how long to feel better - my NDT was converting... - Thyroid UK

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how long to feel better - my NDT was converting to RT3 had to lower my NDT suddenly and add in T3

cleodog profile image
12 Replies

Finally was up to 2 grains of NDT and had great energy but couldn't get rid of a headache which turned into neck/shoulder/back ache that lasted 16 days, (h and I've gained 10 pounds and my digestive track is a mess and i have gerd) finally I dropped my NDT to 1.5grains and symptoms improved, my RN did blood work and showed the T4 in my NDT was turning into RT3 which seems to always happen to me, must be because I can't get my ferritin levels up. So now, within 3 days I've gone from 1.5grains to just 30mg (half a grain of NDT) and she has me adding in 10mcg of T3 both of which I divide and take 2x daily (15 NDT 2x daily, 5mcg of T3 2x daily) but my head is still killing me, I'm now fatigued and everything hurts. Been struggling with these pains now for a full month. Any isight into how long before these Rt3 symptoms subside would be appreciated.

xxxx

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cleodog
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12 Replies
galathea profile image
galathea

Whilst you are taking t4 it will continue to convert into rt3, The remedy seems to be to take t3 only for several months.

Have you had a look at the website belonging to the rt3adrenals forum?

rt3-adrenals.org

Xx

galathea profile image
galathea in reply to galathea

Would have thought you would need a bit more than 10 mcg of t3 to survive on..... More like 40 to replace the 18mcgof t3 and 72 of t4 in the 2 grains of ndt.

X

humanbean profile image
humanbean

If you have issues with high RT3 then you might benefit from going on T3-only while you work on your nutrient levels, and check your adrenals are functioning okay. Once you get them to a good level you could try going back to NDT if you wanted.

humanbean profile image
humanbean in reply to humanbean

You might find something useful on this website - it's old-fashioned and not well designed, but is worth persevering with :

thyroidrt3.com/

galathea profile image
galathea in reply to humanbean

Ah.... The link you gave is to Nick, who gave a really interesting talk at one of the thyroid conferences..... As far as i understand, he is now teamed up with Val of the adrenals group. rt3-adrenals.org

Xx

humanbean profile image
humanbean in reply to galathea

That might explain why the link I gave is not being updated any more. I was aware of the rt3 and adrenals site that you linked to but wasn't aware the rt3 stuff was by the same guy as the site I linked to.

Oh well, I'll know for the future. :)

fibrolinda profile image
fibrolinda

I'm afraid you're still creating rt3 while taking t4 which is of course in NDT... the advise I've been given, and lots and lots of research suggest, is t3 only for 12 weeks. (6weeks3days in myself)

Linda x

shaws profile image
shawsAdministrator

Apparently T4 turns into RT3 and this is an explanation and excerpt:

I’ve found no evidence that this condition becomes chronic...........

Old studies show that on average, most people convert more than 50% of their T4 to reverse T3; correspondingly, they convert less than 50% of T4 to the metabolically active hormone T3. And the levels of reverse T3 fluctuate up and down through the day. Because of this, I’m never confident of coming to a conclusion that someone has a problem with high reverse T3, not unless the person has had multiple measures of the reverse T3 over a 24-hour period. Like the TSH, free T4, free T3, reverse T3 levels vary dramatically every 30 minutes or so. Depending on when a person’s blood is drawn or saliva taken. Sometimes the levels will vary enough so that a clinician will give the patient a different diagnosis from the one that he or she would have given 30-minutes before or after the blood or saliva sample was taken.

So blood levels vary rapidly. Because of this, I don’t believe the reverse T3 or the other lab tests in general are very useful. However, I do believe the reverse T3 is useful under one circumstance: when we have enough measures to get averages over time, and when the levels are regularly way out of range. So, in my view, the reverse T3 can be useful, but I think its usefulness is limited, which is true of the TSH and other thyroid hormone levels. >>>

toopoopedtoparticipate.com/...

justme-pc profile image
justme-pc

Please can you tell where you get help at all I'm ten yrs suffering with just pain relief pain clinic then lef

humanbean profile image
humanbean in reply to justme-pc

Can I suggest you start by writing a post to introduce yourself and tell us what symptoms and health problems you have.

To write a new post, go to this link :

healthunlocked.com/write/th...

chrisknott profile image
chrisknott

Hi there. I have been on T4 for many years and have been really ill with fatigue, migraines and neck/shoulder pains, lower back pain and hip pain and systemic malaise after any exertion. I have had an ME/ CFS diagnosis for 27 years. About a year ago I did a test on the Thyroid UK website that showed I had a gene that could not convert T4 to T3. My GP agreed to put me on half T3 and half T4. Although there was some improvement the symptoms persisted. After reading Paul Robinson' s book 'Recovery with T3' and looking at some papers by Dr John Lowe (who wrote the foreword to the book) on T3 to treat CFS and fibromyalgia, I started to take T3 only at an increased dose divided into 4 doses per day (due to the short life of T3). I am still experimenting with the doses but all neck and shoulder pain and migraines have disappeared! I wonder if you could try T3 only for a week or two and see how you go? It is early days for me and I have acted autonimously by taking T3 only, but I intend to see my GP in the next few weeks to report on what I have done and the efficacy of my actions. Perhaps you could discuss T3 only with your GP? I hope you can find some relief. Blessings.

jamesal0 profile image
jamesal0

Hi cleodog

I had the same problem with NDT and Levo converting to RT3 as soon as I tried to get above .5 grains NDT or 50mcg Levo . The stuff would just pool in my tissues until I felt really crook.

I don't have a 100% cure but I may be able to help. The issue is probably your adrenals aren't working well. There are many theories on how to fix. The issue is you need a good cache of vitamins and hormones to help you absorb vitamins and make more hormones etc. So you spiral down the moment you go below certain levels.

Any way - what seemed to work for me.

1. 110% gluten free

2. Slow Release Natural Dedicated Thyroid - I get head spins on the normal stuff. I take 1 Grain at 11pm , .5 grain at 4ish am .5 grain 2pm. By spitting the dose it helps me not feel so wacked and by taking 75% of it at night I can sleep the worst of it off.

3. Mega Magnesium Not sure of size maybe 1000mcg daily (makes a huge difference) stops head fog and feeling like crap all the time.

4. B12 Injections you want your blood test to be around 1200 (normal range 170-900). Do not accept anything like 300.

5. D3 supplements (methylcobalamin) - 1000mcg x 1-2 per week

6. Ferro Iron vit C combo 325mg x 1-2 per week

7. TRT (testosterone replace therapy) Amazing stuff. Testosterone is one of the key hormones. Men really need a sufficient supply to help rebuild our body tissues. Women need it too, but make it differently.

Each day I take as much NDT as I can tolerate, it may be as little as 1grain or as much as 2.5. You need more if it is cold or if you are active. Slowly slowly I am getting more into me. Some days you will OD on it and go Hyper, just ease off and start again in 24 hours. Always try and get 1 grain into you per day. This is about the minimum an adult needs so not to do organ damage - but I truly understand you being stuck at .5 grains. March 2016 I was stuck at .25 grain. The problem is my kidney function and white blood cell count began to fail at that concentration.

Hope you find something useful from this lot.

best regards

James

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