Endo in Shrop/West Midlands?

[Frumpty]

hello all,

I'm new here, have been reading on thyroid uk for a few years and I'm hoping someone can offer some advice. 

Not wanting to bore everyone silly with my story, I will just say I became hypo around 2009 - spent next two years in a fog, lost eyebrows, skeletal pain, put on 5 stone - whilst being told I had nothing wrong with me.  I was on upper limit of TSH but in normal range and my great GP ignored the tests and put on me levo in 2011. 

Currently on 125 - 150 mcg, although I have been up to 300 at one point.  Although they have made me 'better', they have not made me 'well'...my tsh is all over the place, dose has to be adjusted every few months as I 'slide' into hypo - yet have palpitations on the higher dose.

Saw an endo in 2014, who advised that my feeling ill was basically in my head, and prescribed anti depessants...insulting in the extreme.

My last GP visit in Jan he wanted to prescribe t3 to try and get me sorted, however he isn't allowed to anymore due to new guidelines.  He has referred me to endo, however I am not hopeful they will prescribe.  I want to find out if anyone has had any positive outcomes with a endo in the shropshire area.  I haven't had my appointment yet, so I may be able to 'choose' which one I see.

Keep strong.

Frumps

[Gilly81]

I sometimes think Shropshire is the worst place in the country to have thyroid disease. I have not yet met a doctor here in over 20 years, GP's or consultants who know what they are talking about. Sorry to be so negative but that is my experience. 

[Frumpty in reply to Gilly81]

Thanks for your reply...you're not being negative...it's been my experience as well.  I saw around 7 different GPs in the same practice for years who completely ignored my symptoms and based it on TSH alone.  I was very fortunate the 8th one was sensible...and not only put me on levo but referral to Endo...who was unfortunately diabetic specialist!

It's about to get worse...three Endo's have left the region and no replacements...that's why I still haven't had an appt.  I really hope someone can advise on one...even if not local I will travel to see one who is realistic about treatment. 

[Gilly81]

You seem to be very lucky in your GP. I am in Shrewsbury and so far had little luck with GP's.

[Frumpty in reply to Gilly81]

I'm in Shrewsbury too...if you have been to RSH I sympathise.  It was so frustrating that my GP said 'let's try you with some T3' and then when he went to do the script, found he couldn't...hence him having to send me back to endo.  : /

[Gilly81 in reply to Frumpty]

I agree RSH is a total waste of time. Because I had Graves' and TED I went to a specialist unit for TED and Graves' in Birmingham but once I was 'sorted' operation on eyes, TSH so called 'normal' I was sent back to my GP. I became hypo, which was not recognised and I put on over 5 stones in weight after being skin and bones due to the Graves'. It has been a nightmare for the last 20+ years. Now on NDT since last year I feel better but GP thinks I am dying! No, I was slowly dying when I did what they told me to do!

[Jazzw]

You shouldn't have to resort to buying your own T3 privately but it's an option if you get nowhere with the endo. It's actually far cheaper to buy it from online pharmacies than it is for the NHS to prescribe it. So if the endo won't play ball but you do have a cooperative GP it might be worth asking the GP if he'll monitor you if you take your own privately sourced T3. 

[Frumpty in reply to Jazzw]

Thanks Jazz...I'm seriously getting to that stage.. I'm sure my GP would not be impressed, but I think he'd be supportive...he knows how much I struggle and I've stuck with the Levo, even though I feel dreadful at times and my BP is going through the roof. 

[Gilly81 in reply to Frumpty]

My blood pressure was very high too, it has come right down since I have been on NDT.

[misslissa]

Following, I'm south shropshire so endo's in Shrewsbury will be mine too. This is not positive reading! 

[Frumpty in reply to misslissa]

Sorry it isn't very positive...spoke to the RSH this morning to query why I still have no apt - told they are hoping to have endo clinics running in June.  

Reading other posts on how T3 scripts are being reviewed I don't rate my chances of getting T3 at all. 

Looks like I may have to source NDT myself : /

[Gilly81 in reply to Frumpty]

Would you like to meet up and talk as we are both in Shrewsbury?

[Frumpty in reply to Gilly81]

Hi...sent you a private message

[Gilly81 in reply to misslissa]

It is a nightmare trying to get the help you need in Shropshire, after 20 years I am finally self medicating with NDT, best thing I ever did for my health. 

[Gilly81 in reply to misslissa]

I use to live in Clungunford and Dr Sarah Myhill was my GP. I was not ill then and now she is a private thyroid expert who is so busy it is difficult even to get to see her….

[Frumpty in reply to Gilly81]

that's typical! 

Sometimes feels like all I want is for someone in the medical profession to take me seriously...instead of patting me on the head and telling me to go and do what I'm told.  I'm an intelligent person, who would like to take responsibility for my own health.

[misslissa]

Keep us updated, I am debating NDT as I can't be bothered with the battle! 

[Frumpty in reply to misslissa]

Hi...yes, I know.  I think I will find out where most on here are sourcing...and go that route too. Part of me resents having to do that...I just read on Shropshire CCG that even endo's are not allowed to issue Armour (or any NDT) as it's unsafe...it is ridiculous!  Thousands of people apparently getting better on it, but the opinion (not based on any empirical fact based evidence that I can find) say we can't have it.

It's dangerous when I am a bit hyper...as now...because I feel like taking on the world! : )

[lolajone]

I'm in north Shropshire and would not bother with any endos here based on my experiences over the last 13 years. If you are to be referred to an endo you can choose who you see and it does not have to be in Shropshire. 

[Frumpty in reply to lolajone]

Thanks for your thoughts...I would gladly travel where there is a sympathetic endo...however they seem thin on the ground.  I would take ndt tomorrow but bit nervous of getting good quality.