"Low TSH Spooked my GP" follow up

[Naturegirl8]

Many thanks to everyone who has responded to my post about my GP wanting to reduce my Levothyroxine due to below reference limit TSH. I sent some of the references people kindly shared but my GP's response this morning was : "Your current blood tests do indeed indicate over-suppression of TSH" so reinforcing his decision to reduce my dose. He does however offer to share my results " with one of our local endocrine consultants using the Local Advice and Guidance System". SO there's a slim chance I might get a referral to an Endo, in which case could someone please private message me details of a sympathetic, conscious Endo in the Brighton area whom I could ask to be referred to? Thanks again <3

[SlowDragon Administrator]

Brighton is one of the worst areas

Has had until recently Complete blanket refusal to allow any patients T3

See pages 7-9

sussexccgs.nhs.uk/wp-conten...

chmsformulary.nhs.uk/chapte...

Email Thyroid UK for list of recommend thyroid specialist endocrinologists...NHS and Private

[e-mail]

[Naturegirl8 in reply to SlowDragon]

Thanks SlowDragon, I became a pensioner this year and am hoping to move to north Cornwall by autumn so it might be worth my waiting until then before seeking a sympathetic endo...

[kittywatvans in reply to Naturegirl8]

Cornwall is dreadful. I'm hoping to go out of area and not to Devon either. Derriford told me they couldn't see me when I got pregnant, and I should now see an obstetrician with an interest in thyroid. They don't exist so I saw no one.

[Jools21]

I’ve had a dire experience with endocrinologist in Brighton. I have a suppressed TSH and this has been the case for 8years (I’ve been on Levothyroxine for 12 years), all other drs/GP’s had no issue with suppressed TSH, until I moved and registered with new GP. One GP at practice who doesn’t understand thyroid, which was obvious from conversation, despite the fact I still have numerous hypo symptoms, decided to refer to endo. The worst ever decision. I have been messed about dreadfully by Brighton, been given 2 totally opposite view from same team. First one listened and their judgement/diagnosis was ok, gave sensible advice for additional tests to cover themselves, they did recommend adding in T3 if I wished to purchase this myself and gave clear instructions on how to do. The 2nd endo, was dire, attitude during consult was very patronising. Their opinion was the totally opposite for first appt. Ignored the hypo symptoms I still have. I’ve a formal complaint still outstanding since March and still awaiting outcome of their investigation. Through list from thyroid uk i have since had 3 Skype consultations not with an endo but somebody who clearly understands thyroid. They have issued appropriate medications, all private. However from them I now have confirmation of what I thought to be correct. The cost of private consultations and medication is not sustainable for me.

From my experience at Brighton i would not recommend any of their endocrinologist, this view point might possibly change depending on outcome of my complaint, however at moment I have no faith, totally lost of trust in their decision making. If I could turn back the clock I would research throughly first into each endo department in NHS organisations, would review very carefully who might be a dr who listens and treats patients based on symptoms, and doesn’t just go by blood test results.

[Naturegirl8 in reply to Jools21]

oh Jools21 that is not encouraging but good to be forewarned! However the endo who gave you decent advice might be worth seeing? I am a pensioner so definitely cannot afford expensive private meds or specialists, apart from initial consultation I would appreciate you private messaging me their details please. Thanks so much x

[TaraJR]

Naturegirl8 are you on Facebook? ITT Improve Thyroid Treatment group has several people from the Brighton area who have fought their CCGs and drs . They may be able to advise.

[Naturegirl8 in reply to TaraJR]

Thanks TaraJR I have asked to join

[TaraJR in reply to Naturegirl8]

I think you're in!

[Miffie]

I wouldn’t be too hopeful of success getting T3 in Cornwall.The CCG is definitely being very tough these days. Even with blow range fT3 my referral to the top thyroid man in Cornwall was met with an ear,y comment I cannot prescribe due to cost! It isn’t what I wanted so that was ok for me . If you do wait make sure you have a cast iron case to be prescribed as I have come across a number of refusals recently at Royal Cornwall Hospital. You may fare better if th3 new GP refers you to the Derriford in Devon. I saw a really good Diabetes endo from the Deriford some years ago however he knew zero about thyroid.

Good luck

[Naturegirl8 in reply to Miffie]

Thanks for the information Miffie, UK healthcare is more and more a postcode lottery, and tightening up on prescriptions to save money

[kittywatvans in reply to Miffie]

I'm on T3 in Cornwall but they'll go no higher than 20mg.

[Miffie in reply to kittywatvans]

That’s excellent news, I am really pleased you were successful. I think it’s a bit hit and miss depending on the area, my PCN is made up of several surgeries and some have patients receiving prescriptions for T3. There are none at the surgery where I am registered. Historically it was incredibly easy to be prescribed in Cornwall. The change is very recent.

I only wanted the endo to tell my GP my self sourced ndt was all good, and he did so I am happy.

[Naturegirl8]

Here is the response I received from the expert my GP forwarded my appeal for increased Levo dose . Apologies for delayed response but I've just made my house move from Brighton to Hayle near St Ives in Cornwall = a 300 mile journey

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