My first Endo appointment

Right.

This is what has come back from my first Endo appointment.

- She has said I have Hashimoto's.

- She believes I could have Addison's Disease due to me losing weight despite eating normally and the presence of dark marks on my skin. My weight is now 48.6kg or 7 stone 9 pounds from 50kg or 7 stone 12 pounds.

She did a lying down/standing blood pressure test and that was fine, but she remarked I have low blood pressure with the diastolic number higher than the one lying down.

So she would like to do a short syacthen test within the next week or so. She did a urine test to check adrenals also.

- She suspects Coeliac and says the Coeliac autoimmune profile is not 100% accurate. The absolute gold standard is an endoscopy or bowel biopsy. I did chicken out of an endoscopy however and settled for another blood test.

- Thyroid function tests done last week from my GP have come back normal - but I feel awful!! I did request a printout of these but even though they printed the latest ones it did not include the thyroid function test done last week. Don't know why even though I asked for them.

- I have had another blood test done to check for Rheumatoid Factor but I have no red, hot, aching joints. Nan has "wear and tear" but her GP has not said it's osteo/rheumatoid arthritis. She is 72, what else could it be?

- I had a missed message from the hospital saying my appointment was cancelled. This message was left at 2:20 this afternoon but my appointment was at 3:30. I was on my way to the appointment when this message was left and when I went to the department's desk the receptionist said everything checked out fine and I could wait to be seen. What was that all about?

- My next appointment will be at Southmead so she has transferred me there and this will be within the next 3 months. Not sure if that's the normal waiting time but there it is.

Jo xxx

23 Replies

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  • Well, I would say that was a very successful appointment and it will be interesting to find out the solution for you. At least you seem to have had a very thorough examination and when she gets the results of the tests she has requested you will have a diagnosis. I think 3 months is usual wait while tests are collated.

  • Thanks Shaws. Yes, it was very successful. Jo xxx

  • Jo who did you see? Was it a Dr A? I see Dr A at Spire but she has nhs clinics at the other Bristol hospitals.

    I'm going to Southmead in the next few weeks but to the Endo/Surgical team.

  • Hi Hypohen, I saw a Dr C who works between Southmead and Frenchay. I don't know if she works at Spire but she also saw the daughter of someone on here. It was meant to be a Dr J but I had Dr C instead,

    Jo xxx

  • Hi Jo,

    Glad it went well. Don't worry about TFT being normal. That's a sneaky Hashi's trait. Endo sounds very on the ball, unlike the two I see.

    Hopefully the tests will determine a treatment plan to make you feel well soon.

  • Hi Clutter, thanks for your reply.

    Yes it went very well. I don't know what I was getting so worked up about!! I've heard very good things about this Endo and I didn't expect her to give me a physical examination! So now I'm anxiously waiting for the confirmation for the ACTH test to come through - hopefully the letter won't be too far away from now if they're planning on doing this next week or so.

    One thing that did confuse me was that she arranged a urine test to check my adrenals. She said this wasn't gold standard diagnosis so she wouldn't go ahead and cancel the ACTH test if the urine test was negative, surely? Just a thought.

    Jo xxx

  • Very unlikely. Stop worrying :)

  • Ok. I guess it's the fear of the unknown.

  • hi there jo , glad that you seem to have found a decent endo --- anxiety and stress will only impact on your health --- just keep up the good work [ have an extra glass as a reward to yourself ] .....alan xx

  • Hi Alan, thanks for your reply.

    I might go and have an extra glass to reward myself! Thanks for the tip. I'll use up the last of the Bailey's I think ;)

    Jo xxx

  • Bailey's curdles if you dont finish the bottle ;)

  • now that's a good reason/excuse that's plausible ....just enjoy it !!!

  • Haha, there wasn't much left but I finished it off anyway! And I enjoyed it! ;)

  • don't forget the shops are open 2morrow for more supplies .....alan x

  • Hmm, I'll bear that in mind. I'll be out tomorrow too. ;) Jo xxx

  • Would make me want to go back to the GP's and stick these results under the first idiot/arrogant doctors nose. If it was up to him you would still be suffering and maybe a letter to the practise manager thanking her for her efforts, with a short description of what they have found (just to rub it in) would be in order PLUS a p.p. to the idiot doctor. He might think twice the next time a thyroid patient is sitting in front of him telling him she doesn't feel well, actually listen to what she is saying, and more importantly do something about it.

    Moggie x

  • we can only but hope !!!! .....

  • But doesn't it make you mad that these people have your life in their hands, which is why I think it's important to point out to them when they have done wrong, if not for your satisfaction but for the sake of the next poor thyroid patient.

    Moggie x

  • Hi Moggie!!

    I'm seeing a doctor (not my usual one) today to ask them to sign me off. So I'm not expecting an easy ride with him. Would it be worth suggesting to him to go through my doctor who did all this for me to confirm everything?

    I might get on to sending a letter to practice manager and p.p. to the idiot doctor - thanks for the tip. :)

    Thanks

    Jo xxx

  • He will have all your notes on screen, so shouldn't need the other GP's input and he may even have received a letter from the hosp by now. You can always fill him in on what tests have been ordered by the endo if you feel he needs them.

    He cannot refuse to sign you off if you are feeling unwell. Don't ask directly to be signed off but say you cannot cope with work at the moment due to feeling exhausted all the time.

    Moggie x

  • Ok Moggie, thanks.

    Jo xxx

  • p.s. It would be a very nice touch to send a letter of thanks to the practise manager for all her efforts as without her response to your letter you wouldn't be in the position you are in now - which is well on the way to finding your answers and getting your health back.

  • Yes, absolutely. Thanks for the tip!!

    Jo xxx

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