Do any of you (particularly UK based people) self medicate with Natural Dessicated Thyroid? Do you mix the two together or does it need to be one or the other. The consultant today said that it was easier to regulate and fine tune the levels with levothyroxine due to being commercial produced......
How do you know the quality of the product if buying online!!
Any advice appreciated.
Odd comment. Who does he think makes desiccated thyroid? The WI? A bunch of pig farmers?
Most makes of desiccated thyroid are manufactured by large companies and conform the licence requirements in at least one country (e.g. USA or Canada).
I do not know of any evidence whatsoever that desiccated thyroid has any more variability than standard "commercial" levothyroxine. Indeed, we have seen more problems with levothyroxine products this century than with desiccated thyroid.
[ Edited to correct a mistake. ]
Interesting. So how do you work out how much to take and not take too much. Yes he did refer to pigs thyroxine. And do you take both or one or the other etc etc
Like most aspects of thyroid medication, it varies. Some take desiccated thyroid only, some add in some levothyroxine, some add in some liothyronine, some even add in both levothyroxine and liothyronine. Some even vary their combination as they see fit.
Whatever works for you is the answer.
But going it alone!! So how do they check their bloods...?
See my comment below.
A fair number of people get to be quite good at gauging their doses.
Remember, standard practice is to get a single TSH test each year. Which allows you to be under- or over-dosed for 364 days a year and "they" would never notice. So it is actually almost always down to you.
Blimey!! Is that in USA? I usually get tests twice a year but it's been more often because it just hasn't been right and we've been testing various things to rule out fibromyalgia.
No - in the UK. I am not clear what the standard (i.e. most common) regime is in the USA but I would not be at all surprised if it were similar.
What test rules out fibromyalgia?
Ah so you are uk. Is your doctor supportive of you?
Well, it seems to be more a case of ruling everything else out first. If it isn't anything else and the symptoms fit...... Although there is a pressure point test they do.
My hunch is if my thyroid was right then I would be fine!
Would my doc still authorize tests if I took NCT do you think or would I have to pretend I was taking levo?
Mine is a relatively simple case. But I don't really feel supported. I have a test, I get my NHS prescription then ignore them for a year unless something else happens.
Despite free prescriptions, I find myself buying my own from Germany. And making small adjustments by myself.
It's a shame really isn't it, it's a missed opportunity to expand knowledge and understanding by gp!
Ah well my sis will stop nagging now i have eventually been to the consultant. I wonder what she will make of me self medicating if I go down that route!!
The problem with having NHS blood tests while secretly self medicating with NDT (or anything containing T3) is that the blood test results can make it look as though you are experiencing pituitary failure. This tends to make doctors (or the labs) panic. In fact I think one of the reasons doctors don't like anything except the standard 'measure TSH and prescribe thyroxine' approach is because they feel out of their depth having to look at three numbers instead of just one.
If we can manage to do this, they really aught to be able to with all their years of med school!
This is a UK-based site, so most of what we say applies to the UK and our battles with the NHS to get half-decent treatment.
Though we are increasingly seeing more folk from the U.S. on the forum.
This forum belongs to Thyroid UK. 
The link I posted in my first reply contains lots of information and more can be accessed from the links on the left hand side of the page.
Oops I managed to miss that link. Tired eyes. I will have a read. Thanks. It is all the talk of ndt that gave me the impression of lots of usa people (maybe more in the fibro group actually).
Many folk find us when they discover that Levothyroxine isn't the magic medicine their doctor promised it would be!
There are many people here who are taking NDT - and equally, many people who are very knowledgable about all things thyroid. It's a wonderful lifeline for those of us who'd almost lost hope of ever feeling well again.
That is pretty much how I feel right now. It affects absolutely everything, relationships included! An absolute sod!!
Helvella,
Don't you mean :
I do not know of any evidence whatsoever that desiccated thyroid has any more variability than standard "commercial" levothyroxine.
I made that assumption
Too true I did!
I started typing with the sentence reading the other way around - saying "any less constant potency" or some such - realised it read better as eventually written, but missed changing the less to more.
So Ludwig Mies van der Rohe rules - less is more.
Pretty sure that rule applies to the fillers in Levothyroxine!
Oh, that old chestnut. I regret your consultant is spouting the party line - an incorrect party line, but one so oft repeated it has been accepted as truth.
"Thyroid UK has... often heard that doctors tell their patients, “You never know how much of each hormone is in the tablets.” This is untrue. NDT goes through the same process that levothyroxine goes through and is tested to ensure that the correct amount of T4 and T3 is in each tablet. United States Pharmacopeia (USP) is the official public standards–setting authority for all prescription and over–the–counter medicines and other healthcare products manufactured or sold in the United States. Thyroid USP state that thyroid tablets should contain not less than 90% and not more than 110% of the labelled amounts of levothyroxine and liothyronine, the labelled amounts being 38ug of levothyroxine and 9ug of liothyronine for each 65mg of the labelled content of thyroid." (See thyroiduk.org.uk/tuk/diagno... )
I'm not sure what you mean by mixing the two - do you mean mixing NDT with levothyroxine?
Yes I mean mixing levo and ndt. Levo is only t4 right? so ndt has both in it?
That's right. And yes, some here do mix the two to find the right amount of each of T4 and T3 that makes them well - it can be very individual and a bit trial and error.
I only take Nature-Throid though (a brand of NDT).
So in USA I am guessing that you can be supervised but I am guessing that I would be going it alone if I went down this route in uk. That's a bit scary because how will I know not to over medicate!
I don't take desiccated thyroid, only levothyroxine. But I certainly know if I am over-dosed - and I cut back. My feelings about dose have been confirmed by blood test.
I see. A bit scary, but equally I am so fricking fed up of being tired!! So what symptoms do you get if you are over dosed then?
Overdose symptoms tend to be fast pulse, sweating, anxiety, but google hyperthyroidism and you will get the picture. In the days before blood tests doctors would increase the dose until a patient started to feel overdosed, then decrease the dose slightly. Today's doctors give people the minimum they can possibly cope on, usually less, and then blame any continuing symptoms on CFS, ME, Fibromyalgia, menopause, depression, obesity.....
So like most things we are going backwards not forwards!!!
Very occasionally you can persuade a UK consultant to prescribe NDT, but it's uncommon. A few more endocrinologists are willing to prescribe synthetic liothyronine (T3). And some GPs are happy for you to source your own meds and monitor you.
For those of us who have to go it alone, there are a number of private blood testing companies.
Thank you that is helpful to know. I am going to see what comes back from the bloods and the adrenal testing and then speak to my doctor. I really don't see what I have to lose!!
They seem to have this crazy idea that you take the thyroid from one pig, make a tablet, then take a thyroid from another pig and make the next tablet, and so on. It doesn't seem to occur to them that all the thyroids are dried and ground up together, levels of hormone verified and only then, are the tablets made!
So, you get remarks like 'but what if the pig your tablet was made from had foot and mouth disease...'
Foot and mouth and arms and legs is what I am getting with Levothyroxine, but unfortunately NDT put my BP up too high.
Ah! How are your adrenals?
Just stopped Nutri Adrenal with a view to having saliva test in a fortnight's time. Don't think they are that good, but blood results came this morning from Blue Horizon and most are very good. B12 over 1000 and D3 113. All other bloods very good. The real problem is the rubbish Levo! Unfortunately tried Nature Throid a few weeks ago and it didn't feel too good and put up my BP. Used to convert very well on Goldshield Levo. FT3 was always about 5.5 (3.1 - 6.8) and FT4 was always a bit over 22.4 (10.0 - 22.00). TSH always about 1.5 although not really bothered where that is (only doctors are). This time even my Cholesterol is good with fairly decent HDL at 1.6. Maybe I am still 'throwing out that awful MP Levo?
Well, how long have you been off it? Shouldn't take more than a couple of weeks. But if your adrenals are low, you might not be able to tolerate the T4 in NatureThroid. Or maybe NDT just isn't for you.
Two weeks GG. Beginning to think NDT isn't for me as that is the second one I have tried. Am finding Actavis is beginning to feel a little less 'burning' and wonder if the MP Levo is at last leaving my body (plus Wockhardt). As was on it for nearly 3 years, this could take some time. Also not used shampoo or soap on skin for about last month, so don't know what I willbe like when I try again! Sorry to have hijacked your post BeccaBurton, but hope you are learning from all this. Best of luck with it all.
Hey, that is ok!! It's a bit worrying to hear about the BP issue. Is that a common problem?
Hi Becca, B Phas to be kept a close eye on if you are changing from Levothyroxine to NDT, and mine has gone high on two different NDT's.
I do not know if this is still the case, but back in the 1940s, and before, the Armour company had a special animal testing lab. In the lab they measured the biological activity of every batch in living animals. Has anyone ever seen that done for levothyroxine and liothyronine?
(It might be that our massively improved techniques of assay of medicines has largely removed any benefit that biological testing used to provide. Nonetheless, it does sound like a useful longstop in case of something that perhaps has not otherwise been noticed.)
I have remembered something else the consultant used as a reason that levo was better. He said because it has a slower release time where others have a shorter release time so you would maybe need to take three times a day or at least more often.
Is this your experience on ndt?
I need one of the admin folk to help me out with this answer - calling Shaws!
T3 does have a much shorter half life, which in theory means that multi-dosing through the day is required if you take NDT or Liothyronine. But quite a few of us take our NDT or T3 in one dose and are absolutely fine with that. Again, we all vary a lot with what suits us.
And in all honesty, if having to take a drug two to four times a day rather than just once makes you feel so much better, it really is worth the inconvenience! Doctors seem to think we struggle with taking medication more than once a day...
Absobloodylutely!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
I took T3 only (for the first time), back in 2013 when I was seriously deficient in iron. I found that I needed to take it in 4 or 5 doses a day to be able to cope with it. (I hadn't tolerated levo at all.)
For various reasons I have chopped and changed with my meds over the last year or so, but have been steadily improving my levels of vitamins and minerals.
I'm back on T3 only now, and have been since the beginning of February. I'm coping really well with dosing just twice a day.
I think if we can maximise health in other areas then it has a knock on effect on the way we tolerate thyroid medication. And minerals and vitamins are absolutely crucial.
Not according to mr consultant - they bear no impact apparently wtf.
I'm glad you are doing well now!!
I've changed my diet quite a lot. Mostly Paleo type eating with the odd slip. Definitely the vitamins and minerals help. I have a friend who has lymes and she is largely managing her condition with use of minerals vitamins etc
Specifically, standard forms of both T3 and T4 tablets result in blood serum peaks of FT3 and FT4 respectively around two hours after ingestion.
I can't find a blood peak time for desiccated thyroid but I cannot think of any reason it would or could be faster!
Release time is only one factor!
What does he mean by 'slower release time'? I think he's a bit confused. Levo, T4, is a storage hormone, so it stays in the body longer. It has to be converted into T3 for your body to use it. NDT contains both the storage hormone and the T3, so you're covered both ways - the body uses the T3 straight away, and also has the storage T4 to make into more T3 if it needs it. That is not a valid arguement he has there!!!
In fairness to him I may not have reported it exactly as he said it - I was really struggling by the time I got in there over an hour late in a hot waiting room without even a drink. He was a very fast talker too. He did say though that studies showed that there was only any really significant benefit of combining t4 and 3 for people with an adrenal system that didn't work well.
Ha ha! Clever little blighter! Ask him for the references of those 'studies', say you'd like to read them. He won't be able to supply any!
healthunlocked.com/search/d...
Lots of threads in the above link about NDT - and peoples experiences. Looking back through your previous questions I think you need to obtain your results and post them here before you start changing anything. We keep asking for your results and you reply OK/normal.....seeing the figures would be helpful. No good starting NDT if your levels of Ferritin - Folate - B12 - VitD are on the floor. OK you take 2 fizzy VitC's - but what is the measurement of each tab. I take 2000mcg of C....10,000IU's of D for example. Figures do count....
There is no quick fix with the thyroid - it is a process - a process of learning and adapting.
The main website of Thyroid UK is very informative - everything you will need to know about thyroid...
Thank you, point taken x
I'm not intending to make any changes until I have had the results of the bloods for lymes and my adrenal function test. I'm just gathering as much info as I can about ndt. I will certainly read all the posts and I am phoning the docs to get results of tests.
Can someone please please help me. I'm desperate. I am taking 100 mcg levo and 20 t3. I was on 100 mcg in states for 12 or so years. I had a thyroid gland when I came into the UK in 2009. I was told last year by endo that it is now gone. They don't seem to have a problem with this. I was put on t3 because of severe symptoms of hypothyroidism returning. I felt a bit better adding the t3. But not 100%. I have repeatedly requested that I be put on NDT but am told it isn't an option in this country. Please, can someone help by messaging me and directing me to where I can purchase it and to what lab lab would be good to deal with? I'm in Scotland. I told my doctor about this site and he said don't come to it it's rubbish. I said but it is very informative. I told him you should get on it perhaps learn something. Oops.
Ha, good for you. I am in Scotland too, in the Highlands. I am sure you will get some great advice xox
Hi, Christielle and BeccaBurton, I am also in Scotland, in Angus. I thought I must be the only one up here since the 'people near you' gives me no-one nearby. Although there are a few up to 4000 miles away! My endo in Dundee has put me on a four month trial of 10mcg of T3 and reduced my levo from 200 to 150 mcg. I have been on this dose for one month now and although I felt much better for the second and third week I am beginning to get tired in the afternoon again. I understand this is because I need to up the T3 but have to wait till the beginning of July for my next appointment. I don't know if he will consider NDT for me but I do know there is someone up here that does prescribe it, just don't know who as yet.
Oh, and he also told me that my thyroid no longer exists, which comes as no surprise to me!
"People near me" is opt-in - that is, the only members included are those who have bothered to go to their profile, enter their location/postcode, and tick the box. As it is still quite new, lots are unaware of it. Further, many people might not wish to make their locations visible.
In my book, it is not a very useful way of assessing how many people are local. However, it there are people who wish to be in contact with others nearby, it could be very helpful.
You should point out to your doctor that any non-Community posts on here are displayed on the NHS Choices webpage.
If your GP thinks this site is rubbish,perhaps you could ask him .....Why are there so many thousands of people joining in order to try to get information and help that they aren't getting from their doctors?
I buy my NDT online, I pay for all my own blood tests as the GP won't have anything to do with it as they said I didn't need treatment in the first place. I use the finger prick tests you can do yourself.
I take my tablets all in one go first thing in the morning.
In the UK
Is there a link someone can send me so I can source the NDT myself?
Christielle, it is always a good idea to ask for this information in a new question of your own. Buried here in the middle of someone else's question it is unlikely to get many answers.
Ask for the information you want and ask for replies to be sent via PM (private message).
Sorry 
And I'm sorry if I came across as if I was telling you off. I had no such intention.
I live in London and the blood tests are so expensive, do you know any cheaper labs to do tests? Thank you
Have a look at the main Thyroid UK site here:
thyroiduk.org.uk/tuk/testin...
There are discounts to Thyroid UK members on some tests. Home finger-prick tests are often the least expensive overall.
Dear helvella, thank you for reply, but £39 for TSH it's too much for me, because I am out of work right now and finger prick test doesn't show the numbers of test, just says it's normal or not..
Not so - the finger-prick tests I know of at that link do give you a number. (I cannot say for certain that none of them are the simplistic Yes/No tests.) However the price is probably too much of a barrier.
I started Thyroid S last week (with the agreement of my GP who will continue with my monitoring although I had to source it myself ). As its only been a week, I can't yet tell if it's making any difference. Originally started taking half a tablet (grain) first thing in morning and half 6 hours later but as I was travelling all day yesterday and do nothing but eat when I'm travelling(!) i took it all in one go. It didn't cause any hyper symptoms so I did the same again today and feel ok. Clemmie
I've been self-regulating / medicating for the 10 years i've been diagnosed. I was first ill in a developing country. In most non-western countries you just go to a lab and pay to have your tests done whenever you want. They don't usually cost much - the most I ever paid was $20. Where I am now it's about $5!
I've learned to use my body as my indicator. Hair fall starts within 5 days of my dose being wrong. My pulse is always about 72. More or less and my dose is wrong.
I'm never 'perfect' though. I have to decide which symptoms I can live with and which I can't and that will determine whether I take more or less thyroxine.
Sorry folks another question
Another gluten question
Another tsh question please?
