1st Endo Appointment

Well, disgusted beyond belief with what happened this morning on my first appointment!!

When I received my referral letter from the NHS I had to phone a certain number to make an appointment. When I spoke with a lady at the other end she booked me in and also informed me that I would need to take a snack and urine sample as I would be at the hospital for some time. Okay nice and simple and I thought sensible giving me time, it being my first appointment so time would be needed to go over stuff.

Off I went this morning, armed with wee wee sample, lots of notes and info to discuss with my Endo. Half an hour later the appointment was over and we barely touched on anything, although he did have access to my doctor's records on the computer. I informed him what the lady on the phone had told me and I expected at least a minimum of an hour's appointment. He just shook his head saying he had no idea why I had been informed that and appointments are only half an hour long.

I was fuming, as you can imagine after feeling ill for so long. I got weighed, blood pressure taken and height before sitting in with him. I firstly told him how I had been doing everything wrong for the last 10yrs (taking my Levo with milk and my antidepressant at the same time), and corrected it from member's advice on this Group. Since then (as many of you know) I have just been permanently ill with severe debilitating anxiety/panic/palps etc., which bloods keep confirming I am overmedicating

My bloods have shown I am still overmedicating despite twice lowering my dose by 25mcg!!!! As I obviously wasn't absorbing the full 150mcg I used to be on due to taking with either milk or antidepressant, I may have only actually absorbed the equivalent of 75-80mcg. Since correcting that, my body would have been absorbing better and my body has obviously reacted to receiving a higher dose - if you are still with me? So it would seem that by correcting how I took my Levo 150mcg was in actual fact too higher dose for me.

I have lost around a stone and a half in weight (possibly more) since October and that is relevant to what I found out this morning from my Endo (which was never explained to me by my Doc). He informed me that Levo is dosed according to your weight at 1.6mcg per kilo. I am now 61kg. Calculating that, it would put me at a dose of around 100mcg or even less. We went over the doses I dropped to and compared them to test results. He recommended I try 100mcg but I told him even that made me feel overmedicated and brought back the severe symptoms within a week.

When I mentioned to Clutter the other day about my latest very high T4 of 28.20 (12-22), I missed my Levo for a couple of days last week and then started on 75mcg a few days ago, which seem to be OK for me at the moment. Just worried about going hypo now but would rather have those symptoms than the hyper ones I have been experiencing for so long! If I feel the hypo symptoms coming on I could try taking 75/100 alternate days?

Unfortunately we didn't have time to discuss anything else as I mentioned my T3 dropping with my reductions and he really didn't have the time to discuss that with me. He, as I was going to request anyway, is booking me in for an ultrasound which will probably take around a month (if I am lucky) and then he wants to see me in around 2 months! Two months??????????? I could be friggin dead by then the way things are going!!!

I did manage to get my adrenals into the conversation and he wants to do a fasting test for (cortisol - bone - glucose - liver - antibodies to TPO - urea and electrolytes - vit D - FT3 - FT4 - FSH - Lutenising hormone - prolactin - TSH - full blood count and anti TTG

Unfortunately due to the shortness of time and my trying to explain stuff to him I don't really know whether he is any good (although I did get a good vibe from him that he's pretty much on the game with thyroids). Am a little more confident than I was because when I spoke with the practice manager at my local doc surgery yesterday, she explained she has thyroid problems too and she thought they were brilliant and gave me the names of two particular Endo's whom she rated very highly. So if I get no joy with this one at least I have some names to move to......but cm'on half hour appointment, it's a joke!!!

As regards the cock-up by the damn woman on the end of the phone I am going to leave a complaint on the NHS website. What the hell she is doing misinforming people I don't know!

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10 Replies

  • I think what the lady on the phone was probably saying was that you may be at the hospital for some time in total, not that you would be with the Consultant for that time, that would be my interpretation. It would be very unusual to have an hours appt with the NHS.

    Sounds like your Endo is very reasonable and doing all the right tests, hope it proves useful.

  • Well Jefner, even though your consultation wasn't as long as you thought, you seem to be satisfied with the Endo. So that's a positive and hope he will be open to suggestions when you see him in the future. At least you now have two further names should you need them.

  • Am I being greedy in expecting more than half an hour with him. I mean it was the first appointment. How can any doc gather info in half an hour?

  • I think that's what's usually allocated. Otherwise it would mean they'd only see about 7 patients a day if an hour each time. They also might only have certain days allocated for consultations. Bearing in mind that hypo is an 'easy' disease to treat (just prescribe levo and get TSH in range) despite that being an hallucination for some patients, i.e. levo and get bloods in range and job's done. :)

  • Afraid so, you were lucky to see the Consultant as many first appts will be with a Registrar or junior.

  • I had about 15 mins and most of that was me talking.

  • I think if you read through some of the post on this site you may change your mind, most of us seem to struggle for years trying to get more comprehensive bloods done ( took years for me to get a B12 test ) so for you to find an endo that has requested what is a very good range of bloods on your first visit is nothing short of a miracle! "Disgusted beyond belief"seems a bit harsh. My own endo app was 15 mins long and I have to wait nearly 5 months for the follow up.

  • My advice to people going for their first endo visit is not to expect too much then they won't be disappointed. I mostly came out of my consultations feeling a bit deflated. I don't know what I was expecting but I obviously never got it.

    During my treatment for Graves - over a year - I had about eight appointments, never saw the same person twice and only came out of two consultations feeling really good and one of those two doctors, although he was very nice indeed, refused point blank to test my Vitamin D.

    I think you did well. The guy seems to have listened to you, he has ordered a load of blood tests, you actually saw a consultant rather than a sidekick as I always did and your receptionist is happy with the department and knows of another two good people there as well.

    I wonder if it is standard to tell people to bring a snack - endocrinology covers diabetes clinics too and they won't want them becoming hypo if there is a backlog. I know some of the times I saw my endo I waited for a very long time, it was just packed. I was told to take a sample to my first appointment too and no one ever asked for it.

    I don't think I was ever had a consultation of more than 15 minutes, my bloods were always taken and the results sent to the endo a week advance and as I was obviously coming along quite nicely, I came to the conclusion that time was given to difficult cases / people with greater need. So half an hour was good going - I suppose you would have to go private to get longer than that but even then I don't know if yu would get that long.

  • I think you are being very unrealistic expecting an hours appointment on the NHS. I got 15 minutes and any follow up appointments are 5 minutes. Private appointments with local endos are 30 minutes. I am very impressed that you had 30 mins on the NHS with a sympathetic endo. I hope things work out well for you.

    Good luck

  • Jefner, I don't understand why you are angry and disappointed. The consultation sounds very positive and endo has ordered a comprehensive amount of tests. 2 months for a follow up appointment is quick, many follow ups are 3-6 months.

    Did the bookings clerk specifically tell you your consultation would be 60 minutes or did you assume it would be? I think she was warning you that you might have a long wait for your appointment if previous appointments overrun. I doubt you get 60 mins with a private appointment and 30 mins for NHS sounds generous.

    T4 and T3 will drop when you reduce dose. That's not a bad thing when FT4 over range or FT3 high in range make you feel overmedicated. If, after FT4 has dropped into range, you start to feel hypo you'll need to tweak dose to 75/100 or 100mcg.


    I am not a medical professional and this information is not intended to be a substitute for medical guidance from your own doctor. Please check with your personal physician before applying any of these suggestions.

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