I have been on thyroid meds for about 3 years now with little success and I kind of feel I am only taking them to chase numbers and keep my TSH down. I was taking one grain of Thyroid-S a day. which kept my TSH at about 2.8-3.0 T4 at around 10 and T3 mid range. I had experimented many times with different doses but I never felt great even with a TSH of 1 .0 and T3 in the sixes on 2 grains a day.
Whatever dose of NDT I was on my T4 was always suppressed so my last experiment in Dec/Jan was to add 25mcg of Levo to the NDT but I kind of new what would happen and sure enough within 2 weeks my joints started complaining - I have tried 3 brands of Levo and my body just doesn't like it.
So now I have gone cold turkey and will monitor how I feel over the coming weeks. How long should I wait before I should book a test though?
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hankpym
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I’m on NDT. My FT4 is never high in range and occasionally just below it.
But because my FT3 is in the top quartile of its range, I just don’t worry about where my FT4 is. The active thyroid hormone is FT3, and I know from earlier experiments my body isn’t terribly good at converting T4 to T3.
Are you dumping all thyroid meds or just levothyroxine? Because if it’s everything, NDT and all, I’ll make a prediction about what will happen. You’ll probably feel slightly better for a week or two. It’s weird how that works. Even up to 4 or 5 weeks you might not feel too bad. But if your thyroid is knackered and/or the messaging from thyroid hormone receptors to your pituitary gland not especially great, you’ll shortly fall over a cliff and end up feeling very unwell indeed. And it can take months on end to get back to where you were. Stopping all thyroid meds abruptly is never a good idea.
From looking at earlier posts, I think it’s possible you might have benefited from taking more NDT rather than adding levothyroxine. Some people just don’t get on with Levo—it doesn’t suit them.
Other possibilities for continuing to feel unwell are deficiencies in ferritin, folate, Vit B12, Vit D—especially if you’ve been slightly under-replaced for any length of time.
Thanks for the detailed reply. I had experimented with higher NDT many times but with little success other than better numbers.
Yes, I am planning to come off for a few weeks to see if it has any benefits to my joints. 6 years ago I was a relatively fast marathon runner (3h 15m) now I sometimes struggle to run 5k without stopping.
What about the vitamin and mineral levels I mentioned? Are they optimal?
Looking at your replies below, I see you start to experience anxiety if you raise your NDT dosage above 2 grains. When you did that, were your vitamin and mineral levels optimal? I think it’s possible you’ve been ascribing symptoms to the wrong thing.
I’ve taken 3 grains a day for several years now. I’m not saying everyone should—we are all so very different when it comes to thyroid hormone replacement because a lot depends on how well your gut functions (mine isn’t great—I am highly gluten intolerant and I think some damage was done before I found that out).
Have you ever tried cutting out gluten?
I’m just saying there are a few other things to try before giving up thyroid meds.
Tried gluten free a few times but it doesn't seem to help. I am starting to think my gastric issues are not gastric at all but impacted by either stress or something else.
A) on far too small dose of levothyroxine at 25mcg with TSH around 5
B) on one grain of NDT
Nether levothyroxine or NDT “top up “ failing thyroid
On levothyroxine dose will almost always need to be increased slowly upwards in 25mcg steps until eventually on, or near full replacement dose of 1.6mcg per kilo
Are you still taking PPI for acid reflux
PPI is to treat high stomach acid
Most hypothyroid patients have LOW stomach acid
Likely low vitamin levels as direct result of being hypothyroid and PPI makes this even worse
Recommend you get FULL thyroid and vitamin testing NOW
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
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 .
Last dose of Levothyroxine 24 hours prior to blood test. (taking delayed dose immediately after blood draw).
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)
If/when also on T3, or 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?
Private tests are available as NHS currently rarely tests Ft3 or thyroid antibodies or all relevant vitamins
Been through all that over the years. I have experimented many times with Levo over the years but even low doses result in side effects that are completely unacceptable - Levo is out for me - vitamins levels are good.
NDT at 1 or 2 grains brings my TSH down and raises my T3 but not sure if there are any benefits to this - I know at 2 grains then my anxiety starts to rise after a month or so.
Looking at my workout history my physical ability dropped quite considerably in the weeks and months after starting medication so there is something to explore here, maybe it is just coincidence or maybe it is not. I will soon see I guess.
I am interested in finding out if there is any benefit to NDT other than better looking numbers on a result sheet. And the only way to find out is to come off completely and monitor myself.
Maybe Thyroid S does not agree with you as well. I know many people swear by it, but I'm trying it now, and whilst it's a bit too early to jump to conclusions I'd say I'm not taking to it as well as I did on NatureThyroid.
Have you tried a different NDT? I know they are more expensive however.
Poor exercise ability could also be due to cortisol issues, maybe you need to look into taking a 24 hour saliva test.
Before I started on levo I appeared to be managing, could exercise etc, but once on Levo my health rapidly deteriorated. I HATE Levothyroxine, so every once in a while I'd get really low and be so ill I'd just stop cold turkey and get that lovely 'feeling good' phase that lasts a few weeks. I'd love to know why that happens.
Anyway the last time I did this, which wasn't that long ago, I came close to needing hospital, my TSH rose to 30 and my body started decompensating, I was getting mini blackouts, breathing difficulties, constant dizziness and kept falling over.
Apparently your thyroid shrinks once you take replacemrnt hormones, so you cant just go back to before you took it.
That was on Levo only. I imagine it would be worse having taken a product with T3 as well
First occasion I stopped about 9 months after starting on levothyroxine I was mildly unwell.
2nd time, about 18 months after starting, was very unwell but recovered fairly rapidly when back on levothyroxine
Third time I stopped levothyroxine completely, I was so ill. Dramatic weight loss, couldn’t eat, struggling to breathe etc, the medics were testing for MS, motor neurone disease, pituitary tumour etc
Took many, many months to recover. A year before I could manage to walk a mile.
Needless to say I never stopped cold Turkey again.
Yes one of the other brands NP, Armour, Erfa, or the powered versions like Thyro-gold or Thyro-active might suit you better. I noticed my stamina increasing after a few months on Naturethyroid, so experiment a bit and see where it takes you.
Thinking a bit more about it one other thing you might look into is getting your calcium and magnesium levels tested to see whether they are high or really low in case you also have an issue with your parathyroids, which can keep you feeling ill even when opitimally dosed.
It sounds like you’ve already made up your mind what you want to do. That’s absolutely your choice—I hope it provides some answers for you.
Re your question, which I realise I didn’t actually answer—I’d suggest testing at 6-8 weeks to see what the effect of cutting meds is. Most of the residual thyroid hormone will be out of your system by then.
I might go one more time and try another brand of NDT I guess it is worth a go. I am going to have a look around and maybe source some ArmourThyroid as it appears many of the others have stopped production.
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