I was diagnosed with follicular thyroid cancer in 2020. I had all my thyroid removed. After 4 years of T4 and feeling less than optimal with pins and needles, achy bones, et al I went private and have been prescribed natural thyroid.
I’m hoping it will help. Dr also told me to supplement Vit D and Folic acid after blood results.
for anyone who has transferred from just T4, do you have any tips for taking it, how long it might take to feel better and any watch outs in terms of side effects?
Hello IvyBoo :
Armour is the leading brand of Natural Desiccated Thyroid which was the original and only treatment for hypothyroidism until around the latter half of the last century when Big Pharma started producing / introducing synthetic treatment options of T3 and T4 on the back of Armour.
NDT is derived from pig thyroids, dried and ground down into tablets, referred to as grains, and contains all the same known hormones as that of the human thyroid gland namely -
trace elements of T1, T2 and calcitonin + a measure of T3 + a measure of T4 in each grain.
For a smooth transition - the Levothyroxine - T4 - will take around 6-8 weeks to fully leave your body and so in that time frame you slowly build up the NDT in 1/4 grains -
Suggest you run bench mark readings of your Free T3 and Free T4 before switching and also get your core strength vitamins and minerals run - as no thyroid hormone replacement .works well until ferritin, folate, B12 and vitamin D are up and maintained at optimal levels:
I monitored myself on blood pressure, pulse and body temperature AM and PM - and whilst the first two remained constant tracked my body temperature slowly rise from 35.4 to 36.6 - where it tends be now some 7 years on -not that I bother any longer.
I switched from 125mcg T4 one day to 1/2 grain NDT the following day -
and then weekly incremented by 1/4 grains - some suggest 1/4 grain increments fortnightly.
If you get to slowly build up to 2 grains you then need to stay on this dose for 6-8 weeks and then run a blood test to see what is happening -
if you still have most of your symptoms and your T3 has not moved much from your bench mark readings maybe NDT is not the best option for you.
If T3 is moving - and you feel ok - but not quite ' there yet ' start again slowly increasing in 1/4 grains.
There comes a week where you don't feel as well as you did the week before - I felt nervous, a bit edgey and just uncomfortable in my skin -
so you then drop down to the previous weeks dose - and stay on that dose 6-8 weeks - letting it bed in - and then run a blood test to see where your T3 and T4 now sit - and that is likely your best dose on NDT at that point in time.
I only got to 1+3/4 grains and felt I'd gone too far - I dropped to 1 + 1/2 grains - stayed on that dose 8 weeks and then ran my blood test -
my T3 was 110% with my T4 at 25% through the ranges, and the opposite of my bench mark readings when on T4 monotherapy -
I felt very well and my symptoms continued to improve over the months.
Some people split their dose of NDT - AM and PM - ? I found no benefit :
Blood tests on NDT do look different to those of synthetic T3/T4 blood tests -
your TSH will likely be low suppressed - if it isn't already - and this does not matter -
your T3 should be proportionately higher in its range than when on T4 only and your T4 may well be much lower in its range than when on T4 monotherapy -
but if you feel well - that's job done as you dose to the relief of symptoms and not a blood test result and range designed for synthetic T3/T4 treatment options.
If you care to share your blood test results and ranges we can help advise - what had been advised by your private doctor ?
P.S. I'm with Graves Disease and post RAI thyroid ablation in 2005 and presume I now do not have a functioning thyroid and self medicate NDT as I failed to get prescribed either T3 or NDT on the NHS in 2018 when more ill than I had ever been in my life.
thanks, this is great info. My T4 is 18.8/19and my T3 is 3.6/3.7 on last two tests. My Ferritin which always worries me is 157. It has been like that ever since I started testing. My TSH is very suppressed at 0.5. All other vitamins are pretty optimal except folate and Vit D. The Dr has given clear instructions on what to take and when, with a very gradual increase and monitoring with bloods every 12 weeks
Ok then - sounds like a plan - good luck :
For reference I now aim to maintain my ferritin at around 100 - folate 20 - active B12 125 ( serum B12 500++ ) and vitamin D around 125.
Ferritin can be raised by inflammation - do you a have a CRP reading there - ?
I doubt your ferritin is over range - even so :
CRP is 2.9 and range is 0-5?
Could be - but not necessarily related :
Your ferritin is still well in the range though isn't it - so why does it worry you ?
The report tells me it is high, although this is the lowest it’s been. I’m worried because it can be an indicator of malignancy and I’ve had enough of that to last a lifetime (3times) 😂
Good morning - I've taken the liberty of highlighting your name in a new post / question that has arrived today - asking pretty much the same question as yours :
It might just help you knowing others starting out on NDT and what instructions they have been given -
I self medicate - these members are with medical instructions -
Your choice of course as to how you plan going forward :
So - you should have had a message saying you have been mentioned - and directed to where your name appears in blue - within this new question :
To mention another forum member you simply need to type an ' @ ' directly before starting to type their name -
as you type their name - a name bar appears offering options - just select from the list - and the name turns blue - and this means the named person gets a message.
After 4 years of T4 and feeling less than optimal with pins and needles, achy bones, et al
Dr also told me to supplement Vit D and Folic acid after blood results.
Do you know what your vitamin D and folate/folic acid results actually were? What dose are you taking?
Do you know what your vitamin B12 and ferritin levels are? And your iron?
And how much vitamin D and folic acid are you taking?
There are several possible reasons for pins and needles in someone with no thyroid. It is possible that some or all of your parathyroid glands (there are four in total) were removed with your thyroid, for example. If that happens your calcium levels could be disturbed and that could lead to pins and needles and possibly cramp. It is also possible that you have problems with your phosphorus levels.
Achy bones are most likely caused by low vitamin D.
Could you give us the results and reference ranges for any minerals and vitamins you have had tested?
Depending on the results of your various tests you might want to read about hyperparathyroidism (unlikely) or hypoparathyroidism (more likely in someone with no thyroid). This website :
has little information about hypoparathyroidism but you should read what there is anyway :
HypOparathyroidism is an uncommon complication of parathyroid or thyroid surgery--when all the parathyroids have been removed. This is HypO = too little. This is almost always due to removal of all 4 parathyroid glands by a surgeon with little experience.
and read these links :
parathyroid.com/hypoparathy...
parathyroid.com/low-calcium...
...
There is a possibility I've gone in completely the wrong direction and you have peripheral neuropathy (rather than a parathyroid problem) which has multiple possible causes :
en.wikipedia.org/wiki/Perip...
And a link on Pins and Needles (with a long list of possible causes) :
no parathyroids removed. I’ve only just started to take Folate and Vit D. B12 was 282. Vit D was 61 and Folate was 12.
Hi IvyBoo
My 19 year old son had a fna a few weeks back which they claim to have found follicular cells - they don’t know if it’s cancer however, the only way to tell would be to remove half the thyroid and then test.
Did they do any tests to see if the cancer had spread with yourself? I’m so scared.
Firstly, as a mum, I totally get your fear. I know you’d take this for him if you could, so I’m sending a big hug.
I had an FNA and it was indeterminate. The Drs offered me a partial or a full thyroidectomy. I chose partial in the hope it was benign. It came back as follicular and I went back in 6 weeks later to have the rest removed. The cancer was luckily still contained within the Thyroid. I’m not an expert but I was told containment meant no spread. I chose not to have any follow up radiation, which was viewed as a belt and braces approach. However I made that decision after I had obtained advice from 3 different Drs.
Don’t get me wrong, it’s 4 years and I’m in a much better place, but I was paranoid and anxious as I’d previously had two bouts of the big C in my 20’s. My Drs believe the last lot of radiation probably caused the thyroid cancer 20 years later
I remember the Drs telling me that outcomes for papillary and follicular cancer are excellent and upwards of 90%. Whilst I know this won’t stop you worrying and feeling dreadful, I hope that knowing that if you do get the news it’s cancer, that he is young, the outcomes are very good and that he will be closely monitored post op by regular scans.
Do your research, write all your questions down and log everything. I absolutely challenged everything and asked for 2nd opinions and took control of my diagnosis and treatment. I annoyed an awful lot of qualified people, but I had two teenage daughters and I was determined to get the best care and outcome. I chose the hospital and the surgeon and moved post op to a different specialist.
I hope this helps you x
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