Endo appointment : Hi all , literally typing this... - Thyroid UK

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Endo appointment

Jodiedebs55 profile image
18 Replies

Hi all , literally typing this as I sit in my car after my appointment with an endo , not seen her before as last time (3 years ago) I saw a guy who decided my hypo symptoms were due to me being depressed as I have a severely disabled son...he then prescribed me prozac which I obviously refused, anyway was expecting the same idiot conclusions today so wasn't really listening while she explained T3 and Ft3 and rt3 results were actually irrelevant and not important and how the main test to focus on is of course TSH 😳 please lord give me strength.... blah blah blah , she saw i take 75mcg T4 for 4 days and 50mcg for 3 days (doctors idea not mine ) and i take 12mcg T3 am. My blood results show I'm under medicated on both but would she listen ? Nope she recommends reducing my T4 to 50mcg every day BUT .... that my gp prescribes me 10mcg T3 at waking and 5mcg T3 at 1pm 😳 .. that shut me up.. never have I seen a gp or endo that agreed I need T3 , they know I self source , just because shes telling my gp to prescribe the T3 does he have to? Or can he refuse like my previous gp ?? She said he has no reason to say no so I live in hope as it will save me a heap of money and headache of sourcing it myself, she also made me giggle and said I should join thyroid UK as many of her patients have learned a lot from the group, she also commented how I was "quite well educated " on my thyroid condition, I said well i have THYROID UK to thank for that as the members and admin basically saved me from despair... true fact ...your all amazing.... xx

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Jodiedebs55
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18 Replies
Lalatoot profile image
Lalatoot

Fingers crossed for the T3 from the GP.

Some of us need fairly high FT4 as well as fairly high FT3 so the slight drop in levo might cause you to feel unwell particularly if you felt it need increasing anyway. This happened to me.

Jodiedebs55 profile image
Jodiedebs55 in reply to Lalatoot

Exactly my point but daft gp and endo reckon whilst taking T3 the TSH should NOT be suppressed and the reason it is, is because the T4 dose is too high so reducing it will help . I give up . I'm trying to get optimal results which is impossible because they wont prescribe the right dose . How can she agree I need T3 then in the next breath say the results of T3 are irrelevant .

SlowDragon profile image
SlowDragonAdministrator

Wonders will never cease .....

If endocrinologist says you have clinical need of T3 she should prescribe the initial 3 month trial via hospital pharmacy....then writes to GP to request formal transfer of care and ongoing prescribing

sps.nhs.uk/wp-content/uploa...

Jodiedebs55 profile image
Jodiedebs55 in reply to SlowDragon

I queried this and she said no gp prescribes it . I think I will have to start sourcing my own levo as well as T3 because reducing my T4 to 50mcg is going to put me back to being bed bound , I'm so angry right now I wish I hadn't gone I knew it would be pointless, it's like they are trying to make us ill ???? She also reckons my symptoms of parxsmol atrial fibrillation is nothing more than symptoms from too much T3 ??????? Ummm well why are you suggesting an increase of 3mcg then ???? I gave up asking I just needed to smoke a cigarette and I don't smoke but you know what I mean I felt so angry and beat down . When I said I'm only 15% in range with my T3 results she said sorry I don't understand what you mean ??? What percentage of what ? ??? I question is she a qualified consultant cos I think she may have just popped in the room on her way to the restaurant cos seriously I knew more than her and I know very little.... I'm worn out even thinking about it shes mashed up my brain

McPammy profile image
McPammy in reply to SlowDragon

Thank you for this link SlowDragon. I’ve printed it off just in case I or my sister needs it going forward. 👍

SlowDragon profile image
SlowDragonAdministrator

Technically the consultant has to prescribe the first 3 month trial....obviously if already on T3 that's a bit if a grey area

Yes consultant must write to GP and request prescribing

Jodiedebs55 profile image
Jodiedebs55 in reply to SlowDragon

I rang the endos secretary and explained I'd looked it up and that she should provide the first 3 months then gp take over she said she would speak to endo then call me back , she did , then told me she had my notes infront of her to send to my gp it had NO mention of our conversation saying she would request gp to prescribe 10mcg am and a further 5mcg at 1pm only that this lady sources her own T3 and I think shes over medicated on levo so reduce to 50mcg a day . I'm beyond upset I'm literally in tears, it cost me £37 in fuel and car park fees that's £37 I don't have, then to be assured I'd be prescribed T3 by my gp then to find shes not even requested it . I don't understand why shes done that . I'm not happy.

SlowDragon profile image
SlowDragonAdministrator in reply to Jodiedebs55

So she refuses to put anything on record ...so sorry...yet another disastrous consultation

Jodiedebs55 profile image
Jodiedebs55 in reply to SlowDragon

Yes the secretary read it back to me and no mention of the request to gp and the promise it would be met

SlowDragon profile image
SlowDragonAdministrator in reply to Jodiedebs55

Can you contact endocrinologist direct.

Pity you didn't record the consultation

Jodiedebs55 profile image
Jodiedebs55 in reply to SlowDragon

I tried today but got the secretary, I wish I'd recorded her now as I'm dam sure i didn't imagine what she said .

SlowDragon profile image
SlowDragonAdministrator

Last blood test results

healthunlocked.com/thyroidu...

Suggest you email her the helpful calculator for working out percentage through range

chorobytarczycy.eu/kalkulator

Shows your FT4 is 58% through range

FT3 only 7.69% through range

Obviously as you were only taking single dose of T3 this result was false low Ft3 as last dose was 24 hours prior to blood test

Have you now added 2nd dose mid afternoon?

How long have you been on this regime?

Getting bloods retested 6-8 weeks after each dose change

Make sure to delay last dose T3 to around 9pm on day before blood test to get 12 hour gap between last dose T3 and blood test

Jodiedebs55 profile image
Jodiedebs55 in reply to SlowDragon

Thanks slowdragon , yes I began taking an extra 5mcg T3 around 2pm and have been doing so for 2 weeks now , Ft4 is 58% is that good or bad ? What will happen if they reduce my levo to 50mcg a day ? Should I source my own levo now and carry on with 100mcg ? I'm so upset I can't think straight , sorry to bombard you with questions I don't know what to do

SlowDragon profile image
SlowDragonAdministrator in reply to Jodiedebs55

Some people manage fine with low dose Levothyroxine

Others need reasonable levels of FT4

I think you said after top of page ..you are currently on 75mcg 4 dates and 3 days at 50mcg ...

So reducing to 50mcg may not be too much .....if FT3 is high enough

But if she clearly said GP should/would prescribe 15mcg T3 per day ...she MUST write to GP to instruct GP to do so .....Ideally as 3 x 5mcg tablets

Jodiedebs55 profile image
Jodiedebs55 in reply to SlowDragon

She 100% said she would write to my gp to ask to prescribe 10mcg am and a further 5mcg at around 1pm I made her repeat it to make sure I got it right I also said he wont prescribe it my last gp refused to after my first endo told him I would benefit from T3 and she said he cant refuse it I agree you need a top up on top of the 12 your already taking and you shouldn't have to source it yourself, then contradicted herself by saying I was over medicated on both T3 and T4 and reduce T4 to 50 mcg q day .. I think I'm going to ring again tomorrow and ask to speak to her direct thankyou for your advice and replies I really appreciate it

Jodiedebs55 profile image
Jodiedebs55

Apparently not as my previous gp from last year refused after my first endo request to gp to prescribe..

humanbean profile image
humanbean

Although this doesn't appear to apply to hospital consultants (I really wish it did), it is still something you should be aware of. It could be useful in the future.

healthunlocked.com/thyroidu...

Jodiedebs55 profile image
Jodiedebs55 in reply to humanbean

Thankyou that's good to know

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