Hi could anyone help with my results please. Six weeks on one grain Armour Ndt divided into two doses daily. Felt absolutely dreadful on it so stopped two weeks ago . Struggled to get out of a chair terrible joint pain headaches felt hungover every day of the last two weeks oftaking it . Doctor says my body didn't know what to do with it . Now been prescribed 25 mg Teva levothyroxine. I am anxious to take it as was first prescribed 75mg and had bad side effects . High heart rate anxiety through the roof . Blood test results Tsh4.2 . Ft3 4.6. Ft4 16.4. Tga 223. Tpo 600. Slight change in blood test results from may. This is a private clinic . Really do not know what to do for the best. Feeling quite defeated ATM. Could any one help me u derstand this . I think I could have a reaction to the chemical fillers maybe . It's not as natural treatment as I thought it would be .
Ndt unresponsive : Hi could anyone help with my... - Thyroid UK
Ndt unresponsive
molijanie,
Some people can't tolerate NDT without first building up to a dose of T3 using a T4/T3 combo which allows the ratio to be titivated. I find Armour quite T3 potent and have had to add a little bit of Levo to mine.
With Armour, if your bodies rate of T3 acceptance is slower than the rate your body needs to keep TSH suppressed, and you have any thyroid gland tissue remaining, activity can promote a Hashi attack. I notice your thyroid antibodies are very high and you say you have been feeling very unwell.
Also, if you have any nutrients (especially iron) and/or cortisol deficiencies then NDT meds are known to be most unforgiving in many people.
Many don't do well on Levothyoxine alone but with a little T3 added, the thyroxine generally works much better (there is a science to this). Have you tried T4 & T3 combo?
Are you lactose intolerant
Is that why you are starting on Teva brand
Alternative brands at 25mcg dose are
Vencamil - lactose and mannitol free
Mercury Pharma
Wockhardt
See how you get on
Retest 6-8 weeks after each dose increase
Starting on such a low dose may make you feel more hypo as you near 6-8 weeks…..this is indicative of being ready for next increase
Standard STARTER dose of levothyroxine is 50mcg
High TPO and high TG antibodies confirms autoimmune thyroid disease, also called Hashimoto’s
Thankyou. I told doctor how I felt and she said to try levo again at lower dosage no mention of increasing dose . Blood work didn't really change so gues I'm not suited maybe. She told me to take bioselenium by pharma nord to help convert t4 to t3 . Retest in 3 months . Not sure if I'm lactose sensitive tbh .
no mention of increasing dose .
Well she wouldn’t tell you until results are back, testing after 6-8 weeks after being on 25mcg daily
12 weeks is probably too long before testing, especially on such a low dose
most people need to increase levothyroxine dose slowly upwards in 25mcg steps (retesting 6-8 weeks after each increase) until eventually on, or somewhere near full replacement dose (typically 1.6mcg levothyroxine per kilo of your weight per day)
cks.nice.org.uk/topics/hypo...
bnf.nice.org.uk/drugs/levot...
nhs.uk/medicines/levothyrox...
Adults usually start with a dose between 50 micrograms and 100 micrograms taken once a day. This may be increased gradually over a few weeks to between 100 micrograms and 200 micrograms taken once a day.
Some people need a bit less than guidelines, some a bit more
TSH should be under 2 as an absolute maximum when on levothyroxine
gponline.com/endocrinology-...
Graph showing median TSH in healthy population is 1-1.5
web.archive.org/web/2004060...
Comprehensive list of references for needing LOW TSH on levothyroxine
Many people find Levothyroxine brands are not interchangeable.
Most easily available (and often most easily tolerated) are Mercury Pharma or Accord
Mercury Pharma make 25mcg, 50mcg and 100mcg tablets
Mercury Pharma also boxed as Eltroxin. Both often listed by company name on pharmacy database - Advanz
Accord only make 50mcg and 100mcg tablets. Accord is also boxed as Almus via Boots,
Wockhardt is very well tolerated, but only available in 25mcg tablets. Some people remain on Wockhardt, taking their daily dose as a number of tablets
July 2024
Crescent levothyroxine. Dosages: 12.5, 25, 50, 75, 100
(Not yet known if all approved dosages are or will be available).
Excipients: lactose monohydrate, maize starch, croscarmellose sodium, gelatin and magnesium stearate.
Lactose free brands - currently Teva or Vencamil only
Teva makes 25mcg, 50mcg, 75mcg and 100mcg
Many patients do NOT get on well with Teva brand of Levothyroxine.
Teva is lactose free.But Teva contains mannitol as a filler instead of lactose, which seems to be possible cause of problems. Mannitol seems to upset many people, it changes gut biome
Teva is the only brand that makes 75mcg tablet.
So if avoiding Teva for 75mcg dose ask for 25mcg to add to 50mcg or just extra 50mcg tablets to cut in half
But for some people (usually if lactose intolerant, Teva is by far the best option)
Vencamil is lactose free and mannitol free. originally only available as 100mcg only, but 25mcg and 50mcg tablets became available Sept 2024
March 2023 - Aristo now called Vencamil
healthunlocked.com/thyroidu...
healthunlocked.com/thyroidu...
How to get Vencamil stocked at your local pharmacy
healthunlocked.com/thyroidu...
Helpful post about different brands
healthunlocked.com/thyroidu...
List of different brands available in U.K.
thyroiduk.org/if-you-are-hy...
Posts that mention Teva
healthunlocked.com/search/p...
Teva poll
healthunlocked.com/thyroidu...
Once you find a brand that suits you, best to make sure to only get that one at each prescription.
Watch out for brand change when dose is increased or at repeat prescription.
Government guidelines for GP in support of patients if you find it difficult/impossible to change brands
gov.uk/drug-safety-update/l...
If a patient reports persistent symptoms when switching between different levothyroxine tablet formulations, consider consistently prescribing a specific product known to be well tolerated by the patient.
academic.oup.com/jcem/artic...
Physicians should: 1) alert patients that preparations may be switched at the pharmacy; 2) encourage patients to ask to remain on the same preparation at every pharmacy refill; and 3) make sure patients understand the need to have their TSH retested and the potential for dosing readjusted every time their LT4 preparation is switched (18).
And here
pharmacymagazine.co.uk/clin...
Discussed here too
healthunlocked.com/thyroidu...
Teva is the only brand that makes 75mcg tablet.
Aristo Vencamil and Crescent also do 75 tablets!
Apparently……has anyone actually got these as 75mcg tablets
I know Vencamil 25mcg is trickling through now
They are available to order on my pharmacy's ordering system! They were checking 25 (for me) and mentioned that 50 and 75 are also available.
Not sure if that is directly from Alliance or through another route.
And some months ago Crescent confirmed theirs were available - but we hear little about their products.
I was taking Aristo, now Vencamil and while I don’t feel great, they are not causing nasty side effects like Teva and Mercury Pharma have. The tablets also disperse within the mouth very easily, so I’m wondering if they might act faster? Though I know Levo is built up overtime.
Anyway I can’t say anything bad about the brand. It’s just a new name the fillers are the same.
Vencamil seem to dissolve/breakdown quickly …..perhaps this makes it easier to absorb in gut
I'd be careful about that.
For example, some years ago a phenytoin product changed to use lactose and that resulted in massively higher peaks in the blood because the active ingredient was absorbed much faster. (4.5 times what the previous product did.)
Disintegration is necessary and important and clearly Vencamil does disintegrate well. But it does not necessarily result in faster absorption.
Hi Moljanie - I know your pain - I too was put on a high NDT dose by a private doc - 2 grains armour, no titration and I was using only 50 Levo before. Needless to say after about 3 weeks I was the same as you and had to stop it. I wonder if it’s the same doc? Anyway, I started again at a lower dose and just never got on with it. I do have low cortisol throughout the day which rises at night and the doc recognised this and told me to keep taking the adrenavive I was taking or I’d crash. I felt completely toxic by the time I spoke to her - about 7 weeks after starting. My tsh and T4 were suppressed, I think it’s the worst I’ve ever felt during all my thyroid self treatments. Have you had your cortisol checked?
Hi yes cortisol was tested but doc never com.mented on it so must of been OK. I have pm you about doctor blood tests didn't really change so ndt not for me I guess
Hi yes cortisol was tested but doc never com.mented on it so must of been OK.
I would suggest you request to see actual results
They don’t comment unless you have Addisons. Now that I know who you’re seeing I’m of a mind to report them to TUK as they’re on their list and they’re behaving irresponsibly by not suggesting titrating. Ask for your cortisol results, in fact ask for ALL the results, you’ve paid for them and you’re bloody well entitled to see what’s happening when a doc is not working well for you. I get the impression this doc just throws something at you and sees what sticks. To put me on 2 grains straight off was lunacy.
Hey there again :
Did you slowly build up to 1 grain - starting with a quarter grain and building up over a couple of weeks by 1/4 grains ?
Were your core strength vitamin and minerals - ferritin, folate, B12 and vitamin D at optimal levels ?
You can get NDT in capsule form - some split the capsule and just swallow down the contents with water if you think it could have been the fillers.
Did you ask to try liquid T4 - as suggested the last time I replied to you ?
Hi thankyou for your reply. I was put on one grain daily and kept on it for six weeks till I felt so weak I stopped it . Doc has said I should try lower dose levo now and to test in 3 months and take selenium to help convert . Not feeling co fident tbh
Ok - so if you started on 1 grain it was too much - too soon :
Oh . Surely that doctor should have known that. Maybe find different doctor 🤔
Not necessarily - we need to be able to know what to do for ourselves - and start learning to read our own bodies as we are the one dealing with symptoms - and I explained all this to you a couple of months ago
Pennyannie - with all due respect I would expect a doc I’m paying £250-300 per half hour for to know about titrating doses of whatever they prescribe. This same doc put me on 2 grains of armour without titration and I ended up very unwell.
I don't disagree -
in 2016/17 I too paid out a similar amount of money to see privately the Head of Endocrinology at the only hospital in my county - where all my treatment ( Graves - RAI treatment 2005 ) had happened -
only to be told to go on the internet and buy ' it ' and come back to me and I'll tell you How I Will Dose and Monitor you -
I was so angry - I did buy ' it' and decided I couldn't give that man any further satisfaction + on a single persons pension couldn't afford to massage his ego any further - and read up and Did It for Myself :
Disappointed, disillusioned and disgusted - I now stay away :
I think you made the smart choice.
Read, read again and write out anything you believe relates to your own health issues - - understand and question yourself - and I think anger was my driving force.
I'm with Graves and was post RAI thyroid ablation and refused any treatment options other than T4 - and more unwell than I 'd ever been in my life - with I believe the consequences of drinking of this toxic substance which are known but no one acknowledges -
ncbi.nlm.nih.gov/pubmed/306... - just need to read the Headline -
and RAI is still the first line treatment offered by the NHS if you - the patient - fail to get better - under their management of you with an Anti Thyroid drug !!
Wow..! My private GP costs me £75 for 15 mins and £150 for 30 mins. I’ve never needed longer than 15 (and he hasn’t charged for going over by 5 or so mins either). He will do remote appointments after you’ve been to see him in person once, which might be an option if you do decide to move GP. Happy to send details over private message if you’d like them.
I really hope you find a workable regimen soon. What a tough journey 😞
Thank you TheMudRunner - you’re fortunate to have found a good doctor. TBH, I’m so fed up of specialists ripping me off I’ve decided to just self treat, and read up as much as I can. The OP might be interested though.
Apologies for replying to the wrong bit of the thread 🫣 Glad you’re sorted though. Not easy to find the right people to help.
I am also seeing the same doctor (I have just worked out via Jamima) and she has also made me very unwell.
I’ve just asked TUK to remove this doc from their recommended list of private specialists. As I’ve chatted privately with you both, the same problems are cropping up and this doc seems to provide a cut and paste approach and then scant support when things go wrong. I’ve no idea why the doc doesn’t recommend titrating but it’s making people unwell.
If you expect that just because you paid, you haven’t read many cases on this board. First rule of thumb is go low and slow regardless of what any doctor says. If they prescribe a grain, cut it into quarters. It’s hard as Armour crumbles but you can learn how to do it. They all tell us to start too high.
I expected that the doctor proclaiming to be a thyroid specialist would know that going from 50 dose Levo to 2 grains without titrating might involve some hiccups. Providing a medical service where you know the patient will suffer is unethical. I’ve read lots of posts suggesting to start on a 1/4 grain but why would I literally go against a doctors prescription? You seem to be suggesting this is my fault.
I'm suggesting it's up to us to be as educated about our issues as possible and to be able to comfortably go against a doctor's prescription when necessary. If you had come here first and asked if people had a view on switching from 50 Levo to 2 grains of NDT you would have had a LOT of responses telling you that was too much too soon.
I switched from double your Levo + about 20mcg T3 to 2 grains and still suffered a bit on the rocky road to settling down. There are no true thyroid specialists in the UK. Endos are diabetes specialists. They often do very strange and damaging things to innocent thyroid patients who trust them. We can no longer trust them to help us. Use the medical services for thyroid to provide the tests and medication you need. But do your own research first and you will probably have to pay for some medication on top of what the NHS will provide if you want to get well and Levo on it's own doesn't work. It's not ideal. It's not even ethical. But it is where we are at now.
You would expect someone who touts themselves as a ‘thyroid specialist’ to have the necessary smarts or at least experience in dosing and/or other mitigating factors in our symptoms. Sadly my rodeos with ‘thyroid specialists’ would indicate that no, no they really don’t, and there seems to be an industry cropping up much like that with the ‘moneypause’ whereby docs take advantage of people who are truly desperate, their patient numbers grow rapidly and they are simply not dedicating enough time to actually investigating the real individual issues. This doc seems to be one of those but they’re certainly not the only one.
I think the thyroid money making industry started long before the money pause industry. But I totally agree with you about both. There are so many unscrupulous people who are jumping on these bandwagons. When it comes to health, believe nothing and trust on one is fast becoming my mantra.
It’s truly awful, and they’re working fast and loose with the "I will abstain from all intentional wrong-doing and harm" part of their oath.
The moneypause—I like that!
Or rather, I don’t. But the description is perfect. 👍
Yes, unfortunately a big industry of snake oil merchants offering everything from herbs to breathing exercises. Women are spending a fortune in desperation. Sickening.
I don’t understand “money pause” but I would like to. Have checked Google and I still don’t have any certainty. Would you have a go please?
Moneypause is the nickname attached to the alleged Menopause clinics/ doctors/ snake oil products touted at women suffering with horrendous menopause issues and desperate for help not provided by NHS.
Aha! Now that makes complete sense. Thank you.
When I first came off 100 levo after 6 months I went onto NDT. I was told on this site to finsh the Levo and take 1/4 grain of the NDT the following day. It worked out well that was back in 2016. You still had some T4 from your Levo in your blood that can take weeks to go.
I increased by just 1/4 about every 10 days or so to reach my perfect dose of 2.25 grains.
I think that your doctor was wrong in the way that you took it.
I'm sorry you're feeling so ill. I cannot understand why any doctor would start someone on one grain of Armour, it's too high, especially if you'd already had a bad reaction to 75 mcg T4. I was taking 125 mcg T4 and 40 mcg T3 when I was started on 1/2 grain of Armour and had to build up to 3/4 grain then 1 grain over several weeks/months.
Others have given you very good advice, but reading through the replies, it seems that you were put on this dose of Armour by the same doctor who put Jamima on too high a dose to start with as well. If this is correct please let Thyroid UK know so that they are aware and can possibly amend their list of doctors.
I was put on three and a half grains immediately by the same doctor. I have been so unwell, and it has cost me a fortune.
What were you taking before the doctor put you straight on 3.5 grains? I wonder if she's confusing NDT with glandulars, which could be started in such a high dose. If so, that's a really bad mistake. What reaction do you get when you complain? Also, without naming anyone, is it the main doctor who prescribes like this or is it one who works with her?
I was on 125mg Levo and 40mg T3.
I emailed and said I felt very unwell and her assistant replied and said I could try another medication (the Armour cost me a fortune!), but then I didn’t hear back.
I emailed again to say I still felt unwell and thought I should a new blood test done and, again, I didn’t hear back.
I’m due to see the doctor via Zoom again in November, but I will be cancelling my appointment and taking advice elsewhere.
Framboise I’ve chatted privately with the OP and jojozo and we’ve established it’s the same doctor. I’ve requested that TUK remove the doc from their recommended specialist list.
From observation, those who struggle most with starting any kind of thyroid replacement including NDT and levothyroxine struggle because their levels of ferritin and/or Vit B12 and/or folate and/or Vitamin D are low.
Seems to be particularly true for those low in ferritin. So it can help enormously to start working on getting levels up to optimal levels. Once they are, your ability to tolerate thyroid hormones will most likely improve.
When you’ve been hypothyroid for a while, your body will be depleted of many important nutrients—largely because gut absorption is impacted by being low in thyroid hormone.
This doctor knew my folate levels were low when she put me on Armour. She told me to supplement at the same time.
Hi moljanie❤️
I have suffer since full thyroidectomy on synthetic T4 and T3 , for 5 years my endocrinologist and gp just kept giving me synthetic thyroid medication knowing I could not stomach it.
My blood work proved it as I couldn't get out of hypo, mainly because the synthetic stuff was playing hell with my colitis I'm also lactose intolerant , I also have primary hyperparathyroidism in the beginning of this year I'd had enough and my son paid for private ndt , I was very cautious at first because of the hell I'd had on synthetic thyroid hormone.
I was advised to start on the one grain which seemed OK...no bad side effects then after 2wk I was advised to take 2 grains almost immediately I noticed this was to much I came on here and received some great advice from members, first I'd taken to much in such a short time .
I re started with half a grain for 3wks then built up slowly I'm now on one and a quarter grains, just got my next prescription and I'm starting on one and a half grains.
But just 2wks ago I started feeling unwell again...not with gastritis issues but a slight headache some light sweating, loin pain and body or bone pain...Immediately thought " ho god I hope its not the thyroid medication " but luckily for me the nurse who was supposed to be doing my thyroid bloods did a parathyroid blood instead (mistake) but I'm glad she did because my parathyroid was over range ..so the symptoms were of parathyroid and not anything to do with the ndt🥵 sometimes we can mix symptoms up thinking it may be the medication I'm taking when in fact you could be having a flare up as I just had🤦♀️
But you need to go very slow with ndt..do it in small doses building up so your body becomes use to it 👍
Hi thanks for your reply. I'm so disappointed with my treatment . Have never felt so ill tbh. I'm not going to take that docs advice as twice now I've had a bad response to both meds . I cannot cope with any more effects on my body from her prescribing . Sad state of affairs really 😕
Hi,
Why did you split your 1 grain of Armour thyroid? I take Armour thyroid and I take my full dose early morning at 6am with a glass of water and then go back to sleep for a couple of hours and then get up and have breakfast.
I also found that splitting the Armour tablets was difficult because of the size and splitting it led to powdery residues and wastage. This meant that they weren’t as effective so, I alternate my dosage daily.
I hope this helps.
TTxx.
Hi I was told to split the dose by the doctor. And yes you are right . Impossible to cut armour in half withut crumbling .Doc said to snap it ! That I just couldn't do . Rubbish prescribing .
Hi,
I would take it all in one dose in the morning if I was you. I do that and my endocrinologist agreed with me when I showed him what happened with a pill splitter.
TTxx.
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