NDT plus T3 : Hi, exasperated but determined to... - Thyroid UK

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NDT plus T3

dashi2208 profile image
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Hi, exasperated but determined to find the right medication regime. T4 alone was awful. NDT alone was better but not great. T3 alone was best but slightly overwhelming . . although have to say tinnitus symptoms seem slightly better on T3 alone. Now I'm experimenting with a NDT plus T3 combination. I'm splitting doses with 1/4 grain NDT morning and evening and 5mg morn/lunch/eve with T3. Trouble with sleep has been a perennial problem for years which I feel pretty sure is linked to Hypothyroid. Most mornings I'm waking 4.30-5.00 a.m feeling clammy and slightly panicky and a 1/4 NDT seems to calm me. I realise I'm taking very low doses but being cautious and painstaking in my medication approach hoping to hit a optimum regime eventually and sadly it seems more by luck than judgment as there is SO many various combinations of doses of meds and times to ingest them!? Any advice on some sort of dosing strategy would be most welcome.

Does anyone have similar experience with the aforementioned 'waking' symptoms please? I feel that decent sleep would probably be a key indicator of optimum meds.

Thx in advance. Richard

P.S average temp around 36

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Nanaedake profile image
Nanaedake

Tinnitus symptoms can be low B12, have you checked vitamins? Have you got symptoms of low B12? Visit the Pernicious Anaemia Healthunlocked forum to find out more as they are the experts.

dashi2208 profile image
dashi2208 in reply toNanaedake

thank you. I will look into your suggestion. :)

greygoose profile image
greygoose

Have you had your adrenals tested? They could be causing your waking problem.

Have you tried taking your T3 and NDT all in one go. With such low doses, you're never going to be able to saturate the receptors - and please don't tell me that T3 has a short half-life, etc. T3 doesn't stay in the blood very long, that's true, but it stays in the cells for several days. However, taking it in dribs and drabs, like that, you are never going to be able to fill all the cells, so some receptors won't get a look in, meaning that symptoms of low T3 will persist.

Just an idea. :)

dashi2208 profile image
dashi2208 in reply togreygoose

I agree. I, for the first year post diagnosis, took 100mg Levo which although didn't make me feel well gave 'normal' test results. I've worked out I believe the appropriate equivalent amounts of T3 and NDT in combination.

I figure 20mg of T3 = 80mg T4 + 1/2 Grain NDT = 18mg of T4 should give a reasonable starting off point . . . . . .fingers crossed. Logical you think?

greygoose profile image
greygoose in reply todashi2208

MCG, not mg.

1/2 Grain NDT = 18mcg of T4 seems a conservative estimate to me. One grain of NDT contains 38 mcg plus 9 mcg T3. If you take it that T3 is 4 x stronger than T4, that gives a total of 33 mcg T4 for 1/2 grain. If my maths is correct! Plus 80 = 113 mcg.

dashi2208 profile image
dashi2208 in reply togreygoose

Apologies..... Confusing my T4 & T3..... yes 1 grain being 9mcg T3 so 1/2 is 4.5 equivalently making 84.5. Thanks for pointing that out.

greygoose profile image
greygoose in reply todashi2208

Whether or not that's a good starting point, only time will tell. It's all trial and error, in this game!

dashi2208 profile image
dashi2208 in reply togreygoose

omg . . . .now I'm really messing it up maths and T wise.

Yes I see what you mean . . . still, 113 mcg is in the ballpark. I can't subdivide the pills any smaller really.

greygoose profile image
greygoose in reply todashi2208

Well, I'm no good at maths, so I can't criticise! lol

dashi2208 profile image
dashi2208 in reply togreygoose

P.S. to answer your question . . .. No I have not had Adrenals tested. My cortisol came back 'normal' is all the info I have. I have read that a one off blood sample is an inadequate test however. I figure though that being even slightly Hypo is likely to raise Adrenaline level as the body surely reacts to low metabolism by squirting around whatever stimulant it still has to hand in the armoury . . .so to speak. It certainly feels that way at some stupidly early hour of the AM when I startle awake!

greygoose profile image
greygoose in reply todashi2208

Yes, a one-off blood sample is inadequate. What you really need is a 24 hour saliva cortisol test.

Never accept 'normal' as an answer. 'Normal' is an opinion, not a diagnosis. And, all it means is 'in-range' - even if it's right at the bottom of the range!

dashi2208 profile image
dashi2208 in reply todashi2208

Hi Greygoose. You mentioned adrenaline and I found a product called A-Drenal : getrealthyroid.com/suppleme... Do you think something like this is a good idea or a red herring in your opinion? Same for I-Throid . . . good or a false hope?

Thanks

endomad profile image
endomad in reply togreygoose

I agree if i split my doses i am tired all day. I take 75mcg and have kept journal, i only start to feel more active 6 hours later. My energy is a gradual thing, not sudden, i just think i will do the dishes, then i drift onto something else and i am getting on with stuff, my energy/interest in doing stuff lasts about 4 hours.

I am no where near back to the old me but i am much better than i was, I am also estrogen dominant which im told blocks some of my t3 it is a very complicated illness with so many variables and it gets on my nerves. Iv just found out my morning ground linseeds in my smoothie are estrogenic arrrrrrgh. x

dashi2208 profile image
dashi2208 in reply toendomad

Hi there, funnily enough I almost private messaged you an hour ago. I read that you go to France to buy T3 and was curious. I got some via NHS but as we know that's a precarious and exorbitant situation. I'm also a little ambivalent about costing the cash strapped NHS so much to treat me even if it seems to be their fault. A little trip across the channel would be fun too . . . my wife would stock up on wine and cheese . . . me it's all about the drugs. My sister works for our local MP so I've asked her to try to draw his attention to the T3 craziness by the way.

endomad profile image
endomad in reply todashi2208

you can fill a uk prescription in france :) nhs t3 is usually 20mcgs tablets my cynomel in france is 25mcgs tablets so my dr does the prescription for 75mcg daily instead of 80mcg, if that makes sense x

dashi2208 profile image
dashi2208 in reply toendomad

so you can walk into any French pharmacy and fill a script I assume . . . that's great. Is it really £10 per 100 pills?

endomad profile image
endomad in reply todashi2208

i have used my prescription in 2 pharmacies they usually only have one box in so they order my 9 boxs for next morning. I pay 31 euros for 9 boxs of 30x25mcg cynomel = 270 tablets

Clutter profile image
Clutter

Dashi2208,

Try taking some of your NDT or T3 at bedtime. Some people sleep better for taking it at night and it may help with your 'waking' symptoms.

dashi2208 profile image
dashi2208 in reply toClutter

Hi Clutter, thank you.

I have tried what you suggest but without success . . . however I'm not certain that I was optimally medicated so probably didn't get a clear result . . if you follow. At that time I was just splitting a 1 grain dose of NDT. My thinking is that following a recent good , better in some ways not so good in other respects (clearer head, more focus and calmer but slightly wired physically if that makes sense?! ) result with T3 alone, adding some T4 via NDT might smooth things out. I think perhaps NDT alone was proportionally to much T4 vs not enough T3.

End Of Tether Coming Into View Richard.

shaws profile image
shawsAdministrator

I have re-read your post and note that your combination of NDT and T3 is equal to approx with half grain of NDT daily = 50mcg of levothyroxine and 5mcg of T3 = 15mcg to 20mcg levo, so your combined dose is extremely small (65mcg levo) and there's not need to split your doses.

Usually we start at 50mcg levo and an increase of 25mcg every six weeks till we feel well.

On NDT you can increase your dose every one or two weeks with 1/4 tablet. You can keep your T3 at 5mcg.

All of these questions/answers will be helpful especially the one dated January 30, 2002.

Dr Lowe was an Adviser to TUK before his early death.

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

getrealthyroid.com/conversi...

Too low a dose can backfire and we may feel worse.

I am not medically qualified but have done the rounds of various combinations.

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