I have been taking NDT from Thailand for 9 months and thought I was doing really well on it. My latest blood tests however tell a very different story, TSH is above range at 7.9 (0.35 - 4.94 range) and Serum free T4 is below range at 8.2 (9.0 - 19.0 range). My GP knows I am taking NDT and has suggested that I up the dose or take levo. I am on 2 grains, one in the morning and the second at 4pm.
I am so disappointed, and don't know where to go from here. I would greatly appreciate any advice.
How much levo were you on before you started ndt? You really need to know what your ft3 is as well.
I was taking 75 mcg of levo and 20mcg of T3. Ft3 isn't showing on the report so I don't think I was tested for it.
Blood tests were invented for levothyroxine (T4) only, therefore if we take additional hormones the numbers cannot correlate. NDT is T4, T3, T2, T1 and calcitonin. Levo is only T4.
The link I will give you below was by an Adviser to TUK, before his death.
He only took a blood test for the initial diagnosis and thereafter it was all about relief of symptoms. His patients started on a dose and every two weeks increased by 1/4 tablet until symptoms were relieved. He did not recommend splitting doses although I know a number on this forum may do so. You keep an eye on pulse and temp whilst increasing and if either goes too high you drop to previous dose.
web.archive.org/web/2010103...
web.archive.org/web/2010112...
web.archive.org/web/2010103...
(excerpt: Dr. Lowe: As a rule, our patients take thyroid hormone only once per day. An advantage of this one-per-day schedule is that it’s easier to find a window for good intestinal absorption—when the stomach or small intestine doesn’t contain food.)
Thank you for your reply and links. I think the fact that no one knows exactly what is in the NDT from Thailand is making question it. The tests taken after 3 months on NDT were all in range, which is why the latest tests were such a surprise and the GP was so concerned. I am on my second order from Thailand and wonder if this batch is not as good as the first.
I have been taking NDT from Thailand and I feel well and my levels are good.
This is the third order and it's just the same as before.
You require your FT3 to be tested.
So good to hear this, it does give me more confidence.
Hi there
I’m also on my second batch from Thailand and have gone downhill. I replied to another member who had the same problem. Then another member said the same thing. My results now show under range t3 where as 4 months ago I was in the top quarter. I will now look to order from another supplier as I have gone back to feeling cold and tired.
How do you take your NDT? Like levo? On an empty stomach, at least one hour before eating or drinking? Do you take any other supplements or medication at the same time? It would seem you're not absorbing it very well.
I take 1 grain first thing in the morning before food or drink and the second several hours after lunch. No other supplements 4 hours either side of a dose.
OK, you probably have low stomach acid, then. Have you had your nutrients tested? Vit D, vit B12, folate, ferritin?
I haven't been tested but I do take D3, B12 and selenium. Will also make sure I take the cider vinegar every day rather than when I think of it.
It is dangerous to take D3 without getting tested first. As it is fat soluble, excess is not excreted and can become toxic. How can you know how much to take without getting tested first?
Taking B12 without getting tested means that you don't have a base-line, and could have missed Pernicious Anemia. You would have to stop the B12 for five months, now, to know your true level.
What is D3 ?
A Vitamin 😊
Sorry, vit D3. There are two types of vit d - 2 and 3. The one you need to supplement with is D3. 
Take a holiday from Selenium from time to time - perhaps when you go on holiday !
I tried the same stuff as you but it did nothing for me. Thyro Gold, coincidentally created by Dr Lowe, is much much better. This might be the case for you too.
I have been considering giving Thyro Gold a try, and I like the idea that it was formulated by Dr. Lowe. I read that it's now available in two strengths to allow for fine-tuning. However, I have always thought that porcine thyroid hormone resembles human thyroid hormone much more closely, and therefore was preferable to bovine thyroid. I'd like to know if others have tried Thyro Gold, and if you are happy with it? Can anyone compare it to porcine NDT?
There is probably a thread already on here somewhere if you do a search for Thyro Gold. I don't know if it is because there are less fillers, but I find it much more effective than Thyroid S. I've also tried others, but Thyro Gold works best for me. The 300mg size is for those who have had their thyroid removed (according to Tammy Lowe). Having said that, I take two and a half 150mg capsules a day - one and a half first thing in the morning and another one before bed and I was 'borderline'. If you have any questions, you can email Tammy, her address is on their website.
I have no thyroid and take 2.5 grains of NDT thyroid s per day. I am fine on this but I don't have any other problems with fillers etc.
When I was taking 3 grains per day my FT3 levels were 1/3rd over the top range.
I was diagnosed years ago by Dr Peatfield. I titrated up to a 300g thyro-gold a day and was on that and feeling good for a very long time. Now, years later, I only take a tablet when I feel I need it - I get through about 150 capsules a year, mostly in the cold winter period and generally only take one a week in the summer. I still have my thyroid. Dr Peatfield always used to say 'the body is a self-healing mechanism' and stressed that he treated according to symptom, and if you felt good, energetic and happy, you didn't need the pills. So I now take one when I'm feeling cold and tired. That seems to work well for me. Bottom line seems to be - you got to sort out what works for you (I also take a range of vitamin supplements - including Co Q10).
I am so far doing very well on Nature Throid since last October -( it was like a light bulb turning on for me - after Levothyroxine) I move differently , look different , feel different ! Had a lapse in December & have now increased 3 & 1/2 grains a day. Though I need To buy in UK from specialist Pharmacy ( get a private prescription which my endo doesn’t charge me for writing ) funnily enough I met a guy who worked on the pharmaceutical industry for years - he advised me to stay on the NDT rather than Levothyroxine! 👍
I don't understand how this works. Do you see a NHS Endocrinologist who writes you a private prescription for a medicine you need for you condition but which the NHS will not prescribe for a reason known or not known by the patients or Doctors so that you go via this route. How much does this cost. Ive been told that i need T3 but haven't been prescribed any as yet. Could you guide me throw this process.
Hello Angelica - I’m happy to send you a private message with my Endo. Name etc .
There are others on here much more knowledgeable than
Me - I only started My recovery last August after 20 awful years on Levothyroxine-
I see a private Endocrinologist- cost about £130 - he doesn’t charge me for prescription & he asks my GP to do blood tests on NHS - which is very good of him - previously my GP refused to do my T3 - but she does if he requests -
I have to pay for my NDT - approx £150 ( off top of my head ) for about 3 months ( taking 3 & 1/2 grains a day .
The big difference also was doing the autoimmune AIP DIET - it’s hard - but makes a huge difference in my experience
. I also take DHEA
Vit B12
Selenium
Do regular GUT Healing
Vit C
Magnesium
( having a break from
All vits at Mo as on holiday & not stressed ! )
I avoid SOY , Gluten, Dairy , caffeine -
Hope this helps ? Feel
Free to dm if you need more info ? I’m celebrating my birthday so may not be on here much for next week !
Does it cost 130.0 every time you see him and then another 150. 0 for the medicine so that's about 280.00 every three months. Is it a specialised lab that makes up the ndt.
I have only seen him twice since starting last August on my new thyroid journey - he answers my emails & has adjusted my dose of NDT - in between about 3 times via email. Without charge - and had looked at 2 blood tests via email without charge - so he’s a star iME. I agree it’s disgusting that I have to pay for this and my NDT a& all my supplements- but I had no choice that I know of ? I was barely functioning before - now much better - I’m on a strict AIP diet too & organic veg costs more ( I use a well known organic veg box scheme ( don’t think I can say the name here ) have done for 10 years & love it - the taste is amazing of the veg.
Yes I buy from aspecialist pharmacy in UK - I did try the online one from overseas but even then had to pay an import duty ?
take 2 and half grains and see how you go, also you should be able to feel yourself go hyper when your'e taking too much . MY NDT requirements swing by approx 1/2 to 1 grain winter to summer. Also It depends how much physical work I'm doing .
Yes, I think increasing the dose is the way to go.
Sometimes I get what I think are a few bad thyroid days ? 🤔gritty eyes , dry mouth , brain fog , can’t work at my computer or desk - cognitive fatigue - but I don’t feel confident enough to adjust my dose ? Can’t tell if I’m hypo or hyper ! Sometimes o can feel my heart beating fast & if I drink !! My husband can even feel it beating in our bed ! 😩
Can you explain what you mean by "I thought I was doing really well"? Do you mean that you asymptomatic at this point? It would also help to know whether your hypothyroidism is due to Hashimoto's, thyroidectomy or some other factor. It boggles the mind how quick the medical community is to either rush to treat or withhold treatment based on labs alone. I think the important question is how do you feel? If you have persistent hypothyroid symptoms, then increasing dose is probably a good idea. Another question is, how much time has passed between the change in medication and this blood test? It can take quite a while before those changes are reflected in your blood work.
That is a good question - not having the constant headaches and palpitations from Levo made me feel a lot better, also feeling more sure of myself mentally. An odd, but welcome effect of NDT is that I don't need the loo so often and can sleep through all night and go for longer walks. Otherwise not much changed I suppose. After so many years of feeling terrible any small improvements feel like a cure.
I have only been told that I am hypo.
The latest blood test was about 5 weeks after the second batch of NDT.
Thank you for asking these questions - it is helping me re think my situation.
Hi .....I'm inclined to agree with Donnyjam.....and just follow what your body is telling you. A slight tweak in increase or decrease of dosage might be needed...but everyone reacts so differently to their thyroid meds....that only you and your body can know how you are feeling.
As said before in this blog, many doctors are very much in the dark where endocrinology is concerned and seem to go only by the numbers....and not always the symptoms.
Wishing you feel much better soon 😊
I to take ndt but I also supplement it with t3. My last blood tests were similar to yours yet I feel the best I have for years, I'm now able to lose weight, I no longer feel crazy hot when everyone else is cold and all the other symptoms I had a pretty much gone so I told my gp I don't care what the results say. I however decide to very slightly raise my t3 intake just to see if it had any effect, had a call from my gp yesterday telling me my levels are normal after my most recent test a few days ago. Was it a blip or skewed tests? I don't know? I also went gluten free again 6 month or so ago, that may have helped. Like it's already been said the most important thing is how you feel. If you want to go by lab results you need all your free's not just tsh and t4
Gluten really effects me - I puff on legs , fingers , face especially-
I’m confused as I thought NDT WAS T3 with T4 ? So I’m interested as to the extra T3 you say you take please ? I also take DHEA every morning. ( which I think is a testosterone hormone ?)
I also was going to ask 'how do you feel though' after reading your post. Not saying you shouldn't bother about what tests look like....but after years of mucking about and trying to find something I could tolerate I never do any tests and only tweak my NDT if I dont feel at the best I know I can be, with this condition ! I quite realise that most people do and like to feel they are guided in some way by them, but I only ever listen to my own body now and dont involve medics in any way. If you feel well (or even better than when on Levo) then you are on the right road I'd have thought and done be afraid to alter the amounts you take and when, only done in small increments according to how you feel.... I wouldn't mind betting you will find your sweet spot eventually, despite what any tests might indicate. As others have mentioned fT3 is seldom measured routinely anyway...best wishes.
Ive been on ndt for years now. I do take note of the blood tests alongside signs & symptoms. Its helpful to have the ft3 too especially on a ndt.
I think youve summed it up well that youve felt so ill for years that any small improvement feels good.
In your shoes I would up the dose. The reason why I say this is that last time your blood tests were fine but it could be your bodys metabolism is now rising, your are doing more too so now you need more. The average dose for a ndt is between 3-4 grains.
I would also monitor your pulse rate and temperature first thing in the morning. This will give an indication of your metabolism.
So I think its worth upping it by a 1/2 or 1 grain. And see how you are in 6-8 weeks. You can always drop it down if you get hyperthyroid symptoms such as high temp, hot flushes, very loose bowels or frequent stools., feeling shakey or a tremor.
3 - 4 grains is the average dose...really ? That's a helluva high does to consider average. Fine if you have no thyroid or a very low functioning one, but that would be too much for many people to aim for. I'm wondering where you got the data supporting your assertion from....
Apologies Greyjaybee I didnt mean to cause you offense. You are correct - I shouldve said for those on low functioning thyroid.
I’m on 3 & half NDT a day ? I have low thyroid- and I do the AIP regime - so I was hoping not to need such a high dose - but I do - so far
Interesting discussion. I read on here that someone stopped Thyroxine and just took prescribed T3. I tried this and within 6 weeks feel so much better. I believe the Thyroxine caused increased antibody production which reduced T3 efficiency.
I started takingThyrovanz50mg two weeks ago. It is too early to be sure but it seems less effective than
NDT from Thailand that I tried previously. I am due another blood test. TSH was 1.2 but like others, GP does not test for fT3 so I can only judge by how Ifeel.
Jcd16 T3 is the active thyroid hormone, T4 is the storage form of thyroid hormone. Some people for one reason or another do not convert t4 to t3 well so do best on either a combination of thyroid hormones or t3 on its own. Unfortunately t3 in the uk is silly money but I gather cheap in Europe .....another case of big pharma ripping of the uk.....Lol....
You do need the actual thytoid hormone levels testing as treating by the TSH is not accurate and often leads to under treatment.
Thank you, I will ask for all to be tested next time.
NHS rarely test the FT3 - sadly. Are you able to have Private Testing done through Thyroid UK ? See link below ...
Yes Martz is right....the only time theyve tested my T3 is because my ft4 was towards top end of range & my TSH was supressed. Even if docs ask for it they usually wont do it.....lol.
I’m not an expert but after 20 dismal hellish years on Levothyroxine ( with various GP s all saying I also had M.E - ) I’ve been on the AIP diet as much as humanly possible since last August ( made a HUGE ) difference ( and I’d already been gluten free for years before ) I Then was prescribed after asking & seeing a private Endo in UK Nature Throid - which I buy from UK. IME - the bloods read differently & my Endo seems so far to have got it correctly sorted ( I’ve upped my dose ) when because of my bloods a private Function doctor in London told me to LOWER DOSE ) I’m now on 3 & 1/2 grains a day & feeling better than a few months ago - good luck
Thank you for your reply, I don't think I could manage your diet, it is bad enough being gluten free.
Yes it’s a boring diet - but for me it made such a huge difference to my energy levels - more so than the NDT !! So for me it’s worrh it 👍 I cook from scratch & in batches ! Now on holiday so have relaxed a bit - but generally eat as natural as possible-
Tonight had so simple
Shelll on prawns
Asparagus seared In. Oil & garlic
Avocado
Vegetable crisps
Glass of CAVA ! Holiday !!
Banana & a square of raw chocolate
Lovely 😊
How much will it cost to go down this route. I'm not working so don't know if i can meet the costs but would like to try. Could you tell me how much it has cost you so i know whether its worth getting my hopes up for.
I can direct message you the pharmacy s I buy from if you message me?
I paid £103.10 for 3 and halfway grains of NDT - 3 Month supply - it’s a disgrace isn’t it ?
Apart from the out of range results how are you feeling in your self. Are you feeling well and active. Do you have hypo symptoms.
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