Switched to NDT a month ago - no change, am I too impatient?

[davidlee72]

Hi,

So the short version of the story is:

I switched from Levothyroxine to Natural Desiccated Thyroid (Thiroyd brand) a month ago. Since then no improvement in symptoms.

I'm up to 2.25 grains per day (1.25 in morning, 1 in afternoon). I've increased the dosage every 10-14 days, I started on 1 grain.

I've been measuring my temperature and heart rate every day, no change or a slight fall in body temperature. Typically my temp first thing in the morning is around 35.7 and then at its peak in the afternoon 36.2. Heart rate 58-60.

So the question is would people expect at least some changes to happen this soon? I'd read that lots of people feel a difference from day 1 when introducing T3 medication. As is typical of my luck, not me.

Also I read that broadly speaking 100mg of Levo can be thought of as equivalent to 1 grain of NDT. Yet I'm taking 2.25 grains and haven't noticed anything. I know that lots of people feel better when taking 3 or 4 grains and I'm not there yet, but did people not feel even slightly different as they increased their medication?

My blood test before switching to NDT was:

TSH 0.65 (range 0.27 - 4.2)

FT4 15.3 (12.0 - 22.0)

FT3 4.3 (3.1 - 6.8)

Anti-TG antibodies 12.1 (0 - 115)

Anti-TPO antibodies <9.0 (0 - 34)

25 OH Vit D 74 (50 - 200)

Active B12 81 (25.1 - 165)

Ferritin 86 (30 - 400)

Folate serum 12.9 ( > 2.9)

I'm taking supplements to boost these values.

My thyroid values in 2012 before starting Levo were:

TSH 4.42 (range 0.3 - 4.2)

FT4 13.5 (12.0 - 22.0)

FT3 not tested

My plan is to increase to 2.5 grains next week, and then go for a new blood test 2 weeks after that.

Any thoughts? Do most people feel a gradually improvement in symptoms as they increase NDT, or is it more likely to feel a sudden jolt to the system once you get to your ideal dosage?

Thanks

David

[Greybeard]

Hi David, as you will have read before, we are all different. For me I could feel the difference within an hour of taking my first dose of ndt. I was on 100mcg of t4 so started off on 1 grain of ndt. I followed the protocol you are using. I tested after 6 weeks on 3 grains and was slightly over medicated. Testing after 2 weeks is not long enough because your body still needs to convert the t4 element of the ndt into t3 and that takes time. Keep monitoring your pulse and body temp. You may not find your temp increases much but the pulse is an important one to watch, if you start to go over 100 bmp you may have gone too far and may be best to back off 1/4 grain. Some people are having trouble with one of the American ndt's which one are you using?

[davidlee72 in reply to Greybeard]

Hi,

Thanks for replying.

I'm using Thiroyd, NDT from Thailand.

When I said I'll be testing in 2 weeks time, that'll be 2 weeks after I'll have upped my dose to 2.5 grains, not 2 weeks since I started on NDT. The first blood test will be about 7 weeks since I first switched from Levo to NDT.

My heart rate hasn't budged a bit, no higher than 60 bpm so I've a long way to go before I worry about being near to 100 bpm.

It's interesting that you felt a difference within an hour of taking an NDT. Although that does increase my doubt about my diagnosis, maybe it's nothing to do with hypothyroidism, maybe it's something else. Who knows, doctors don't know, in the short term I suppose I just have keep gradually increasing the NDT and monitor the changes....

Thanks

David

[Greybeard in reply to davidlee72]

Hi David, it is normal to get your bloods done after you have been on your highest dose for 6 to 8 weeks, getting it done too early can mean your levels are still increasing. Silverfox makes a good point about about vitamins and supplimenting. You may find that without noticing anything dramatic your symptoms have eased and you arent as unwell as you were before you started. Good luck.

[silverfox7]

Not saying this is the issue but when I was thinking of going back to NDT I spent a lot of time reading, looking at posts on here and asking questions. The first thing I did was to improve my vits etc as apparently it doesn't work for everyone if that isn't in place. I also decided I was going to look at Thyroid S but as months went by I saw posts suggesting that Thyroid S worked for some but not others and that Thiroyd was the reverse in the very few were able to take both. So if Thyroid S didn't work then trying Thiroyd wasrecommended and vice versa. So I started out on Thyroid S and no probs-well a slight one but more on that later! But Thyroid S has loads of fillers so before I ordered the next batch I tried Thiroyd and after two days had to stop! The side effects were unbearable so been on Thyroid S for about 3 years now.

My initial problem was doing the swap over and I followed STTM book for that. Basically I was to increase by half a grain every 2 weeks till I got to 2 grains then increase byvquarters so I got up to 3 grains before my Endo appointment who did my bloods, I was over medicated! I hadn't felt bad but I wasn't improving after 2. So I had gone passed my sweet spot as he told me to drop to 1.75 and been on that ever since. Has I been on quarterszat that point I'm sure I would have realised. It's likely we all have different journeys so here's mine!

If you are unsure then it's best to get bloods done, it's the only way to be sure what is happening.

[davidlee72 in reply to silverfox7]

Hi,

Thanks for your message.

What were the side effects you experienced on Thiroyd?

One good thing is that I haven't had any negative side effects, so far. My neck glands ached when I upped from 1.5 grains to 2 grains but that's about it.

Yes I did quite a lot of research before opting to try NDT, I must've spent at least 50 hours looking at posts here, reading the STTM website, etc. but it still only gives me a basic understanding! The thing that stuck in my mind was how quickly and effectively the T3 element of NDT seemed to improve lots of people's symptoms. I was hoping it'd be the same for me but it seems it'll take a bit longer. Hopefully.

Thanks

David

[silverfox7 in reply to davidlee72]

Terrible headaches. Had that have been my first try I might well have looked at adjusting the dose but as I already had one o felt great on then I ditched the othercas also nothing many couldn't take both so it was an either/or or may be I didn't try harder-sounds like my school report! It may be they are very different strengths and others didn't experiment either. But the headache was very debilitating and continuous.

[DotLeeds]

H, what dose of vitamin D are you taking? You might feel some improvement if you can get the level up to 100. Vicious circle if your under medicated you can’t absorb and use VitD supplements, if Vit D low it hinders thyroid function.

[davidlee72 in reply to DotLeeds]

Hi,

I'm taking 5,000 IU per day of liquid Vit D3 at the moment, and have been for about the last about 6 weeks.

I'll maintain that dose until I get towards the upper end of the normal range.

I think GPs normally refuse to check Vit D levels more regularly than 6 months, do you think that's because it takes a long time to increase Vit D levels?

Thanks

David

[DotLeeds in reply to davidlee72]

My GPs will check Vit D again after 3months when a patient is taking a high dose.

[shaws]

Yes, you're impatient and I will say I'm not medically qualified. You may find the following helpful but you'll have to copy and paste links onto a new page. :-

tinyurl.com/ycxpz565

tinyurl.com/ya5blrr2

tinyurl.com/y7ejh9sh

The above chapters are from a book by Dr Lowe who was also an adviser to TUK before his accidental death. He resigned his licence so that he could treat people without being forced to follow the levo alone brigade.He only prescribed NDT or T3 alone for thyroid hormone resistant. He stated that blood tests and levothyroxine were introduced by paying doctors/endocrinoloists to prescribe levo alone instead of the NDT - which was safely used since 1892 (in various forms).. Before that we died.

en.wikipedia.org/wiki/Desic...

[Hidden]

It took me quite a while to notice the difference mostly the aches and pains started to go.

Probably 6 weeks to notice a difference. You might be one of those people who need more you have to be patient it's a long haul sometimes. When I was on 3 grains per day I was over medicated. Everyone is different.