin D are optimal as low vitamins and minerals can effect thyroid conversion.

It's a massive learning curve, there is much to read and understand, but it's doable.

Many people on here now self medicate and we are all here to support each other due to the lack of appropriate treatment in the Nhs mainstream.

Ultimately, you need to feel confidant in your own knowledge to trust yourself in this change of regime.

[pennyannie in reply to loveforlife]

There is also the option of taking a T3 / T4 combo - having just read that your endo refused to prescribe despite your low levels of T3.

If you are planning to self medicate why restrict your options ?

You have tried NDT before and say that you " failed " - what went wrong before ?

Maybe a little T3 added to some T4 will suit you better.

Just a thought ?

[loveforlife in reply to pennyannie]

Hi I may see if i can get hold of some my Endo will not allow me to have despite the fact I obviously need it.

[pennyannie in reply to loveforlife]

Well, he might offer to write you a private prescription for the T3 and monitor you on the NHS. This seems to be a common, though despicable way of solving the problem of CCG's blanket restrictions in some areas of the country.

There are several posts on here suggesting that the best and cheapest private prescription for T3 is through a German company where you need to request on the prescription Sanofi - Thybon Henning T3. 20 mcg.

I think that's correct, as a private prescription for T3 sourced in the UK is still ridiculously expensive owing to the inability of effective procurement from within the Nhs service.

Either way, if you go NDT and orT3 yourself, you'll need to look at costs.

Currently my NDT is coming out of Thailand at a fraction of the cost that the NHS charges, and it was similar when I sourced T3 privately.

[loveforlife in reply to pennyannie]

Hi pennyannie

I asked about this and he said i could self fund the meds at £250 per month, I thought this was a bit steep. I will bear in mind where you said i can get if from, i bet it is not £250 per month.

[pennyannie in reply to loveforlife]

OK, I've just seen a post whereby the endocrinologist needs to write out the private prescription requesting 20 mcg tablets - which in itself means the above named brand as no other brand comes in 20 mcg tablets.

One pack of 100 T3 tablets is currently costing 30 euros plus 6 euros for the postage. I believe this brand to be well liked and tolerated by people on this website

One pack of 30 tablets through the Nhs will probably cost you £250 a month - though on either brand you may not need more than half a tablet to feel well.

As for NDT - I don't know UK price through Nhs but suspect a similar anomaly. Through Thailand 1000 tablets cost me just under £100 and will last me for about two years. There are also options of smaller packets of different brands of NDT if you wish to try before you buy and settle on the one you might like to commit to.

Hope I haven't confused you but helped sort things out, a bit. ?

[waveylines in reply to pennyannie]

Hi Pennieannie you say as a pointer a full replacement dose is 100mcg of levothyroxine & 10mcg of liothyronine. May I ask where that came from as Ive never heard of that before?

A friend of mine who had a thyriodectomy was given 200mcg of levothyroxine & told that was a full replacement dose. She felt under treated.

For years on a ndt I have needed 4 grains per day which is 152mcg of T4 & 38mcg of T3. I need a tadge more when its extremely cold & a little less when its very hot. My thyroid is totally defunct.

I know everyone is different so I always worry about these statements of full replacement doses as to me they are confusing/misleading. The dose is the one that works for the individual, with the least remaining symptoms, preferably none. That can vary enormously due to a variety of factors.

[pennyannie in reply to waveylines]

Hello there,

Well. as stated, it's an approximation of the amount of T3 and T4 a fully functioning working thyroid would be supporting a healthy person with on a daily basis.

I've read many articles and it's commonly acknowledged that a normal thyroid gland produces roughly 80% T4 and 20 % T3.

Needless to say both T3 and T4 are produced in the thyroid gland and if you have lost your thyroid, through surgery or RAI ablation you have lost approximately 20% of your natural T3 output, and been " down regulated " accordingly.

As you quite rightly say, the replacement dose is that which relieves symptoms and will be dependant on each individuals ability to convert T4 - Levothyroxine into the T3 which is the hormone that the body runs on, and I've read again, that generally speaking, we need about 30 - 50 T3 daily, and that's a pretty wide range, but so be it.

There is a very interesting table in Tired Thyroid by Barbara S Lougheed.

I believe she now runs a blog, so that might be easier to research immediately.

She details T4/T3 content of different doses of NDT / T4 to mimic natural thyroid production.

I'm now self medicating on NDT and seem ok on only 1 + 1/2 Thyroid S and am very surprised since my thyroid was ablated back in 2005. I am with Graves Disease, and I now wonder if my thyroid is still with some production or I have excellent conversion.

My T4 read last time I checked this February was 13.9 ( range 12 - 22 ) but my T3 came in over range at 7.86 ( range 3.1 - 6.8 ) - I had absolutely no symptoms of over treatment and felt totally flummoxed. Needless to say my TSH was at 0.005 but I 'm not concerned with this suppression, as I'm with Graves Disease and " TSH stuck " and I now feel better than I have been in several years.

I am still a work in process and now need to build up my strength and stamina and get my life back, as I have been housebound through part of the last 5 years.

I hope I've answered your question and feel sure if you look elsewhere on this site, and other recognised specialist websites the content of my post is in line with other opinion and publications.

[waveylines in reply to pennyannie]

Thanks for your long reply. I actually dont think there is any medically agreed total replacement dose that has been scientifically proven. That is my point.

Blood tests and symptoms & signs are the very best guidance. Long may that prevail as if we start doing it to a preconceived amount even as a guide people will suffer as they have done over the TSH nonsense. As you have stated you need far less than you thought to feel well. Ive been on a ndt for over 10years and I definately have needed 4 grains right from the start which doesnt vary except in a very cold spell of weather when I need a tadge more or in a heat wave a tadge less..

A very knowledgeable nhs endocrinologist once said to me so long as your Ft3 stays in range no harm will occur...I use that as my guiding principle. Its also what he wrote in a letter to my GP. This is one of the reasons that thyroid medication is introduced slowly, so the body can adjust and you can find your own individual sweet spot thats optimal for you.

There are complexities around the whole process of the thyroid & body systems involved which the theory now coming out involves which challenges the simple loop feedback system that medical practioners are taught. This may have some bearing on the wide variation in optimal doses for those needing a full replacement of thyroid hormones . It is early stages. Diogenes is involved in this research which is fascinating and am sure would share if you want to know more.

[TSH110]

Mine was not removed but died after years of autoimmune thyroiditis so effectively I don’t have a working thyroid. I took Levothyroxine for over two years and never felt fully well in it so decided to try NDT. I used the thyroid patient advocacy NDT protocol

tpauk.com/main/article/trea...

It is well worth a read....

and I feel much better on NDT.

[loveforlife in reply to TSH110]

Hi TSH110

Thank you for your reply; I will read through the information, I am sure it will be of help.

[waveylines]

Please be aware that, like Levothyroxine, different brands of ndt suit different people. I did well on Armour until they changed their formula, didnt do well on Naturethroid, did well on WP & am best on Acella NP. Everyone is different....so am afraid you have to try them out to find the one for you. Stopthethyroidmadness website has a full breakdown of them all and a transition chart.

I havent had a thyrodectomy but my thyroid has long since died & I am fully reliant on thyroid replacement - in my case ndt. I take 4 grains per day first thing in the morning. My dose has remained the same for about 10years now.

Interestingly enough since Ive been diagnosed with b12 deficiency recently & need very regular injections my body temperature has finally increased into normal range. Supplements hadnt ever done this. Its also allowed me to take my ndt in one daily dose rather than split as I had had to do previously for years.

Technically you can convert your levothyroxine to a ndt equivalent & transfer straight across like that. However personally if it were me I would introduce it more slowly than this as you dont know how your body will react to the T3 content. Probably starting off with the equivalent of about half the dose of your current levothyroxine. When I transferred it was suggested I started with a very low dose of one grain & built up in 6 week small increments. I found this impossible as I felt quickly very ill on the very low starter dose so I built it up much quicker than that but slowed the final increments to the 6 week gap. That worked much better for me.

For me Ive found ndt gives me the most natural, even support that Levothyroxine, even when liothyronine was added in, never gave me. I used to get spikes and drops on the synthetic meds but this never has happened on ndt which feels consistently even & how I was before my thyroid gland stopped functioning. I dont know why.

Wishing you a very happy sucessful transfer!

[loveforlife in reply to waveylines]

Hi Waveylines

Thank you for your reply

I have seen that a good way to cross over might be to half T4 and start on 1 grain of NDT, is this something you did. I have tried to move over a couple of times in the past but had to give up, mainly because I did not know what I was doing really. I am feeling now that I dont have a choice as I am no longer converting as i should, I also have very high RT3 levels.

[TSH110 in reply to loveforlife]

Have a look at this loveforlife, I think you will find it very helpful. I presume this is how doctors determined NDT dose prior to modern blood tests that came in as synthetic T4 ousted NDT as the normal thyroid replacement therapy. I have never bothered with any blood tests since starting NDT (some might disapprove) because generally I seem pretty well on it just going by how I feel. Because I had bouts of hyperthyroidism before treatment I know that beast well:

tpauk.com/main/article/trea...

[waveylines in reply to loveforlife]

No I didnt do that. I was advised to stop taking levothyroxine for two days, then slowly introduce the ndt starting at one grain. It was far too low a dose for me & frankly I couldnt sustain such a low dose so raised it quite rapidly to two grains then in slow increments after that.

Link below may help

stopthethyroidmadness.com/n...

Id keep a little daily log of what dose you are taking & when, supplements, your signs symptoms, how you feel, your pulse & temperature first thing when you wake before rising. Its useful to look back on for trends etc

[TSH110 in reply to waveylines]

I reduced levo by 25mcg whilst adding 1/4 grain NDT and gradually tirated up NDT whilst reducing Levothyroxine following the thyroid patient advocacy protocol. It worked really well for me. Like you I find NDT much superior to synthetic T4 and have abandoned efforts to add some synthetic T3 to NDT results were variable and harsher than NDT alone. I liked Acella and naturethroid (since reformulated) but find Thai ThyroidS as good as anything else. I take 2 grains a day. For the first two years I only needed 1.25 grains. No idea why the dose had to be upped.

[loveforlife]

Hi JaneyJaney

I had mine removed in 2014. I seem to be converting less and less to T3 and am now at the lowest amount the NHS advise, however, Endo will not give me T3 so it is going to have to be NDT