Feeling no better on Thyroid-S. What next?

[laelow]

Hi everyone,

I'm hoping to get some advice. I have M.E./CFS and Hashimotos. Was on 100mg thyroxine which I stopped taking 2 months ago when I started taking Thyroid-S instead, to see if I felt any better. Sadly I haven't noticed any difference in my symptoms (was really hoping for a miracle cure! If only). I'm taking 1 tablet of thyroid-s a day.

Not sure where to go from here - do I try a different sort of NDT, or go back on Levo and try adding T3?

I haven't had my blood tested for a couple of months. Last results showed some vitamins deficiencies which I'm addressing with supplements. Also showed poor conversion of T4-T3 (exact results in earlier post if you're interested).

Thanks in advance for your help.

Laura

[shaws]

1 grain of NDT is low. I am not medically qualified. When we start NDT, we start on an equivalent dose to levo. We then increase by 1/4 tablet every 2 weeks until we are symptom free. We should take pulse/temp before beginning and several times when introducing/increasing and if you feel hyper or too much, drop to previous dose which should be your optimum dose.

[laelow in reply to shaws]

Hi Shaws, thanks for your reply. I thought 1 grain was the equivalent to 100mg? Thanks for the advice about increasing dose - maybe I'll try this before switching meds again.

[shaws in reply to laelow]

1 grain is equivalent to 100mcg, but that doesn't mean it is identical in its effect.

web.archive.org/web/2010103...

The above doctor would never prescribe levo, only NDT or T3.

[laelow in reply to shaws]

That's interesting, thanks for sharing.

[Clutter in reply to laelow]

Laelow,

1 grain contains 38mcg T4 and 9mcg T3 which is equivalent to 65mcg Levothyroxine. Manufacturers say 1 grains is bioequivalent to 100mcg but most people find that is overstated and find it equivalent to 75mcg.

I would increase dose to 1.5 grains for 6-8 weeks and then have a thyroid test including FT3 to check dose is sufficient.

[laelow in reply to Clutter]

Sounds like a sensible approach, thanks clutter!

[Phoenix605 in reply to laelow]

I followed Clutters titration advice and take 2.5 grains thyroid-s instead of 150 levo. Multiply the (t3x3)+t4. 150 worked out between 2.25 and 2.5 grains so I tried both and 2.5 (162.5) suits well with pulse in 80s and temp around 36.4. I certainly dont feel like ive had a 100 raise and my latest FT3 was identical to my last levo test. I did find that anything over 2 gives me a headache a few hours later though so ended up splitting my dose but I work 24/7 shifts so it actually stops the daft o’clock slump as I just take the bigger split at the beginning of my ‘day’.

Clutter also recommended a 4 month trial once titrated and that does seem to havebeen about right. T3 is the only result that you really need on NDT and really needs doing once you feel well so you know what your Optimal is.

[laelow in reply to Phoenix605]

Thanks Phoenix for sharing how you've got on, that's really helpful of you. The calculation is also useful, I'll bare this in mind.

I'm slightly confused by your use of the word 'titration' in this context - do you mean the gradual dosage increases? Or dose optimisation?

With regards to pulse and temperature metrics - I've read about these being used in managing hypothyroidism but haven't found any figures - what constitutes a normal range? Do you have any more info on this? Also, what do you use to check your temperature? We only have digital thermometers and I read on Dr Lowe's Q&A that they're not very accurate.

Thanks again for your input, much appreciated!

[Phoenix605 in reply to laelow]

Sorry for any confusion I meant it in the context of both really, I got up to 2 grains fairly quickly then tested added a quarter, tested again and then settled where I am at 2.5. I had a long talk with Mr Google to finc out about temp and pulse. Thermometers are a bit like weighing scales, fine if you stick to the same one, I have had mine since well before diagnosis and know that normal for me was 37 with it, it dropped to 35.2 and is now 36.4 ish which seems to be my new normal as I am no longer feel cold so am happy with that. You are unlikely to find any other type these days. You are using it mostly to monitor change and if it is out it will be by a tiny amount but it will highlight any changes. 36.8 is only an average and you may naturally be slightly above ir below. If in doubt use a basal thermometer, they can shiwcthe tuny ruse caused by ovulation!

Resting pulse is considered normal anywhere between 60 and 100 but it is personal and linked to fitness too. If you are fit you are likely to be at the bottom end and at the top if you are very unfit. Again pre diagnosis mine was often upper 80s, I am relatively unfit and over weight so that is probably correct- on levo it was down to 62 which is way to low for me. I did find that when I first increased I was hot all the time and my pulse was around 100 but it was litterally for a couple of days until I adjusted to the extra T3. I had no palpitations and if it had stayed that high I would have returned to my previous level. Some people cannot tolerate having all their t3 in one go and find splitting is more comfortable and keeps things more even through the day.

I got optimal on levo and all the essential nutrients first but despite this I was having muscular issues I suspected were caused by the levo itself despite trying all the brands, hence the swap. I knew that having my FT3 over 5.5 was where I felt good which helped with getting my ndt right. My TSH has just snuck into the bottom of the range again which should keep the quack happy and my FT3 is identical which keeps me happy!

In theory you can do it without testing and keep slowly adding by quarters until you start to feel buzzy inside/too hot/palps etc and just drop back an increment at that point but I prefer to test T3 as I know where my sweet spot is and over medication is as unpleasant as under.

Hope that helps 😁

[laelow in reply to Phoenix605]

Super useful, thanks so much Phoenix! I feel armed with more information which is always good. Have started increasing my dose so will see how it goes!

[greygoose]

Those results are on levo, so not really helpful, are they? What you need are labs done now you've been on Thyroid S for two months. Otherwise, there's not really much anyone can say.

[laelow in reply to greygoose]

Hi grey goose, thanks for your reply. I was advised by another person on here that blood results are less useful when you start taking NDT. Am planning on getting them done soon though so will post when I do.

[greygoose in reply to laelow]

Are you sure that's what the person said? Or did s/he say that TSH and FT4 were less useful, and you needed FT3 when you're taking NDT?

[laelow in reply to greygoose]

I think she just said 'standard thyroid tests' or similar. What would you advise testing please? FT3? Anything else?

[greygoose in reply to laelow]

OK, I've just read it, and what she says is 'results will look skewed'. Which is rather a strange way of putting it. It's not that they're skewed, but that when taking any form of NDT, you can expect the TSH to be low/suppressed, and the FT4 to be low, because the body only hangs on to what you need. And, you don't need as much. Therefore, the best indication that you're on the right dose is the level of your FT3. You cannot dose by the TSH, as most doctors try to do!

So, you need the FT3, and antibodies, if they haven't already been done - TPO and Tg antibodies.

And, nutrients :

vit d

vit B12

folate

ferritin

These all need to be optimal for NDT to be used correctly.

[laelow in reply to greygoose]

That's really helpful, thank you!

[greygoose in reply to laelow]

You're welcome.

[fibrolinda]

You really need new blood tests to see what's going on, at least TSH,FT4, FT3. 2 months is a bit soon to say its not working I bet you need an increase. Why did you stop at 1 thyroid s daily? Most, I believe, tend to work up by a quarter grain every two weeks till on two grains, hold on that for six weeks then get blood tests.

[laelow in reply to fibrolinda]

Hi Linda, thanks for your help! I guess I stopped because I thought the dose was equivalent to the Levo dose I was on, and was a bit concerned about the risk over-dosing. But you're quite right, this is the next logical step. I'll look into getting bloods done soon too and then post again when I have more info. Thank you!

[Hidden]

As others have pointed out, 1 grain is a really low dose; really more of a starting dose. If you remain on it for more than 3-4 weeks, you are bound to feel under medicated and remain hypothyroid.

Someone mentioned in another post that her doctor had said that most hypothyroid patients feel best on 3-5 grains daily. While that may not be true for everyone, it certainly was for me, and I wonder if you are not simply under medicated.

You could also be suffering from adrenal fatigue (common in people who have been hypothyroid for a long time), in which case a high quality adrenal cortex extract could be helpful.

[laelow in reply to Hidden]

Thank you Anna, that really interesting and helpful. I will definitely try increasing my dose.

[fibrolinda]

Just to add 'your' correct dose may even be 1 1/4 or much higher, only time will tell. Mine seems to be 2 1/4 but took a long time to find it has had to get all the vitamins and minerals greygoose mentioned optimal, not just in range but optimal plus I needed to support my adrenal in order to raise above 1 1/2... I use Holy Basil but there's many other adaptogens. As someone once told me, wish I remembered who, its a marathon not a sprint. Slowly does it and its actually quicker in the long run to go slowly lol