Just not tolerating NDT: Ok i just don't think... - Thyroid UK

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Just not tolerating NDT

Cleo2467 profile image
33 Replies

Ok i just don't think NDT is right for me i've just felt awful apart from the odd day here and there.

For the time being i'm thinking of switching back to levo and maybe trying again in the new year.

Any advice on how i might go about it?

Do i just stop ndt and take my original dose of levo or reduce ndt and take 1/2 my original levo gradually increasing?

Anyone else had to do this?

Your advice would be vety much appreciated.

Thanks

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Cleo2467 profile image
Cleo2467
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33 Replies
radd profile image
radd

Cleo,

If you haven't medicated T3 before, the amount of NDT required in order to give you well being may contain more T3 than your body is willing to tolerate at this moment in time. Especially as you have high cortisol levels.

Many members have found NDT is difficult to introduce with high cortisol and//or high thyroid antibodies and//or low iron levels.

I added T3 to my Levo for a year before successfully medicating NDT, which allowed time to address all other health issues.

You can switch straight back onto your original dose of Levo, whilst you consider your options, or half NDT which would lower the amount of T3 and make up the short fall with Levo. If you advise of all doses, members will comment on the amounts that equal your original dose.

Cleo2467 profile image
Cleo2467 in reply to radd

I think you might be right the amount of t3 is just too much for my body. I was on 125 of levo before so if i dropped my NDT to 1 grain how much levo would i have to add?

jamesal0 profile image
jamesal0

Hi Cleo

I can help you sort out NDT if you want . If you dont, thats Ok - just ignore my post.

A couple of questions.

1 Why did you change onto NDT - what was happening with Levo originally - I will need a description.

2. What is feeling awful mean. Example I have a 24-7 head ache..

I personally wont mix Levo and NDT but I think I'm alergic to Levo so maybe others can get away with it, where I cant.

J

Cleo2467 profile image
Cleo2467 in reply to jamesal0

Hi yes any help gratefully received!

Levo was giving me tiredness from 3pm onwards so totally shattered by 8/9 pm and Weight gain (a dress size) i know this isn't much to some but was really getting me down.

Also i've had shoulder problems with ongoing physio and i didn't seem to be making any progress (3 years)

I didn't feel like 'me' anymore.

Feeling awful is my head, fuzzy, dizzy and awful headache and pressure around my nose and ears. So frustrating because i've felt more 'normal' and definately had more energy. I've had a few days with no headache and on those days i've felt great but very few.

Looking forward to your reply thank you.

Hypopotamus profile image
Hypopotamus

You don't mention which NDT you were on. They do not work the same way for all people.

Cleo2467 profile image
Cleo2467 in reply to Hypopotamus

Nature-Throid

BadHare profile image
BadHare

Hi Cleo,

I find Nature-Throid ok, but WP Thyroid made by the same company, RLS, to be much better. It could be the fillers that are making you feel bad. Nature-Throid gave me no bad reaction, I just seemed to fell better on WP with no reactive fillers. For me, it feels a bit stronger. Thyro-Gold made me more ill than nothing, along with prickling lips & itching all over. Maybe trying WP or T3 might provide the improvement you want.

Mel

Cleo2467 profile image
Cleo2467 in reply to BadHare

I might try WP.

Clutter profile image
Clutter

Cleo2467,

How much Levothyroxine were you prescribed and how much NDT are you taking?

If you want to go back to Levothyroxine switch back to the dose you were taking the day after you stop taking NDT.

shaws profile image
shawsAdministrator

Sometimes we may have to try more than one make as not all NDTs might suit us for one reason or another..

If you want to switch back it is relatively easy. Stop one day and take equivalent dose of the chosen one the next.

jamesal0 profile image
jamesal0

Hi Cleo

I assume you want to try NDT for a little longer.

I'm not going to explain stuff too much - you can research on Stop Thyroid Madness web site. I will say though - Hypo's don't absorb stuff and end up in a absorption / deficiency spiral.

1. 110%) Gluten free, 95% Lactose free, no added sugar

2. Take your temp 3 times per-day with a digital thermometer under your tongue. Write it in a diary. We will look at this in a month.

3. Take daily Mega Magnesium

4. Take Weekly Iron/VitC

5. Take Multi B every few days

6. Buy inject-able B12 over the counter at a chemist and find a doc that will inject and monitor your B12 levels - need to be about 900's - do not accept 300's

7. Decrease your NDT by 30mg. (cut pills to do this) Do you feel better - NDT is instant - within an hour or two you will know. Go for a few days and then go back to you normal dose. Do your symptoms come back ?

8 Wait a few more days and do the opposite - add 30mg, how do you feel? Better - worse. Go for a few days and then go back to you normal dose. Do your symptoms come back ?

8a. Split you NDT across the day, most of it at 10pm keep some for 3pm when you feel tired.

8b. I take slow release NDT - it takes 24hours to dissolve in your gut. I'm not sure about Nature-Throid.

9. Find Lindt cooking chocolate supply - your treat

10. 1 x hour daily exercise - it can be walking, swimming, jog-walk, anything you once liked to do, doesn't matter. So long as you do 1 hour. You need to re-train you body as to whats normal. It's normal to hurt and feel buggered after exercise, then the rest of the time you feel normal maybe even good. The main thing is - every day rain hail or shine you do your exercise.

Additional - you have to cook your own food from scratch . Shop bought gluten free is not what it claims. You can treat your self once a week but 6.5 days a week you have to be really strict. I have my own shelf in the pantry and fridge, my own margarine, my own frying pans, chopping boards, toaster...... These things never get a crumb of gluten on them.

The basic diet for 3 months is, eggs, grass feed meat, lots and lots of veggies, baby silver-beet, potatoes everything, soy/almond milk, raw nuts. Careful the sneaky buggers add gluten to some salted nuts. Look at FOD-MAP diet from Monash Uni.

Finally - This regime is not just for NDT. Levo is the same - you like me, had/have an adrenal crisis and or maybe allergic to Levo.

J

in reply to jamesal0

I had always assumed soy products were to be avoided

jamesal0 profile image
jamesal0 in reply to

I flip back and forward on soy. It impairs the Thyroid gland's ability to make T4-T3 there is no doubt - but as my thyroid is dead and I supplement NDT I figure it no longer matters.

I know I feel worst on cows milk and cant stand the taste of almond milk. Need something white and creamy in the coffee

j

BadHare profile image
BadHare in reply to jamesal0

My vegan diet with tofu most days, soya milk every day, & raw cruciferous veg made me more poorly. Stopping eating these, & taking fermented soya only, & fermented dairy helped. I do miss tofu & chestnut mushrooms, but not being a fat slug :-)

BadHare profile image
BadHare in reply to

Fermented soy is ok, & I avoid margarine, but most else seems sensible. I need to work on no. 10 :-o

leoopard profile image
leoopard in reply to jamesal0

Which NDTs are slow release?

Cleo2467 profile image
Cleo2467 in reply to jamesal0

Gosh a lot of info to absorb. I will take on board some of your suggestions quite a lot i already do re diet and exercise.

BadHare profile image
BadHare

Cast iron helps improve iron intake, mine are enamelled, so won't help. Do you know if non stick ceramic pans are good or bad?

BadHare profile image
BadHare

Thanks!

I've always avoided aluminium, but need to rethink my occasional use of non-sticks.

lucylocks profile image
lucylocks

Hi

I have been taking W.P. for nine months and have had a difficult time raising it. I have only manage to get to 1.5 grains and cannot raise above this. I feel only marginally better than I did on levo. I had a few good weeks in the summer but now feel I have gone backwards.

I seemed to have got rid of some symptoms but new ones have arose. Since changing to NDT I have suffered from more aches and pains, especially backache, and it is strange you mention shoulder pain as I started with this six weeks ago. It has been really severe.

How much levo. were you taking and how much NDT are you on now.

I feel the T4/T3 ratio is not right for me and in hindsight wish I had added T3 to the levo. before trying NDT.

Cleo2467 profile image
Cleo2467 in reply to lucylocks

I keep seeing T3 can that be bought like NDT from the same place ?

I was on 150 levo but dropped to 125 as i was overmedicated now i am on 2 grains.

lucylocks profile image
lucylocks in reply to Cleo2467

Hi

I will send a P.M. with a couple of sites were a lot of members get their T3 from.

Wolfiesmom08 profile image
Wolfiesmom08 in reply to lucylocks

I had the same trouble with NDT. I did not feel well above 1.5 so I slowly added in some t4 and now I'm at 25mg of tirosint plus 1.5 grains and I feel better. I'm just plagued by headaches before my period and during ovulation. I just need to figure that out and get some exercise. Consider reading tiredthyroid.com. It's been helpful.

lucylocks profile image
lucylocks in reply to Wolfiesmom08

Hi

I am thinking of adding in T4. Do you mind me asking, did you add the 25mcg. T4 to 1.5mcg. NDT straight away or did you start on a lower dose?

I have seen the tired thyroid forum, it is interesting.

Have you thought of trying Progesterone cream for your pre menstral and ovulation headaches. It helped my daughter with her PMT.

Wolfiesmom08 profile image
Wolfiesmom08 in reply to lucylocks

So I tried 13.5mg of T4 plus the NDT for 6 weeks then took a blood test then I upped to 25 of the T4 and I'm experimenting with lowering my NDT a little but if I feel hyper but most days I take the 25 plus 1.5 and I feel stronger. I will send you a message about the progesterone.

lucylocks profile image
lucylocks in reply to Wolfiesmom08

Many thanks, I think I will try that.

Have just replied to your P.M.

jamesal0 profile image
jamesal0 in reply to Wolfiesmom08

I found a Testosterone supplement helped me take more NDT without getting side effects. Interesting progesterone helped you. It wouldn't surprise me if they find Hashi and Coeliac autoimmune has a interaction with low male/female hormones.

rap16992 profile image
rap16992 in reply to Wolfiesmom08

Hello, how are you coming along with your T4:T3 combo? I recently found TireThyroid and am very interested in trying this method. I was on T4 only and felt good. Switched to NDT and not so good. I am taking 2.25 grain/split 2x per day and now thinking of dropping down 1 grain NDT and adding 44 mcg T4. Appreciate any insight/advice.

Wolfiesmom08 profile image
Wolfiesmom08 in reply to rap16992

Sorry for the late reply. I immediately did better after adding more T4 to my NDT. I eventually quit NDT and went to Levoxyl plus compounded T3. It's taking a while for me to find the right dose but now I'm at 100 mg of the Boxell and 2.5 mg of T3. I just got a lot of headaches on too much T3. I also didn't have sustained energy. If I was going to go back on NDT I would probably use only a half a grain and the rest T4.

This just shows how we're all different and really do you need different chemistry it's really frustrating that I can be such a guessing game

rap16992 profile image
rap16992 in reply to Wolfiesmom08

Thanks for your reply. I have plenty of NDT and my original box of Levo (88).....based on all that I have read thus far, I have been planning on moving to one of the following very, very soon:

Levo (44) + NDT 1 Gr = T4 (82) + T3 (9) = T4/T3 Ratio 9.11:1

Levo (88) + NDT 1 Gr = T4 (126) + T3 (9) = T4/T3 Ratio 14:1

Levo (88) + NDT 1/2 Gr = T4 (107) + T3 (4.5) = T4/T3 Ratio 23.78:1

Based on your comment and ratio (40:1), I have added another to the mix:

Levo (88) + NDT 1/4 Gr = T4 (97.5) + T4 (2.25) = T4/T3 Ratio 43.33:1

From all that I read and my understanding of such, ratio is important and straight NDT is at 4.22:1 which is too much for me and others apparently....so working on getting the ratio better balanced. I don't know what is right for me, but I know that the NDT, although my latest lab numbers are good, I feel like I am going backwards. I felt better on the Levo alone at 88 daily previously, although I had thought back then that I needed to increase the dose upwards but decided to go to NDT for the T3 (which I still think is necessary, just a matter of getting correct amount/ratio). This will be my next step I think.....synthetic T4/T3 combo.

For now, thinking of going to the 43:1 ratio first since it still gets me some T3 as well as raise my T4 up some as I originally thought. This is a start and will see where I go in 6-8 weeks when I re-test and see new numbers. Work in progress!!!

Eddie83 profile image
Eddie83

The T3:T4 ratio of 1:4 in NDT is too high for some patients. The only way to find out if that is the problem, is to test FT3 and FT4. If you have to "feel" your way thru it, you could reduce your NDT dose and take supplemental T4 (levo).

DiNiro profile image
DiNiro

Once scratched, teflon pans begin an inevitable march toward complete exfoliation. That is, all that teflon is going to end up in your food, and then inside your body.

At 680° F, Teflon releases at least six toxic gases, including two carcinogens, according to a study by the Environmental Working Group, a nonprofit watchdog organization.

greenlivingideas.com/2012/0...

Yes, actually just straight switched yesterday after getting increasing palpatations, night restlessness, headaches, dizziness and bloating on taking a small doze of Thyroid S. Even tried going back to Levo with tiny amount of Tiromel T3, still some of the symptoms. Now just on prescribed dose of Levo but getting back original symptoms which prompted me to try NDT. Think it's the T3 that gives me the headaches and restlessness. Couldn't achieve the recommended dose for me, very disappointing. Can't be spending tons of money trying all a sundry in the NDT range.

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