8-9 weeks on NDT: Hi. I'm just writing regarding... - Thyroid UK

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8-9 weeks on NDT

Print1972 profile image
22 Replies

Hi. I'm just writing regarding my transition to NDT. I was diagnosed bring hypo in early January. My initial TSH was 228. (that's not a typing error). I started on 50mcg of levothyroxine, and over the months went up to 125mcg. Unfortunately, although I felt ok, I suffered terrible pains in my lower legs. This started 3 weeks after going on to Levo. With each increase the pain become worse. Tendonitis then kicked in on both ankles the right ankle was unbearable at times. So painful to touch, and horrendous shooting pains. My ability to walk was also limited. To add to the ankle issue, I also policeman heel on both feet, plus numbness in my knees. If I stopped for just a minute then got back up again, the stiffness and pain would be unbearable. Everything I tried (stretches, heel support, Physio) failed. It was then I read that some other people had similar symptoms, and that NDT had helped. I spoke with my doctor, and she did admit, that thyroxin could cause problems, and it's not always great for everyone , but she wasn't able to prescribe anything else. I decided then, after reading extensively on this forum, to self medicate. My quality of life, was deteriorating. I started on thyroid S, but was also sent some Thiroyd. I went a bit gung-ho by just taking the equivalent dose as my Levo. The T3 in NDT hit me like a sledgehammer. This forum, advised me to take it start, so I reverted to half a grain in the morning and mid afternoon. I increased this after a couple of weeks. The pain in my legs started to disappear. Unfortunately, I never felt good, despite being sensible with the dosage, even after 6 weeks, I felt tired, and very nauseous. I then read that the fillets in thyroid S can affect some people. I then decided to give Thiroyd I whirl. It was like taking a magic pill. Within 2 days my energy levels had increased, no nausea, I felt alert and best of all, absolutely no pain any more in my legs (although this had receeded greatly on thyroid S). I'm now on 2 grains of Thiroyd, split through the day. I can't thank everyone enough for all the advice I've been given, as without this forum, I would have had no idea what to do other than stick with levothyroxine, and live with the debilitating effects it had on me.

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Print1972
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22 Replies
Clarebear profile image
Clarebear

Great news!! I too am on ndt - have recently switched over to Naturethroid as my GP has stopped prescribing ndt (Armour and Erfa) for me. I'm on 2.25 grains 3 days a week and 2 grains 4 days a week. Feeling very well and been stable for about 4 years now (apart for a blip in May when I managed to forget a few doses and became under-medicated).

Hope your improvement continues! Xx

mtcorr profile image
mtcorr

Print1972, I am absolutely delighted for you. I was just like you in so much pain on Levo and 10months in on Thiroyd I can honestly say it, along with this forum, has changed my life. X

finaramos profile image
finaramos in reply tomtcorr

Hello print, me happen just like you,

Can you tell me where you bought thyroid . it´s the same house as thyroid-s ?i was taking thyroid-s, thank you very much

Print1972 profile image
Print1972 in reply tofinaramos

I've PM you.

finaramos profile image
finaramos in reply toPrint1972

I tried thyroid-s ,but could not find the right dose,I took one and thee quarters of thyrid-s , but l just do not feel good

l bought thyroid l saw that it was not the same ,i had to take 3 grain

And l had my TSH 4

Olissima profile image
Olissima in reply toPrint1972

Hi print1972, can you PM the info where to buy thyroid and thyroid s? Thx

Maron007 profile image
Maron007

What is Thiroyd ? Glad it's working for you, quality of life is so important. I have been taking levothyroxcine since 2013, started with 50 and then 100 and most recently 125 which I feel over medicated on. My t4 was right at the top of flange and my t3 still within range but low. I clearly do not convert very well. Finally I am about to start a combination of t4 -100mcg and t3 - 10mcg have no idea if the amount of t3 is to much to begin with ? Just following my consultants instructions. She has given me some blood forms in case I feel unwell and need to get checked before I next see her.

Print1972 profile image
Print1972 in reply toMaron007

Thiroyd is a natural dessicated thyroid from pig thyroid. Before levothyroxine, NDT was always used. There are several brand names. Armour is well known and thyroid S.

finaramos profile image
finaramos in reply toPrint1972

NOW l am again levotiroxina and l am wrong ,lt happens to me just like you

Maron007 profile image
Maron007 in reply toPrint1972

Thank you.., short for NDT.

defectivegoose49 profile image
defectivegoose49

That's awesome! I'm 4 weeks into my Thiroyd and within 3 days of stopping Levo and starting it, I felt amazing. Very tired at the moment but I'm still working my way up to the right dose. Feel like a new person compared to how I was though.

shaws profile image
shawsAdministrator

It is surprising what a change of make of any thyroid hormone replacement can make. We are all so different and what suits one doesn't always suit another.

I am sure you are very delighted with your new hormones. It is great to feel well again, I know.

finaramos profile image
finaramos

Hello print, I happen just like you,

Can you tell me where you bought thyroid? Is it the same house as thyroids.s?I was taking thyroid-ss, thank you very much

silverfox7 profile image
silverfox7

I'm not sure why but those you can't take Thyroid S and then try Thiroyd are fine and vice versa but if anyone has any theories on that I should be interested to hear. I started on Thyroid S and was fine but thought to give the other ago to cut down on fillers and it made me really rough with tremendous headaches.

Print1972 profile image
Print1972 in reply tosilverfox7

I think it was the fillers that made me feel unwell. It's horses for courses.

Hi print 1972 I messaged with you a few times regarding taking NDT. I am so pleased that you have sorted it out and are now happy on thyroid. I had exactly the same problems as you last year and this forum sorted me out.

Print1972 profile image
Print1972 in reply to

Yes I remember. Thank you for your advice. It's do reassuring to receive advice from others with similar issues.

health2015 profile image
health2015

Hi Print 1972

Can you please let me know where you bought Thyroid from?

Many thanks

Mazamoomoo

Olissima profile image
Olissima

Also, low B12 can result in leg pains (neuropathy). Have you check B12 levels?

Print1972 profile image
Print1972 in reply toOlissima

My levels were fine. It was the levothyroxine.

Print1972 profile image
Print1972

Hi. Thanks for all the messages and support. I've had quite a few regarding b12, iron and other deffinciencies, plus feeling cold, my weight, tsh levels etc... Rather than answer everyone individually, I can say that in two weeks I'll be having another blood test. I take vitamin d supplements, and have done for many years. I have no other vitamin issues. I no longer feel the cold, as I always did. My temperature is fine. I'm fitter than I've ever been and feel more alert and focused than I've felt for over 10 years. I'm a 6 foot man and since February, my weight has come down from 13 and half stone to 11 stone 12. I hope that answers any questions. I'm very sensible with my four and also exercise. It's just easier to exercise after diagnosis, and on meds.

JackieHeath profile image
JackieHeath

Hi Print1972

Like you, I was taking Armour for over 10 years initially privately prescribed, then by my GP. GP has now stopped due to restrictions, so I have had to go back onto t4 and t3 - in 3 years I have put on over 3 stone in weight and experiencing all your symptoms especially with my ankles and feet also my shoulder/arm joints are agony - GPs do not understand how to deal with this condition, as my levels are apparently all ok. Can you please let me know where you bought Thyroid from? I really feel I need to do something myself. Although a bit apprehensive going it alone and having no backup. I'm was referred to Endo specialist at Addenbrooks but he is completely against Armour.

Many thanks

Jackie

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