Happy New Year everyone
I have an appointment in 9 days to see the Endo consultant, from experience of others who have seen one, what will they actually be doing etc, will I need a blood test before I go?
I have been reading articles on here about T3 with mixed messages, I’m trying to learn as much as possible I get the impression it’s not tested etc?
Many thanks
Endocrinologists usually get fT3 tested, they just object to GPs doing it, protecting their territory. It’s logical to get your levels tested a week before the appointment but my experience is the NHS does not do efficiency.
They should take your case history, examine you and ask about your symptoms, when you they started and how they affect your life. It will be pot luck as to whether you see someone who follows these basic rules of medicine. I suggest you be friendly and helpful but be ready to be assertive if they try to fob you off. It’s best to give them a chance as they may be helpful (also only fair to do so) but be prepared for an unhelpful one.
My endos haven't had a problem with my GP carrying out thyroid blood tests. The problem is that the lab the bloods from my CCG go can't / won't test FT3 but the hospital lab will, and blood test results from my GP aren't shared with the hospital so I wold get a print out from my GP and take them along with to my appointment. It's easier for the endo to be able to see all the results, including historical ones, on their system.
The BTA (endocrinologists) and AACS (lab people) came together to say GPs shouldn't do fT3. As a consequence most local hospitals don't do fT3 even if the GP requests it. In my area (NW London) the machine is even programmed to omit fT3 even though the additional test costs 92p. I have to get my GP to put a special request on the form referring to the lead biochemist. This is after I submitted a number of complaints.
It's very frustrating for GPs and patients. I wouldn't suggest a new patient goes to this trouble as they want to get the doctors onside. Could try asking the GP to request TSH, fT3, fT4 with a note that it's for an endocrinologist appointment.
The hospital processing the bloods in my local area hasn't done FT3 for several years but if I take the GP's form (including FT3) to a phlebotomist in a different CCG and processed by a different lab, it will be done. It's that old postcode lottery again. As far as endos are concerned, mine has always complained that they don't see the tests requested by my GP, even when he requested FT3 and the lab carried out the test. It's a fair point.
I would have a list of symptoms either written down or learned by rote. Additionally, print outs of your most recent tests and ranges. They should have them, but because I live on a county border and see the endo in my own county, but not the nearest NHS endo centre, they never do!
Hi. I would agree with jimh111. At my first appt the Endo was straight to the point. Very matter of fact. She did an examination where she felt my neck and thyroid and also of my body in general. She asked questions about what had been going on. I was not ready to hear what she had to say. I was still in shock at being diagnosed with Graves. I never saw her again. To harsh for me with no compassion. The second Endo I saw was lovely and he is my current t Endo. There are 3 endos that I can see at the hospital. I will only see him. He was lovely. He was kind. Compassionate and explained what would happen for the next 18 months. He asked me if I had any questions and he answered them with respect. The first Endo had been smug. I didn’t like that. So I guess what I am saying is they are a mixed bag and go open minded. Take your symptoms and questions written down and take someone else with you because you never hear everything you are told. Try not to be nervous although easier said than done and the forum is here anytime you need it and you will get great support and advice here without judgement.
Thank you, just wondering if I should do the Advanced Thyroid Function Test before my appointment?
If it was me I would get this done. They may or may not be scathing about a private test but the numbers will be there for them to see . Much better than arriving at your appointment and the Endo has no test results to assist diagnosis. This has often been my experience. Make a detailed list of symptoms and try and get previous results from your GP and list these as well.
And prob should add that my experience of various Endo appointments have been very mixed. Some more experienced ones have been pleasant some have been awful. All of them have had quite limited knowledge of up to date thyroid diagnosis and treatment - perhaps this is because they concentrate in diabetes?
Do not be surprised if the greeting nurse gives you a tube for a urine specimen and weighs you. Many clinics primarily deal with diabetes and do this automatically for everyone.
Do not be surprised if you do not see the consultant endocrinologist. You might just get a registrar. Some might be excellent - but not all.
Agree with taking written notes of what you want to say, list of symptoms, etc. (Make sure it is a copy as a good consultant might just ask to put it into your records.)
Take something to occupy yourself while waiting.
Thank you
Don’t lose heart if you see a registrar. I was rather disappointed to find myself speaking to one rather than an endocrinologist a few weeks ago, but he badgered the endocrinologist for T3 on my behalf, which was an unexpected win.
Another thought. Like you, I get anxious about how to get the most out of the limited time we get with our doctors. I used to work in Sales, so I take a little bit of that with me, these days, specifically by having some goals in mind for the meeting and some best / worst outcomes. It is worth thinking about what YOU want from the appointment, what you want to find out, what you want to discuss and then you can ask those questions either at the beginning (when endo asks why you are there - you might state your agenda “I wanted to discuss all my symptoms and find out about the best treatment for me, having read about x and y, and I was hoping we could look at testing a, b and c, so that I can get a clearer picture..”) or if there isn’t the opportunity at the beginning, get your agenda in at end, if it hasn’t been covered. I wish I had taken a more “sales” approach sooner: it is only recently that I realised the things I learned in sales about having a productive meeting apply very much in the doctors office too!
It is not only diabetes clinics that do these checks. My rheumatology clinic does urine/weight/height/BP prior to my consultation, and these tests are routinely done in other departments including haematology, hepatology, renal and cancer clinics, too. Even endocrinology! The urine test is looking for several things, including blood and protein. Diabetic blood sugar will be tested in a hospital situation by a blood glucose test, and possibly a prior hbA1C. Due to the current pandemic, you will find that clinics and waiting times are nothing like those of pre-Covid days, as patients must attend alone, appointments are strictly staggered, and you are not allowed entry much before your appointment is due. The only waiting done is probably in your car prior to the appointment time!!
My experience (of accompanying someone to an NHS endocrinology appointment) was that the urine test was entirely ignored.
This has certainly not been our experience, and the test result has always been included in the post-appointment report. As I hate having to use a public toilet of any sort, I always take a urine sample with me to any hospital appointment I have. It saves all the hassle of trying to produce one in demand, and I have never yet had to take one home with me!
My NHS experience absolutely mirrors what helvella says. I turn up, get weighed, read my magazine, do a few sudokus and see the endo for maybe 2 minutes. The quickest was less than 30 seconds, when he realised he'd put me on the wrong dose of lio initially; the longest was a phone appointment this year which lasted 4 minutes. I always have to chase his secretary for a form to get bloods tested beforehand.I went private once and got a good 40 mins (and lots of excellent coffee). Had recent blood tests to show the endo and had written a summary of my thyroid "story" beforehand (which he had read). It was worth it for a second opinion and to see someone knowledgeable - but sadly he doesn't "do" lio at his NHS practice so I only saw him once
Thank you will have a look
Me too but that would be unfair! Mine was very decent I just didn’t see him soon enough and got a useless understudy initially who wrote in my notes he found me euthyroid - with a TSH of 88 😳 - is that a paradox or even an oxymoron? I was extremely poorly and remember sitting in a waiting room with loads of others for hours on end and looking at them thinking my god there’s some really poorly people here. Everyone looked dreadfully ill. That sad expressionless thyroid look with puffy unhealthy looking skin many were overweight and looked like their metabolism had gone completely wrong. I had bloods taken in the afternoon but was so overt it probably didn’t matter about the time of day. I think I was weighed too but it’s all a bit of a blur. The understudy did some sort of exam (clearly it was woefully inadequate) and could scarcely understand or speak English, he was Icelandic. The fool kept me on just 20mcg (or it might have been 25mcg ie sweet FA) Levothyroxine for three months greatly prolonging my suffering and recovery and he completely messed up my ultrasound appointment to check I didn’t have cancer - two close relatives had had it and it was a very rare type. I saw the endo the next time who was really lovely and sorted out the scan cock up and upped my meds immediately. He apologised to me as well. I saw him after that and it was a lot better. I was so mentally impaired I wrote down the things I wanted to tell him. And read them off my list. He was fine with that , even seemed quite impressed. I was so ill I used to sit there with him and quietly cry probably because he was a compassionate person who actually listened and wanted to help me get better and acknowledged I was very ill. He didn’t overload me with info which I couldn’t have taken on board at that stage or make any comment about the tears. Crying with him was very cathartic it had been a really horrible experience and I faced almost all of it alone. The scan revealed I had so little thyroid tissue it was unlikely to have had any function and there was no sign of any cancer which was a huge relief. Hopefully you are much more with it than I was at that juncture. I hope you get a good endocrinologist who listens. You should get the measure of them fairly quickly if you ask the right questions. I knew very little about my condition I was suspicious I had thyroid problems because of similar symptoms (all dismissed by medics) to my close relatives with thyroid disorder who took Levothyroxine and rapidly felt better on it. I had expected the same for me. I never felt properly better on it but did not see the endo once my TSH was got below 5 and fine tuned to between 0.25 and 0.5 which is better than some get sent away with. I was not impressed with the endocrine nurse who did not really listen to me and who basically said put up and shut up that’s the best it will ever get for you, when I told her I still did not feel well. I wish I had demanded to see the endocrinologist again I might have got a T3 trial back then, but I knew nothing about T3, I thought all there was was T4. I was sent off on a wild goose chase for myasthenia gravis - all inconclusive some signs but not enough of them for a diagnosis I don’t think I have it because NDT soon resolved my remaining symptoms after three years of unnecessary suffering on that stuff. Good luck ☘️🍀☘️
I took along the blood test results from my GP as the endos don't always have access to them on their systems. I had my height and weight taken and weight is monitored at every appointment as gain / loss is considered along with other symptoms and bloods. The endo and I discuss my symptoms, any other supplements I'm taking (e.g. vitamins) and when I take them, etc. You might be asked to go for a blood test after the appointment as the results will end up on the hospital system for the endo to monitor (the ones done by my GP certainly don't). I tend to ask for a blood test form and have one a week or two before my appointment so the endo can discuss it with me. Working with them makes a huge difference.
I turned up to my first endo appointment with a list of symptoms and a spreadsheet of all my thyroid tests I ever had!!! (Including some done in Greece, and the results of a thyroid scan. It took me a while to track down all the tests and I was surprised at how may I had had done over the years that were mostly ignored by GPS. ) he loved it! Said he loved a good spreadsheet, I think I’m a little in love with him. We are getting on well, I have asked him to look after me rather than GPS upping and lowering doses. I think I’m one of the lucky ones. I have been under his care for a couple of years now, and he can see that my FT3 is very low while my FT4 is high, so a combo trial has been mentioned and that is where we are headed.
I think it’s important you don’t go in saying I want this and that. I think you have to work with your endo and be patient. Like I said, I refuse to discuss my thyroid with my GP as they didn’t have a clue, what my endo says goes. But I have had to be patient. I have had to work with him. He has got me in a much better place than I ever was under GP care. I am stable and feeling much better, but he doesn’t like my FT4 being so high to get me feeling good, so it is his professional opinion I would probably benefit from adding T3. But this is the important bit, he has been building the evidence for me. So when he goes to his commissioning meeting or whatever it is, he can fight my corner with facts and that has taken time. He can say ‘she has consistently low FT3 under my care ...’
Good luck.
Will be interesting to see what happens
The more data you can take with you to the appointment, the better your chances of a meaningful interaction. My regular endocrinologist asked me to see someone at a tertiary care center (ostensibly better equipped to understand my peculiar situation). When the practice sent my record ahead of the new appointment, they didn’t send everything 🤦♀️
The new endocrinologist was flummoxed, and, because of the dearth of data, concluded I was simply “stressed” and that I could discontinue thyroid hormone replacement therapy 😱.
Take as much hard evidence as you can collect. That’s my advice.
Good luck, and may you draw a competent person.
Recommend taking the tick list of symptoms
thyroiduk.org/wp-content/up...
Spread sheet of all blood test results
Good for showing progress or decline over time
Plus most recent Full thyroid and vitamin test results
Thank you so much the list will be very useful
I had my first appointment with my Endocronologist last week, it was a phone call. I have another appointment sent through for July, another phone consultation. I have only had telephone consultations with my doctor and bloods taken by practice nurse. I have been on Carbimazole for exactly 4 weeks and have developed hives on and off throughout the last week. Read that this can be a side effect and treating myself with antihistamines, which just about takes the edge off. Don’t really know what to do next.
The consultation with the endocrinologist went very well he was very thorough.Unfortunately I had to wait 6 weeks for a letter for my results which were out of date by then as I had a follow up Thyroid blood test with the GP which indicated they had got worse.
Hospital letter -Diagnosis Primary hypothyroidism
TSH had got worse, Thyroid peroxidase 213.0 kU/L (0-34), he advised GP to increase Levothyroxine gradually 25mcg am and 12 .5mcg pm, the aim for upper limit of normal TSH.
What’s disappointing here is that I had to chase the consultant for my results but if I had know earlier I could have called the GP and they could have told me the results as they can access the hospital results.
I had been under medicated for 6 months but since the increase of 25mcg am and pm I’m slowly beginning to feel better.
Hope that helps
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