Endocrinology Appt at last - what should I ask?

[Someday_maybe]

Happy Sunday morning!

I have my first appt with Endocrinology on Tuesday - it's been a long wait.

Very quick summary / update :

Thyroid storm in March/April which saw me in A&E several times. Started on Propanalol 40mg three times a day, and Carbimazole currently taking 20mg twice a day. Bloods were positive for Graves and I have a collection of other autoimmune conditions.

Medichecks bloods showed very low vitamins - I've been supplementing B12, multi Bs, Folate, Selenium, Magnesium and Vit D+K2 since about May. I've got another Medichecks test to do this week to see how effective this has been.

I've not had Thyroid bloods done for about 10 weeks now - last were early August which showed a drop in T3/T4 but still over range and the Carbimazole was increased to the 20mg twice a day. Same bloods showed neutrophils really low (1.7, range 2- 7.5) but I was told they only worry if it's below 1. Neutrophils in April were 2.3 (same range) so it had dropped but when I queried it, I was essentially told to be quiet and not worry.

I've no idea therefore what my current bloods are. I asked for bloods about 4 weeks ago (this being the 6 week NICE recommended) but have been ignored so I'm slightly apprehensive about going to Endo on Tuesday without up to date detail.

I have TED and been treated for a corneal ulcer which has now healed/scared. I've got occuloplastics appts in November.

I've had a dental infection in the last 3 weeks, and generally felt pretty unwell. My heart rate is variable despite the Propanalol and the antibiotics for the dental infection have delightfully caused stomach issues. I have a tooth that needs removing but when the dentist tried local anesthetic without adrenaline (as is recommended for active Graves) it lasted less than 30 mins so I've been referred for removal under sedation.

What do I need to get out of Tuesdays appointment? What should I ask and expect?

Is there anything crucial that I haven't mentioned that I should follow up?

Thanks!

[pennyannie]

Hey there :

Just had to read the back posts to remind myself :

How is the goitre -

you were having swallowing difficulties at one point -

do you see yourself staying on the AT drugs or think the goitre needs definitive treatment ?

Is your heart rate now more stable and you feel more ' normal ' in yourself ?

Ophthalmology appears to have been more attentive - how is your eye ?

I can't believe bloods haven't been run in preparation for this first actual face to face endo appointment -

mind you I'm still upset re-reading all your back history.

So apart from the obvious T3/T4 readings we haven't got - how are you doing in yourself ?

I would take the Medichecks results / ranges with you -

as at least this is a complete picture of what is going on -

and something to focus on which includes the under range active B12.

[Someday_maybe in reply to pennyannie]

Hey pennyannie

Thanks for taking the time to read old posts - I really appreciate it!

Goitre hasn't really changed, I don't think. Because it's behind my windpipe rather than in front, I can't really see it so I have to go on how it feels, and I'd say much the same.

I think my preference would be to stay on AT medication.

My heart rate does silly things still - dropping as low as 45, often overnight but sometimes during the day which feels pretty gross! And then othertimes will be up at 140. A few nights ago I had about 3 hrs of really fast palpitations despite having had all usual Propanalol so I ended up taking an additional dose around 1am when it was clearly not going to sort itself out.

My eyes are not too bad at the moment - as long as I don't stop the Selenium. Still light sensitive and they tire easily but definitely better than they were a few months ago.

I think I mostly feel more normal - still some days when definitely not but I guess that's all normal. I've gained weight in the last 8 weeks or so - only about 8lbs but still a gain and I've been super cold which has made me a little concerned about swinging hypo but I have no real evidence.

The dentist asked if I had Ehlers Danlos as I have dilaceration (she only discovered when x-raying before attempting extraction) and recommended I go back to the GP about Lupus or Rheumatoid Arthritis. I had an ANA earlier this year which was clear, but who knows!

I will take the Medichecks results- they are about 6 months old now, and in hindsight I should have repeated them last week, but there we go.

I just hope it's not a complete waste of time given I have no recent bloods.

[pennyannie in reply to Someday_maybe]

It shouldn't be up to the patient to have to get their own blood tests run for a NHS appointment especially when the NHS can turn around and say they don't accept the results of the private blood test companies -

I am truly sorry that your care has been lacking - let's hope at this face to face some trust/confidence is built going forward.

I think you need to also talk about your heart rate still being erratic and varying so much day to day - as this must be very disconcerting to try and live with on a daily basis -

Are you splitting your AT drug - as this might help with heart stability, as Propranolol also slows the conversion of T4 into T3 ?

Yes, if the goitre isn't an issue there is no need to lose the gland -

and staying on the AT drug longer term the safest option -

but it does need regular follow up appointments with T3/T4 blood tests as the dose of the AT drug needs to be adjusted down as your T3 and T4 fall back into range -

Ideally we need to aim to maintain T3 and T4 at around midpoint in the ranges as Hypothyroid land is also in the lower end of the ranges - and it does take time and a certain level of skill to find the best dose of the AT drug to keep you well and ticking over as you go through this phase of ill health.

Some patients are monitored in primary care with their doctor taking instruction from the hospital endo - with others on here further ' down the track ' - are adjusting their AT doses as they see fit through running a private finger prick blood test - as NHS appointments are not forth coming as promised.

I hope you get some answers to your questions - please keep us in the loop:

[pennyannie in reply to pennyannie]

Ehlers Danlos syndrome is associated with RA, Lupus. inflammatory eye disease and autoimmune thyroiditis -

and therefore associated with Graves - and then you have another long list of other AI disease - including the above + PA, vitiligo, diabetes mellitus type 1, Sjogren's, and sadly the list goes on as with AI diseases they tend to hunt in packs.

[Someday_maybe]

Hi pennyannie

Just wanted to share an update with you.

Tuesday's appt with Endocrinology was essentially a complete waste of time. I was in with the consultant for 7 minutes only, and mostly told everything I said was incorrect.

He didn't believe that I'd waited 6 months for an appt - until I showed him the referral from my GP in April

He said I can't possibly have had a thyroid storm in April as I would have been admitted - until I showed him the discharge letter from A&E which clearly says Thyroid Storm but no beds so I'd sat in Majors for about 26 hrs before going home and then going back to SDEC a few days later

He appeared cross that I'd sat in SDEC for 10 hours and no-one had called him to assess/give advice (they did) and that the Endo Nurse had not been made aware I was in SDEC (she was, I messaged her myself at 8am to say that they wouldn't take TRAb bloods as the paperwork wasn't completed so could she sort it which she did, but then didn't ever bother coming across to see me).

He asked why I'd then not followed up with Endo Nurse for support - I explained I had followed up and not gotten any reply - so he decided I must have the wrong phone number. At which point I took my phone out and showed him that I had the correct number and the whole trail of messages sent which have been ignored.

Gah. I pretty much gave up at that point and just let him run through whatever he clearly says to everyone. I particularly enjoyed his comment about the person who was seen before me - had I noticed he also had Graves Disease but his TED was no where near as bad as mine (wtf - how does one 'notice' Graves Disease - I'm not in the habit of staring at other people, and great that his TED is mild at the moment, but that doesn't make me feel any better). The other great comment was 'well, with a TRAb as high as yours was, the likelihood of relapsing is really high so be prepared for that'.

Obviously without recent bloods there was little the consultant could say. He ran through treatment options, said that they will do 18 months on Carbimazole and then wean off to see what happens and if I relapse within a year it would be a definitive treatment, didn't agree that RAI was counter - indicated for TED so would recommend that, stood up to leave and on his way out the door asked if I had any questions, and that he'd see me again in 8 weeks.

Honestly - what a farce. I've had my next appointment through for April next year - so 6 months time. I've spent the last couple of days looking into private Endocrinologists, and deciding on my own treatment plan given that it feels like the NHS is not going to be of any help or support. I'm waiting on results from the bloods taken on Tuesday and will then see if my GP will support a change in meds (if needed), using the NICE guidance. I've already been told that they won't repeat TRAb ever so I will need to pay for that one at some point to see if the level has come down when they want to take me off Carbimazole.

I might be in for a long fight on this all!

[pennyannie]

Hey there - I'm at a loss to say anything constructive or positive about this appointment.

I knew nothing when diagnosed back in 2004 and somehow think maybe I was better placed as I still trusted and believed mainstream medical had my best interests at heart.

How did you get through that appointment without getting upset -

having waited so long and then to be dismissed in such a way -

I'm so sorry and somewhat speechless - though in no doubt this was your true experience.

We knew it wasn't going to come to much as you were not advised to even get a set of current blood tests - was the ophthalmologist yo saw working out of the same hospital ?

I guess your knowledge ' threw him ' and why he resorted to being glib and condescending - and just recited the usual dogma and hospital policy - despite. presumably, knowing better and being up to date with the research.

I doubt your doctor will go against instructions given to him by the hospital consultant.

I believe you can ask for a second opinion - so maybe you need to first find someone you would like to be referred to :

Do you have the Thyroid UK Patient recommended list of thyroid specialists and endocrinologists NHS & Private - if not just email admin @ thyroiduk.org - and let's just see who is on there :

Also - do you realise I'm the only one who will read this message as this post is a few days old and most likely considered answered.

What about popping up a new question/post - just detailing all the above and open up replies to all forum members - as I'm not sure what else to suggest - maybe include whereabouts as to where you are in the country - which may elicit some members to send you a Private Message as we are not allowed to talk / recommend openly any medical professional -

and then your Chat button lights up ( looks like a paper plane ) and sits alongside Alert icon etc - top right on this screen looking at me.

If you want you can just ask for Private Messages - but then the post risks getting shut down to any replies in this open part of the forum - where we can all read and share everything that is being written.

Thinking on - and just in shock and anger as to how you have been treated - and just hope writing this all out has allowed you to get it out of your system a bit :