Endo appointment in Liverpool ❤️

[birkie]

Hi everyone 💗

Well I saw a lovely endocrinologist in Liverpool yesterday , they actually do exist 😂

She as agreed with the parathyroid surgeon I need the pet chlorine scan and is organising that, she also said if nothing shows up she will look in to a fine needle aspration👍.

We did discuss the probability of the 7mm nodule being either just sitting on the laryngeal nerve or actually buried in it, if the latter is the case I would unfortunately not be able to be operated on as its to dangerous 😢

Had a full set of parathyroid bloods, calcium, vit D, liver, urine done to👍

I stayed over at my sons who just lives a stone's throw away from carslile train station, how I made it I'll never know as the night before I started with a bad pain in my left flank, felt like the beginning of a kidney infection or possibly passing another stone😩.

I felt sick to my stomach the whole day and had hot and cold chills with server back pain 🤦‍♂️ honestly could have done without it🤦‍♂️ because Trully I was in no mood to argue with the endo.. Thankfully that never happened 🙌.

But when I got back home soaking wet with sweat, shaking, I immediately tested my urine.. My protein is way off, my bilirubin is also way off, as is my PH😩 no sign of blood tho (wonder if it will show up on the urine sample I gave yesterday 🤔) 👍still the same this morning, my temp was 36.8..so that's not over the 38🤒 and is 36.5 this morning 🤒 still feel like💩 but using paracetamol for back pain, hot feeling, I've woke really hot, sweaty, shaky, with bad back pain reached for the paracetamol, took them😬 then 5 mins later my alarm goes off for my 20mg T3 meds🤦‍♂️...anyway that was probably the best appointment with an endo I've ever had👍

[Hedgeree]

Hi birkie,

That sounds like you're making progress! 😊 Great to know that there are good endos out there.

Mine wasn't good...my NHS endo cancelled my appointment a few days before my thyroid surgery and still trying to get another appointment with them.

[birkie in reply to Hedgeree]

Hi Hedgeree❤️

Well firstly that cancellation must have been a real blow for you😢 building yourself up for any kind of surgery is nerve wracking, what these specialists fail to understand is we as patients are both geared up for these appointments, and we prepare ourselves with notes and questions, to be let down at the last minute is truly heartbreaking 😢

In my appointment with the endo who after seeing my thyroid uptake scan did indeed realise I needed a thyroidectomy as there was no saving my thyroid, he skirted around the subject of thyroidectomy by saying "I see you've had several surgerys before, hysterectomy, knee surgery" I butted in by saying "are you saying I need my thyroid removed"

"yes unfortunately you do" I said "OK let's get on with it then" 😄 he was taken aback by my attitude asking "was I not bother about such a big procedure" I just responded saying "does my thyroid need to come out? is it poisoning my system? "... "Yes" he just went on to say that was the easiest consultation he'd done, as normal he as to reassure the patient that everything will be fine, you will wake up after the procedure and be fine, 😄 I told him if he had the relivent instruments I'd lay down on the flood to have it removed now!!! as I'm so ill, graves thyrotoxicosis is not nice😢 he did actually laugh, but that said its still something we build ourselves up for, some like myself can go in with the attitude I had, some are terrified so to postpone, cancel the procedure put more pressure on the patient 🤦‍♂️ I hope you get that appointment soon, good luck🍀🍀🍀

[Hedgeree in reply to birkie]

Yes it was terrible. It was cancelled without a proper explanation. I was told not enough staff. It was also a phone appointment so surely they could have squeezed me in.

I was in a bit of a state and I had questions for the endo and very nearly didn't go through with my thyroid surgery.

[Sandiij in reply to birkie]

70 years ago they wouldn't have told the patient what they were going to do. My grandma had a goitre and they didn't tell her they were going to "cut her throat" she was furious with my mother when she woke up who had been told.

[birkie in reply to Sandiij]

I'm 61 and they didn't tell me about certain things I was having done, like bloods, they took them said I needed them, but never said why, and when they came back it was normal nothing more🤷‍♀️ like my first op camera through the bellybutton was told nothing, just went in had, it told everything was OK.And I just think we expected this, we weren't really told to ask questions, just trust in The gp or specialist, but as time as gone on and I started having health issues through sheer annoyance (not getting answers from the gps or specialist's I started to ask questions, maby in the beginning the wrong ones because I was wet behind the ears.

But after my thyroid journey which took a full 12 Months to Diagnose by gp😠 I now ask every question I can, I've found some don't mind mainly the younger doctors /specialists but the gps who are of a certain age really don't warm to it, my gp who told me for the full 12 months getting very angry with me, that I definitely did not have a thyroid problem, it is my menupausal state😠 when in fact I had graves disease 🤷‍♀️ I found out through my gp records he had never performed any thyroid function blood tests on me in that year, nor did he do any thyroid blood tests after I was put on anti thyroid drugs from sep 2018, I finally had them done in hospital in thyroid storm on Jan 20th 2019.

So I'm a total nuisance to gps/specialist's because I ask loads of questions 😄 and of course get brilliant info off members on here👍

[helvella]

It is very heartening when members post good experiences (of the endo, if not the rest of your bodily problems).

Just to point out that you seem to have fallen foul of your auto-correct! The scan is most likely 11C-choline PET/CT. Not that it matters unless someone else comes along and gets confused.

[birkie in reply to helvella]

Hi helvella❤️

It's a pet chlorine scan, I've probably spelt it wrong, or I'm just in to much in back pain at the mo🤒

I had a good chat with the endo yesterday, you know it beggers belief what the NHS do, and wast money doing it.

She asked me if I'd had any scans performed in relation to my pth, calcium going overactive, "I said well yes" before I could get the procedure I'd had from my lips she said "don't tell me you had the nuclear scan" I said "yes why" she went on to tell me that particular test would show up an overactive thyroid as the thyroid is a bigger organ than the para in that a normal parathyroid gland is around the sizes of a grain of rice, even if it becomes overactive enlarged some don't ever show up on that scan, and the patient is ultimately discharged from the clinic especially if the blood work bounces in and out of range.

She went on to say it's a total waste of money to do that particular scan on the parathyroid glands it's done because it's cheaper than the pet scan but that it achieves nothing in diagnosis, it would be far better if they just sent the patient for the correct scan in the first place 👍 because ultimately like yourself we are now doing the pet scan eventho you've had the nuclear scan to🤦‍♂️.

She's a real advocate for bucking the trend helvella in that she says it's not all about blood levels it should also be about the symptoms to👍

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Really pleased to hear this.

Sorry to hear about your ‘other’ problem. Hope you feel much better soon