I started a trial on NDT over 8 weeks ago and my most recent blood tests indicate that my fT4 has dropped from 16.4 to 8.3 with TSH consistently low at <0.01 and fT3 stubborn at the lower limits of the range at 3.5?
I’m currently just taking the equivalent of 1 grain of Armour after being on 100-125mcg Levothyroxine but I’m still struggling with many of the classic symptoms of Hypothyroidism, fatigue and brain fog.
I wondered if anyone on Health Unlocked had experienced anything similar? My GP thinks it may be a reaction to the T3 in the NDT and proposes an alternate day reduction in my dose to 0.75 grains, but from what I understand from the range of posts I've read, 1 grain is still quite a low dose for maintenance and more likely to be insufficient. I suspect he may also want to propose switching back to Levothyroxine when my blood tests were perhaps more consistent, although rarely optimal? I realise from all my reading here and in the journal articles from Thyroid UK and other sites that Levothyroxine, NDT, Synthetic T3/T4 combination as well as T3 only treatments are not a silver bullet and highly personalised experiences.
I also recognise that I am embarking on a journey of trial and error, but I would like to persevere, as I've had many years of unsuccessful treatment on Levothyroxine from starting doses of 25mcg to 50 mcg through to 175 mcg doses, and have never felt even close to my previous "normal"? I wonder if I may actually need to increase my NDT?
I’d be very grateful for any advice or thoughts you all may have from your own personal journeys and experiences.
Many thanks in advance.
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I’m currently just taking the equivalent of 1 grain of Armour
Is it Armour brand you are taking? If not what brand?
I grain NDT is a very low dose, your results show you aren't taking enough. Many people on NDT take 3 grains, some even more, some a bit less. So you are looking at gradually increasing until you reach the dose which is right for you.
Taking NDT does tend to lower FT4 and TSH, with TSH often suppressed, it's just what it does, it's the T3 element in NDT that causes it.
Many thanks Susie, Yes it's Armour and I thought 1 grain is quite low from what I've read here and on other Thyroid related sites and journals. I think it's close to the equivalents in the literature that suggests 1 grain is "roughly" equivalent to 100mcg of Lenothyroxine? I think I've read on the Thyroid UK site that "generally, 1 grain is 60mcg and contains 38mcg of T4 and 9mcg of T3. Some brands have 65mcg. Equivalence charts show that 1 grain of NDT has the approximate equivalence of taking 100mcg of levothyroxine." I'm sure that I should be looking to raise my dose at least by a quarter grain, but probably more, although I don't have much experience with NDT doseage and experimental trials. I also believe that we all have slightly different "set" points and that there is a wide range of disparity between the TSH and fT4 ranges pointing more towards an "individualised" treatment protocol rather than the typical "one size fits all" approach based on monotherapy with Levothyroxine dose titrations to "normal" TSH and fT4 ranges in serum blood tests. I had asked for a fT3 test at the same time but apparently the labs rejected the fT3 request so I only received the TSH and fT4 results this time, which makes it more difficult to interpret. My TSH has always been on the low side, with correspondingly lower in range fT4 and fT3, which is why I have always suspected that my Hypothyroidism is Central (Secondary or Tertiary) rather than typical Primary Hypothyoidism. However, I have also had raised TPO Antibodies indicative of Hashimotos so it could also perhaps be a combination of elements of both. I was just wondering whether I should also use the blood tests, particularly fT3, as indicators of effective treatment. I know it's often been compared to Goldilocks and the Three Bears, and finding the holy grail but it's always helpful to hear from other people struggling on the same journey, especially if there are any "signs" or yellowbricks on the road to help me on my way? Thanks again, it's very helpful to know that NDT does tend to lower TSH and fT4 due to the T3 component but I also wondered if there are any helpful guides to titrating NDT doses and any literature on NDT treatment from the early days of treating Hypothyroidism before the Synthetic LT4 and T3 pharmaceutical equivalents became widely available and TSH and fT4 became prime indicators for treatment? I'm sure I've read a number of early medical journals and Endocrinology papers that suggest suppressed TSH is much less important when both fT4 and fT3 are in range, but wondered more about suppressed TSH when fT4 is also low and out of the 'normal' range? Hopefully, there are other NDT patients who may be able to share their experiences of the journey and perhaps allay some of my initial fears as I embark on my trials. Many thanks.
Is your Armour prescribed? If so your GP must write on the test request that testing FT3 is essential due to you taking T3 in the NDT. Just testing TSH and FT4 is useless when on NDT.
I think I've read on the Thyroid UK site that "generally, 1 grain is 60mcg and contains 38mcg of T4 and 9mcg of T3. Some brands have 65mcg. Equivalence charts show that 1 grain of NDT has the approximate equivalence of taking 100mcg of levothyroxine."
T3 is said to be roughly the equivalent of 3-4 times more potent than T4, so 1 grain is approximately 65mcg T4 and 27-36mcg of T4 from the T3 so 92-101mcg T4. But it's all trial and error, we need what we need so we need to take into account any symptoms as well as test results.
I also wondered if there are any helpful guides to titrating NDT doses and any literature on NDT treatment from the early days of treating Hypothyroidism before the Synthetic LT4 and T3 pharmaceutical equivalents became widely available and TSH and fT4 became prime indicators for treatment?
I don't have anything other than this treatment protocol for treating with NDT (and I'm afraid I didn't note where I got it from):
Starting dose: 1/4 grain (15mgs) in the morning and quarter of a grain in the afternoon and stay on this for 7 days. If no adverse effects:
Week 2: increase your dose by another 1/2 grain (30mgs) a day. Take half a grain in the morning and half a grain in the afternoon (total 1 grain daily) and stay on this dose for at least 3 weeks. If no adverse effects:
Week 5-6: increase by another 1/2 grain and take 1 grain (60mgs) in the morning and 1/2 grain (30mg) in the afternoon (total 1 and 1/2 grains daily). Stay on this dose for 3 weeks and again, if no adverse effects:
Week 8-9: increase by another half grain and take one grain in the morning and one grain in the afternoon and stay on this for another 3 weeks (total 2 grains daily).
This may or may not be enough. If you are still symptomatic, increase by 1/4 grain (15mg) every 3 weeks. If you feel overmedicated then drop back to the previous dose.
As for treating hypothyroidism before synthetic hormone replacement I don't have anything, sorry.
Many thanks, Susie, that's great! The NDT protocol looks really useful and I'll try to find out more. No worries really about the source, I'm just looking for some general guidance and signposts that have been used and/or worked for others. I also realise that fT3 is really the guide and I know my GP had asked for Full Thyroid Function Tests but for some reason the labs had rejected the request for fT3. I will try to ask for this to be specified in advance for the next tests. How often is a reasonable interval between tests when embarking on the NDT protocols? When I was taking Levothyroxine, I was being tested every 10-12 weeks but again fT3 was rarely tested unless specifically requested and even then, all too often it was rejected by the labs. I may be tempted to try Medichecks and Thriva panels if I have the same problems again with the GP's requests? I have also wondered about the DIO1 and DIO2 tests and MTHFR test for genetic dispositions as I know there is a family history of Addisons and other Autoimmune disorders? My main symptoms are fatigue, brain fog, weight gain and high cholesterol, which is also a familial trait. I often feel as if I am concussed and I rarely feel refreshed when I wake up, irrespective of how many hours sleep and the quality of sleep I get. Thanks again for the earlier posts - very helpful.
Many thanks, that’s very helpful. I’m glad there’s a ready audience with so much experience to draw from. I appreciate that we all travel on slightly different roads but share a similar journey and all your insights add to the foundations of our knowledge and understanding and the confidence to challenge the conventional wisdom for our common good. Thanks again.
Many thanks, that’s great to know. I think we’re all struggling to get a better sense of what works best and to explore all the options available to get back to a sense of “normality”. Thanks again for the suggestion to split the NDT dose the day before the blood tests and to test early morning. I’m sure that I wouldn’t have considered that in advance and I guess it will have an effect on the fT3 blood tests? Much appreciated!
I self medicate and have Graves Disease though had my thyroid ablated with RAI in in 2005. so I am not in the same position as you, but this is my experience trialling Natural Desiccated Thyroid.
I stopped 125 mcg T4 one day and started NDT the following and take NDT at around 3 am in the morning :
I took bench mark numbers of T3 and T4 before I started :
I monitored my blood pressure, pulse and temperature daily while building up my dose.
I started with 1/2 grain NDT for 1 week :
Week 2 - I added another 1/4 grain so now on 3/4 grain at 3.00am in the morning.
Week 3 - increased dose by 1/4 grain so now on 1 grain :
Week 4 - increased by another 1/4 grain so now on 1 + 1/4
Week 5 - increased by another 1/4 up to 1 + 1/2 grains
Week 6 - increased by another 1/4 grain up to 1 + 3/4 but felt a little edgey and uncomfortable in my skin so I dropped back down to 1 + 1/2 grains and stayed on that dose for 6-8 weeks and then took a blood test.
My TSH was at 0.01 : no surprise there : My T4 had dropped to just 25% through the range but my T3 had risen to 110% through the range : in fact my T3 and T4 levels swopped places with my bench mark blood test results as my T4 was 110% and my T3 at 25% through the ranges.
My blood pressure and pulse remained constant throughout this trial and my temperature rose from 35.4 to 36.6:
NDT was used successfully for over 100 years before the science of blood tests, guidelines and reference ranges, and you simply dose to the relief of symptoms and adjust your medication accordingly.
I read of some people dosing NDT am and pm - I never tried.
I read of many people on a higher dose than me, so you simply need to try and see what dose suits you best.
You look to stilll be undermedicated - has your T3 moved at all since starting NDT ?
No thyroid hormone replacement works well until your ferritin, folate, B12 and vitamin D are optimal so this might be an area to look at to improve your core strength and conversion.
Many thanks, Pennyannie, that’s great to know! Very helpful and good to know that the graduated approach has worked for you. It sounds like a great protocol to follow and sensible to trial small dose adjustments with sufficient time over several weeks to gauge progress based on symptoms and checks with blood tests every 6-8 weeks. I’ve had B12, folate and vitamin D issues and have had to take supplements over several months, including B12 injections every 3-6 months so that’s also really useful. I’m seriously considering having the genetic tests as I know there is some auto-immune issues in the family.
I forgot to say if you build up to 2 grains you then stay on 2 grains for 6-8 weeks and then take a blood test.
If your T3 hasn't moved much from before you started the trial and there is little improvement in your symptoms, NDT may not be the best option for you.
However if your symptoms have improved, and your T3 improved but you are still with some hypo symptoms, just repeat the process all over again, building up from 2 grains in 1/4 grain increments.
I think my dose is relatively Iow because I don't have a thyroid and am able to utilise and convert the T4 in the NDT well.
I still need to supplement on a daily/weekly basis my ferritin, folate, B12 and vitamin D.
The guidelines and ranges were introduced to be used with Big Pharmas rollout of synthetic T3 and T4 .
On NDT you are the best judge as to where you dose needs to be.
P.S, NDT works slowly and I still experienced improvements in lingering symptoms, that I 'd accepted I lived with and were " just me " several months after I had settled on my dose. I guess it depends how far down the slippery hypothyroid slope you have fallen before you start to build the ladder back up into relative " normality " .
Thanks again Pennyannie. I know that NDT is not necessarily the best option for everyone and it’s good to know that it can take a while to make progress after switching from Levothyroxine. I’m hoping to try this new NDT approach for the next 6 months at least and then evaluate it all again. I’ve never really felt that Levothyroxine has relieved my Hypothyroid symptoms and have been up as high as 200mcg before being advised to titrate back down to 125 mcg. However, in the absence of a full fT3 blood history, it’s been mostly guess work based on TSH and fT4 results - a familiar story for most of us at least until I discovered the Thyroid community more recently. I have also realised it’s not just here in the UK but I’ve recently discovered the Canadian thyroid advocates have similar issues as well as some other Commonwealth countries. Thanks for all your help and advice, it’s so useful to hear from other patients experiences and advocates for better treatment and thyroid health.
NDT used to be dosed by symptoms & some members who self medicate still use this method. However, as your NDT is prescribed so presumably being monitored your doctor will require labs to assess dose adjustments.
But without having FT3 tested it is difficult to assess. As your NDT is prescribed your surgery should note on the blood bag “T3 medicated. Please test as per endo’s request”. This always works for me 😁. If surgery/labs are still uncooperative members use private labs.
You are correct in saying "I think I've read on the Thyroid UK site that "generally, 1 grain is 60mcg and contains 38mcg of T4 and 9mcg of T3. Some brands have 65mcg. Equivalence charts show that 1 grain of NDT has the approximate equivalence of taking 100mcg of levothyroxine." And therefore this puts you on a slightly lower dose making you under medicated. You need a dose raise, hence are still feeling symptomatic.
TSH is much less important when both FT4 and FT3 are in range, and if you suspect central hypothyroidism is irrelevant anyway. FT4 bloods often drop when we start medicating T3. The FT3 level will be your main guide. Also T3 meds must be taken consistently, ie same amount, same timing daily.
All thyroid meds need adequate iron levels to work effectively. Have you had ferritin, Vit B12, folate and Vit D recently tested?
Many thanks Radd. That’s great to know. It’s very reassuring to hear that fT4 and TSH tend to be suppressed on NDT. To be honest, my TSH, fT4 and fT3 all tend to be comparatively low (marginally below the normal ranges) at baseline without any treatment. It was only by accident that my fT4 and fT3 were tested at all, as part of a full medical when I was working in the Netherlands but it has been a real trial of frustration, fortitude and perseverance to find a GP and Endocrinologist willing to even consider potential T3 options. My TPO antibodies were also discovered in a random follow up to blood tests following raised cholesterol and homocysteine. I still suspect that there is an element of Central Hypothyroidism in the mix although I’m not sure what the implications may be for treatment if any? Thanks again.
The treatment would be the same for central hypothyroidism, Hashi or a mix of the both, ie thyroid hormone replacement.
Raised cholesterol and homocysteine are a typical result from low thyroid hormone and should reverse when optimally medicated.
Elevated homocysteine may be due to low thyroid hormone levels that result in decreased clearance but also inadequate VitB12, VitB6 & folate (as these are required in the recycling of homocysteine that happens to conserve methionine) and/or genetic MTHFR factors that are common in Hashi sufferers.
Cholesterol increases when we haven't enough thyroid hormone to stimulate lipolysis (breakdown of cholesterol), and support the liver in removing excess LDL cholesterol. Homocysteine stimulates the production & secretion of cholesterol, and there is often a positive correlation seen between homocysteine & LDL cholesterol.
As you have these conditions you really need to get iron & nutrients levels checked out. It will be the iron that helps meds work effectively, and B vits & folate that will help reduce homocysteine levels.
Many thanks, Radd. I’m very tempted to have the genetic tests for MTFHR and conversion DI01 and DI02 issues as my fT3 when it has been tested is invariably in the lower parts of the “normal” range. I have also had B12 and folate supplemented over a number of years in the past. Is there a full range of tests available by Medicheck or other suppliers? I think a holistic overview would probably be very useful, if only to provide a comprehensive baseline against which to gauge progress. I’d also welcome any personal experience or recommendations? Thanks again for all your help.
Regarding possible MTHFR testing (which is expensive) & DIO2, I agree they can be useful as a focus but aren't essential because given your symptoms, it would be prudent to be supplementing the methylated forms anyway, and you could just add a little additional T3 to NDT if all else failed.
It is a part of the Hashi paradox that the adequate T3 levels we require for best functioning is the very thing many find the most difficult in raising because we aren't functioning well, but thyroid hormone conversion usually improves as we get better.
I have the DIO2 impairment but that test result doesn't tell us to what degree the negative effects are because other genes usually step in to compensate (as best they can) and knowing you have it can result in everything being blamed on it instead of looking outside the box and working with it.
You may find the result of improving any gut issues such as inadequate stomach acid (classic hypo consequence) may improve thyroid hormone conversion because 20% of conversion takes place in the gut. Even improving diet (maybe gluten/dairy free), removing stresses (as best one can 😊 ) will encourage better thyroid hormone conversion. Reducing any Hashi inflammation that risk altering the physiology of how meds are working might improve conversion.
In my mind more informative testing would be a saliva cortisol/DHEA test because this will allow you to supplement accordingly. I found knowing my levels & patterns also made me more mindful in ensuring I gave my body adequate opportunity for sleep at the right times/rest, down time, affirmations & being joyful (as best one can with low T3 levels! 😊).
Also have sex hormones tested. No hormone works in isolation so deficiencies here might result in elevations somewhere down the line that elevate binding proteins and risk disabling that hormone but also others from working effectively, etc.
And as already mentioned optimal vits and iron as vital. I can't see that you have mentioned a ferritin result?
Many thanks, Radd. Clearly there’s lots more to read up on and think about for my journey into the unknown but glad there is so much experience to draw on to help me on my way! Thanks again.
Hi SlowDragon, Many thanks for the suggestion for coeliac blood tests. I’ve had quite extensive gastrointestinal tests early on in my health journey when Thyroid issues weren’t really on anyone’s radar but low B12 and folate were picked up in blood tests after contracting malaria overseas. It’s all really useful detail to add to the health jigsaw. Thanks again. Much appreciated!
The predominance of Hashimoto thyroiditis represents an interesting finding, since it has been indirectly confirmed by an Italian study, showing that autoimmune thyroid disease is a risk factor for the evolution towards NCGS in a group of patients with minimal duodenal inflammation. On these bases, an autoimmune stigma in NCGS is strongly supported
In summary, whereas it is not yet clear whether a gluten free diet can prevent autoimmune diseases, it is worth mentioning that HT patients with or without CD benefit from a diet low in gluten as far as the progression and the potential disease complications are concerned
Despite the fact that 5-10% of patients have Celiac disease, in my experience and in the experience of many other physicians, at least 80% + of patients with Hashimoto's who go gluten-free notice a reduction in their symptoms almost immediately.
Eliminate Gluten. Even if you don’t have Hashimoto’s. Even if you have “no adverse reactions”. Eliminate gluten. There are no universal rules except this one.
Wow! More reading for me! I have totally missed the Gluten connection in Hashimotos and it’s certainly nowhere near the radar of any of my previous GPS or Endocrinologists. I have clearly missed this potentially important angle and it looks like there’s a good range of scientific research to underpin Gluten-free approaches to treatment. Thanks again! Not sure how I missed it! There’s so much more to the Thyroid than I had ever thought.
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