Glasgow Appointment - follow up

[Hiphypo]

I posted in December about my worries over seeing an expensive private Dr. You all piled in with such great support that I was able to contemplate it quite calmly - so firstly, a big 'Thank you' to you all.

Here is the story of what has happened.

The appointment with Dr S went really well: he had read all the notes sent through by my GP, and was fully up to speed, the 1st Dr in 6 years to be so. That had to be a good sign, agreed? That he wanted to hear about my (long ) list of misery-making symptoms, and paid close attention might not all be due to how much I was paying him. Instead he was nodding and kept saying, 'typical of under-treated hypothyroidism'.

He took a very dim view of the stance taken by the last Endo I saw, and said that he is in breach of Nhs code (?) if he refuses treatment because I am having to go elsewhere for treatment that he has refused...iyswim. He suggested that if this did occur then I should inform the GMC.

I already knew a little bit about heart failure as (just one of the many) consequences of un/undertreated hypothyroid, but never talk about it to the family because it smacks too much of those non-articles in the scare-mongering daily fail, but he was very concerned. My cholesterol is high. He thought I looked very unwell (I felt terrible, and exhausted, and sore), very hypo and this was borne out after he did the (lots of ) checks.

He then outlined several possible ways to go forward - choices! Basically I am very under-treated, so the first job is to get the levels up. I have opted to go for working with what is currently prescribed (T3 20 mcg, T4 100 mcg) and to increase the dosages incrementally and alternately, at intervals of 3 - 4 weeks, so that I can monitor what happens with some degree of clarity. To go any quicker would not be better, in fact I could start a nasty backlash reaction, so patience is key. Seemingly this is how it used to be done, until one went past a comfortable level, when it would be dropped back till the optimum dose was reached. Treating by symptoms, I suppose?

I am to report back with alterations in symptoms and see Dr S again in May, by which time he very much hopes that I will be hugely better. If not, then I can consider adding in NDT or abandoning the T3/T4 and doing a trial of NDT only.

There is real help on offer. I am so glad I have saved up for this - but I am just boiling with anger at the refusal by the Nhs to treat people properly. No, better stop there, or I will go off on a rant! Now I need to cross my fingers that my GP will cooperate...

Thanks for staying with me if you have read this far, your support means so much.

[marram]

Wow. It made ME feel good to see an experience like that. It is truly horrifying that we should have to go private to get decent treatment. How refreshing that he treated you with respect and listened to you.

I wish you all the best possible for your future recovery, I'd be interested to hear how your heart recovers because I have an enlarged heart due to under-treatment. Anyway, I wish you all joy and happiness as you find a degree of health. Wish I could do the same but not possible. But I look and learn and benefit from the experiences that lovely people like you write about. Marie XXX

[shaws]

Thank God we still have some doctors who don't bow down to the guidelines which they know are doing a dis-service to sick people. Why should we be forced to go private to get well by going outside the health service.

It is great to walk into a doctor's surgery and he can tell at a glance that you are ill, instead of the usual GP's remark 'your TSH is in the normal level' so whatever is ailing you isn't down to low thyroid hormone.

Despite being invited every so often to the GMC he still doesn't give in. Where are the doctors who can follow him?

I'm glad your appointment went well - it is money well spent when you return to good health. We should be allowed in the NHS to try alternatives if levothyroxine doesn't do much for us.

Best wishes.

[tavy]

well done you!!! congrats on finding a doctor with a brain!!! they wont refer me here in the Spilsby area. have asked again two weeks ago. I will write now to the practise manager. maybe that will work and I will be lucky. Hope it all works. well done again

[tigger in reply to tavy]

Tavy, you are entitled to be refferred to ANY doctor or consultant under the NHS ANYWHERE in the UK. If you find any that you want to be refferred to you can take their details and TELL them you want a refferal and they have to do it. There is a choose and book service and I'm not sure if you can actually do it yourself, its worth looking up, but your GP has no choice but to reffer you anywhere and to anyone, if he refuses then you can raise a complaint.

best wishes sharon

[nobodysdriving in reply to tigger]

unfortunately the GP does 'not' have to refer you to anyone you ask, contrary to what some people think.... sorry to be the bearer of bad news.

IF your GP accepts the fact that you need to see a specialist and wants to refer you to an NHS doctor you have the right to choose which NHS hospital you are referred to, that is right.

HOWEVER for private referrals, ie: ones you want to see but not 'deemed necessary' (or even NHS but GP does not think it is necessary) by your GP then he/she is not obliged to refer you.

see here:

nhs.uk/chq/pages/892.aspx

(look under 'GP referrals')

[tigger in reply to nobodysdriving]

There is also a bit underneath that says you can basically reffer yourself which I believe is the choose and book service. My last GP told me you are entitled to be reffered anywhere you want to, but yes, I guess if your GP is that ignorant, he will not bother, but he has to give a very good reason not to. As they are just GP's, thats why they reffer, to get a more proffessional opinion. I didnt know you needed a gp refferal to see a private consultant, maybe because I have never seen one i guess.

I can remember going to The London Homeopathic Hospital in Great Ormond Street many years ago and my GP at the time told me homeopathy isnt available on the NHS, what a lie! I phoned the hospital and they told me to go back to my gp and tell her if she didnt reffer me, she was to speak to them direct and they would TELL her to reffer me, she soon reffered me and my husband and our 2 kids

GP's are so crafty, they will use every trick in the book to get out of giving a patient what they are entitiled to. My mum just found out you can get chewing gum on prescription! She is having her bladder removed on Monday, as she has stage 3 cancer and she needs to chew chewing gum to keep the bowel stimulated and was told at the hospital that it can be prescribed!

Anyone would think the cost is coming out of their own pockets, their big fat, loaded with money pockets.

best wishes sharon

[nobodysdriving in reply to tigger]

yes for most private doctors you don't need a referral, however Dr S mentioned in this thread will only see you with a referral either from your GP or another private doctor

[tigger in reply to nobodysdriving]

That doesnt help people if you have to get a gp referral to a private doc,especially if you gp is an idiot!

best wishes sharon

[tavy in reply to tigger]

thank you for this. I will try again although the person below says this is not the case

[hymermad]

Lovely to hear your news. I saw Dr S last October for the first time and felt the same as you, relieved at being listened to! See him again his Thursday. The only downside for me is that my GP will not take any notice of him as he is not an endocrinologist! Wishing you better health real soon.

[glasgowhypo]

Really great to read your story and that you're on a sensible healthy road! Well done for persevering! I also live in Glasgow and have recently been given a T3 / T4 trial by Endo. My GP is keen to terminate this trial after 2 months and return to T4 only. However after reading your post, I am going to try to persuade him to first attempt to use your suggestion to increase the dosages incrementally and alternately. Thanks so much for the information. If you know of any support group in Glasgow I'd also love to hear more. All the best! Jo-Anne

[nobodysdriving]

I am a lucky patient of Dr S

your 'elation' and joy is so familiar as I only met him last year and he was a breath of fresh air to me too

I 'love him to bits', he listened/observed/evaluated/took me seriously and held my hand until I got there which for me it was only 6 months, 6 months under his care and I was 'cured'.

I don't want to give people 'false hopes' as I was lucky to be fixed in such a short space of time and not everyone recovers as quickly, but one thing is true: he does not give up on you and will help you for as long as you want to help yourself and as much as he possibly can.

Then my GP would NOT prescribe Dr S treatment, even though this treatment has 'cured me'

so I found an NHS endocrinologist through recommendation and he has asked my GP to prescribe me the 'exact same treatment' Dr S had me on and the GP 'obliged' (how SAD are these GPs hey???).

So now I have my T3 on the NHS

[waveylines]

Am so glad that you saw Dr S and what you described is just typical of this wonderful doctor. i have been on his books for about 6 years now -and it is only when i saw him that i started to get better. i agree with Shaws we need more Docs like him.

[Hidden in reply to waveylines]

could you please tell me the name and address of Dr S t he sounds great

Anne

[Hiphypo]

Thank you for all your lovely comments, I am so pleased that it has given you some encouragement - it is a very tense time trying to negotiate with all the different layers of Nhs bureaucracy, and uncertainty is a big downer for me. I am drained by all the activity of the last few days, so have been slow to respond to all your kind replies.

@tavvy: wish you the best of luck, please do not give up. Will keep my fingers crossed for you.

@hypermad: I took in as much info as I could about Dr S to show my GP - she is well used to me discussing my latest web research! - and she generally tries to help. She volunteered to copy my test results to him, which she did. I put it to her that he was my last chance and she accepted that without demur.

She did openly admit that she knew that there were patients who she could not properly help any further, and that I was one of them. She also is content that I like my Ths level to be sub-zero, and has no problem with any alterations - so far - in treatment regime.

@glasgow hypo: I found my local group by going to the main Thyroid uk page, I think. Do let me know if you would like to meet up - I can always hop on the bus to Buchannon Street.

@Nobodysdriving: I still don't understand how a GP can not give us what we need. Are they frightened of the auditors? I think T3 does cost a bit - guessing about £40 - £50 a month - and now they have charge of their own budgets, maybe that has something to do with it?

And I have a suspicion that here in Edinburgh there will be no Endocrinologist with the guts to go against the bully-boys. Although, interestingly, I hear that the former head of Endocrinology here has since changed his opinions since retiring. As someone else recently remarked, cynically, 'now he will be in private practice, of course - and on a big fat Nhs pension!' I couldn't possibly comment on that, naturally

I will be following orders to the letter, you can be sure.

Will post progress as and when.

[jessicax]

Who is Dr S? I need help

[dimdims37]

I realise this was from some time ago but am wondering if you are now seeing someone in Glasgow under Endocrine. So sad Dr Skinner passed away, I was just trying to arrange a first appt like many others I'm sure. What an amazing man he was. I have a choice to make (and fast!) about Raigmore, Inverness or Glasgow.

My GP heard Dr Galloway in Glasgow was good but I have no idea.