Well I never expected that , Endo appointment Thursday at 5 pm

[Polo22]

So I am in Liverpool, I have asked 4 times over the last 3 or 4 years for a referral nand refused each time. Following on from Sneaky GP saga, GP lying that I consented to reduction in meds in November. I asked for her entry in my notes to be removed as it was incorrect and it has not been. They refuse to reintroduce my original dose of Levo, even after 2 blood tests Feb and May showing my FT4 dropping but TSH remaining at 0.01, (self medicate with T3 which I have been open and honest about). I am struggling,mood is low, anxiety at times unbearable, Think a bit of weight has gone back on, even though I am eating healthier but appetite is rubbish. Fatigued and forgetful and brain foggy.

Now the thing is I checked on TUK's friendly Endo list and had hoped to get a named one from the list, I did not get the one I had hoped for. I won't put the name in post, but I wondered if there is a way to check out this Endo and if others have any experience of this Endo. This person does both private and NHS it appears, but as per the first thing it says is Diabetes, 😟. Could anyone help with info, Private messages.

I only got this referral as Sneaky GP threatened me with being referred and wasn't happy when I said yes please I have been refused several times 😦

[helvella Administrator]

Is there any possibility of getting a test done before the appointment so you have up to date results to discuss?

If so, think when to take your medicines!

[Polo22 in reply to helvella]

I had the usual TSH, FT4 , Lipids, renal profile, Liver function, B12/Folate HbA1c all done via GP on 30th May. Then had BH Thyroid Gold done on 3rd June. So hopefully that should do, I am wondering what to do if they want to do bloods, it will be 5.30 to 6 pm. Should I miss Thursdays dose until I get home, or will the results I have do.

[helvella Administrator in reply to Polo22]

Or say you need to get home and do it the next day?

I think the important thing is it is in your mind and you can decide how to handle whatever situation arises.

[Beads in reply to Polo22]

If it’s anything like our local hospital, they won’t take blood there and then in the clinic, they’ll send you to the phlebotomy unit, which at 5:30-6 may or may not be open. In which case you do as Helvella said and come back the next day.

Can anyone else say whether they take blood in the Endo clinic or phlebotomy at their local?

[birkie in reply to Beads]

I was at Liverpool hospital last June seeing a surgeon who does thyroidectomy and parathyroidectomy surgery, she sent me to phlebotomy unit to get them done they were fast and she rang me the next day with the results 👍

[jimh111]

You can name the endo and ask for comments by private message. Best to put it in a separate post with the name in the title.Under the Data Protection Act you can ask them to erase incorrect data. I don't know if this applies to medical records but assume it does. I planned to do this with the endo I've complained about but held off as I may need it as evidence.

[Polo22 in reply to jimh111]

I put it in writing to Surgery, addressed to manager and Data Protection Officer , stating it was incorrect entry, both disinformation and misinformation and under GDPR I wanted it removed. Their response was we'll ask her when she's back next week what she wants to do. I am compiling a long and interesting list of complaints to fire at them

[Pawsedagain]

I hope you have better luck than I do. My GP practice don't even reply /respond to my complaints regarding incorrect diagnoses dates for both my hypothyroidism and another condition.

[Polo22 in reply to Pawsedagain]

unfortunately not, no effective communication at all, but when I have some more time critical issues dealt with they will be back in the spotlight, and I will make it my raison d'etre to force them provide the care we deserve

[GreekHolidays]

Hi,

I'm from the wirral and Wirral Endo are terrible and I eventually got a referral to Liverpool - Life saver - Life changer.

The first question they asked was 'how are you feeling' at which I burst into tears and let the whole sorry story out!

I've been under several endos during the last 10 years and they all seem to follow the same protocol.

An area thay always ask about and seem most interested in is bowel movemeny. I suggest you strongly say that you are constipated.

Are you on T3 or is this what you are hoping for?

I stop T3 2 days before any blood test, it plays hell with me but it is just playing the game so that I have some slight T4 in my system. It really is up to you but remember if they ask that 'lovely ' question then you can lay out how you are feeling.......

[Polo22 in reply to GreekHolidays]

I am hoping for that sort of experience, if they ask e how I feel will probably have the same effect 😭. Funnily, or not maybe 💩, used to be a once a dayer, then for years might only be once twice a week. Then with supplementing, sourcing own T3 and def magnesium back to once a day. Since Sneaky Gp reduced dose have had some evil constipation at times, too early in the day , too graphic . Think the only thing that is helping at the moment is some DMARD meds started few weeks ago and ADHD meds otherwise I'd be about ready to explode. Currently my HbA1c has increased to 66, it increased to 50/54 following starting T3, then in November when Sneaky GP reduced my Levo has shot up despite no change in diet except maybe trying to be more careful of carb intake.

[GreekHolidays in reply to Polo22]

Go prepared but not too knowledgeable is my advice.

I worked through a list of symptoms by describing a bad day to them without saying ...I have this symptom...

I,like you, knew that T3 worked as I used to buy from abroad, but that is not available now.

[Judithdalston in reply to Polo22]

I found T3 raised my BG; had tried high dose T3 only( as Dr Lowe’s fibromyalgia protocol) but as a diabetic ( type 3c) didn’t like BG that high so reversed back to T4/T3 combo on 100 levo, 15-20 mcg T3 daily ( am experimenting currently to see if TSH will actually shift up from very suppressed, out of curiosity, as non endos getting knickers in a twist!). BG /HbA1c fine at that.

[1tuppence]

Have you considered typing the name of the endo into Google? I've just tested this with the endo I see privately, tho he does NHS work as well. He comes up with Diabetes first as well..... and I see him for thyroid. He too was on the TUK list.