Does anyone else find?: In 2003 I was diagnosed... - Thyroid UK

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Does anyone else find?

Maelanro profile image
5 Replies

In 2003 I was diagnosed with over active thyroid. I received RAI treatment which knocked it under. I went onto Levithyroxine which for years seemed to be okish. Then three years ago it stopped working . We tried anything and everything and have currently settled on Teva liquid Levithyroxine which though I understand doesn't work for many, seems to once again be 'ok' ish. I also don't have the anxiety on it which seemed to come hand in hand with many other treatments.

But food intolerances came with it .....so I cut out gluten , soy and dairy and for me sweeteners.....which was interesting.....as many of you know this is in everything!!!! (The Dr thought perhaps it was coeliac but said to test it would mean going back onto everything for six weeks and I didn't seem able to even do a few days back in things stomach pain and lower back pain wise) At least one of these. So as long as everything is cooked from scratch it's good to go. To a certain extent doing this has given me back a life that I lost for many years.

Now I'm trying on the exercise aide, but any exertion as such absolutely flattens me, in the respect of it gives me the shakes and pains in the kidneys and lungs etc? And not just due to lack of exercise....its a really weird one! Does anyone have any tips they can share on what they do as it is something I would like to do, but it just doesn't seem do-able at the mo. The mind is willing.............

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Maelanro
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shaws profile image
shawsAdministrator

Have you not been given a trial of T3 (liothyronine). T3 is the active thyroid hormone and we have millions of T3 receptor cells in our body.

We used to have thyroid hormone replacements called 'Natural Dessicated Thyroid Hormones.. Unfortunately withdrawn by the 'supposed to be' experts. It contained all of the hormones a healthy gland would have provided and those people who were well on them were shocked and upset.

I have my thyroid gland and levothyroxine gave me awful palpitations but T3 (liothyronine) resolved them and I am well with no clinical symptoms.

Request a trial of T4/T3 (levothyroxine/liothyronine) and/or T3 alone.

Maelanro profile image
Maelanro in reply to shaws

Hi there, thanks for your reply. I did indeed try T3 and psychologically I didn't get on well with it. Mentally I have only ever done well on the liquid Levothyroxine. It is the physical side that is still skewiff. I know T3;works for an awful lot of people and would have loved this to be the case. We tried different dosages and lots of different things but I just went more OCD and anxious. On the liquid I have hardly any of the psychological.side but cannot keep up the physical side without being flattened. As I say the mind is willing, the body is not. Thank you so much for your reply.

shaws profile image
shawsAdministrator in reply to Maelanro

I hope you find a solution and many recovered their health on the very original replacement ie. Natural Dessicated Thyroid Hormones, prescribed since 1892 and was the very original that saved lives from then on without blood tests and doctors only going by the patients' clinical symptoms.

Big Pharma wanted a share of profits, so invented levothyroxine. Many seem to be fine on levo but many, I think the majority on this forum, cannot.

SlowDragon profile image
SlowDragonAdministrator

Do you split your liquid levothyroxine into 2 or 3 doses spread through the day?

Members who get liquid levothyroxine seem to often find this is better

ESSENTIAL To regularly retest vitamin D, folate, ferritin and B12

When were these last tested and what vitamin supplements are you currently taking

As you have developed lots of food intolerances likely to need addition of T3 prescribed alongside levothyroxine

First step is to get FULL thyroid and vitamin testing done

Improving any low vitamin levels before considering seeing any thyroid specialist endocrinologist for prescription for T3

all thyroid blood tests early morning, ideally before 9am last dose levothyroxine 24 hours before test

This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)

Private tests are available as NHS currently rarely tests Ft3 or all relevant vitamins

List of private testing options and money off codes

thyroiduk.org/getting-a-dia...

Medichecks Thyroid plus antibodies and vitamins

medichecks.com/products/adv...

Blue Horizon Thyroid Premium Gold includes antibodies, cortisol and vitamins by DIY fingerprick test

bluehorizonbloodtests.co.uk...

If you can get GP to test vitamins then cheapest option for just TSH, FT4 and FT3

£29 (via NHS private service ) and 10% off down to £26.10 if go on thyroid uk for code

thyroiduk.org/getting-a-dia...

monitormyhealth.org.uk/

NHS easy postal kit vitamin D test £29 via

vitamindtest.org.uk

Come back with new post once you get results

Meanwhile

Email Thyroid U.K. for list of recommended thyroid specialist endocrinologist and doctors who will prescribe T3

tukadmin@thyroiduk.org

Maelanro profile image
Maelanro in reply to SlowDragon

Brilliant thanks for this. Along with the previous reply it is really interesting to take on board the T3 element. I am wondering if there is a way it won't send me completely off track. I will also look into getting the vitamin levels tested. Thank you so much for your reply.

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