Shall I try NDT?: I reacted badly to Levo years... - Thyroid UK

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Shall I try NDT?

bcdgn profile image
10 Replies

I reacted badly to Levo years ago so my GP put me on the T3 Liothyronine alone on a 10mg dose. I did feel brighter and better. Since having a small operation (cervical polyps)in Nov I have felt worse with a

swollen leg, swollen throat,carpal tunnel in my right hand and aching all over and have had a few viruses on top of it all.

I started taking 20mgs of the T3 and have had the swollen throat and a great feeling of anxiety and crying alot.

Am thinking of trying the NTD in desperation.

Please can someone tell me what my blood readings ?

THS level 4.36 mu/L 0.40-4.50 normal range

0.40-4.50. Serum free T4 level Value 7 pmol/L 7.0-17.0. Units pmol/L normal range 7.00-17.0.

With thanks

Barbara

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bcdgn
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10 Replies
sezzy profile image
sezzy

Your t4 is low but you need a t3 test to see where your levels are I get test done with bluehorizon but you could ask your gp to test your t3 levels.if your only on t3 that's the level that needs reading.

The t4 and tsh were they whilst you were on 10 or 20mg?

bcdgn profile image
bcdgn in reply tosezzy

I was on 10mg.

sezzy profile image
sezzy in reply tobcdgn

Do you have a t3 test result from being on t3 ? It could be 10mg was not enough and that's why your tsh was high but 20mg was too much and you had some hyper symptoms.

bcdgn profile image
bcdgn in reply tosezzy

Thanks. I will go to the doctors and ask them if they have any T3 results.

jaxnbreeze profile image
jaxnbreeze

I don't know anything about NDT but these results are only just within 'range' which means you are probably undermedicated. Have you tried Thyroxine (T4)?

Hennerton profile image
Hennerton

10 or even 20 mcg of T 3 is very low. Seems to me you need a higher dose. What was your bad reaction to T4? Just wondering whether the T3/4 combo would be good for you. Sometimes it is hard to take high doses of T3 only. Your vitamin and mineral levels need to be optimum and also your adrenals need to be in good shape. Have you had any other tests such as ferritin, b12, folate and Vit D and serum iron? NDT can also be hard to take, unless all these are good, because of the T3 element.

Overall though I definitely feel you need more thyroid hormone of some kind, whichever works best for you, so hope you get help soon from your GP. Maybe ask to be referred to an endo if possible?

bcdgn profile image
bcdgn in reply toHennerton

When I first went on Levo about 15years ago I was on 25mg and it seemed ok for a couple months, then the doctor put it up to 50 mg. I started to have really bad panic attacks. Was running out of the house every day. Then my throat got swollen regularly. I came off the Levo and my bloods were normal for quite a while I felt ok.I gave up smoking after pneumonia and my levels dropped dramatically. I felt really Ill and I put on 3 stone while they started to try me on all different makes of Levo. All made my throat swell. So in the end my GP said he wouldn't send me to an Endo because they would only give me thyroxine but then he started to try me on the T3 and I felt ok for a while on a low dose of 5mg. Put it up to 10mg and have been on that since.Started to feel Ill again aching all over after a cervical op in November. Had bloods done and you saw the results. Now my leg has swollen up below the knee, have extreme itching, anxiety and sleepless nights.Then I put it up to 20 and the throat swelling has started again. Really feel at the end of my rope.

Hennerton profile image
Hennerton in reply tobcdgn

Just clutching at straws here but what about trying a dose of 15? You need to cut the tiny tablet but it may help to go very slowly with the T3. I started with 20 mcg but took it in four divided doses, taking my temperature to check when the next dose was due and slowly increasing over a period of many months. Look for a book by Paul Robinson, calked "Recovering with T3 only". It should help you a lot.

humanbean profile image
humanbean

If your anaesthetic included nitrous oxide as one of the gases you were given, it is a known effect of that that it can strip the body of vitamin B12. Perhaps you could phone the place where you were operated on to find out whether you were given it.

ncbi.nlm.nih.gov/pubmed/825...

thelancet.com/journals/lanc...

jama.jamanetwork.com/articl...

bcdgn profile image
bcdgn in reply tohumanbean

Thanks will look into that.

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