I have my first endocrinology appointment through the NHS on the 1st Nov; I only just started on 50mcgs levothyroxine 8 weeks ago and thought that bloods should be checked every 6-8 weeks but I just got back from the g.p as I booked an appointment to request ft4, ft3, TPOA, TSH, ferritin, iron, b12, folate and vit d and progesterone (because I have extremely high estrogen and severe symptoms of PMDD) blood tests in time for the appointment so the endocrinologist has up to date results on the day I see them but the dr I just saw said the endo will request these if they think it's important. But it IS important and I said but what about getting them in time for my appointment but she just kept saying they'll do them and are much quicker...?? This is why I hate going to the g.ps now, I get so wound up and anxious and the run up to my appointments I play out scenarios of me having to get defensive and rehearse come backs... it's so draining. Anyway, should I pay privately again to get all these in time for my appointment or just wait until I see them?
My symptoms have been getting much worse since starting levo, more specifically the fatigue, cognitive impairment, heart palps and anxiety. I didn't think they could get any worse! I can't take this, everyday I feel as though I've been given a general anesthetic and I literally can't go out anywhere most days. It's so depressing, this isn't living. The physical symptoms also get worse and my mental health is in such a state 2 weeks before my period, I was so close to acting on my suicidal thoughts 2 Saturdays ago and that's terrifying. I'm genuinely scared for my life.
I hope some of you can advise me on what to do regarding bloods please and what to say or do at my first endo appointment because I'm so anxious about them not treating me properly just like most of the poor folks on here. I'm also going to pay to get a cortisol saliva test done as I know my adrenals are burnt out, I just don't know if I have too much or not enough cortisol as I have symptoms for both.
I hope it's ok to tag people who may be able to help - greygoose silverfox7 SeasideSusie shaws lucylocks Peanut31
Thanks, Ali x
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Flossles
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Not easy to prepare for an endo appointment, it's like jumping into the unknown. I think it's always best to just listen and answer questions, first, until you get the lie of the land. If he turns out to be an ignorant, arrogant pig, there's no point in asking questions, anyway. Just play it by ear. Who knows, you might be able to have an intelligent conversation with him.
I expect he will want to do labs - and can't understand why these aren't done before the appointment by the GP, that would make far more sense - but I doubt he'd do all those that you can get privately. But, on the other hand, he might be one of those that won't accept private labs. You could try getting them done privately, and see if he will accept them, and then at least you will know.
It's not unusual to develop new symptoms when starting levo - nor for the old symptoms to get worse. But, this should improve as the dose is increased. So, don't worry too much about that. But, how about your low nutrients? Has anything been done about those? They all need to be optimal for your body to be able to use thyroid hormone.
Especially if the dosing is not increased in a timely way, symptoms can worsen after the initial improvement, until the dose is increased as necessary. It might be worth returning to your GP armed with the relevant NICE Clinical Knowledge Summary which will remind him that in treating overt primary hypothyroidism with levothyroxine he should "Review the person every 3–4 weeks after initiation of LT4 and adjust the dose according to clinical and biochemical parameters, aiming to: Resolve the symptoms and signs of hypothyroidism & Normalize serum TSH and improve thyroid hormone concentrations to the euthyroid state." The document will also track him to the eMC where he'll find the reminder "Adjust at three to four week intervals by 50 micrograms until normal metabolism is steadily maintained. The final daily dose may be up to 100 to 200 micrograms" and to the BNF which advises "Initially 25 micrograms once daily; adjusted in steps of 25 micrograms every 4 weeks, adjusted according to response; maintenance 50–200 micrograms once daily". It's doubtful you'll get all the tests of use to you/him and perhaps private testing is necessary any way, but that isn't the point when he's failing to follow the guidance coming to him from every direction.
I’d just say don’t expect too much. I don’t know what I expected - not just at my first appointment - at every appointment.
First appointment the guy went through how well qualified he was! Then he went through all the ways overactive thyroids were treated (I’ve got Graves) he didn’t mention Graves however. I said something about ‘you mean like Graves’ disease?) and he looked at me in amazement, even pointed at me and said ‘yes, Graves, that’s what you’ve got, Graves’. I got the feeling that if I hadn’t brought up the G word he may well not have done either.
Anyway. I was told to take a urine sample which was never tested. I had my blood pressure taken and was weighed then I joined the queue to see the consultant. I’d been taking 40mcg carbimazole a day for the past three months and the blood test I’d had at my doctors surgery the week before showed me to be hypo at that point. So he said to stop the carb for ‘a few days’ - I stopped for four - but to start on my levo right away. I got the distinct feeling that if I had taken my husband in with me the consultant would have addressed him rather than me.
I think it’s a good idea to get yourself a notebook and jot down any questions you would like to discuss tomorrow and at future visits. Use it to keep a note of all of your blood test results - you are entitled to be given a copy of them if you are in the U.K. You really need to know all of your thyroid results plus ferritin, folates, vitamin B12 and vitamin D. Yes u may have difficulty getting then to test some of these. I had B12 done - family history of PA - I never had T3 or vitamin D “ Vitamin D testing is very fashionable at the moment, if can prove there’s anything in it I’ll test you” - he had moved on by the time I went back so now I pay myself to have them done.
Write down any changes of medication and quick notes about how you are feeling on a day to day basis. I also kept notes of anything useful I found out about thyroid disease. Might even be worth thinking of any family members with thyroid problems.
Just don’t expect too much and you won’t be disappointed. I don’t know what I was expecting but I never really found it, I used to come away wondering why I had gone when in my case all they seemed to need was my blood test results. They used to ask how I was, very politely but I’m not sure anything I said would have affected the decisions they had already made about the next step in my treatment. They could have done that and sent me a letter telling me what the do next.
Lots of good advice already but I would write down anything you want to ask otherwise if you are anything like me then you will forget to ask! As you are just starting out then you haven't much experience of how you are and how you would expect to be but anything at all that you don't know or don't understand at the moment would be a good start orcyouvcould say that this is very knew at the moment so could he give you some good advice of does and donts. What symptoms show that you need to see a doctor. Thyroid Uk run thisxforum and have a very good site so may be read that to see if you understand and if not seeehat he says. Either way share your experiences but also remember that we are all here to help you as well as you go further along as it can take a while to get your levels right.
Also go prepared for being sent for blood tests as you don't want to turn up after ahuge breakfast plus your medication to then be sent for tests. A good Endo should do lots of tests not just thyroid ones so may be an ECG, Thyroid scan and look st bone density. These are things my last one sent me for but it's not always easy to second guess what they will want to do. I'm alwayszweighedxand height checked as well. What could be useful to do is to take your temperature every morning before you get out of bed. That's a good indication of how your thyroid is working and if you need your dose increasing which probably is a certainty anyway as not on your best dose yet. Try not to be nervous. He will know you may be don't understand it all yet so anything he says that you don't understand then I would ask him to explain.
greygoose MaisieGray Fruitandnutcase silverfox7 Hello everyone, so sorry for the delay in getting back to you. Thank you all for replying as well. I hope you all don't mind me replying to you all in one message but my brain can't handle more than one, it's a real struggle thinking of the words and then typing. Looking at the screen is a struggle too. My symptoms are getting so bad now and I only have enough brain power for one message or so a day, it's ridiculous! It's so depressing. I'm not getting my hopes up about this endo appointment but I'm also going to go in and listen to them but also say what I have to say too. I hope they actually know what they're talking about and have some common sense!
I can't understand why the dr wouldn't request the bloods I asked for too, it's clearly logical to have them ready for the endo appt so they have up to date results. Mind you, this is coming from the dr who in my notes wrote "Repeat TSH in 2 months, no point checking sooner as has switched meds so much." No I hadn't, I tried 25mcg for a couple of days and it made me worse. Anyway, I've ordered another thyroid and vitamin blood test through Medichecks so will get them done this week.
I've been on the same starter dose of 50mcg for over 8 weeks now with worsening symptoms, I need it upping. I tried to a couple of weeks or so ago by an extra 25mcg but had the worst palpitations and palpitations are something I have most days now but this was stopping me from sleeping. I just don't hae the fight in me to fight with my drs for peoper care now, they don't listen at all, when I printed off loads of info and guidelines on treating B12 deficiencies the dr I saw took and and didn't look at it and didn't treat me with injections despite being severely symptomatic. This is a guy who said you can get B12 from some green vegetables... I mean come on, in this day and age where our earth is so depleted of vita vitamins and nutrients I really don't think so! I don't know what my vitamin levels are but will after this Medichecks test. I've been taking 1000mg Vit C, 25mg amino chelated iron, 400mg magnesium, 2500iu Vit D3 with K2. And then I started taking my suglingual b12 and folate but wasn't taking enough at all, was only having it once or so a week and it's not enough. I have a B12 deficiency and I know a lot of the symptoms are coming from that too but I'm confused whether to take high strength sublinguals and how much or to start self injecting and again how much and how often. This is all too much for my brain. I'm honestly so scared of how ill I feel, it feels like I'm dying but people say I look fine and that makes me feel worse because if only they knew.
Oh and I forgot to mention that I'm booked in to see Dr Barry Peatfield next week so hopefully he can help give me some direction to recovery too. I should have seen him a couple of weeks ago but was too unwell to travel.
My Endo asks me to have my bloodsdone a week before my next appointment so he gives me a list for that any other tests before he sees me next. May be yours may do that once you have met.
Hi Flossles, you are not alone! If you are feeling anxious before seeing your endo or GP, or just anxious in general, you can use your own body to help not hinder you.
Have a go at the 7-11 breathing technique, better explained here.
Sounds hippy dippy but honestly, it works for me in e.g. the dentist chair, and when I was rushed to hospital (1.5 hour drive in the back of an ambulance) whilst in labour for my first child and arrived 'too relaxed' in the opinion of the consultant at the hospital. Anyway, hope this helps with lowering anxiety.
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