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Thyroid UK
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Am sooooooooooo angry

requested a telephone call from my doctor wish I had taped the conversation -

Medication T 4 100 mg daily :

TSH= 0.57

T3 = 4.00 range ( 3.1 - 6.8 )

T4 = 20.25 range (10 - 22 )

Q - should I have another blood test before see endocrinology in August ? -

A - yes, just have a TSH -

Q - what do you think about the last blood test results ? Am thinking that I may have a conversion problem - my T3 is in the bottom of its range and my T4 is at the top of its range they are not in balance - would a test for reverse T3 be an idea ?

A - Well, I disagree with you there, your T3 is half way and you have some T3 so that's ok

Q - Did you send my working papers to the endo as promised when I last saw you ?

A - Well, I asked them to, don't know if it happened, well, just write it out again and send it in advance, though doubt the endo will have time to read it and very much doubt there will be time at appointment to discuss them -

So, there we are, my working papers ( 5 pages ) contain 3 sheets of charts

highlighting my fluctuating temperature through the day, suggesting my adrenals are compromised due to the long standing health issues I have been suffering since RAI and being medicated solely by levothyroxine T 4:

Need to rant - sorry - will go and cut something down in the garden !!!!!!!

22 Replies
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Not very good at maths, is he! lol Not very good at thyroid, either. Wonder what he is good at...

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Hey there grey goose - have followed your comments since coming onto this site -

and yes, I now, you're not surprised and realistically " why I am I " ?

He is a she and she is good at being rude and dismissive -

first my ongoing problems were just shrugged off, and my paperwork considered old fashioned and not scientific - now having made me pay for the blood test she ignores

the results !

Hey ho, shall start another post requesting any PMs for a doctor in Cornwall who has

" 0 " level maths !

Love your input - thanks for reply

Penny

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'A' level would be better, but anything's got to be better than this one!

Such a disappointment! Such a waste of tax payer's money that she spent all those years in med school and turned out useless! Ho hum. Hope you get some good replies to your thread. :)

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Thanks, there are no doctors in Cornwall on the Thyroid UK lists -

there is an integrated Medical Doctor in Exeter - so will pump up

my bicycle !!!! I am fully aware of my limited knowledge and just feel

I need to get someone to " lean on - bounce off " to kick start my own

way back to wellness, or at least better health than this !!!!!

P.S. I do have a little car - not sure I can manage that far by myself !

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Yes, long-distance driving can be a problem when you're hypo - especially if you're not used to it. I used to do a lot of driving, all over Europe, but I don't feel so much like it, these days. :(

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Ditto

Laptop time over - any longer and I will not be able to wind down enough to get to sleep !

Ciao

1d.

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Ciao. Sleep well. :)

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Bon jour

just wanted to say that it wasn't about my papers -

they served the purpose of keeping me focused at the doctor's appointment - I was polite and exact covering everything within the time allocation -

Having felt verbally ignored, tried paper, it worked-in that I got an increase in T4 back to 125 where I was some four years ago - a T4 and T3 blood test which I had to pay for - and a referral to an endo -

my backing papers could have been blank - like her expression - but I've a step forward - the hospital treated me for 1 autoimmune condition by giving me another 2, am now with 3 autoimmunes and a lack of effective medication !

So, yes, of course I have copies of my papers - but they are not appropriate for the endo -

I seem to have immense clarity of thought around dawn on most days, and am now ok with her ignorance and rudeness - I can't change her and the reality is I'm one of many out here dealing with this fallout in the medical world - I must move on and try some other way to resolve my issues -

Thank you for being there,

One Old Penny looking for change ????

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I think you may have clicked on the wrong reply button here. I think this response might have been intended for Clutter, not me. :)

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Oh sorry, yes, apart from the opening it is more related to Clutter's comments - do I have to rewrite it all to Clutter ?

sounds of yesterday !!!!!

thanks

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I think she'll see it now, I've high-lighted her name. :)

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Merci beaucoup !

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De rien. :)

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Pennyannie,

Unless those tests were done recently it would make more sense to provide the endocrinologist with TSH, FT4 and FT3.

rT3 isn't tested on NHS as far as I'm aware.

There is scope to increase your Levothyroxine dose to raise FT4 and FT3. Read Treatment Options in thyroiduk.org.uk/tuk/about_... Email louise.roberts@thyroiduk.org if you would like a copy of the Pulse article to show your GP.

NHS endocrinologists are so busy it is unlikely they have time to wade through pages of information sent by patients prior to consultations. Take the charts with you to discuss during your consultation.

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Thanks Clutter

The tests I have are from May 2017 - didn't realise rT3 wasn't available on NHS -

Thought the gap between my FT3 and FT4 and having a ratio of 1-5 was too

wide to be closed with a T4 increase - however - so thank you for imput -

Penny

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I personally wouldn't bother the GP if he has already done the referral. As Clutter suggested, just bring everything along to the endo appointment.

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Yes, that's what I intend to do - it was just the way I felt I was told that nobody has any time for me - thanks for reply

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It think it's the same with most people, the NHS really isn't fit for purpose anymore.

I am actually waiting for an NHS endocrinologist referral and ordering tests privately at the same time XD. I have very little confidence in the NHS.

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Well I think 10 min appointment time says it all! Thankfully my doctor listens, can't help me but does listen and at least I feel better for that!

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Yes, it's ironic really isn't it - acknowledgement would help, but there you go :

Thanks for support

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After a TT and RAI I felt sort of OK-ish on 150mcg of levo at first. Then the symptoms started, slowly at first, then relentlessly. Changes up and down in the dose did not give me satisfaction for more than a short time. Neither did any vitamins, chinese concoctions, dietary changes, exercise (I wish!) or anything else.

Doctors did NOT tell me that combination T3/T4 could, at that time, have been been readily prescribed; I had told them for years that Levo did not work for me.

When I bought some Thyroid-S from Amazon UK (I wish it were still available from there) and started to feel much better, I asked the docs to prescribe me some on the NHS. The only answer I got was that it was "not licensed" and they could therefore not prescribe it.

I now buy my own from Thailand, have given up 100% on ever getting proper treatment from the NHS unless dramatic changes are made and am now concentrating my efforts on trying to force those changes into place.

So far, 3+ years of effort and very little to show for it.

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Thank you for reply, am assuming the 3+years applies to your efforts to effect change in thyroid treatment - am trusting your self medication is still a work in progress but on the positive side ?

Had RAI some 12 years ago and ditto your first sentence. Sadly nothing seems to have changed. Will keep the endo appointment next month just to see if I can get sanctioned for T3 -

also now believe my adrenals are compromised - need advice and hopefully a test ?

self medication does seem to be the only option - need to read up on what's appropriate :

Considering Graves Disease is said to be stress related all this turmoil is doing wonders !!!!!

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