Complaint re treatment

[MajawithaJ]

Who do I complain to about the lack of treatment by my endocrinologist? I am so fed up with chasing blood test results, appointments... I know it’s the way it is and Covid but it’s just appalling.

[waveylines]

To be honest your best bet is ask to see someone else as the complaints process is windy and long but check them out first and name the one you want to see. You are entitled to a second opinion but if you havent even been seen yet this current referral might not count as the first opinion! If its any consolation Ive been on a waiting list for over a year for an op......today they rang me to say Id been re referred as a new patient.......seems Ive been on their list for so long that I had dropped off. She said shed come back to me but as yet nothing. I despair if Im now at the bottom of their list as a consequence.

[MajawithaJ in reply to waveylines]

Gosh so sorry, that is dreadful. I hope you don’t have to wait much longer.

Thanks for your advice, I’ll see what I can do. I had a phone call apt back in September & it was agreed that I have an appointment in 6 months time, Synacthen test & a Day Case for a Dexa scan etc. when I haven’t heard anything by March, I rang them & no one has even made these appointments... all the while I was thinking I was in some kind of queue for an appointment!

It’s so frustrating, to say the least.

[Nelly1]

PALS can help you. Based in most hospitals- patient liaison.

[waveylines in reply to Nelly1]

Thats true Nelly. I used PALS once - she was nice but totally ineffective though. What worked was emailing the CEO -they were on the phone within 24hrs sorting it out. That was pre-pandemic. Tbh there is no point sitting back and waiting for the NHS to sort stuff -I think you have to be on it all the way through........

[Yeswithasmile]

I rang Pals once about a lack of follow up appts and they informed me they couldn’t help me (although very nicely - lovely sympathetic person) and that I needed to contact the department(s) directly. I didn’t. However within a week I had two new appointments for 2 different departments so 🤷‍♀️it maybe worth a call? Good luck!

[MajawithaJ]

Thank you, I’ll try PALS!

[MajawithaJ]

I totally agree with you @Jonathan1956 and unfortunately, there are too many cases like your wife’s. I also have endometriosis & as well as thyroidectomy 3 years ago, I’ve had 3 endometriosis operations recently. This was done privately as I had to give up on my GP who wouldn’t even refer me to a gynaecologist. It turned out I had 3 operations worth of deep infiltrating endometriosis. I’ve used up all my private health insurance on that & can’t use it on seeing a private endocrinologist, until next year, at least.

I totally get that the NHS doctors are inundated and there is a backlog even before Covid but there are consistent failures with basic things, like admin & appointments. I remember worrying prior to my thyroidectomy whether I’d be seen & tested after the op & sadly, those worries were for a reason.

I’m so glad your wife has found a sympathetic & kind doctor, think I need to go on a search for one.

[SlowDragon Administrator in reply to MajawithaJ]

If your TSH and Ft4 are “within range “ NHS endocrinologist unlikely to agree to see you

Obviously just testing TSH and Ft4 is completely inadequate

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

[e-mail]

The aim of levothyroxine is to increase dose upwards in 25mcg steps until TSH is ALWAYS under 2

When adequately treated, TSH will often be well below one.

Most important results are ALWAYS Ft3 followed by Ft4.

When adequately treated Ft4 is usually in top third of range and Ft3 at least 60% through range (regardless of how low TSH is)

Extremely important to have optimal vitamin levels too as this helps reduce symptoms and improve how levothyroxine works

Are you on strictly gluten free diet. If not, getting coeliac blood test done before considering trial on strictly gluten free for 3-6 months

[MajawithaJ in reply to SlowDragon]

Hi @slowdragon, I had a Synacthen test a month ago & had TSH, T3, T4 tested but I’ve been trying to find out the results, with no luck. I’ve had my vit D, b12, ferritin tested with my Gp in the end last year & have been taking supplements but I don’t know what they are now. My T3 has never been more than 30% on 100mcg Levothyroxine since thyroidectomy back in March 2019. And T4 is 80 % normally.

This is what I wanted to discuss with my endocrinologist.

I’m also going through surgical menopause & recently started on HRT. I normally take my levothyroxine meds about 6 am & have been waking up at 5.30 with palpitations. Sorry, long explanations but this why I wanted to see/speak to my endocrinologist but even just getting hold of the results is so difficult.

There was talk of doing the investigations & trying out the combination therapy, by which I think he meant adding T3. I am not sure.

Yes, I’m on strictly gluten & dairy free diet for 3 years now, I had a coeliac & pernicious anaemia tests done & they were negative but I find it helps as I have endometriosis & Graves’ disease.

Thank you for the email for the list of specialist endocrinologists as well, I’m feeling a bit lost at the moment and not dealing very well with medical admin.

[SlowDragon Administrator in reply to MajawithaJ]

Common if on HRT to need dose increase in levothyroxine

How long since you started on HRT

Bloods should be retested 6-8 weeks after any significant change like adding HRT

You are legally entitled to copies of your blood test results and ranges

Were these done at GP surgery or hospital

Was test done as early as possible in morning before eating or drinking anything other than water and last dose levothyroxine 24 hours before test?

Recommend you get FULL thyroid and vitamins tested privately as first step

List of private testing options

thyroiduk.org/getting-a-dia...

Often on offer on Thursdays

Medichecks Thyroid plus antibodies and vitamins

medichecks.com/products/adv...

Thriva Thyroid plus antibodies and vitamins By DIY fingerpick test

thriva.co/tests/thyroid-test

Thriva also offer just vitamin testing

Blue Horizon Thyroid Premium Gold includes antibodies, cortisol and vitamins by DIY fingerprick test

bluehorizonbloodtests.co.uk...

If you can get GP to test vitamins and antibodies then cheapest option for just TSH, FT4 and FT3

£29 (via NHS private service ) and 10% off down to £26.10 if go on thyroid uk for code

thyroiduk.org/getting-a-dia...

monitormyhealth.org.uk/

NHS easy postal kit vitamin D test £29 via

vitamindtest.org.uk

Most NHS endocrinologist are diabetes specialists and useless with complex thyroid issues and very very few are prepared to risk career progression and prescribe T3 (as most CCG pressure medics not to prescribe)

If you are gluten intolerant this indicates you are likely to need T3 prescribed alongside levothyroxine

But first need all four vitamins optimal and levothyroxine dose fine tuned

[MajawithaJ in reply to SlowDragon]

I started the HRT ( Evorel patch + testosterone gel) on the day after my Synacthen test which was a month ago, as they asked me not to be on HRT prior to the test, I had an operation for endometriosis 6 weeks before that and was due to start my Hrt 4 weeks after but the endocrinologist nurse asked me to wait. I had my TSH, T3 and T4 tested then, at the hospital at 9 am but no I didn’t fast prior to that. I also didn’t take my Thyroid meds as I remembered the advice from here.

Thanks for the links for the private tests, I’m going to have to go down that route as I don’t my GP will test my vitamins again, as I had to fight for them last time.

So I guess, I should ask them for repeat thyroid tests as it’s coming up to 6/8 weeks since I’m on HRT, if I can get the appointment, if not will do them privately.

Thanks for the info!

[Batty1 in reply to MajawithaJ]

Oh dear your thyroid-less and had a hysterectomy.... I 💯% feel for you I too had hysterectomy in 2004 and thyroidectomy in 2016 and your in for a real fun hormone ride as both thyroid and lack of female hormones even though your taking hrt can make you feel like everything is crashing down... its a crazy ride and its been my experience Endos and Gps don’t care as long as your thyroid levels are “in range”. Agh!

[MajawithaJ in reply to Batty1]

@batty1 Thank you, sorry to hear you’ve had both done too. Yes, the last few years feel like I’m chasing two types of Endos- endocrinologist & endometriosis specialists! Menopause & hypothyroid symptoms tend to overlap, I feel like I’m being a detective as to work out which one is which. Hrt is starting to help a bit in terms of hot flushes & sleep.

I just wish there was someone who’d look at the whole picture. That definitely isn’t my GP!

[Batty1 in reply to MajawithaJ]

Its been my medical discovery that doctors of all diseases don’t talk to other doctors when they are treating the same patient which really turns into a medical nightmare for the patients... heck I just saw a neurologist and not once did this women access my health record and review to see if she can find a reason for my burning skin problems and in the end she chalked it up to small fiber neuropathy maybe brought on by maybe hormone issues... it’s comical and I was given no solutions so I sleep fully clothed so my skin doesn’t touch .... crazy times!

Have you gained weight since having both hysterectomy and thyroidectomy? I gained weight like its been my job.

[MajawithaJ in reply to Batty1]

That’s dreadful, so sorry. It’s as if all of these issues are disconnected & belonging to different bodies!! Did they test you for autoimmune diseases at all?

Yes, I have gained weight, but with 2 major ops so close together, I put it down to not being to exercise as much as I used to, I try and walk as much as I can. I’m trying not to stress too much about it as I’m still early post op and hrt wise! We will see.

[Batty1 in reply to MajawithaJ]

Im a walking post child for autoimmune problems.

[MajawithaJ in reply to Batty1]

Ah, sorry, silly question!

[Batty1 in reply to MajawithaJ]

No it wasn’t !

[holyshedballs]

PALS is more of a mediation service, they cant properly deal with complaints to achieve a change in policy or reprimand a substandard doctor.

It can labyrinthine, I'm going through the complaints procedure myself. I also deal with complaints about my staff from members of the public. So in my view:

If the Endo hasn't followed proper procedure or has been rude etc

Complain to the management first.

Detail what went wrong and how you want it putting right. Refer to the the GMC's Good Medical Practice and any other guidelines.

Its likely that the management will back the doctor in their first response.

The next step is the Trust. Same thing, detail the original complaint and also where the management have "misunderstood" your complaint and why their response is not satisfactory.

The next step is the Parliamentary and Health Service Ombudsman. Same as above. Be careful about what you complain about though. The Ombudsman will not challenge a clinical decision but will concentrate on policies and procedures. if they do get involved in clinical decisions they will ask another ENDO to comment on the clinical decision.

if you are questioning the doctors competence you can complain to the Medical Professional Tribunal Service mpts-uk.org/

[MajawithaJ in reply to holyshedballs]

@holyshedballs, thank you so much. I kind of expected it would be like that but had no idea where to start. Thank you so much for explaining the system & all the different routes. I think I will start with the management possibly, I think the consistent thing is chasing appointments that have never been made & then when they are made, eventually, they get cancelled.

[serenfach]

Before you do anything else, get your hospital records. Ask for the form, fill it in and send it off - it is free and you are legally entitled to your records. Do this first or stuff will go missing. A hospital overdosed me with contrast medium, and I made a fuss. All records of the scan went missing and the hospital claimed I had not had a scan. They forgot to lose the scan results though...

It is worth doing, even if you dont get the results you want, because someone somewhere will have words with the Endo, and the clinic and tell them to pull their socks up.

[MajawithaJ in reply to serenfach]

Will do, thank you!

[MajawithaJ]

Brilliant, thank you.

[LAHs]

Oh, you struck gold! A doc with a thyroid problem! That is pretty much how I got lucky. It wasn't a doc but a lady in the insurance office of the hospital - with a thyroid problem. She had had plenty of time to "shop around" and get all the advice from the hospital staff and so got the best doc. She happened to see me in great distress when I was desperately trying to find a doc who would treat me intelligently, prescribe the right medication (NDT) and he knew his endocrinology beyond diabetes. I was wandering down the corridor when I passed her open door, she said, "Can I help you?", I tried to remain calm but I started to cry, I was SO desperate... and the rest is history.

[Milkyway88]

Jonathan, would you mind sending me a PM with this doctor’s name please? Thank you.