Endo Appointment

[PrincessAnnie]

Well today was the day,where to start😤

My appointment was for 9 o’clock and a nurse turned up at 8.50 asking if he was in yet and the receptionist said no,I knew it wasn’t going to go well from there!

9.20 I get called by a young doctor and taken to a room,explained that he was one of the doctors that works alongside him😤basically I felt like I was getting a physical and mental health assessment,had me up on the bed checking my joints,sounding my back,by this point I’m like what the hell is going on🤷‍♀️

When we started talking TSH,T4 and T3 it was clear he didn’t have a clue as I was basically telling him,at this point he said he thought it best to go and get him to which I replied,is he even in yet?He said,he should be🤦‍♀️I said well I am here to see him and I’m getting anxious now!

A good 10 minutes later in he strolls,how are you?🤷‍♀️Terrible,he basically couldn’t answer any of my questions in regards to the antibodies,no surprise there,and kept on saying it’s not as black and white as it seems😤

In regards to the private tests he said,there not really reliable to which I replied there an nhs accredited lab!

I asked him why I wasn’t given options when I was first diagnosed with an over active thyroid and he said he would’ve gave me three options,I replied you didn’t,you told me that radio iodine was the best form of treatment,he replied which it is,I replied but you never gave me options,he blatantly lied!

From there it went downhill by me telling him he was unprofessional,I came to see him and he puts me in with an under study to which he replied,that’s how they learn,I said well you should’ve came and explained that to me and seen if I was ok with it!No reply from him,he then went on to say he thought I was rude and that it was probably best I seen someone else to which I replied that’s absolutely fine with me!Theres a two year waiting list so you can either wait or stick with me and I’ll give you T3😁I think you can guess what I chose🙏

I told him that I don’t think I’ve ever witnessed a more unprofessional act from a medical professional in all my life,imagine putting me in with an under study🤷‍♀️

Anyway,I’ve got the T3,he wanted to start me on 10mg in the morning and 10mg at night and increase levothyroxine to 100mg a day,I said I would start on 5mg a day and build it up,he was ok with that,I’ve to have bloods done again in 6 months and he will make a not that the T3 has to be checked,I said I’m more than happy to check my own bloods,face was a picture!

He’ll see me again in a year🤦‍♀️I’m not bothered though as I got what I went for,albeit after having a melt down😤

I’d like to thank everyone on this forum for giving me the knowledge and confidence to fight for myself,I’m sitting here feeling rather proud of myself right now,no one wants to be rude to anyone but as I told him,I’m at the end of my tether now!You're all amazing human beings and I can’t thank you all enough❤️

[Buddy195 Administrator]

Hurray for sticking it out getting the medication you need. However, I’m dreadfully sorry about the treatment you received PrincessAnnie. There is no excuse for unprofessional conduct!

[PrincessAnnie in reply to Buddy195]

I’m still flabbergasted🤦‍♀️

[SeasideSusie Remembering]

👏👏👏

There's a part of me that's thinking I'd have loved to have been a fly on the wall during your consultation 🤣

Can you imagine the conversation after you left:

"I hope we don't get any more like her today!" 😂

Well done. I hope you do well on T3.

[PrincessAnnie in reply to SeasideSusie]

Thank you so much❤️Honestly I can just imagine🤣🤣I’m going to call the doctors in a bit and ask to be sent a copy of his correspondence to him in regards to my consultation.

[Sparklingsunshine in reply to PrincessAnnie]

I shall laugh if he describes you as a "pleasant" lady lol.

[DippyDame]

Well done you!

Standing up to the nonsense they throw at us is the only way to make a difference!

I think his patient spoiled his day for a change!

Be well.

[PrincessAnnie in reply to DippyDame]

Thank you so much❤️I wasn’t being fobbed off any longer!

[RedSonja]

He said,there not really reliable

Yeah, I went through a lot of expense doing private tests and forwarding them to my GP and still the results weren't accepted because of a disbelief in the reliability of private laboratories, NHS or otherwise. The trigger word seems to be 'Private'. But then it's weird, because when the part-time private/NHS consultant orders private tests and sends it to the nhs GP it's no problem🤦🏾‍♀️

,he then went on to say he thought I was rude

Translation: You were assertive and as a female patient that is very unbecoming.

I'd take it as a compliment, perhaps him being late actually helped get your fire going😄

You've encouraged me to be more bolshy, I have had some truly terrible consultants!

Good for you standing up for yourself!

[marigold22 in reply to RedSonja]

Being bolshy has been the only way I got what I needed. Including handing the endo a printed copy of the Hippocratic Oath. She was speechless

[PrincessAnnie in reply to RedSonja]

Oh it definitely did,I’ve seen him a few times so I’m more than aware how he operates,I don’t think he realises that the nurses speak about him when there’s patients waiting🤦‍♀️There was a young boy who had just turned up after a telephone conversation with him and the nurse said”don’t worry this is what he does all the time”

[SlowDragon Administrator]

So how much levothyroxine are you currently taking …..75mcg and 100mcg on alternate days?

Endocrinologist wants you to increase levothyroxine to 100mcg daily is that correct

Which brand of levothyroxine do you prefer

Always get same brand levothyroxine at each prescription

We always recommend only increasing levothyroxine or adding T3 ….not both at once

Ft4 already quite high in range

Looking at previous posts, you were going to start taking daily vitamin B complex, have you already started that?

Presumably you don’t have prescription yet for T3?

Is it 20mcg tablets or 10mcg tablets

Either way, we only start on 5mcg early morning, assuming that goes ok…….then wait at least 4-7 days before adding 2nd 5mcg late afternoon

[PrincessAnnie in reply to SlowDragon]

Yes I take 75mcg one day and 100mcg the next and yes he’s put it up to 100mcg.I always take the same levothyroxine I’ll repost the picture of the ones I’m on.

The vitamin b complex didn’t agree with me,I have allergies and I was itching like mad with them🤦‍♀️

I handed the letter into my gp today for the prescription so I’ve no clue as to what the tablets are but I ordered a pill cutter today

Medication

[SlowDragon Administrator in reply to PrincessAnnie]

Those are two different brands…..

Mercury Pharma make 25mcg, 50mcg and 100mcg

Accord make 50mcg and 100mcg

Accord boxed as Almus via Boots or Northstar via Lloyds

Which vitamin B complex did you try ?

You might be better on just separate B12 and separate folate….

T3

20mcg tablets - three different brands available

Cost to NHS £63 per 28 tablets

Morningside healthcare

Mercury Pharma

Teva - lactose free

10mcg

Morningside healthcare only £148 for 28 tablets

[PrincessAnnie in reply to SlowDragon]

It was the viabiotics vitamin b complex as that’s the brand of vitamin d I take but there was something in the b complex that wasn’t agreeing with me.Do you think I would be better dropping levo to 75 a day and starting on 5 of the T3 just in the mornings?

[Sparklingsunshine in reply to PrincessAnnie]

B6 in large doses can cause tingling and itching.

[PrincessAnnie in reply to Sparklingsunshine]

I think I tried B6 before and that was the same,that’s why I don’t really like taking anything because if I have a bad reaction it can last for weeks.

[SlowDragon Administrator in reply to PrincessAnnie]

Perhaps stay on current dose levothyroxine

Add T3 slowly.

If Ft4 drops in 2-3 months, you could consider increasing levothyroxine to 100mcg then

[PrincessAnnie in reply to SlowDragon]

I’ll stay on the dose I’m on just now then add 5 of T3 in the mornings for 7 days then add 5 at night,is there a best time to take it at night do you think,is it ok before bed?

[SlowDragon Administrator in reply to PrincessAnnie]

Perhaps initially try adding 2nd dose around 5pm

See how that goes

Then if/when add third dose …..move 5pm dose earlier around 3pm and add third dose early evening…or bedtime

Many people find small dose at bedtime improves sleep

But some people find it keeps them awake

If it keeps you awake, then timing waking, noon and 6pm

If it helps you sleep, waking, 2-3pm and bedtime

If you initially find T3 near bedtime keeps you awake, that doesn’t mean it always will…….retry again in few weeks/months…..things change over time

[PrincessAnnie in reply to SlowDragon]

I usually have dinner around 5/6 is it ok to take that close to food?

[SlowDragon Administrator in reply to PrincessAnnie]

An hour before or after food ideally…..but it’s absorbed pretty quickly

[PrincessAnnie in reply to SlowDragon]

Thank you so much for your valuable advice once again❤️

[Gilbo72 in reply to SlowDragon]

SlowDragon , sorry to jump in here. I have recently been prescribed 20mcg Liothyronine by Mercury Pharma. Do you know the cost of these? I want to make sure mine aren’t taken away again when handed over to GP prescription because of cost… are any any better than the other?

Medicine

[SlowDragon Administrator in reply to Gilbo72]

All three brands of 20mcg are £63 per 28 tablets

[SlowDragon Administrator in reply to Gilbo72]

Personally I prefer Morningside healthcare T3

Blister packed, much longer use by date than MP

[Merlio18 in reply to PrincessAnnie]

Hi just wondering where are you based in the UK and is the GP prescribing you liothyronine?

I am just trying to find out if it is blacklist in all areas still of the country as I had a discussion with my GP today and she is under the impression every area is different and mine won't prescribe even from a consultant I have to go to a hospital and the endo discharged me as I couldn't tolerate the only brand they prescribed ?? Does anyone know what the situation is now as it happened way bk in 2018 but I want the go to refer me again to see another endo as I should never of been discharged

[PrincessAnnie in reply to Merlio18]

I’m in Scotland and it was the endo whose instructed the gp to prescribe it.

[SlowDragon Administrator in reply to Merlio18]

Merlio18

If in England…Which CCG area are you in

58,000 prescriptions in England in last year

Typically that’s 6 prescriptions per person per year

Searchable by CCG area

openprescribing.net/analyse...

[Merlio18 in reply to SlowDragon]

Lancashire - Preston? Ccg is awful even lodged a complaint and they did nothing

Can't see it on the stats, my go isn't helpful just says do your really think you will get your referral accepted again but I should never of been discharged because they should of source the free from brand and the endo said he couldn't bk in 2018 and said there was only one brand the hospital prescribed so discharged me even tho been on it for years until it got blacklisted I could get it from the community pharmacy no problem so that's when I was left with no meds and no one to monitor me

[SlowDragon Administrator in reply to Merlio18]

Not looking likely

Preston CCG - one person on it

openprescribing.net/analyse...

[Merlio18 in reply to SlowDragon]

What does that mean there restricting patients having it as I was originally on it and shouldn't of been taken off it? Do you know if you can go out of area for a referral ? My GP isn't very helpful and I'd you go out of area to an area that is prescribing will it be authorised as been was due to a sensitivity to the brand at the hospital so really they shouldn't of been allowed to discharge me but it was a year or so ago now

[SlowDragon Administrator in reply to Merlio18]

In theory, if an NHS endocrinologist says you have clinical need of T3 you should be prescribed

Finding an NHS endocrinologist who is thyroid specialist and prepared to upset their employer by supporting the patient and saying the patient should be prescribed T3 is tricky

Initial 3 months trial via hospital pharmacy. Then endocrinologist writes to your GP to request they take over care and prescription

Some CCG areas are better than others at agreeing to fund

T3 price falling. Now £63 for 28 x 20mcg tablets

(was £268 when only one supplier )

Email Thyroid U.K. for list of recommended thyroid specialist endocrinologist and doctors who will prescribe T3

NHS or private

[e-mail]

[Merlio18 in reply to SlowDragon]

Thanks for the info I have done all this before as I have already been on it for several years it was because he refused to source the free from brand when they blacklisted it as to why now I have to self source NDT as he even refused a private prescription so can't even get t3 there is a clinical need as I had the gene test but any patient who showed significant improvement on t3 when they blacklisted it weren't bit meant to be taken off it stated in the guidelines but they seem to beable to get away with doing what they want and they don't care about the patients healthMy gp refused to prescribe and the endo refused to go operate when they balcklisted it in 2018 is it blacklisted still in all areas of the UK?

[SlowDragon Administrator in reply to Merlio18]

Private prescription from a different endocrinologist would enable access to Thybon Henning 20mcg tablets

Lactose free

Available from U.K. specialist pharmacies at 50-60p per tablet

[Merlio18 in reply to SlowDragon]

That's interesting it's finding an endo that will accept a new referral now tho and agree to a private prescription as I asked him to do a private for thybon or the other free from brand and he refused so not sure and can't really afford to see a private endo, also doesn't it depend on whether your GP will continue to give you a prescription slip as how do you get it on repeat?

[SlowDragon Administrator in reply to Merlio18]

You get a years worth of prescription from private endocrinologist

GP isn’t involved at all, apart from prescribing levothyroxine

[birkie]

Well done for standing up to him👏 I'm sick of their attitude towards patients and the fact doctors think all endos are well informed and very professional, that's what my gp told me before ending my consultation and asking me to leave the surgery. I questioned my gp about bloodwork done he kept saying your bloods were done in June 2021 I corrected him saying no actually I had them done on Dec 6th 2021 but he wouldn't listen so I produced the printout he wouldn't even look at it to which I pointed at the paper saying just look!! Then he asked me to leave,😠.. I've been trying since the 23rd March to talk to a gp about my last thyroid bloods being very hypo since the endo decrease my meds, and it says on my printout "see gp in 7/10 days.. No gp as contacted me, I called into my surgery on Monday no gp would help me get my medication they put me under a doctor at my hospital she sent a prescription for my thyroid meds to my chemist 🤦‍♀️ my treatment by these unprofessional care givers is laughable, what do they expect us to do? Just sit back and say nothing especially when we're at our wits end.. I'm glad you managed to get the medication you wanted but why do we have to fight for what we need from these people 🤷‍♀️

[PrincessAnnie in reply to birkie]

I’m sorry to hear you’re having a terrible time birkie it really is an awful way to treat people and something must be done about it!I said to my husband this morning that there’s thousands of people out there just like me,do they honestly believe that it’s all just in our heads🤷‍♀️

[SarahJane1471]

👏👏👏👏👏👏👏👏

[APAscot]

Wow! We’ll done you.

[nouvelleespoir]

I'm glad you got what you needed, but I'd still be getting on a waiting list for anyone else.

[PrincessAnnie in reply to nouvelleespoir]

He was supposed to retire last year so I’m assuming he’s stayed to help with the back log.I’m hoping when next year comes he has infact retired👍

[Confused01]

Well done you 👍🏻. Most Consultants are astounded when you stand up to any unprofessional behaviour or their fob off stories (obviously not all of them but more than should be). Some think others are daft .I’ve had to stand up to a few over the years, often counterproductive, though found if I had to see them again they were a great deal better the next time, still lacking knowledge.

I’ve had a

1.Consultant who didn’t even look at the reason I was there..2 minute chat followed by ‘sure it’s fine’. Formal complaint put in after he chose to ignore my objection to this. I was in tears.

2. An Endo who turned up an hour late (had first am appt) 3 times, then sat drinking tea with the nurses with the door open. Obviously the norm.

Same guy called me in when he had his feet up on the desk drinking a can of Coke. He also knocked the can of the desk that splashed me. He laughed.

He told me he is a Diabetic Consultant, told me a load of hormone rubbish to which I corrected him.

NHS Endocrinologist generally get generalised, around 6 weeks hormone specific training and they go on bloods, not symptoms (stupid when hormones vary hour to hour which can smudge up blood tests).

Basically U.K. seriously lacks highly experienced hormone, thyroid, pituitary Endos in most hospitals. Time that changed.

I could name more! Discraceful.

X

[PrincessAnnie in reply to Confused01]

I couldn’t agree with you more.I think the fact that he knew he was in the wrong worked to my advantage in getting the T3.

[Cavapoochonowner]

what a shambles.Glad you got what you wanted in the end.I too have thought that I could do it quicker and better myself(with the help of everyone on here) A shame that it has to end with people paying for tests, private endos and prescriptions and medication.Not everyone has that luxury, and it is a luxury.When our mortgage has been paid off , myself and my husband have already said we will pay into a private health scheme.Such a shame.

[Gilbo72]

I bet deep down who quite enjoyed it! Probably made his day being a bit of a challenge and made him question his godlike existence! Well done

[Confused01 in reply to Gilbo72]

Like to think that from I doubt it….it’s medical school that’s installs attitudes too often, also never admitting missing things, can’t resolve something 🙄. Not all but too many. I’ve met a few fabulous Consultants but many not so (worst…running late for appointments by 2 hours (am) as he rocked up late. When called in he was sitting with his feet up on the desk drinking a can of Coke! Just not good enough to be so unprofessional….his knowledge wasn’t too hot either lol).

[Goldengirl01]

Question! How can a young doctor learn when he hasn’t got a clue to start with and is on his own with a patient. How is that learning.? The patient was more knowledgeable..

[PrincessAnnie in reply to Goldengirl01]

Exactly!He should never have put him in that position,he certainly learned what it’s like to be a thyroid patient and not receiving the proper care during my consultation!

[Hidden]

There's no excuse for th e way you were treated. They didn't seemed to be prepared for tgat.

[PrincessAnnie in reply to Hidden]

Absolutely not and he knows it!

[Hidden in reply to PrincessAnnie]

Sorry you went thru that. Unacceptable.

[Brightness14]

Just to say I have seen much worse all in the UK. A GP missed my detaching retina, twice, resulting in losing the sight in one eye. Another time I was in for an operation on my sinus, and at the six week review afterwards the surgeon asked to look in my ear. He poked in so hard it was sooo painful, now I have lost the hearing in that ear. There are a couple more things, in fact I could now write a short novel , but that's the NHS for you. By the way I now live in France, same day appointments with my GP and T3 costing under 5 euros a box.Sorry that you had trouble you could treat yourself, anyway it's good that you have what you wanted.

[Kimkat]

That’s great news, it’s good to hear that at least one of us is getting what we need 🙂

[FairyfeetX]

I have read it through twice and I'm not sure who was the ruder!

[PrincessAnnie in reply to FairyfeetX]

I’m sorry I don’t understand your comment?