My daughter has been on Levothyroxine for 18 years partlyfor Chrinic Fatigue. She has stopped taking Levi and is taking T3 in a dosage she is working out for herself.
My question is, if you don’t take Levo is this going to damage your health?
She says that taking T3 is making her feel better I can’t see any difference in her fatigue levels, and she won’t go for any more BTs as she says Drs haven’t managed to help her in 18 years
Plenty of people do very well on T3 only. Some people seem to need T4, others don't. It's a very personal thing.
I take it she's been diagnosed with CFS? Has she never been diagnosed with hypo? Was the levo prescribed?
Yes she was diagnosed at hospital with CFS and they put her on Levothyroxine
If they put her on Levothyroxine she is hypothyroid, not CFS
Many hypothyroid patients have very low vitamin levels and/or high thyroid antibodies
Essential to run full private testing. NHS often refuses to test FT3 or antibodies or vitamins
Many people need addition of T3, but important to get vitamins optimal too. Strictly gluten free diet helps many as well if has high antibodies
This is why we get confused, 18 years ago because of weight gain, extreme fatigue and thirst, the hospital thought she was diabetic, after lots of BTs they then said that she wasn't diabetic but had CFS.
With no definitive treatment they put her on Levothyroxine and she has been on it since, with up and down dosages following BTs results, hence she still has the above symptoms along with being very hot all the time and still extreme fatigue p, she only manages to keep working as she lives at home (age 42)
She once took 6 weeks off and was asleep day and night in bed for 80% of that time, and went back to work not feeling refreshed
Sounds very much like Hashimoto's.
NHS very often don't bother to test antibodies
Many of us only made progress after full private testing
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I agree with SlowDragon, they don't know if they're coming or going! It would be a very good idea if she could get hold of her complete medical records. That's the only way she's going to know what's really going on. Because, from the sound of it, no-one is capable of telling her!
She needs to arrange her own private blood tests
Thousands on here do the same, especially if self medicating T3, either in addition to Levo or on its own
For full Thyroid evaluation she needs TSH, FT4, FT3 plus TPO and TG thyroid antibodies and also very important to test vitamin D, folate, ferritin and B12
Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies or vitamins
thyroiduk.org.uk/tuk/testin...
Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have money off offers.
All thyroid tests should ideally be done as early as possible in morning and fasting. When on Levothyroxine, take last dose 24 hours prior to test, and take next dose straight after test. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, GP will be unaware)
If also or only on T3, make sure to take last dose 12 hours prior to test
If antibodies are high this is Hashimoto's, (also known by medics here in UK more commonly as autoimmune thyroid disease).
About 90% of all hypothyroidism in Uk is due to Hashimoto's. Low vitamins are especially common with Hashimoto's. Food intolerances are very common too, especially gluten. So it's important to get TPO and TG thyroid antibodies tested at least once .
Link about thyroid blood tests
thyroiduk.org/tuk/testing/t...
Link about antibodies and Hashimoto's
thyroiduk.org.uk/tuk/about_...
thyroiduk.org.uk/tuk/about_...
List of hypothyroid symptoms
thyroiduk.org.uk/tuk/about_...
Thanks for all the info
I have been on T3 only for 4 years and am so much better it is unbelievable. My friends have all noticed and my memory, energy, skin problems, fatigue and mood swings ( including paranoia) seem to have stopped! My heart was very slow before and I had atrial fibrillation - that has stopped too. I now feel as though I have started to heal ( I was not diagnosed for c. 1 year and my TSH was 98.7 when I finally got a diagnosis!). Whether there are long term effects that are worse than the long term effects of T4 I do not know, I'm afraid.
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