Have been hypothyroid for many years now, orginally given thyroxine and didn't feel too great being on it. Researched on alternatives, Armour did the trick until they changed the formula, tried WP thyroid, still no better, then found NP thyroid, which I thought worked like a charm. Recently, feeling menopausal, hot flashes, weight gain etc, went to doctor for blood test to see if my symptoms confirmed menopause, asked me how I was doing re thyroid, said I was doing ok, taking my NDT, suggested I have it checked again ( last reading TSH 8 back in 2015). Results! Vitamin D very low, menopausal, yes, but not to the extent of feeling so bad, low and behold TSH levels 70, I was shocked and then upset, to think that the NP thyroid wasn't doing it's job😧. Back on thyroxine 50mgs and then back again in 6 weeks for the usual blood test. To think, all this time that NP thyroid was helping me in actual fact, making me feel worse, could I have been shipped sugar pills instead, all that money and false hope. Has anyone else experienced this as well? Not keen on taking thyroxine as I didn't feel the effects as I did with Armour. Why didn't NP thyroid work for me and for hundreds of others it has?
Back on Levorhyroxine 50mgs😩: Have been... - Thyroid UK
Back on Levorhyroxine 50mgs😩
Are you supplementing for low vitamin D. What about B12, folate and ferritin levels too
Do you have Hashimoto's. If so are you gluten free
Once you get TSH down and vitamins up to good levels, if Levo is still not satisfactory, you could add T3
Supplementing with vit d at 4000 iu, selenium 200pg ( seemingly helps with conversion) as for vit b12, foliate and ferritin levels, have never been checked, therefore, not supplementing currently. I have never been told if I have Hashimotos or nor. When I return to Doctors for the follow up blood test, will ask if I could be tested for the following and also ask what type of hypothyroid I have. Many thanks for your advice and your prompt reply.
Doctors think testing for Hashimoto's (they call it autoimmune disease) Is irrelevant, because they don't know how to treat it.
But we need to know,
About 90% of hypothyroidism in Uk is Hashimoto's
Spacenk,
Perhaps you weren't taking enough NP? If TSH was 70 I very much doubt that 50mcg thyroxine will be sufficient.
I agree! When I was first diagnosed by dr skinner my tsh was 3.6 and I was on 100mcg!
I Am not a doctor but 100 mcg wow 😳 for 3.6
Well it went up to 125mcg because that wasn't enough, that sent my tsh just below 1.. turns out I don't convert T4 to T3... 100mcg is not a high dose... below that, i would think, is really starter dosage to build you up. As everyone says though, tsh is not the best measure. I now take 3 grains NDT, b12 injections and vitamin d because all on these were low. Can't say I feel brilliant, though that might be down to years of vitamin deficiency (my joints are terrible and I still get pins and needles in my hands, though much improved) but I am much better than before. I was initially under the care of dr skinner - he taught me a lot. The most thorough check I have ever had. I have never felt that anyone really treated me properly since.
I was on NP thyroid at 1.5 grains which I believe is equivalent to 100mg of thyroxine. Reckon you are correct at 50mg being too low a dose currently but NHS doctors are so cautious these days, only time and blood test will tell.
I reckon that you still need a higher dose - I was on no thyroid but felt better on nature throid... it still worked though. You probably were feeling better but needed a dose increase.
No, no, no, there's something not quite right there. You thought it worked like a charm, right? Don't you think that if it hadn't worked to the extent of a TSH of 70, you would have felt bad on it? I certainly think you would have noticed something was wrong. I think there's something wrong with the test you just had, and that, instead of pushing you back onto levo, your doctor should have double checked. And not only tested the TSH, but the FT4 and FT3, as well. Because if your TSH was really 70, then they would have been very, very low.
You know it is possible to have false high TSHs. Are you taking biotin in any form? Some sort of supplement? If not, it could be TSH antibodies. But the only way to find that out is to retest the TSH, but using a different type of assay. But, now you're back on 50 mcg levo? I don't think you're going to do very well on that. But, that will just prove that there was something wrong with your last test, I think. How much NDT were you taking, anyway?
I felt bad a while back but thought it was because I was experiencing menopausal symptoms, turns out it was my thyroid all along. Not taking biotin, however, was taking collagen powder for hair loss and dry skin. NDT was taking 1.5 grains per day.
I don't think collagen powder would affect your TSH result - unless you were taking it at the same time as your NDT.
1.5 grains isn't a very high dose, but even so, I wouldn't expect a TSH of 70 whilst taking it. Did you take your NDT on an empty stomach and wait an hour before eating, etc? Just like levo?
Came off collagen powder as I read it can affect thyroid in a bad way. Took NDT on an empty stomach, sublingually. Just can't win hey.
NDT is not supposed to be taken sublingually. It is designed to be swallowed whole. Maybe that had something to do with it...
Read that taking NDT sublingually gets into the bloodstream quicker, bypasses the stomach, therefore, quicker absorbtion, but do correct me if I am mistaken.
Molecules are too big to pass into the bloodstream that way.
Maybe so, but only going on what other forums and folk had been doing with good results.
But you haven't had good results, have you.
The manufacturers say that the tablets need stomach acid to activate them.
I know there's a lot of folk law that says it's better to take it sublingually - but a lot of these people don't even know what sublingually means! People talk about leaving it to dissolve between the gums and the cheek, well, that's not sublingually, and it won't get absorbed into the blood stream there.
I don't know about the size of the molecules, etc. but if it isn't absorbed through the skin, it just gets swallowed and arrives in the stomach that way. And, if you eat straight after, it will bind with your food and not get absorbed - what is left in your mouth will bind with your food.
But, have you actually tried swallowing it? Can you compare the results?
Greygoose - how does Biotin affect test results/ efficacy of NDT/ Levo ?
It skews the results of blood tests. I'm afraid I can't tell you anymore than that. It doesn't affect your thyroid hormone replacement, just gives false readings on TSH, FT4 or FT3.
For info on why Biotin may have an effect on blood test results for thyroid and many other things :
healthunlocked.com/thyroidu......
It's only necessary to stop biotin in any form for a couple of days before a test. And the testing machine may not be affected by biotin anyway. It is only certain machines that are affected.
Some test machines use a biotin based assay, if they do then biotin will skew the results, if we dont know what machine or assay is in use it is best to avoid biotin for at least a few days prior to be safe
I think that 1.5 grain is a very low dose of NDT. Many people seem to be on more. I was told by a functional dr in uk to split my dose and take 1 in the morning and 1/2 at tea time and then to increase by 1/4 grain in morning, hold for two weeks then inc by 1/4 grain in evening. She had me testing resting pulse and temperature all the time. I am now on 1.5 g AM then 1 g later in day of WP Thyroid. My temp was always just about 36 but now reaches 37 in the day and resting pulse raised too. I also made sure that ferritin, D3 and B12 are optimal. I had low ferritin 2 yrs ago that gave me hair loss. Get your vitamin results with ranges and post them on here. That's what I did
Thyroid S works really well for me. Thyroid levels perfect, just had a thyroflex test which is 89% accurate whereas bloods are 18% accurate. May be worth considering if Levo doesn't work for you.
I can only agree, Thyroid-S has worked great for me as well...much better than both Armour and Erfa prescribed by my hormone doctor, and at a fraction of the cost of prescription NDT. NP and WP Thyroid are not available in Belgium so have not tried them, but I can only agree with what GreyGoose says: if your current regime has not worked for you so far, you need to try a different approach.
Thyroid-S working really well for me too. Interested to know how you take it? Swallow whole or chew a bit? And split doses? Thanks in advance.
I take 1 grain first thing in the morning, which I chew into a mush and swallow. Wash down with a drop of water. Try not to eat within 1h or so but can't always do that much separation.
Take 0.5 grain similarly around 3pm. And 0.5 grain just before lights out, whatever time that happens to be.
I simply swallow the pills with water and take the whole dose in the morning. I have tried splitting it in the past but noticed no difference/improvement compared to taking a single dose a day.
Thanks for sharing. I might try that myself. Full dose together and just swallow - probably in the evening as rushing about too much in the morning. Will be interesting to see if there is any difference.
Katepots Yes I take ThyroidS (sublingually - tho it is not meant to be taken that way it seems ok for me no discernible difference from swallowing it whole) and I feel very well on it at 2.25 grains I take one dose in the morning I did used to split it but find it is fine in one. I tried naturethroid and it sent me a bit crazy I much prefer ThyroidS. Levo was a nightmare.
So it's OK splitting the Thyroid-S pills then...? I've been a bit hesitant to do that as they are coated and I did not think coated pills were supposed to be split...
I split mine to be able to get the right dose. I started on 1/4 tablet and 25mcg reduction in levo. Within days I started to feel much better. I had felt two dimensional like I had lost myself altogether it was very disturbing psychologically and I had almost lost the will to live, I felt so awful. After about three days taking just that 1/4 grain it felt like a jigsaw puzzle fitting back together again and I suddenly felt like the person I was before I became very ill with overt hypothyroidism and seemed to be back to three dimensions. It was a remarkable experience - truly wonderful. I kept upping the dose in accordance with the Thyroid Patient Advocacy Guide who advise splitting the dose once you go up from a 1/4 grain to a half so you take 1/4 am and 1/4 pm. I tried to take it all in one but started to feel odd so I split the dose and it went back to being ok again. I gradually built up reducing levo accordingly until it was all NDT and that was 1.25 grains. I was fine on that for a couple of years and split the dose at first but found it made no difference if I took it once a day and it was easier to remember. I felt really well for the first time in years. I have needed to up the dose and take 2.25 grains now not sure why they did not work as well. I never get any blood tests but just go on how I feel. If it get too hot and start feeling agitated I know the dose is too high. I had bouts of hyperthyroidism before I finally got diagnosed - just in the nick of time - so I know what it is like to have too much thyroxine coursing around - really horrible. If I start feeling cold and sluggish then it is going too low. To be honest I don't mess with my dose and have only really changed it once form 1.25 to 2.25. I think it must be ok to split the tablets and they only come in a one grain size when whole grain doses are not suitable for everyone. I use a Boots pill cutter or my teeth. There was a paper that checked to see if splitting tablets made any difference to the dose of levothyroxine patients got and it was concluded that the differences in dose from pill splitting quickly evened out and it had no discernable effect at all. I think you can safely cut them into smaller divisions. I think part of the coating is to stop them being easily forged. According to Stop the Thyroid Madness who have analysed all the available NDT brands ThyroidS have a sophisticated slow release formulation and are good quality. They give information about what is in all of them which is quite interesting and how they are supposed to be taken - worth a read. ThyroidS taste very pleasant like papaya and I take them sublingually but they advise to take them whole with water. From what Greygoose says it could make a difference. I did wonder if this might be why I needed to up my dose...
Great info, thanks
Hi Katepots, can you give any more info on thyroflex test?
Thank you.
m.youtube.com/watch?v=ZZK1q...
The lady that does it in the UK is in Reading. She does all sorts of amazing testing as uses American labs.
The Dutch test is fab as gives a complmete and complex overview of hormones.
Also amazing tests for gut health, well everything you can think of!!
I can PM you details if you like.
Hi katepots can you please PM the details of lady in reading...sounds v interesting.
I'm puzzled about something he says at around the 6.50 - 7.00 mark, when he says he will re-test the patient after they've been on thyroid medication for a while, and if their thyroid has come into the normal range he may take them off the medication and put them onto herbal medications.
What?!?
Selenium is great to use but I'd advise testing levels first as selenosis can cause awful problems. Too many people are just taking without testing.
Hi,so sorry to hear you are feeling awful. This journey of health can be tough. Please please get tested for autoimmune antibodies. If your GP refuses (which he shouldn't) you can check a new private company called Thriva, where you order kits to your home, take a pin prick of blood and send samples away. It's cheaper than other private places. Bring in mess will not prevent your thyroid getting attached and damaged by autoimmune antibodies, diet, stress reduction and sleep will help massively.
Also test your selenium and zinc levels, needed to make t3 from t4
Check for any heavy metal toxicity e.g. Mercury fillings. Hypothyroidism causes sensitivities to many environmental toxins, so look at reducing chemicals as much as possible. Thee are lots of things to consider but get tested and most importantly don't give up!
Dania
What's a thyroflex test please?
Kate has posted a Youtube video link just above your post which describes the test.
On NDT it was essential to have FT3 tested as when taking any form on T3 then that is the only accurate results unless TSH is high in the range which yours is. NDT and I'm assuming adding T3 to Levo have to be worked at, it's not as easy as taking Levo but it can make you feel better if that's what your body is needing. I tried splitting my dose but I kept forgetting the second dose so as I thought my body was now used to the T3 I took both together and it worked for me but I did my homework thoroughly first and asked questions, took in what others had experienced and corrected my conversion problem first so I've had very little problems once I actually took the plunge. I learnt to listen to what my body was telling me and I got regular blood tests so I knew whether I was on the right track. But don't give up, keep learning and keep a diary so if necessary you can pin point what may not be helping or can spot the positives to continue with. It can be a long journey to get things right but well worth the effort
I gave up on doctors and endos no help whatsoever! It took me 19 years to get correct diagnosis and was refused ndt and T3 only allowed thyroxine which tho it helped I still felt unwell and still had nasty symptoms, after a lot of research I now self medicate, every one is different what helps one does not help another sometimes it's a case of trial and error, I now take 150mg s thyrogold (dr john Lowe) plus 100 mg s T3 (Greece) I started just with the thyrogold made a big difference but gradually symptoms and flares increased so I added 100 mg s T3 gradually built up this is the best I have felt in21 years , I am not saying you should try this it may be totally wrong for you what I am saying is research , some sufferers need just thyroxine others ndt or T3 and some a combination , there is a lot of help on this forum every ones stories of frustration and annoyance at gp s and endos who in this day and age seem to know very little about thyroid disease but many eventually find the correct hormones too suit their particular needs, my husband has had 3 strokes he has Parkinson's and has dementia lives with only myself to care for him with a little help from a career in the morning, I could not have taken care of him if I did not feel as well as I do now .
Talking about how to take Ndt ..I take it at night 3 hours after dinner maybe I'm doing it wrong I found an article on coffee in the morning not letting pill to absorb by stomach ..so far my numbers are close to normal but I'm getting a new test soon will see how I'm doing .
Hidden i think helvella posted a Chinese research paper that showed taking it at night worked better than in. The morning as more thyroxine was absorbed. I tried but I often fall asleep in the evening - instantly often watching the box and might awaKe in the early hours sitting bolt upright on the sofa! Might be adrenals or just working outdoors in a physical job, although I do have a cousin with narcolepsy 😳...so I wasn't able to take it at a regular time at night but it ought to work better if you do.
Tsh110 ..I know it's hard to remember late at night ..and no kidding I'm taking adrenal support just in case ..thanks for your reply
I’ve read loads of replies on here so I don’t need to cover the things i’d normally mention like Hashimoto’s, B12, Folate, Iron, Ferritin and getting full lab panel done.
But have you considered Coeliac check? Could be that you are not absorbing rather than the pills being ineffective.
And deffo swallow whole else it simply won’t work as effectively.
XxX
Results on Armour Thyroid - Help
Experiences of moving from NDT to T3 only or T3/T4 combined?
An actual apology from a GP!!!!!! Thyroid patient fights back. 
Not feeling that great on Armour Thyroid 
