Endocrine appointment

[Helly75]

I've got my first endocrine appointment through for 11th March, any tips on what to ask / say or not say ?? I'm not particularly hopeful about it but trying to not have a negative attitude!

[Buddy195 Administrator]

I would stress that you would like to be started in a trial of Levothyroxine, due to your ongoing elevated TSH in recent blood tests. I would also ask for anaemia testing (if GP hasn’t actioned this from previous test). Also ask for physical examination of your neck and a referral for ultrasound (as SlowDragon recommended previously.) If endo requests further bloods… do ask for FT3 (as I think this was missing from previous test) and thyroid antibodies (if you’ve not had these checked previously?)

I like to go to new appointments armed with a list of questions to tick off… and someone with me for moral support!

I’m not sure if your referral is to an endo on the TUK list (?) Unfortunately, some are more ‘clued up’ on diabetes than thyroid conditions.

Do let us know how you get on 🦋

[Helly75 in reply to Buddy195]

I think they aren't keen to start levo because of my cardiac history though I'm not sure . I was speaking to gp last week & asked for more bloods & some to be repeated , some she wouldn't do like T3 . I did find out my hemoglobin & iron have dropped again ,sent me capsules which they know I can't take 🙄 so I've requested liquid that I can tolerate, I'm also pre diabetic now ,wonderful! Maybe hashimotos, hypothyroidism & steroids are playing a part in that ?! The endo I'm seeing is nhs but I've had a Google & you're probably right ,the profile says more about diabetes than anything else that's why I'm not very hopeful, I will write some stuff down & hope I don't break down which is what usually happens, thank you x

[SlowDragon Ambassador]

If possible take a supportive witness with you (preferably male)

Request testing for autoimmune HYPOthyroid (hashimoto’s) and retest TSH, Ft4 and Ft3

Endo unlikely to acknowledge autoimmune thyroid disease as hashimoto’s

Request starting on Levo

Work on improving low folate and B12 as detailed in previous post

healthunlocked.com/thyroidu...

Get vitamin D retested now before consultation and work on improving

Low vitamin levels tend to lower TSH …..so getting vitamin levels improved may push TSH even higher

Ferritin

If you don’t get far improving with liquid iron look at Three Arrows…….not sure if it’s capsules or tablets……. FallingInReverse will know

[Helly75 in reply to SlowDragon]

Thank you , TPO was tested in December thanks to you lot on this site giving me the knowledge to ask for it or they wouldn't have done it , they didn't contact me with any results & it's never mentioned in any letters but a gp checked & said it was over 600 & I definitely have hashimotos, still feeling really rubbish despite improving tft. Spoke to gp last week ,she wouldn't do T3 or repeat tpo antibody but I expected that & expected to get a few bloods done privately, funny you mention about bringing a male, I always go alone & am realising that's a problem, shouldn't be but it is . Thank you

[SlowDragon Ambassador in reply to Helly75]

TPO was tested in December thanks to you lot on this site giving me the knowledge to ask for it or they wouldn't have done it , they didn't contact me with any results & it's never mentioned in any letters but a gp checked & said it was over 600 & I definitely have hashimotos,

Appalling treatment.

Has GP done coeliac blood test as per NICE guidelines

funny you mention about bringing a male, I always go alone & am realising that's a problem, shouldn't be but it is .

Repeatedly members have found that taking a witness along, especially if male, gets you better result.

[Helly75 in reply to SlowDragon]

It's a bit of a disaster, cardiology weren't interested in the hashimotos connection either or why I've had repeated episodes of myocarditis, they blamed heart rate & rhythm issues on low thyroid but still happening with improvement in tft . Tpo was done in a&e because I keep becoming so unwell I get sent there at this point once a month . Celiac wasn't done either , is it any wonder I feel very unsafe with my care & have turned into a wreck

[SlowDragon Ambassador in reply to Helly75]

Your thyroid levels are a long way from being normal

Low vitamin levels are likely reducing TSH

While still eating high gluten diet ask GP for coeliac blood test first as per NICE Guidelines

nice.org.uk/guidance/ng20/c...

Or buy a test online, about £20

Assuming test is negative you can immediately go on strictly gluten free diet 

(If test is positive you will need to remain on high gluten diet until endoscopy, maximum 6 weeks wait officially) 

Myocarditis and autoimmune hypo

academic.oup.com/ehjcr/arti...

[Helly75 in reply to SlowDragon]

I will just buy myself any tests in future I think, can't be doing with the stress of being told no all the time & made to feel like a nuisance