Thyroid UK
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Please help...not feeling like myself

I am new and I really need help. Before I start crying here is my story - I was diagnosed 10 years ago with hypothyroidism. I have never felt completely well on Levothyroxine and T3 changed all that and everything to me felt like it "made sense" and I felt like myself. I have a clinical need for it identified by my previous endocrinologist and since it has been taken away I feel tired, moody, am constipated, periods back to being heavy and irregular, skin very dry. I feel so isolated. I am 25 years old and I don't feel like my age, I feel 3 times that. Feeling and being so ill has cost me my family, relationships, social life and job. My current endocrinologist has also given me a diagnosis of general anxiety disorder. Please, if anyone could advise I would be grateful.

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You will get better advice if you post some test results and ranges : from when you were on levo only, and when they stopped your T3.

You should challenge your 'endo's' 'diagnosis' on the grounds that he is not qualified to make psychiatric diagnoses. He doesn't even know much about thyroid, obviously, what makes him think he can diagnose a mental condition? Talk to your GP about it. I dispute that such a condition even exists! Anxiety is a symptom, not a disease.

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TSH 1.40 (0.2 - 4.2)

Free T4 19.4 (12 - 22)

Free T3 4.0 (3.1 - 6.8)

On just 175mcg Levothyroxine

When T3 was stopped

TSH 0.03 (0.2 - 4.2)

Free T4 13.1 (12 - 22)

Free T3 2.2 (3.1 - 6.8)

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Natasha1234,

I'm not clear which results were based on 175mcg Levothyroxine and which were on Levothyroxine plus T3. How much T3 was prescribed?

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The first ones were when I was taking just 175mcg Levothyroxine and the second lot was when T3 was taken away. I was prescribed 2x quarters of T3 once a day with 75mcg Levothyroxine

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Natasha1234,

You were undermedicated on 75mcg Levothyroxine + 10mcg T3 because FT3 was considerably below range despite TSH being low/suppressed.

What dose are you taking now?

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25mcg Levothyroxine

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Natasha1234,

Are you saying endo reduced dose from 75mcg Levothyroxine + 10mcg T3 to 25mcg after seeing FT3 was below range?

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Yes

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Natasha1234,

This guy will never get you well. Write to the head of endocrinology and explain what has happened and ask to see a consultant endocrinologist who knows what s/he is doing. Your GP may be able to help you.

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Ok I see my GP on Wendsday for my medication review, I will raise it then

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Then you seriously need to see another endo, because that one is a moron! Your FT3 was under-range! And, your results on levo show that you are a very poor converter.

But, of course, this is all down to cost. They're trying to get as many patients off T3 as possible due to the exorbitant cost of it. And to hell with the patient. There are people you can complain to, but I don't know much about it because I don't live in the UK. I would suggest you change the title of your thread - or start a new one - mentioning that you've had your much-needed T3 taken away, so that you attract the right people to read it. :)

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Do I delete this one? New thread added

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No, no. Keep this one, in case you want to refer back to it. :)

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Ok will do. Thank you :)

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Natasha1234,

What reason was given for withdrawing T3? Did endo increase Levothyroxine dose when T3 prescription was withdrawn?

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Endo did not increase dose of Levothyroxine when T3 was removed and he said conversion of T4 to T3 was not relevant even though endo before him said I cannot convert T4 to T3

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Natasha1234,

New endo is an idiot but so was previous endo for reducing so much Levothyroxine and only replacing with 10mcg T3 which left you seriously undermedicated. Ditch him because he doesn't know what he's doing.

Email dionne.fulcher@thyroiduk.org if you want a list of member recommended endos.

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Endo reduced me to 25mcg Levothyroxine saying I could do with some extra weight

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When on 175 T4 your Ft4 was at 19, so in a good place. Ft3 was at 4, but could be higher.

So i would have been holding the 175 dose and added in a smaller amount of T3 to see how things went. Starting with 2.5mcg. Then working up over a period of weeks if you feel it is needed. So you may have been on 175 T4 plus 10 T3.

It is much better if you can find a dose of T4 you are semi happy on and when the Ft4 is in the higher teens. This is then your base thyroid replacement and the T3 can be used to fine tune things. It doesn't always work for some people, but it sounds like this was working out for you and you had dropped T4 a lot as well, which possibly worked against you.

Getting your own T3 on the net may be your best option, but maybe you will get some on the NHS again.

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Levels were holding steady on just 75mcg Levothyroxine and 10mcg T3 thanks

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They had no right to remove your T3 if you felt well on it ...post your results and then you may need to file a strong complaint

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Any decent Endo would have recognised a conversion problem and should have known to check vitamins first as they help with this. B12, folate, ferritin and Vit D help with conversion and make well have solved your problem without needing T3

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Your endo is wrong wrong wrong

You need the t3 and it should never have been removed

You are going to need a partner or friend tough enough to stand up to these doctors insist that its the removal of t3 thats caused the problems and get it reinstated

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