Hi all
I am having real problems with levo and I can’t go on the way I am
I have no thyroid due to cancer and I am have a hard time getting my oncologist to understand
He is treating the symptoms and not the person and quality of life
I am seeing him on Wednesday and I am happy to pay for T3 if needs be
Can any one send me any websites in PM were I can buy it?
Also if I bought NDT would the NHS monitor me/ bloods ect?
Thanks
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People advised you in previous posts to get your vitamin levels tested. Have you done that and what are they? Whatever thyroid hormone you take, if vitamin levels are not optimal, it will not work effectively. You need to tackle all angles and get your ducks in a row. Changing your thyroid hormone may not be the whole answer.
You will also likely need to address your nutrition.
I can't tell you what your oncologist will be prepared to monitor, you'll have to ask and find out.
Have you contacted Butterfly Thyroid Cancer Trust and read their website? If your care is not being managed in a specialist thyroid cancer unit, you may wish to get a second opinion on the management of your aftercare, levothyroxine dose and symptom management.
The problem is knowing what is normal after thyroidectomy. If you're not in a location where they manage a high volumen of thyroid cancer cases, the oncologist may not be expert in knowing what symptoms are normal and which need to be explored further. If you are being treated in a specialist thyroid cancer unit then your multidisciplinary team should be able to help.
Let us know the outcome on Wednesday.
Hi. Thank you. I am seeing a private nutritionist tomorrow.
They are all in the low ranges
I have been on the website and finally been given a head and neck nurse to work with but they think I have a mental problem
And I am seeing a clinical psychologist and on antidepressants
I had none of this before my TT
They have dropped my dose from now 200 to 175 and I have my mind back
They don’t believe that it is the levo
I’m sorry you’ve had such a terrible time. There are many on here who cannot get well on T4 and I’m sure they will step in with advice.
Some people on here appear to have open-minded NHS endos who will help and monitor them if they self-source alternative meds, but that is not always the case - it’s pretty much a lottery.
The other possibility, if you can afford it, is to see a T3 and/or NDT friendly private endo who will give you a private prescription and help you to source alternative meds and monitor you.
If you post on here that you want a T3/NDT sympathetic private endo recommendation and your area, folks can private message you with suggestions. I know not everyone can afford that though. I’m only on T4, I ended up going private and my endo has really helped me get my quality of life back. I know if I ever needed it, he would prescribe me T3.
You’ve been through enough already - you deserve to see someone who has a genuine interest in your symptoms and health rather than blood test results which I assume is what your endo is doing.
Try asking your NHS endo about alternatives - it’s a start, you might be lucky, but at least then you’ll know. Don’t be surprised if he is rude and dismissive. From what I’ve read on here, they often can be. And if he is unwilling to change/raise your Levo dose even though you still feel unwell - ask him what alternatives he is going to offer you then to resolve your symptoms.
Good luck.
🤸🏿♀️🥛
Hi Paul
No-one here can tell you if your doctor will monitor you if you self medicate with NDT. Some will, some won't. My own GP, many years ago, refused to have anything to do with my thyroid, no tests, nothing, when I saw a private doctor who prescribed NDT for me.
If you can get a prescription for T3 then you can send that to Germany like many other members, details here:
thyroiduk.org.uk/tuk/treatm...
It must be written correctly:
Liothyronine
20mcg
100 tablets
If you are looking to self source T3 then members will respond by private message as we can't name suppliers on the open forum. I will close your post to replies so that no information is posted here.
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Help t3 test tomorrow - when to take meds?
MY NEW MEDS - ARE THEY T3?
For those on T3 only meds
T4-T3 conversion which meds?
