I started on 1/2 grain NDT three weeks ago. Felt okay the first week but by the second I was more exhausted than ever (I also have ME/CFS) and in lots of pain and couldn't keep my eyes open. I increased to 1 grain after the two weeks like my doctor advised and have been on this dose five days but still feeling just so exhausted, dizzy, shakey at times, weak and having heart palpations. What gives?. Will this improve?. I feel worse than before I even went on NDT.
NDT help : I started on 1/2 grain NDT three weeks... - Thyroid UK
NDT help
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SJ9129
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I would try an increase of 1/4 grain. I went up by a 1/4 grain at time because if I felt a bit jumpy I could always decrease it and then try again a week later. I eventually settled on 1 1/2 grains of Thyroid S but some people need more than that.
I've only been on the 1 grain for five days. Is it too early to increase it?. Also how would I get 1/4 grain as my capsules come in 1/2 grain
What kind of NDT is it? I was told that only to increase by 1/4 grain at a time and I used Thyroid S which are very small tablets(grains) and I used a pill cutter to cut them into quarters. Perhaps someone who has taken capsules will be able to advise you better than I can.
I'm taking a compounded version I had made up for me at a compounding pharmacy
Lucky you because I had to buy mine from Thailand because it is not available to many people here in the UK. Hopefully other members will be able to advise you about this.
Yes. I live in Australia and we compound it
You can increase dose by 1/4 tablet every few weeks and always take notice if your symptoms are resolving. When you reach an optimum dose (you feel well and symptom-free) remain on that dose.
I shall give you a link which may be helpful and is by a Scientist/Researcher/doctor who was an expert of hormones and he was also an Adviser to Thyroiduk..
His site is now archived as Dr Lowe died through an accident. His widow oversees the site.
He only took one blood test for diagnosis, and thereafter all the concentration was upon relief of symptoms by small increments of NDT or T3. T3 was prescribed for patients who were 'resistant' to thyroid hormones.
SlowDragonAdministrator
Welcome to the forum
Do you have any test results from BEFORE Starting on NDT
For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also EXTREMELY important to test vitamin D, folate, ferritin and B12
Low vitamin levels are extremely common, especially if you have autoimmune thyroid disease (Hashimoto's) diagnosed by raised Thyroid antibodies
What vitamin supplements are you currently taking
Do you have Hashimoto’s....if yes.....are you on strictly gluten free diet
Ask GP to test vitamin levels
Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)
If/when on NDt make sure to take last third or quarter of daily dose 8-12 hours prior to test, even if this means adjusting time or splitting of dose day before test
Is this how you do your tests?
If TPO or TG thyroid antibodies are high this is usually due to Hashimoto’s (commonly known in UK as autoimmune thyroid disease).
About 90% of all primary hypothyroidism in Uk is due to Hashimoto’s. Low vitamin levels are particularly common with Hashimoto’s. Gluten intolerance is often a hidden issue to.
Link about thyroid blood tests
thyroiduk.org/getting-a-dia...
Link about Hashimoto’s
thyroiduk.org/hypothyroid-b...
List of hypothyroid symptoms
thyroiduk.org/signs-symptom...
We need OPTIMAL vitamin levels for thyroid hormones
Yes. I've had all those tests. Is there a way I can send a screen shot of them?. I'm new to the forum and have no idea. I was diagnosed with Hypothyroidism and hashimotos in 2018. I was put on levo but it made me worse. I'm not strictly gluten free yet as my doctor thinks I have coeliac due to my bloods coming back that I do and I have to be on a gluten diet until I can have the endoscopy which I'm waiting to have done.
BEFORE NDT
TSH: 6.1 mU/L (reference 0.5-5.0)
T4: 13.8 pmol/L (11.0-22.0)
T3: 5.6 pmol/L (3.1-6.4)
TgAb: 28 IU/mL (<115)
TPOAb 228 IU/mL (<35)
All my vitamin levels were low but I've fixed them all up since then.
I'm taking D3/K2 10,000iu. I'm not taking any others as I don't need them anymore according to my doctor
I don't understand why your TSH is so high ... usually if you are taking NDT your TSH would be very low or suppressed. Hopefully SlowDragon will be able to advise you about that.
That was BEFORE NDT sorry. Should of clarified that. Haven't tested since as it's too early to
Ok ... I thought I was seeing things lol
Lol no sorry. I should of clarified. I have no idea what my levels are currently. It's too early to test and all labs are closed anyway until new years in my town
So did you try Levothyroxine.....standard starter dose levothyroxine is 50mcg and dose should be increased upwards in 25mcg steps until on FULL replacement dose
For majority of people that’s roughly 1.6mcg per kilo of your weight ....unless very petite that’s likely at least 100mcg
What’s the hold up on endoscopy
Strongly recommend getting all four vitamins retested .....certainly getting hold of recent results and ranges
Vitamins need to be OPTIMAL
I tried Levo for several months but had bad side effects and stopped it.
The hold up is there is a very long wait list due to covid halting surgical procedures in my country
I only had my vitamins tested about a month ago. These were my results:
S IRON 15 umol/L (5-30)
S TRF 2.6 g/L (2.0-3.6)
S TRF SAT 23 % (10-45)
S FERRITIN 42 ng/mL (30-200)
FOLATE 7.0 nmol/L (>6.0)
S TOTAL B12 564 pmol/L (200-700)
S 25OH VIT D 69 nmol/L (50-250)
Ferritin is too low - aiming to maintain at least over 70
Vitamin D too low - aiming for at least around 80nmol and around 100nmol maybe better
Folate is too
Low folate
supplementing a good quality daily vitamin B complex, one with folate in (not folic acid) may be beneficial.
This can help keep all B vitamins in balance and will help maintain B12 levels too
Difference between folate and folic acid
chriskresser.com/folate-vs-...
Many Hashimoto’s patients have MTHFR gene variation and can have trouble processing folic acid.
thyroidpharmacist.com/artic...
B vitamins best taken after breakfast
Igennus Super B is good quality and cheap vitamin B complex. Contains folate. Full dose is two tablets per day. Many/most people may only need one tablet per day. Certainly only start on one per day (or even half tablet per day for first couple of weeks)
Or Thorne Basic B is another option that contain folate, but is large capsule
If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 7 days before ALL BLOOD TESTS , as biotin can falsely affect test results
Low ferritin
Eating iron rich foods like liver or liver pate once a week plus other red meat, pumpkin seeds and dark chocolate, plus daily orange juice or other vitamin C rich drink can help improve iron absorption
List of iron rich foods
Links about iron and ferritin
irondisorders.org/too-littl...
davidg170.sg-host.com/wp-co...
Great in-depth article on low ferritin
oatext.com/iron-deficiency-...
drhedberg.com/ferritin-hypo...
This is interesting because I have noticed that many patients with Hashimoto’s disease and hypothyroidism, start to feel worse when their ferritin drops below 80 and usually there is hair loss when it drops below 50.
Post discussing why important to do full iron panel test
healthunlocked.com/thyroidu...
Thyroid disease is as much about optimising vitamins as thyroid hormones
healthunlocked.com/thyroidu...
restartmed.com/hypothyroidi...
Post discussing just how long it can take to raise low ferritin
healthunlocked.com/thyroidu...
In terms of iron. As I most likely have coeliac an iron rich diet didn't work for me. I also tried supplements and they didn't agree with me. I had an infusion many years ago but didn't help any of my symptoms. Unfortunately because my iron isn't out of the reference range, I'm not eligible for another infusion
I have a folate supplement that my integrative doctor prescribed and forgot to mention I take that. My levels are probably better now as that was around a month ago they were low and haven't had it tested since. Same thing goes with vitamin D. I'm on a supplement and haven't had it tested again yet
Hello SJ9129 :
I find for optimal conversion of NDT I need my ferritin at around 100 : folate at 20 ; B12 at around 500 + and vitamin D at around 100 :
I know from experience that when my ferritin started to rise from the low 20's my wellness, slowly, started to improve but at this time i was still on LT4 only, but the principle remains the same, optimal vitamins and minerals equals optimal T4 / T3 conversion, irrespective of which ever thyroid hormone replacement you are taking.
More recently, in this past year, I have seen a direct correlation between my ferritin level and my ability to convert T4 into the T3 :
With NDT you dose to the relief of symptoms - not a TSH - guideline nor a range :
NDT was successfully used to treat hypothyroidism for over 100 years, and way before any guidelines, blood tests and ranges which were all introduced to be used alongside Levothyroxine - Big Pharma's treatment for hypothyroidism.
With NDT you dose to the relief of symptoms. slowly upping the dose by 1/4 grains on a weekly basis - monitoring body temperature and blood pressure : my blood pressure never changed that much but my body temperature went from around 35.4 up to 36.6 where it generally hovers :
I would stay on the 1 compounded capsule for another couple of weeks allowing it to bed in and then if you can't acquire a 1/4 grain compounded capsule guess the option is to try the 1/2 and if you feel a little hyper, anxious, irritable, or just uncomfortable in yourself you'll know this is too much - so just stop, as it becomes apparent within a day or two, and just drop back down again as then at least you'll have an idea of where you need to be - however you may well be fine and need further increases anyway as I've read on people on up to and over 5 grains daily.
Since you have Hashimoto's you can experience fluctuating symptoms as your thyroid is liable to " swings " of both hyper and hypo when the gland comes under attack from your immune system - I read some people sensing a " hyper " phase coming on drop their dose a little, so to offset the severity of the attack. Ultimately your own thyroid production will become erratic, as the gland is further disabled and dies, and you will need to increase your thyroid hormone production to compensate accordingly and imagine this must be difficult to manage especially when switching to a different option of thyroid hormone replacement.
Was there ever a dose of Levothyroxine that " seemed ok " so to have a guideline ?
1 grain of NDT generally contains around 38 T4 + 9 T3 and is said to equate to about 75/100 T4 - Levothyroxine.
Unfortunately the only way I can get my ferritin to a good level is by an iron infusion but because it's not below range, I'm not eligible for one. Iron supplements give me bad gi issues and I've tried an iron rich diet which didn't work either.
When I was on T4 and my iron was optimal, I still didn't feel any better at all.
My folate and vitamin D are probably much better now since I've been supplementing since my last blood test.
I've been monitoring my body temperature although with a digital thermometer because I couldn't get ahold of a mercury one. Before NDT it was always around 36.6 now it's dropped even lower to 36.2?. I actually feel more hypo than I've ever been in my life since being on NDT. I feel like increasing my dose much sooner just to see if it makes any difference. I'm now at the point where I can't keep my eyes open throughout the day due to this unbearable fatigue. My joints and muscles are also so sore.
Wow. That's very intriguing. I've been getting hyper attacks and hypo. I've got a very weak immune system, so that doesn't suprise me.
Unfortunately not. Levo just made me feel like I feel now - absolutely atrocious. I just don't understand why I feel so bad on T4 no matter if it's Levo or NDT. I feel exactly the same on both. It's very frustrating. I almost feel like giving up on NDT all together. I can't go on feeling this bad day to day. I can't even get out of bed. It's really depressing. Is it possible I may actually of become hyper since being on NDT?.
Hey there :
No, I think I may have confused you :
You can become over medicated on any thyroid hormone replacement and experience symptoms of over medication which are similar to being " hyper " but you simply self adjust the dose down to the next lower dose which didn't give these upsetting symptom and is just a blip, and these symptoms go in a few days.
Your antibodies are over range, and I have jumped to the conclusion that your have Hashimoto's Disease, has this been confirmed by your doctor and have you had an explanation of what this means for you ?
This is a thyroid auto immune disease and with Hashimoto's your thyroid hormone production can be erratic as your levels " swing " between hyper and hypo when your immune system is active and attacking your thyroid.
The other option, since you do not seem to able to tolerate T4 at all is to consider taking T3 only - but again I believe it needs your core strength vitamins and minerals to be optimal.
Oh okay. That makes sense. So I wouldn't be hyper at the moment?. I just feel so awful. All my symptoms have amplified ten fold since being on NDT. I have chronic fatigue syndrome as well and it's so much worse.
I have decided to add an extra 1/2 grain to my dose today and see how I go over the next week. If I still feel really bad then I'm stopping it altogether. I really don't think NDT is the right medication for me. I'm so exhausted, dizzy, sore, depressed, shakey. I can't tolerate it much longer
I'm sorry you are having such difficulties - can your doctor/specialist advise on any of these issues ?
Do you have a diagnosis of Hashimoto's and understand the implications of the autoimmune thyroid disease ?
There is more information on the Thyroid UK website if you want to read up yourself.
I'm with Graves Disease and following RAI ablation in 2005 I now manage lingering Graves, thyroid eye disease and hypothyroidism.
Unfortunately my doctor isn't back from holidays until mid January. So, I'm kind of on my own at the moment not knowing what to do.
Yes. I was diagnosed 2018 but I've been sick since 2017. I definitely do understand. My autoimmune issues has caused me to have a very weak immune system and as a consequence of that I got occular shingles this year and now nearly blind in one eye.
Sorry to hear that. My eye specialist thinks I might have thyroid eye disease as well. I'm having an mri next week to confirm.
I'm sorry to read this :
Thyroid autoimmune disease can be diagnosed by a blood test and your results above show over range TPO antibodies which I believe is suggestive of Hashimoto's which is a thyroid autoimmune disease.
Yes there is also Graves Ophthalmology which runs it's own course and is not exclusively associated with Graves Disease. It is also known that the eyes can be affected when with a thyroid autoimmune disease, such as Hashimoto's.
Elaine Moore who writes extensively on Graves Disease has also researched and had published a book on Graves Ophthalmology - maybe check out her website as she has researched much on the autoimmune component of thyroid diseases.
I believe with Hashimoto's trying to reduce one's own immune system response is vital and apart from reading up on here and on the Thyroid uk website you may find dipping into the work of Dr Izabella Wentz .
P.S. Shouldn't you be fast asleep ?
Why I don't understand about my antibodies is they were over 1300 when first diagnosed but now they are much less?. How does that happen?. I haven't really been on meds or done anything different?
I will check out that website, thanks.
I have heard of her but haven't read much of her work. I'll look into that too.
I'm on day two of 1.5 grains. Still feel absolutely awful. When will I be likely to see a change in symptoms even just a slight one if this will work for me?
I have bad insomnia, unfortunately. That's not from medication. I've always had it.
Hey there :
As I understand it, your immune system attacks the thyroid over a course of years, slowly disabling the thyroid's output of hormones and ultimately totally destroying the gland.
The antibodies are a blood protein released in response to these attacks and act as a sort of clean up mechanism as their job is to combine with and negate any substances that the body recognises as alien, such as bacteria, viruses and foreign substances in the blood.
The antibody blood test simply identifies which disease you are dealing with - and guess these levels will fluctuate with every attack your immune system makes on your thyroid.
I don't think you can do much about these antibodies, as they are just that, the medical evidence of a particular disease, which, in your case, is Hashimoto's.
Ultimately as the thyroid is disabled, damaged and dies these attacks from your immune system reduce as the Hashimoto's Disease itself dies with the gland.
Throughout this period, as the thyroid hormone production become erratic the patient will need to be increasing their thyroid hormone replacement medication to compensate accordingly.
I think it's more about trying to calm down your immune system for which I read many people follow certain diet regimes. and keep reading of repairing " one's gut " first so to be able to build up one's core strength, as no thyroid hormone replacement works well if your vitamins and minerals are not optimal.
The body needs to be able to convert T4 into T3 - which is the active hormone that the body runs on, and said to be about 4 times more powerful than T4 : some people switch to T3 only - Liothyronine - if they are unable to find any relief with T4 :
I thought you were now on 2 x 1/2 grain -
Do you have a breakdown of how much T3 and T4 are in each capsule ?
Would it help to split - 1 capsule early morning and 1 capsule around 8 hour later : ideally leaving a hours gap before eating and 2 hours after eating :
P.S. OK - I've just looked back so you were on 1 grain and have now increased to 1 + 1/2 grains - apologises - so I think this is about 57 T4 + 13.50 T3 as this is the dose I take everyday :
NDT does take time to settle and " bed in " : but I found immediate relief, but then I didn't have a thyroid and had spent over a year building up my vitamins, minerals and adrenals - so there is no like for like I'm afraid.
Thanks for explaining all of that to me. Unfortunately I'm not feeling much better at all on this dose. I'm starting to wonder if NDT is the right medication for me. It's making me feel worse and it shouldn't be doing this 
No worries I think it will be best to talk it all through once your consultant/doctor is back - it could be that you will need to take Liothyronine - T3 only - and read the average person uses about 50 T3 daily, just to function.
If you want to read up a bit on this strategy have a look at Paul Robinson -he has written on T3 Hormone replacement - Recovering with T3 - comes to mind.
I'm so sorry for the late reply!. I didn't even get a notification that you had replied.
I decided to stop the NDT. I couldn't tolerate it anymore. I stopped it January 2. Unfortunately my extreme dizziness and exhaustion is still continuing. The dizziness and vertigo is actually getting worse and worse each day. Is this a normal thing to happen?. I was dizzy while on NDT but even worse now. Could it be withdrawal?. Could I be hyper?. I'm scared this will never go away
Hey there :
I'm sorry to read this - I don't know enough to say anything sensible :
It could be Hashimoto's - it could be something else -
Is there another doctor can you see another doctor until your own specialist returns to work :
You can't continue like this - you need medical help now - don't you ?
I will be seeing my local gp Friday but I really don't think she will even know what NDT is. It's just horrible. I've never been so lightheaded
Well just explain Natural Desiccated Thyroid ( NDT ) is a combination of both T3 and T4 thyroid hormones and widely used throughout the World in the treatment of Hashimoto's autoimmune thyroid disease.
The thyroid produces on a daily basis trace elements of T1.T2 and calcitonin plus a measurable amount of T3 and T4 - said to be approximately 10 T3 and 100 T4 :
NDT is pig thyroid dried and ground down into grains with a measure of T3 and T4 in every grain being used generally at around 9 T3 and 38 T4 depending on the brand.
With this disease your thyroid gland is slowly disabled and destroyed.
During these " phases " when attacked the thyroid goes a bit haywire and you can experience symptoms similar to that of being overactive / hyper but these " phases" are transient and after this " phase " is over your thyroid will try to restore normal function but is damaged and your thyroid function erratic.
With every attack your thyroid becomes more disabled and ultimately you will need full thyroid hormone replacement to replace and compensate for the dying glands lack of production as over time the gland become defunct and you will be suffering from hypothyroidism.
I hope that helps formulate an understanding of where you might be with all of this, but your doctor should have an understanding of what Hashimoto's means and hopefully have some suggestions, even if it's just a matter ruling out anything else, that might be causing this difficult time for you.
Is it worth going on the Thyroid UK website and printing out the information there on Hashimoto's Disease and the symptoms associated with AI thyroid disease ?
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