I have a few things that i'm trying to work out/confused about and looking to see what your thoughts and opinions are - please
I'm running out of my NDT (Thiyroid) tablets (can i say that?) and it's looking very unlikely to get any more supplies for the moment due to the Covid Crisis or any of the other brands for that matter. So i'm worried about how to manage that? Should i increment my dosage downwards so i get used to not having the NDT and should i return to Levoxothyrine?
I was prescribed Levoxothyrine (50-100mg) in 2014 after i had a general blood test taken - not because i was complaining of symptoms - and stupidly took the tablets without doing more research. Taking the levoxothyrine made me balloon - literally - and made feel awful in a 101 ways and really frightened me - with no support or help from the GP. Around the same time i was also told that i was post-menopausal - i was 42 - and until i had taken the Levoxothyrine had no symptoms of being menopausal - i still had regular periods. So they put me on HRT too. I"m convinced that the 2 are connected. I switched to NDT and I still remember sleeping the first night and not waking up and then not being constipated the next day!! It was a miracle.
Levo Results 2016 (July)
TSH 1.66 (0.27-4.20)
Free T4 16.0 (12.0-22.0)
Free T3 4.3 (4.0-6.8)
NDT Results 2016 (Nov)
TSH 0.01 (0.27 - 4.2)
Free T4 12.7 (12.0 - 22.0)
So i stuck with the NDT and look back on the Levo as horrific - but i'm now in a tricky situation in trying to get hold of medicine from a different country and feeling a little vulnerable in that situation and wondering if i should revisit Levoxothyrine but try to get the best dose or combine it with T3 to make it work optimally? I don't think i'll have much choice but worried that i won't be prescribed the T3 and i'll end up like a balloon again. My GP has no clue - but i can talk with him, he did refer me to Kings College for an Endochronology appointment but it was rejected - he may want to help me.
Today i've been reading "Your Thyroid and how to keep it healthy" by Dr Barry Durrant-Peatfield - he seems to have some good ideas - do you agree with him? He suggests taking Nutri's Thyro Complex - do you think thats a good idea?
My latest test results on NDT are:
Anti-Thyroglobulin Abs: <15 (0.00-115.00)
Anti TPO Antibodies: <15 (0.00-34.00)
Vit D: 100 (50.00-150.00)
Free T3: 8.4 (3.50-6.50)
TSH: 0.01 (0.27-4.20)
T4: 14 (12.00-22.0)
Ferritin: 46 (20-200)
B12: 509 (180-1100)
I don't suppose any disease is any easier to manage but it does feel a bit hopeless some days - why don't they take it seriously? I don't understand.
Would love your advice on my situation.
thanks very much
x
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missrees
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A lot of questions there! But, I'll try and answer a few.
Should i increment my dosage downwards so i get used to not having the NDT and should i return to Levoxothyrine?
You can't 'get used to' not having NDT if it's what you need. It doesn't work that way. It's not a drug that you can get used to being on a smaller dose, it's a hormone, and with hormones you need what you need: no more and certainly no less. You would have to take something else.
I was prescribed Levoxothyrine (50-100mg) in 2014 after i had a general blood test taken - not because i was complaining of symptoms - and stupidly took the tablets without doing more research.
Why do you think that was stupid? If your doctor prescribed it, it was pretty certain you needed it, because they don't prescribe it lightly! They hate diagnosing and treating hypo, and only do it under circumstances so extreme that even they are forced to notice!
What else would you do? And, what good would research do? You cannot live without thyroid hormones, and that's all a doctor will prescribe. Thousands of people do well on levo, there's nothing wrong with it per se. And, looking at those blood test results, the reason you didn't do well on it was because you weren't taking enough. It often happens that when starting levo, you develop symptoms you didn't have before, but you're not going to get rid of them if you don't take enough. Or, it could have been the fillers in the tablets. Did you try different brands?
Around the same time i was also told that i was post-menopausal - i was 42 - and until i had taken the Levoxothyrine had no symptoms of being menopausal - i still had regular periods.
That doesn't make sense. How can you be post-menopausal if you're still having regular periods? How did they diagnose that?
Levo Results 2016 (July)
TSH 1.66 (0.27-4.20)
Free T4 16.0 (12.0-22.0)
Free T3 4.3 (4.0-6.8)
Your TSH was too high, should come down to 1 or under. And your FT4/3 were too low under mid-range, should be at least over mid-range. How much levo were you taking?
NDT Results 2016 (Nov)
TSH 0.01 (0.27 - 4.2)
Free T4 12.7 (12.0 - 22.0)
TSH good for people on NDT. Low FT4 is normal for people on NDT. But, it's essential to test the FT3 when taking NDT, because it contains both T4 and T3 (levo is just T4), and the FT3 is the most important number. How much NDT were you taking, there?
wondering if i should revisit Levoxothyrine but try to get the best dose or combine it with T3 to make it work optimally?
T3 doesn't make levo work optimally. People normally look to taking T3 when they don't convert T4 to T3 very well, which doesn't seem to be your problem, according to the earlier results. T4 is basically a storage hormone, which has to be converted to the active hormone, T3, before it will 'work'. It's very, very hard to get T3 prescribed in the UK, because it is so expensive. And, it's getting harder and harder to find it on internet without a prescription. So, you might find that difficult.
What you could do is go back to levo, try different brands to find one that suits you, and increase your dose to a level that makes you well.
My GP has no clue - but i can talk with him, he did refer me to Kings College for an Endochronology appointment but it was rejected - he may want to help me.
Very few doctors of any persuasion have a clue. They just don't learn about it in med school. The vast majority of endos are diabetes specialists who don't have a clue about thyroid, either. And if you are unlucky enough to get to see one, they can really mess you up. If you really want to see an endo, make sure you know something about him before accepting an appointment - that is if they will give you an appointment, and if your results are all in range, then they probably won't.
Looking at those latest results, the first thing most endos would do is to reduce your dose, because your FT3 is well over-range, and your TSH is suppressed. And a suppressed TSH terrifies the life out of them! How much NDT are you taking there?
Your antibodies would appear to be negative. But that doesn't prove anything. One negative test is not enough to conclude that you don't have Hashi's.
Your vit D is good.
Your ferritin is appalling. That needs further investigation. And iron panel. See your doctor about that.
Your B12 isn't too bad, but I would want mine higher than that. No folate result?
why don't they take it seriously? I don't understand.
They don't take it seriously because they don't know enough about it to realise how serious it is. Why don't they know enough about it? It's all to do with politics and economics. It's a subject I could go on about for hours, so best not to get me started! But, let's just say it's a deliberate ploy by Big Pharma.
Thanks everyone so much for feedback - has really helped my mood and my brain this morning. There is a way!
I didn't try different brands of Levo - I don't think I knew that there were other brands and it made me feel so debilitated that I just wanted out.
The first blood test results were (I don't have the ranges):
June 2014
TSH: 5.5
T4: 11.8
They put me on 25mg of something - not Levoxothyrine - something else.
Then in October 2014 put me up to 50mg Levo - Synthroid?? after results:
TSH: 4.9
T4: 13.4
I stayed on 50 for quite a while and slowly my symptoms got worse - I increased to 75 mg - 3 days a week with the rest on 50mg and then switched to NDT in June 2016.
I have requested prescription information from the GP surgery i was at then. He was awful.
The Post-Menopausal results came through in Feb 2016 - i had started getting hot flushes a few months previously - which i think was through the increase of the Levo.
When first taking it - started off as recommended by 1/2 tablets incrementally over weeks. Going up to 3 a day beginning of last year and reducing it back down to 2 following last results this January 2020.
Latest Results
Mar 2019
Anti-Thyroblobulin Abs <15 (0.00-60.00)
Anti-TPO Antibodies <28 (0.00-60.00)
Vit D 100 (50-150)
Ferritin 46 (20.00 - 200.00)
B 12 509 (180-1100)
Free T3 8.4 (3.50-6.50)
Free T4 15.4 (9.0-25.0)
TSH 0.01 (0.30-5.50)
_____________________
Jan 2020 (had brain fog and took my NDT before test - so this is all a bit of a mess)
Free T3: 12.4 (3.10-6.80)
TSH: 0.01 (0.27 - 4.20)
T4 : 14 (12.0-22.0)
Liver Function - globulin, total protein, albumin, bilirubin, phosphatase serum level, serum gamma GT level - all mid-range
Serum Lipids - all mid-range but all slightly higher than previous test
Blood counts :
White Cell:
Neutrophyl 2.72 (2.20-6.30)
Lymphocyte 1.45 (1.30-4.00)
Monocyte 0.25 (0.20-1.00)
Eosinophil 0.13 (0.00-0.40)
Basophil 0.01 (0.00-0.10)
Full blood
Total white cell 4.55 (4.00-11.00)
Red blood cell 4.42 (3.80-5.80)
Haemoglobin est. 130 (115.0-155.0)
Platelet count 218 (150-450)
Packed cell volume 0.39 (0.37-0.47)
HbA1c 5.6% (4.00-5.90%)
Mean platelet volume 8.7 (7.40-10.40)
No B12
No Folate
Anti Thyroglobulin <15 (0.00-115.00)
Thyroid Peroxidase <15 (0.00-34.00)
________________
So - i could look at adding in some Levoxothyrine - a small amount and keeping my NDT at the same time? I didn't know you could do that...
I can definitely add in more iron - had been thinking i was lacking that anyway and i have already increased my B vitamins - so hopefully they should be looking better now.
Thanks again everyone - I am very thankful to you all - it feels good to be able to share this information and get help with it.
The first blood test results were (I don't have the ranges):
Results without ranges are meaningless. So, all I can say about that test is that your TSH was more than likely over-range, and you were hypo - you're hypo when your TSH gets to 3.
They put me on 25mg of something - not Levoxothyrine - something else.
Sorry, but there is nothing else other than levo. And, that is what they would start you on - although 25 mcg was too low, so that was building up problems for the future for a start!
Then in October 2014 put me up to 50mg Levo
As you can see, the 25 mcg didn't make much difference to you. They should have started you on 50 mcg (not mg). Also, they left it far too long to retest. It should be six weeks after starting levo.
And, then it seems just abandoned you on 50/75 mcg, which obviously wasn't going to be enough to make you well. So, the problem wasn't the levo itself, it was the ignorance of your doctors. Had you been treated correctly, the odds are that you would have done well on levo.
The Post-Menopausal results came through in Feb 2016 - i had started getting hot flushes a few months previously - which i think was through the increase of the Levo.
TSH: 3.43 (0.27-4.2)
T4: 16.5 (12.0-22.0)
Pretty certain the hot flushes were due to being under-medicated on levo, rather than being post menopausal! But, I don't know anything about SFSH and LH levels.
When first taking it - started off as recommended by 1/2 tablets incrementally over weeks. Going up to 3 a day beginning of last year and reducing it back down to 2 following last results this January 2020.
Increases and decreases of NDT should only be 1/4 tablet every two weeks. So, it sounds like your body has been through a really tough time and a lot of mistreatment.
Jan 2020 (had brain fog and took my NDT before test - so this is all a bit of a mess)
So, you can completely ignore that test, it won't tell you anything about your thyroid status.
So - i could look at adding in some Levoxothyrine - a small amount and keeping my NDT at the same time? I didn't know you could do that...
Certainly you could try that, see how it works for you. A lot of people Levothyroxine to their NDT. And, as it's only temporary, you don't have to worry too much if it doesn't work.
However, I would have thought this would be a golden opportunity to try levo only, but try it correctly. Because if it works for you, it would be the cheapest and easiest solution.
Brilliant - this is very very helpful - thanks so much! Helps me understand everything. Okay great - i'm going to try adding in the Levoxothyrine and see what happens. I'll report back! Thanks again Greygoose - sending you flowers and hugs!
I think, given your present situation, vis-à-vis NDT, it's now or never to try levo. But, as you've been on 2 grains of NDT, I wouldn't start levo at 50 mcg. More like 200 mcg and you can adjust from there. Or, if you feel that might be too much, try 150 mcg. Once you know from that how well you convert, it will give you a surer base-line for the future.
GreyGoose - sorry to be a pest. But my GP has agreed to try it out with me - and will also be willing to prescribe T3, if needed, in the future. This is very heartening. I think that the Endo telling him that they weren't interested made him feel more inclined to help - and this is 3 years of conversations. Good result! So one more question for you - how do i make the switch?
Make the switch from NDT to levo only? Well, you could either do a straight swop, or slowly reduce the NDT and increase the levo. But, that would be slow, so it depends how much NDT you've got left.
I hope you don't mind me getting back in touch but i got results back today after being on 150 levo for the last 6 weeks. I asked for the full panel for Thyroid but unfortunately they only tested the core. The results are a little high - which i'm surprised about. I don't feel like i'm running over. I've been sleeping, my appetite is good, my weight is stable, did lose some hair about a month ago, focus a bit off - but not awful.
TSH 0.01 (0.27-4.2)
T4: 23.5 (12-22)
T3: 5.1 (3.1-6.8)
I have an appointment booked in to chat with my Doctor on Thursday - who is pretty good and has said he will prescribe me T3 to try. So do you think i should try going down to 125 levo and adding in 5 mg of T3?
Doc can't prescribe T3 (i misunderstood) - he would support me in taking T3 if i am able to buy it myself. It's so frustrating. Is it still worth me taking the T4 if i can't convert. I know that everyone is finding it difficult getting their own supplies of NDT and T3 - so i'm not sure whether i'll be successful in finding it straight away.
When you were on levo only you were undermedicated which may explain the bloating and any other symptoms you had. Your conversion looks fairly good in 2016 and I think you would have benefitted from a higher dose.
Cannot comment on your NDT 2016 result as there is no FT3.
Your current results suggest to me that you need to take less T3 and more T4. I would be looking to cut back on the NDT dose and add in levo. This is based on my experience as I need FT4 and FT3 balanced - that is almost the same percentage through their ranges. Many of us need FT3 well over halfway and towards the top of its range; some can manage with a low FT4 but others need FT4 also well over halfway through range.
Vitamins also need to be over halfway through their ranges as a rough guide. Optimal vitamins are important to get thyroid hormones working. Your B12 and ferritin need attention.
If you add in levo because it seems that you converted well in 2016, it will convert to T3 and push up your FT3 higher. So for me the first thing would be to reduce NDT by a small amount to lower FT3 say a quarter of a tablet. Leave it 2 weeks. Then add 25mcg levo.
I have made this up on what I would do in your position so if your instinct tells you differently go with that. After the initial addition of 25mcg levo see how you feel. If you feel ok then I would leave it for 8 weeks to settle and do bloods and take it from there till you feel your results are balanced.
Good advice - i'm going to try it Lalatoot - worth a go. Thanks so much for taking the time - its really really REALLY appreciated. I'll let you know how i get on.
Hi, just wanted to say in regards to you ballooning on levo, I felt the same. Was really bloated etc, seemed like it happened overnight. I've just discovered that it was the brand I was on that was making me bloated, I was on actaivs/accord. I swapped to mercury pharma and no more painful bloat. So I'm going to see how I get on with mercury pharma. So is worth experimenting with different brands.
Neither did I till I stumbled across this group. I've learnt alot from this group. Would still be on Teva feeling very poorly. So glad I found it, they are all very helpful.
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