Seem to be getting nowhere on NDT…….8 grains an... - Thyroid UK

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Seem to be getting nowhere on NDT…….8 grains and a still feel Hypo……How high have others gone with NDT…….or shall i try the T3 route??

Yamisix profile image
8 Replies

Firstly, hello to all on the Forum.

I have been battling with being Hypo for a while now. I feel like i have made baby steps progress wise, but, i am still a long way off being anywhere close to feeling good.

Here are my initial diagnosis numbers from 9 months ago.

TSH…. 4.85

FT3…. 2.19 (range 2.0-4.4)

FT4…. 0.58 (range 0.93-1.7)

Now, on the above results which are clearly Hypo…..i have had 2 doctors recommend that i go down the anti depressant route rather than address my thyroid!!!

I am located in Thailand, and, after the recommendations of AD meds, i have decided to go this alone.

I tried T4 only for roughly 4-5 months, starting at 100 mcg, worked up to 250mcg and felt next to no benefit.

I have since switched to NDT, and currently feel like i'm chasing my backside with it.

I feel some relief of symptoms every time i up the dose, literally one morning of feeling somewhat better, then, the next day i'm back to feeling Hypo.

I am currently on 8 grains (HUGE DOSE)…….not really wanting to go any further with taking any more.

Since the initial lab work i have not been rechecked as i have just gone on how i feel and playing close attention to my Basel temp and general wellbeing.

I had one morning where i woke up bang on 37 degrees (after a dose increase), the following day i was back at 36……weird!!!

I am now steady at 35.9-36.2 most mornings on 8 grains. i have held on 8 grains for 3 weeks now.

Do you think its possible that i have a RT3 issue, hence why a massive dose still leaves me struggling?

Getting RT3 tested over here is a no go otherwise i would have done it already.

Any suggestions are very welcome……..up the NDT or go the T3 route??

Yamisix

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8 Replies
roslin profile image
roslin

Hi Yamis

I was on 5grains and still very hypothyroid like you and Dr Skinner changed me to 3 grains and 40 mcg T3 which has made a difference. I am still not well and was going to contact him to see if I could reduce NDT further and take more T3 as I am also suspecting a RT3 issue. I have to do it myself now like you. If you are able to get hold of T3 you could try, but start slowly as it may have a big effect.

roslin

Yamisix profile image
Yamisix in reply to roslin

Hi roslin,

thank you for the reply. I picked up some T3 today…..the more i read, the more likely it seems that things could improve by giving it a go, fingers crossed!

Good luck with finding the correct balance for your own wellness…..it sounds like you are on the right track now.

Hey there

Have you got your 'ducks in a row' and taken care of any underlying issues? See here why thyroid hormone can stop working tpauk.com/main/?page_id=1599

How are your iron levels and have you had a saliva cortisol test?

Rebecca

x

Yamisix profile image
Yamisix in reply to

Hey GirlScout,

thank you for your input and the great link.

Mmmm, no saliva cortisol test yet, and, i do know my adrenals were poor a while back. I have seen decent progress with my adrenals once i started Thyroid meds, so was hoping that i had saved them in time (before a total crash). They are responding well to some exercise now, some of it quite heavy too.

I think a saliva test is a good idea, and if theres no marked improvement with the T3 switch it 1st on my list of things to do.

Clutter profile image
Clutter

If you have underlying deficiencies your thyroid

meds will never work without addressing them. Test for ferritin, vitD, B12 & folate.

Yamisix profile image
Yamisix in reply to Clutter

Thanks Clutter….. most are good (folate was terrible, good now), and D3 is being supplemented. My D3 could could be a factor.

Jackie profile image
Jackie

Hi I was put on 7 grains by a private doc, then Hyper, same symptoms as Hypo, very ill, when I saw my endo she reduced it to 2 grains + 20mcg T3, I have been stable mostly for years.

Of course, your figures show you are not overdosed, however I think you need other things checked, and perhaps your meds for thyroid altered., the Free T3, not total is best to measure the T3, I think yours is? I ,like lots of people need my FT3 near top of range, dangerous over, T4 top third, not too high.Your TSH is clearly high still.

Pituitar7y gland is not likely a problem with those results. Parathyroid may be, initial test,must be AM and 3 bloods together, Corrected calcium+ Parathyroid ( PTH) and vit D. If all well over range or 2 and vit D high for you. Next step is a nuclear scan of PTH and an ultra sound of thyroid.

You also need to have your Adrenal Glands checked. Needs to be through a doc as my Endo says the only test, reliable and any good ,is 24 hour urine collection with a low dose cortisone tablet at midnight and blood test agt 9am. She feel so strongly about this as cortisone, the treatment can be dangerous. If any patient goes to see her having had any other test, she requires a new one, it is often very different.

Best wishes,

Jackie

Yamisix profile image
Yamisix in reply to Jackie

Hi Jackie,

thank you for taking the time for such a detailed reply.

Its really good to know that you did a lot better on less NDT with more T3. I'm hoping that i will have similar results using T3……everything crossed!!!

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