1st appointment with an Endocrinologist. What to expect?

Hello,

I am three weeks post diagnosis with hypothyroidism and have my first appointment with an Endocrinologist this afternoon. Could someone please tell me what I can expect to happen/what will be discussed as I am clueless? I made the decision not to take any medication until after seeing him.

TSH 13.31(0.27-4.20)

free T4 11.48 (12-22)

T3 4.45 (3.1-6.8)

I have been tested for vitamin levels and now on all the recommended vitamins and minerals, have both antibodies for Hashimoto's, have gone gluten and soy free, awaiting vitamin D test (but supplementing any way) and await a cholesterol test.

I feel great, like really good. For the first time in 25yrs I got my period without any PMS, headaches etc. But I have started to think about other things that happen to me - for example last night as I was dropping off my heart beat felt irregular (slow and kind of pained when I thought about it) and I jumped myself awake with a 'BOOM' of the heart...like a panic state, a couple of times.

Thank you

10 Replies

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  • Helena877,

    I can only advise how my endo consultations are conducted.

    I'm weighed and height measured by nurse before I go in for my appointment. Because I had thyroid cancer my neck and throat are palpated to detect swollen lymph nodes. Symptoms (if any) are discussed. Bloods taken 4 weeks prior to consultation are reviewed and, if necessary, dose adjusted. Blood forms are issued to be done in advance of the next appointment. My early endo consultations took around 40 minutes but now that I'm optimally dosed I'm in and out in under 10 minutes.

    Slow heart beat and ectopic beats are due to low thyroid hormone. Once you are optimally dosed your heart will beat normally. I found the hard thumping heart beat made it difficult to sleep. Adding an extra pillow and lying more elevated was more comfortable for me.

    It's a pity you didn't start taking Levothyroxine when you were diagnosed because it will take some time to work.

  • Thank you Clutter

    I made the decision not to take it until I'd had further tests and seen the Endo. It has all happened so quickly from thinking I had anaemia to being diagnosed hypothyroid. I have learned a lot from this site alone and feel more informed now. I just don't know if I'm happy taking Levo and upset that unless I pay £££ it's my only option.

    I think I am scared to take as I'm well and terrified that I will suddenly get all these symptoms such as hair loss and weight gain. My work relies on how I look so it is a major, major issue for me - not just a vanity thing :-(

  • Helena877,

    You're more likely to experience symptoms including weight gain and hairloss because you aren't taking Levothyroxine. I have had considerable unwelcome weight loss since taking Levothyroxine and struggle to gain and maintain weight.

    Most people do very well on Levothyroxine and don't need the support of thyroid fora. Please don't make up your mind that you will have problems until you've tried it for a few months.

  • Thank you. It is fear of the unknown, which I know is a totally legitimate reason. All the experiences on here really affect me - the struggles people have had and the continued decline of their health.

  • I agree with what clutter has said above. Your TSH is high isn't it.

    My thyroid was overactive - I've got Graves Disease - so I'm no expert in treating people with hashimotos.

    I was treated with block and replace and was allowed to become quite hypo at one point. I lost some hair but once my bloods were in a good place that stopped. My hair is probably thinner than it was when I was younger but I'm 68 next month so it would probably have thinned with age. It has grown a lot and it is pretty much what they seem to call 'bra length' these days so I'm happy with it now. I have to say that my hair falling out was the straw that broke the camel's back for me and when I posted about it it turned out I wasn't alone.

    My weight fluctuated, I lost masses of weight with the Graves, that went back on once my thyroid was more or less back to normal but I became T2 diabetic this time last year and once I sorted out my diet - I'm on low carb, high fat now - all that weight has gone as has the T2 which is great so it wasn't really my thyroid causing my weight problem.

    I have also been totally gluten free for the past year and have watched my thyroid antibodies reduce steadily since I started, they haven't gone completely, my peroxidase are really low and my thyroglobulin is a fraction of what it used to be so I'm hopeful they will keep going down and it has been worth the effort to be GF. I don't eat junk food or fizzy drinks of any sort, pretty much everything I eat is made from scratch.

    I was very well when I was taking the Levo so I wouldn't worry too much about that unless you find it isn't making you feel better. I remember being really anxious that it might not work and no one would give me T3 or NDT - as it was I didn't need to worry at all. I did find that when I needed more Levo I used to get symptoms of being hyper - pounding heart etc. First time it happened I though I was becoming hyper again butsomeone on here suggested I was just needing more Levo and they were right.

    I have a friend in the US who started on NDT straight away. and ended up on Levo because that was what suited her best so although you read of people on here who don't do well with Levo there are probably loads of people out there who are fine with it - I know I was one.

    As for endo visit? Well I'd say don't expect much and you won't be disappointed. I don't know what I was expecting but I only came away from one visit over the year I was treated feeling 'good' - I attended a teaching hospital so I never ever saw the same person twice and most I saw were in training - so it was one visit with my 'chief' which was terrific and the rest I felt kind of flat, so don't have high expectations.

    I used to take a notebook with questions I wanted to ask, I had a section ruled off for blood test results along with their lab ranges - your are entitled to have them. I used to keep articles I had read with anything that was pertinent to me - in my case evidence of people who had been on 'block and replace' treatment for extended periods of time - the department's idea was that should I relapse I was to have RAI, that definitely wasn't what I had in mind unless as a very last resort.

    I think it helps to be seen as someone who is showing an interest in there r treatment and who will ask questions and not just someone who comes along and has treatment 'done' to them.

    Good luck with it all.

  • Thank you Fruitandnutcase It is good to hear that you had the same unfounded worries. Thank you for taking the time to respond to me.

  • What actually happened...

    I had my blood pressure taken. It was high for the first time in my life but I put that down to having an argument with a client on the phone two minutes before I entered the hospital and then having a super strong coffee whilst waiting. So, not by any means optimal testing conditions! My weight was checked and height measured.

    The Endo was really personable. He looked over the results of the tests the GP had requested and then my own from Blue Horizon. He asked about my symptoms to date - there are not many and have been none for the last 3 weeks other than a pounding heart that woke me a couple of times last night. Off the back of this comment he checked my heart, lungs and also felt around my thyroid for signs of discomfort and inflammation. There was none. But as soon as there is anything to do with breathing mentioned I get into a state of panic. i wish I could get over that - it's so annoying!

    He requested a series of other tests - vitamin D, cortisol, bone density, celiac, TSH (again) and I am having blood drawn for those first thing tomorrow. I know it would have been cheaper elsewhere (and he was happy to suggest I do this) but I feel I need to get these back asap so I can start medication once they are in. Saving money can start later on, so for now I dip into my 'rainy day money'.

    He examined my hands and I realise why he did this. Apparently one of the main symptoms of celiac disease is inflamed, broken skin on the hands. Now, I did have a couple of patches of this but had put it down to the very mild psoriasis that I suffer from and had treated it with steroid gel and it has gone away. So, in all likelihood I've got this - in my initial post someone had put this forward. My main concern is that I have not passed it on to my darling 3 year old son - what a pain that will be for him :-(

    Finally, we discussed medication. He agrees a starting dose of 25 Levothyroxine. He said that, if a little further down the line, the T3 is not looking good then we can think about supplementing that. He thinks I will be at my optimal at 75 Levo (we shall see!!!) He didn't seem in the least bit perturbed when I expressed concerns as to the cost of T3 and GP refusing to prescribe. Said that GPs tend to pay attention to him and he knows GPs that do prescribe.

    All in all I came away feeling more positive and hopeful.

  • Sounds good are you having B12 done too? Interesting that he thinks 75mcg will be your optimal. Like you say, you'll see.

    I have white coat syndrome so my BP shoots up the minute I even think about having it checked. Even if I use the surgery do it yourself machine.

    When I was part of a prediabetes study last year I had it done. The nurse dong the tests told me I would have it taken at five minute intervals and I was not to speak - so I was hooked up, I sat comfortably in silence while she did paperwork. We got a reading then carried on, five minutes later the machine was ready for my second reading, same procedure, then same for the third and final test. As a result I had the lowest BP results I have ever had.

    I now do my own at home and doing it the same way gives similar results, I just sit and read a book in between each of my readings. I find at my GP, they always want to talk and even if I say I don't want to speak and they don't talk you know they want to which is just as bad, as for taking three readings and taking an average - in a ten minute consultation? Not a chance. Good luck with it all, hopefully you will feel much better soon.

  • I've had B12 a couple of weeks ago and now supplementing as per advice on this forum.

    I was okay having my blood taken today - so many bottles that needed filling. I asked for a nurse to come in as I need the banal chat to distract me.

  • Helena877,

    For maximum absorption Levothyroxine should be taken with water 1 hour before or 2 hours after food and drink, 2 hours away from other medication and supplements, and 4 hours away from calcium, iron, vitamin D supplements and oestrogen.

    It takes 7-10 days for Levothyroxine to be absorbed before it starts working and it will take up to six weeks to feel the full impact of the dose.

    You should have a follow up thyroid test 6-8 weeks after starting Levothyroxine. Arrange an early morning and fasting (water only) blood draw when TSH is highest, and take Levothyroxine after your blood draw.

    thyroiduk.org.uk/tuk/about_...

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