Is seeing an endo good or bad ???: I have hi... - Thyroid UK

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Is seeing an endo good or bad ???

Spotydave profile image
13 Replies

I have hi antibodies and now on 75 mcg levo ,low normal range b12 and low normal range vit d ... which i did with medicheck

I ask lots of questions and said i think i have hashimotos and i ask for a b12 anemia test ..which i think the gp doesnt seem to know ..so hes now said he will refure me to the endo

So my question Is !!!! the endo a good thing? Is he liable to help or hinder ???? Cheers everyone

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Spotydave
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13 Replies
G2G2 profile image
G2G2

My experiences with endos haven't been good. Holding out hope for you that an endo helps you.

Spotydave profile image
Spotydave in reply toG2G2

Hi thanjs for your reply ....Thats what worries me i read so many stories and often not good.. and what can they actually do that will help me...?? I guess they can scan the thyroid etc but can they give me different meds to help ??

G2G2 profile image
G2G2 in reply toSpotydave

Worth a shot to see what an endo can do for you. No doubt you have Hashi's with high antibodies. Sometimes an endo will give different meds or a different dose. In addition to B12, Vit D, folate & ferritin should be tested. Kudos for asking lots of questions. Write them down to ask the new doc along with your symptoms. If your labs are recent, bring them with you.

Spotydave profile image
Spotydave in reply toG2G2

Yep sounds good... I will gather my file and info.. i will start if vit d and i may try and.write a letter to my go to see if can test me for b12 anemia b fore i get refured.. no doubt the refure will take weeks anyway....thanks g2g2

MissGrace profile image
MissGrace in reply toSpotydave

It really depends I you get a good or bad endo. You might be one of the lucky one who gets an endo who actually has the knowledge and understanding to help. And if they are cr*p, you haven’t lost anything. You can just ignore the rubbish they spout or post it on here so we can have a laugh, then carry on as before. I would advise getting yourself really well prepared - taking studies, blood results etc. make sure you have at your fingertips knowledge about the issues of dosing by TSH, (particularly if you have hashis), why T3 testing is crucial etc. Take a list of notes and questions. My endo likes the fact I understand my condition and read up on it. He encourages me to ask questions. Some, however, may hate the fact you are more knowledgeable than them! It’s the luck of the draw. Worth the gamble. Good luck.

Spotydave profile image
Spotydave in reply toMissGrace

Hi there thanks for your message grace .thats a really good point..and i think yr right. I was a bit worried that they might change my meds make me feel crap and the gp saying he cant do anything about it now the endo is running things.. i dont knowto much about t3 . Im still catching up on tsh t4 antibodies vit d b12 and so on. But i will get there..

G2G2 profile image
G2G2 in reply toSpotydave

If you take B12, the methyl sublingual form is the best.

SlowDragon profile image
SlowDragonAdministrator

You won't know if you need T3 ( this now has to be initially prescribed by endo) until your Levothyroxine dose has been increased slowly in 25mcg steps over next few months/year, to bring TSH down to around one and FT4 towards top of range and FT3 at least half way in range. Plus getting vitamins optimal

It's a slow steady climb up.

May be next spring /summer you will have more idea

Most patients eventually need somewhere between 100mcg and 200mcg Levothyroxine

If you do need an endocrinologist they need to be chosen with great care!

Spotydave profile image
Spotydave in reply toSlowDragon

Hi slow dragon.. so ifmy gp sends me to a crap endo what damage can happen as hes said hes going to send me to one

SlowDragon profile image
SlowDragonAdministrator in reply toSpotydave

They can be absolutely rubbish...eg saying don't even need Levothyroxine

Don't expect them to consider vitamin levels or to be interested in low B12/folate (that's a different department!)

Or don't be surprised that only consider anything other than confirmed coeliac disease as reason to try strictly gluten free diet

But ......you might get a good one who might be well informed

Roughly where in the UK are you?

Why not get the list of recommended thyroid specialists from Thyroid UK first. Then request referral to one on the list

Email Dionne after Jan 3rd

tukadmin@thyroiduk.org

Spotydave profile image
Spotydave in reply toSlowDragon

I didnt kniw theres a list.... Im in dymchurch kent so im close to Folkestone kent...we have william harvey in Ashford....royal Victoria in Folkestone and canterbury hospital

SlowDragon profile image
SlowDragonAdministrator in reply toSpotydave

If you get the list from Dionne after Jan 3rd

Then you can ask on here for other people's experiences about any doctor (good or bad) you wish to see or have been given referral to

But any specific information about a specific doctor must be by private messages only

Spotydave profile image
Spotydave in reply toSlowDragon

Thats brilliant i will email her thanks for that slow dragon.... Hopefully then i can use ine ofthe recommended ones local to me

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