Thyroid UK
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First Endo appointment - help please!

Hi Guys

I have my first appointment with an Endo this afternoon and wondered if you could give me tips on what I need to be asking/saying? Even though my last TSH level was 1 (test done 2 months ago but GP did no other tests) I am still experiencing tons of hypo symptoms (I have Hashis and my antibodies were over 1300 - don't know if this will help? Gone gluten free and feel slightly better). I am still only on 50mg of Levo.

I seem to have woken up with a very fuzzy brain today and am panicking that I won't ask/say what I should now as I can't seem to get my thoughts in order!

Thanks for your help! :-)

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Just tell him how awful on 50mcg of levothyroxine you feel and tick off the symptoms you have (they don't like us handing them papers etc but don't worry) and say these are clinical symptoms I still have.

You have an Autoimmune Thyroid Disease called Hashimoto's due to having high antibodies. We are prescribed an increase for you on this basis. I hope he does. We can feel far worse on a low dose as it doesn't relieve our symptoms.

Tell him your 50mcg of levothyroxine isn't improving your health and hopefully he will increase dose and also tell him you've gone gluten-free trying to reduce the attack of the antibodies. (I do hope he is aware that thyroid antibodies attack our glands :) .

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

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Great - thanks Shaws! I hate it when you get head blank! I have printed the list of symptoms and highlighted them (a lot still!) and will take that. I have been doing a chart of of my basal temperature too and its going too low - do you think this will help if I show him?

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I doubt any Endo knows anything about the Basal Temp test, so you will have to judge for yourself if he/she is aware that our temp lowers if hypo as well as heart rate too.

You can give him the list of symptoms and if he ignores them, then you know for sure if he/she is knowledgeable about symptoms and how to relieve them. Mainly they only look at the TSH and if it is in range they assume we are on a sufficient dose, whilst ignoring symptoms. Before blood tests and levo were introduced as being 'perfect' we were diagnosed upon our clinical symptoms alone and given a trial of NDT. It would be excellent if the professionals knew the clinical symptoms and if they were being relieved that the dose was quite near optimum.

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Point out that you are severely vitamin D deficient, low B12 too

Gluten free diet has helped

Gut is therefore affected by Hashimoto's. This suggests you are under medicated and would like an increase in dose

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Did you find Teva was better option and have you also gone dairy free?

If so mention this too

What was last TSH, FT4 and FT3 results?

Dr Toft, past president of the British Thyroid Association and leading endocrinologist, states in Pulse Magazine,

"The appropriate dose of levothyroxine is that which restores euthyroidism and serum TSH to the lower part of the reference range - 0.2-0.5mU/l.

In this case, free thyroxine is likely to be in the upper part of its reference range or even slightly elevated – 18-22pmol/l.

Most patients will feel well in that circumstance. But some need a higher dose of levothyroxine to suppress serum TSH and then the serum-free T4 concentration will be elevated at around 24-28pmol/l.

This 'exogenous subclinical hyperthyroidism' is not dangerous as long as serum T3 is unequivocally normal – that is, serum total around T3 1.7nmol/l (reference range 1.0-2.2nmol/l)."

You can obtain a copy of the articles from Thyroid UK email print it and highlight question 6 to show your doctor

 please email Dionne at

tukadmin@thyroiduk.org

Professor Toft recent article saying, T3 may be necessary for many otherwise we need high FT4 and suppressed TSH in order to have high enough FT3

rcpe.ac.uk/sites/default/fi...

Official NHS guidelines saying TSH should be between 0.2 and 2.0 when on Levothyroxine

(Many of us need TSH nearer 0.2 than 2.0 to feel well)

See box

Thyroxine replacement in primary hypothyroidism

pathology.leedsth.nhs.uk/pa...

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Thanks SlowDragon! Saw your reply in hospital whilst waiting but no signal to reply!

Yes, the Teva brand (new formula) has been sooooooo much better and I have also been taking it at bed time (at least 4 hours after any food/other meds) which I find much better than morning too. I've gone totally gluten/dairy free now too and feel much better for it.

The consultant said he wants me to go back in 2 months before raising medication as he thinks that the old brand of Levo I was on that I reacted to won't have absorbed into my system so really I have only given the new brand 3 weeks to work...he says it takes 2-3 months for your body to start correcting itself once medicated. He also said gluten free/dairy free/Vit D3 loading dose will all help too.

He thinks my elevated ALT liver test is due to my thyroid too and hopefully that will correct when meds start working properly.

He has given me a form for full bloods this time before I see him (Hallelujah!! Not just TSH like my GP was doing) and he has also requested a parathyroid test as my calcium is low.

So....more waiting but Im staying positive as Im feeling slightly better from new levo brand/gluten free/dairy free/D3 so hopefully I'll keep feeling brighter.

Thanks again for your help...you and Shaws have been fab! 😊😊😊

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Glad to hear it went well.

How much Teva are you currently on?

Low calcium should correct naturally with vitamin D supplements. That's why it's important to take vitamin K2 Mk7 to send tge extra calcium to bones. Magnesium supplements recommended too

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I'm only on 50mg of Teva at the moment. He said he doesn't like to up medication too fast...he likes to give the body time to catch up before assessing a dosage rise because I could end up with palpitations etc. if we do it do fast.

He's also going to check my cortisol level as I've had a lot of stress the last few years.

Thanks for the recommendations for other supplements Ill get some this week and get going on them.

Hope you have a lovely weekend. 😊😊

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Read SeasideSusie detailed vitamin supplements advice

Eg

healthunlocked.com/thyroidu...

Only start one supplement at a time and wait at least 10-14 days to assess before adding another.

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Thank you! 😊😊

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