So I have converted back to Levo for several re... - Thyroid UK

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So I have converted back to Levo for several reasons

jamesal0
jamesal0

Hi all

Its been 3 years on NDT and I love the stuff, however recently I have begun to suffer from a Rheumatoid Arthritis (RA) possibly due to leaky gut/autoimmune issues. For the moment I'm attempting to manage it with diet, rather that immunosuppressant drugs. However the diet (which seems to work in terms of pain reduction (Paddison Program)) is zero animal protein/fat, high starch/veggy diet. On this veggie protein only diet, I was finding NDT’s cannibalistic attributes (you loose weight) too agressive I lost 5kg in 2 weeks. Before the vegan-ish diet I was taking between 2.5 to 3 Grains NDT per day to get a stable body temp, eating like a pig and stable at 85kg. This was down from 107kg when I first went from Levo to NDT and Gluten free three years earlier.

So I have converted back to Levo for several reasons, NDT (pig thyroid) in contrary to Paddison Program’s zero animal protein philosophy . Weight lose on vegan-ish diet (down to 80kg). Unstable body temp (varies 1 to 1.5 Deg C) unless i’m on 3 grains NDT. GP and Specialist Support, there is only one GP in my city that will prescribe NDT. And when you say to an Endo or Specialist you are on NDT they immediately blame it for any unrelated issues. And finally the cost. $120 per (100 x 60mg NDT caps) and Levo is almost free in Australia.

So my question is, Ive converted back from NDT (3 Grains (3 x 60mg/day) to Levo but I now need about 250mcg Levo to get a stable temp. I’ve only been back a week and haven't had a blood tests yet but I found temp is a pretty good guide for me. My last Levo dose before going to NDT 3 years ago was 125mcg. The formula for Levo is 1.7 x 80kg = 136mcg/day. Although NDT/Levo conversion chart says 3 grains (180 mg) NDT = 300 mcg (0.3 mg) Levo. My thyroiditis has been smashing away at my thyroid for the last 3 years, maybe my natural thyroid has fallen ? or maybe I’m just not getting enough protein and my bodies not regulating temp well, but on 250mcg Levo I feel fine. Any thoughts

regards

James

26 Replies
oldestnewest

Eating is important to maintain metabolism (see ray peat).

Why are you ignoring the simple solutions of using T4 and then adding in T3 to help bring a better balance.

We are all different and the T3 element in NTH can be far higher than some people need.

Some people only need a really small amount of T3 to fine tune their thyroid routine. (read Dr blanchers book on this area).

So settle on a T4 level you are happy on and then slowly add in some T3 to help fine tune things. The starting dose for adding T3 is around 1/8th of a tablet. This will be about 3mcg if using a 25mcg tablet. Most people start with a much to high a dose of T3.

Catseyes235
Catseyes235 in reply to marsaday

That is actually very helpful to me but doc's won't prescribe T3 in UK and would love to try fine tuning as you say and hopefully to lose some weight as some have mentioned. Not that I feel bad but my TSH is 0.03 and one of my docs wants to reduce thyroxine.

Maybe you just need to wait a while: you've only had the meds changed for a week and the difference is radical. I imagine your thyroid is quite rattled! Give it more time - keep an eye out for any serious symptoms of course - but I think temp fluctuations etc are to be expected at this stage. It's possible that adding a tiny amount of T3 will be necessary, but later. In my experience, a too-high dose of T4 is disastrous, while a smaller dose along with a tiny bit of T3 works well.

jamesal0
jamesal0 in reply to DandyThyro

thanks Dandy

Hi

3 grains is approx 222 mcg of thyroxine not 300.

I use temps to check my dosage( Dr Rind/ Dr Sarah Myhill have great info on it)

I agree a week is not long enough but that said if your adrenals are working fine there should not be any variation in average temperatures of say 4 a day by more than 0.4.

Without your bloods it’s impossible to know if you convert well to t3. You may be fine on your existing dosage and convert well. After switching to ndt myself ( I use a different supplier) I’d never switch back unless I completely ran out of meds.

I totally understand you wanting to change diets as I too have 2 separate immune system problems.

I follow a ketogenic diet/ way of eating and avoid gluten and high load carbs. I find my conditions are better but i could never eat high carbs and no fats. Dr Mercola and scientist Mike Adams recently did research on immune system issues and found huge improvements following a ketogenic diet. My own specialist is also v strict re food. No fats ( advocado coconut oil nuts etc) can lead to depression i need a balanced diet to be well.

250mcg is a decent dose but not horrific but after being on ndt I am surprised your body does not miss t3.

However I wish you all the best and hope you continue to be well.

jamesal0
jamesal0 in reply to Howard39

Hi Howard

Yes I'm missing the NDT T3, I actually feel a little depressed without it. When I cut over last week I tried mixing WP Thyroid (38mcg Levo and 9mcg Liothyroxine) and Levo but my feet felt stone cold every 2 hours and in the end I bit the bullet and just went 100% Levo. I feel pretty good so long as I get 200-250mcg Levo at the moment. Tonight I felt a little hyper, so tomorrow I'll take 200mcg before breakfast and then see if I can last the day without taking the remaining 50. Maybe the Levo is still building up in my system.

I went to NDT 3 years ago after ending up in crisis (T4 Pooling at any dose) on Levo and figured this would happen again but it hasn't so far..

I figure my adrenals arnt real good as my temp will flap up and down from 35.1 to 37.1 depending on NDT/WP-Thyroid consumed, were as Levo seems to give me more consistent temps.

I read plenty about adrenals, but dont understand how to "Fix" them. Plenty of internet doctors want to sell me adrenal support products but as my GP couldn't make head nor tail of my saliva adrenal test (goes up when I go work and comes down when I go home), hence I don't feel comfortable taking anything for it - your thoughts

I had a little read about the ketogenic diet - interesting, I was experimenting with fasting to see if it helped my blood pressure, blood glucose. I could certainly drop my glucose with fasting.

James

Howard39
Howard39 in reply to jamesal0

Hi

It’s not easy balancing everything. The best article I’ve ever read is on sarah Myhill. Co. Uk and search under orchestra.

I’d have to see those adrenal saliva tests to comment. You definitely need dhea tested tho to complete all the picture. I did not find it too hard to improve mine. ( if you use that web page address and search under adrenal gear box- you’ll read all you need to know)

I’ve swapped food improved vitamins fixed my absorbtion issues then as my t3 and dhea were nil addressed them. Then swapped to ndt. It’s not cheap to do it all but I am definitely better.

If I can help anymore please do ask or message me.

Yes you can take thyroxine at night( I couldn’t) - tsh is highest at 3 am.

Best wishes

If you pool T4 then it is the absorption of the T3 which is the issue and this is so very common in people who have issues with getting better on any thyroid med.

I would certainly shift to taking the T4 at bedtime as i am sure this will bring benefits to adrenal support.

We naturally have a higher TSH leading into the late nighttime. This is because we make our thyroid hormones when we go to sleep in the first section of the night. In the section part of the night we then make our cortisol. The balance between thyroid and cortisol is key to good health.

Lower thyroid production usually equals lower cortisol production and so very often you will see low cortisol on the first reading of someones saliva cortisol profile. The adrenals will then make a big effort to put out more cortisol for the day ahead and so you can get these spikes in cortisol output at the wrong times. You will also get depletion of DHEA because this is being ignored as all efforts are being focused on trying to get cortisol up.

So bedtime dosing of the T4 gives the body what it would do naturally. This has a knock on effect of ordering the correct amount of cortisol in the second half of the night. It is a bit like a factory where thyroid is made first and then the body waits to see what cortisol amount to match up with the thyroid.

Doing this simple change can have a long term effect of correcting cortisol to be in a better place. It doesn't solve the whole puzzle, but it certainly helps.

Then i would recommend ray peats ProgestE oil which is plant based progesterone i think. IT is perfect for a male as we only need a little to top up our reserves and one drop = 3mg. One or two drops per day could literally make life changing benefits. I have taken it now for 3 years and it has improved my overall well being to be pretty much fully better.

If you google the steroid hormone cascade you will see how the steroid hormones work. Progesterone is high in the chain and so will break down into what the body will require. I am pretty sure it is helping out with the second area of adrenal function in that it is aiding DHEA production. It is doing this my supplying a new source of cortisol (low level) and so the body is now not grasping for more cortisol production and so is able to focus on maintaining DHEA production. The balance between our DHEA and cortisol is very important in being healthy. This is the area which goes off when we have a lot of stress,

Remember a low thyroid state is very stressful and so this is impacting the ratio between cortisol and DHEA. IF we can bring this back into a good place we feel much better.

jamesal0
jamesal0 in reply to marsaday

Hi marsaday. Many thankyous, I will move/migrate my T4 into the late afternoon. 2years ago when I would get up for a pee at 1am, would take my last 30mg NDT to assist adrenal production, but as my life got better on NDT, I lapsed the practice. For the last 2 years on NDT I was split dosing 2-3 grains 7am, 11am and 4pm.

I have a script for Testosterone cream and when I was struggling with T4 pooling and converting moving to NDT (3 years ago), it made a huge difference.

Until my Rheumatoid Arthritis (RA) flared up 3 weeks ago I was taking low dose Testosterone (25mg per day), but feel my joint pain is worse on the days I take it. But very interested in your thoughts on ProgestE oil.

I'm trying to work out how to attach my Saliva Adrenal test

marsaday
marsaday in reply to jamesal0

I would see how a certain amount of t4 works later in the day. You don’t have to take it all. Just experiment.

I do think you need to try a little at bedtime though.

You have a lot going on. RA could be a lower cortisol issue. If you pee a lot this is indicative of low cortisol.

Low testosterone can be a by product of a poorly working hormone background. If you are getting pains this indicates the testosterone and estrogen are out of balance. You may be experiencing a low a level of estrogen.

The progesterone oil is certainly worth a try. It is cheap and lasts for yrs. a bottle is £35 in the uk and it lasts me 3 yrs.

Another guy on a forum finally tried it out a year after I told him to give it a go. He also has hashis but now he enjoys a good quality of life again. Pretty much down to the progesterone proving a much better supportive adrenal background

jamesal0
jamesal0 in reply to marsaday

Hi Marsaday, I'm just about to have 50mcg Levo before going to bed, I'm going to move 50mcg from morning to night each day until I shift it all across to evening.

Re ray peats ProgestE oil - I'm just trying to find a web site that will mail me a bottle in Australia

Many thanks

James

Sus64
Sus64 in reply to marsaday

If I switch Levo dosage to 10pm, what time do you recommend progesterone?

How much animal protein do you reckon there is in 3 grains of NDT? Do you really think it makes that much difference?

jamesal0
jamesal0 in reply to greygoose

Hi Greygoose, yes I agree there wouldn't be much protein in 3 grains of NDT, my concern at the moment is NDT always stripped the weight off me if I took it in sufficient quantity (2-3grains) to get a consistent temp. And at the moment I'm struggling get enough calories/protein on this vegan/gluten free diet. So I'm loosing weight but my finger and toe joints feel better - cant win at the moment. :-(

Hi Greygoose - how do I attach a scan of my Adrenal test to this post

greygoose
greygoose in reply to jamesal0

Click on the down-ward facing arrow under your post, and select edit from the drop-down menu. Then click on 'add a photo'. Then repost. :)

jamesal0
jamesal0 in reply to greygoose

I have edit, only options are Edit, Delete, Report..

greygoose
greygoose in reply to jamesal0

Well, click on edit, then. It will take you back to the page before you published your post so that you can add the photo.

Hi James

I’m interested in your RA symptoms. Did your antibodies go up whilst you were taking the NDT?

I'm very early days - just have classic RA pain hands and feet, but haven't seen a Rheumatologist yet, as I hate the idea of going on all those immune suppressant drugs. If I'm still sore in 4 weeks I'll go. For the moment I have become a strict Vegan, cutting out all animal protein, seems to help heaps, But the challenge is getting 30gm of all the essential amino acids from Veges each day. I lost 5 kg in 3 weeks.

I suppose my question was - do you think you had a reaction to the NDT which flared up the RA?

I’m on NDT and am starting to get sore finger joints

Hi Missimal, I can not say for sure but the thought did cross my mind. I was on it for 3 years and over the time I got slightly stiffer fingers, clicky tendons and my feet feel like I have no padding in the soles any longer. I also lost 22kg that I needed to loose. I am now 53 and maybe it is RA and nothing to do with NDT.

You loose weight because NDT turns up the wick on your metabolism, particularly if you optimize dose . I basically used my temp as a guide and ended up on around 3 grains per day, although I never managed to suppressed my TSH. In the last 3 months with my RA symptoms coming on more noticeably I reduced to 2.5 grains per day but would often feel cold and didn't notice any improvement in RA symptoms.

Yeah my symptoms are new and might be unrelated to the NDT.

I’d be interested to hear how you get on with Levothyroxine

Good luck

@ Hashi-Monster Been on a 50:50 mix of Levo (50mcg) and NDT (30-60mg) for the last few months. Feel pretty good most of the time, although my old Levo head ache hovers around in the background most days. The positives - I went from 78kg back up to 92kg and seem to have stablised. Zero joint pain :-) .My Feet and hands feel pretty normal most of the time (no tingles), and my body temp is reasonably stable at about 36.0-4C.

Hi James

Remember that levo has a long half life of c. 2 weeks so you won’t feel the full effect of your dose until you’ve been on it that long and it has built up in your system! Equally it takes a bit longer to ‘come down’ from feeling over medicated on levo. Good luck!

Hi All just an update. My joint pains were just "too much NDT (180mg)" Yes my Bloods looked good". I had a total break from all thyroid supplements and then started back 25-50mcg levo per day. It took me a long time (6 months) to acclimatize . Pretty sure I was resistant to T4 after smashing 180mg of NDT for 3 years. I put 10kg while on Levo for 6 months. But back on NDT 60-75mg now and weight is slowly coming off.

Regards

James

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