Questions about going on to Thyroxine - Thyroid UK

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Questions about going on to Thyroxine

wysewoman
wysewoman

Hello,

I have completion thyroidectomy in a few weeks following the discovery of papillary thyroid cancer in the right side of my thyroid following a hemithyroidectomy.

I understand I will start taking Thyroxine straight after. I have read that some people do much better on NDTs and fortunately my consultant / endo has said she is open to discussing that further.

I am going to try Thyroxine first but i wondered what sort of symptoms typically prompt people to abandon that and try NDTs ?

How will I know that my dosage isn't right ? Will it be a case of me feeling much sleepier or maybe too jittery than I normally would ?

Any good links appreciated :)

Thanks,

Melissa

4 Replies
oldestnewest

Each person responds differently and it can also take some time before the deficiencies start to show. I had TT in 2006 but it was a few years before things started to go wrong and constant aching joints and muscles started to become a problem. I also kept having strange infections I had never had before. I am now on a mix of T4/3 and NDT but still trying to get it right. My body will probably take ages to recover from years of under treatment on Levo. My personal view is if you have the chance of NDT now, do not hesitate. Why settle for half a treatment when you can have the right one to start with? I hope all goes well for you.

shaws
shawsAdministrator

I second Hennerton's viewpoint although the Endocrinologists will probably put you on levo first (£1.50 approx per month).

I am hypo and my personal view is that if someone's thyroid gland is removed they should have the full range of hormones that the thyroid gland would have, i.e. T4, T3, T2, T1 and calcitonin plus maybe a few other things we are not aware of. It is also more synergistic with the human body. There are several choices of NDT and the levothyroxines are generic and synthetic and has had more recalls. There was only one Brand of levothyroxine and it was Eltroxin but that has been discontinued. Information re generics at the bottom of the page in the following link.

thyroiduk.org.uk/tuk/treatm...

thyroiduk.org.uk/tuk/treatm...

Melissa,

Whichever medication you choose will need titration until you achieve an optimal dose. My sister does well on Levothyroxine (T4) post RAI for Graves, I did poorly post Hurthle cell carcinoma. If you have the option to try NDT I'd bite your endo's hand off. Alternatively consider T4+T3 combination as many TT patients seem to need the addition of T3.

I was started on 3 x 20mcg Liothyronine (T3) immediately after completion. I still felt exhausted and fatigued and experienced shortness of breath during exertion but had experienced these prior to surgery and Hashimoto's diagnosis and expected time would cure.

Two months later post RAI I was put on 200mcg Levothyroxine and despite 25mcg reductions every 3 months for 18 months, health went downhill until I was 90% bedridden and suicidal. I was in pain, couldn't lift my arms to comb my hair, had excrucating palpitations and tremors, was so short of breath I would grey out and have to sit after 10 minutes standing and finally diagnosed with fibro and COPD. Inhaler thingwy didn't help breathing at all.

I was convinced I had levothyroxine toxicity and finally proved it by stopping medication and allowing my system to clear. Syptoms resolved within a couple of weeks and Spirometry testing showed I had lung function 3 years younger than my chronological age. Blood tests also showed I was vitaminD and folate deficient and B12 was low in range. Life was better off meds with TSH 107.5.

I resumed levo at 100mcg and supplemented vitD, folate and B12. The Levo symptoms started to return after 7 days and I self medicated with T3 which calmed a lot of the T4 adverse symptoms. I am recovering now but slowly as I have no energy or stamina and need to build my fitness gradually.

Hi there,

Many thanks for the replies.

Clutter - it sounds like you have had a real trial with things ! I do hope things improve for you. Have you tried NDTs ? It sounds like you've been trying to work out a good Levo and T3 regimen ?

As per your advice a few weeks ago I take good multi vitamins, a B complex, Vit D and iron tablets every day. :)

Wishing you well,

Melissa

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