Query

[Dakie]

Just curious, is being referred to an endocrinologist par for course when diagnosed with an underactive thyroid?, I have struggled with mine for approx 18mths and my GP has never mentioned it.

[helvella Administrator Thyroid UK]

No - hypothyroidism is usually regarded as something a GP can and should manage.

Referral more likely if there are aggravating factors - such as pregnancy, other diseases, or having difficulty in achieving an acceptable TSH. (Not that TSH should be viewed as anything but just another blood test. It doesn't 100% show thyroid status.)

[SlowDragon Administrator]

Unfortunately many GP’s are clueless on how to manage thyroid patients, as you seem to have found out

Hence this is by far the busiest forum on Healthunlocked

There’s almost 2 million people in U.K. on levothyroxine. It’s 2nd or 3rd most prescribed medications, yet GP understanding of thyroid disease is often extremely limited

Vast majority of endocrinologists are diabetes specialists and useless for thyroid

Best way forward initially is to read all guidelines

Push for dose increases in levothyroxine over coming months

Get FULL thyroid and vitamin testing done……ideally via GP….but frequently necessary to test privately

Essential to maintain optimal vitamin levels

If GP won’t increase dose levothyroxine when results and symptoms show you need it ……then may need to go over GP head and see thyroid specialist endocrinologist

[JAmanda]

I’m in kingston and was referred to an Endo quite quickly as I wasn’t feeling any better. Been seeing the Endo ever since.

[tattybogle]

no . it's not usual to to involve an endo for treating hypothyroidism at all. No GP has ever mentioned the word 'endocrinologist', to me in 20 yrs on levo.. (and i've had problems with 'not feeling properly well yet' for all of them)

endo would sometimes be consulted if there were problems optimising treatment ( but not always) .. but your treatment has not been optimised yet ( they left you on 25mcg for far too long , and you only had an increase to 50mcg in December) ....... so the endo wouldn't be able to do anything more than the GP would at the moment .. ie increase your levo dose to level that relieves symptoms , while trying to keep TSH in range.

If you get to a significantly larger than expected dose of Levo (1.6-1.8mcg / kg)... then they may consult endo ,, or more usually ~start looking for 'other causes of symptoms'

Most people on here with primary hypothyroidism have only seen an NHS endo if they pushed very hard for it (after their dose was optimised but they still had problems) ... but it is to soon for you to be doing that .. you need to get your levo dose optmised first ....

Have you had a blood test on 50mcg yet ? what were the results ?

has the GP increase your dose to 75mcg ?

[Dakie in reply to tattybogle]

Will be going on the 22nd for bloods concerning increase in Levo, will post results when I get them

[Miffie]

I saw an endo sone sixty years after being diagnosed. Then only because the GP couldn’t read results and had never seen below range fT4 and fT3. The endo started the conversation with “I can’t prescribe T3 it’s too expensive”. He moved on to say my results from NHS Exeter lab Monitor my Health were untrustworthy because I paid for them. Only NHS tests are true figures not random labs. In addition he added nobody actually needs T3 and T4 doesn’t really matter either. Show outing in front of students. I let him waffle and we ended up agreeing that some people say they benefit from ndt. He did sone blood tests( No fT3 or fT4). Had a follow up consultation interestingly he knew my pituitary was in perfect health as TSH showed normal on test results from NHS Exeter the same lab as I had results from and were untrustworthy. I let it go as I knew no point upsetting his ego and had another goal I wanted to get. It worked he wrote to my GP saying no worries if I sourced and took ndt myself. I was unimpressed.

[Tlflom]

The endocrinologist it the correct specialist for anything hormonal. Thyroid is totally hormone driven. Secondary causes of osteoperosis is also there purview of that specialty.

The fact that your primary did not refer you to one is VERY concerning. Best advice; get a new primary and see an endo, asap!

[helvella Administrator Thyroid UK in reply to Tlflom]

That is not always easy in the UK system.

Even if you get an appointment with an endocrinologist, the time to wait for that appointment is likely to be far too long to be acceptable. Hence you are likely to need treatment from the GP.