NDT or Levothyroxine

[recovered7]

Hi Everybody, its been a while since i was last on here but am still struggling, and especially so since seing my last Endroconologist. Can anybody help me with this question as i need advice urgently. 10 years ago i had Radioactive/Iodine to kill off my thyroid due to having a Multi Nodule Goitre and Hperthyroidism. For 5 years i was doing really well and feeling good with no need for any thyoid replacement, ( or so they said ) so i was pleased about this . Its 5 years on from that now and as some of you may remember i have being struggling ever since, i was first Diognosed with Hpothyroid and needed to start medication. My biggest problem has been finding some treatment that agrees with me, and always felt that NDT would be the best for me but this has not always turned out to be so because it hasn't always been well tolerated, depending on the type i ingested. To cut the long story short I was also recently Diognosed with CFS, and also Fibromyalgia, and also told i needed to see another Endocronologist as they were not happy with the fact my levels were not good, but would not accept that this was because i had been off all meds for a couple of weeks, and as i was not feeling good and was not sure what was causing it, but realise now that it was more than likely the Fibromyalgia, so anyway went to see the Endo whom explained that NDT was useless and as i had no thyroid the only thing that would help would be Levothyroxine ? I totally disagree and had already tried this drug but was having to many side effects to which he added they were all in my head and that neither had to be taken on an empty stomach as he gives his wife, ( whom is also HYPOthyroid ) hers every morning with a cup of tea ?? . My Concern is, could he be right ? I need to be sure that taking NDT is okay and cannot medically see why the other form of medication would be of any more use to me than the one I prefer. Has anybody here had Radioactive Thyroid treatment for same prob and taking NDT. Help would be so gratefully recieved as i need to relate to somebody else whom has had the ame treatment that is taking NDT and is doing fine. Thank you so much and so sorry that this is a long email .

[Hidden]

Are you saying that you did well for five whole years without a thyroid?! Wow, I thought everyone who had RAI was put on thyroid hormone replacement directly after the intervention.

It's impossible to say which drug(s) someone would feel best on. First of all, lab results while on thyroxine and NDT respectively (with reference ranges included) could give us an idea, but neither may be ideal for you. Some need T3 only, others a combination of synthetic T3 and T4 which is not necessarily the same as you find in NDT. But quite a few patients also do fine on T4 alone.

If you have no thyroid at all, all the T3 you need will have to come from the conversion of T4. Therefore, you need to have your FT3 levels tested to know where you stand. If they are lowish (many recommend they should be in the top third of range), that might indicate you are a poor converter and might benefit from the addition of T3...however, like I said, not everyone feels well with the fixed ratio of T3:T4 in NDT.

Do you have any recent labs to post here?

[recovered7 in reply to Hidden]

Hi Anna, i will look for my last results and put them on here but remember that my T4 seemed to be in normal range ?? Agree that it would seem amazing that i could survive so well without a Thyroid or any probs for 5 years ??

[shaws Administrator]

Endocrinologist is wrong. If you've been diagnosed with Fibro/CFS you are most probably Resistant to thyroid hormones, whether levothyroxine or NDT due to not being able to convert T4 to T3. I am not medically qualified but I will give you a couple of links. Fibro/CFS were 'named' so I believe about ten years after the introduction of the blood tests and levothyroxine.

thyroiduk.org.uk/tuk/about_...

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

web.archive.org/web/2010081...

Dr Lowe, now deceased, was the Director of Fibromyalgia Research Foundation and well as running Drlowe.com, Thyroidscience, and Fibro etc.

His sites are now archived and some info may not be accessible.

As regards endo's wife having levo with a cup of tea? He makes it all so simple that's because he is useless at solving patients' clinical symptoms. Neither has he ever experienced untreated/undertreated hypo symptoms.

[recovered7 in reply to shaws]

Hi Shaws , love your reply and fully agree, its disgusting really because the Pharmacist was quite strict about not combining medication with anything and was very definite about the contraindication with Milk in tea, or tea full stop. Thank you for the links. xx

[janveron1]

Yes, I had RAI in 2013 and found Levo not adequate to my needs. Converted gradually to Nature Throid over a year ago and very happy with it. Buy online from <supplier name>

janveron1

[recovered7 in reply to janveron1]

Thank you janveron, most appreciated. How long did it take for you to become underactive?

[janveron1 in reply to recovered7]

I was treated within a week with Levo but just got fatter from then on!!!

[recovered7 in reply to janveron1]

Are you still taking Levo ?

[janveron1 in reply to recovered7]

No I am now self medicating with Nature Throid. But have just had a minor heart attack with surgery 4 weeks ago. The hospital continued to give me my NDT along with the other in house drugs!!

I am very well!! But it seems that thyroid has been involved in this particularly low T3.

[janveron1 in reply to recovered7]

A matter of 2 to 3 weeks. Then put on 50 Levo and increasing to 100.