Dissappointed beyond belief!

[Revsie]

Had my endo appointment yesterday that I'd been soooo looking forward to! Went off with high hopes but despite Dr Trainer and Dr Younis being the named doctors on the notice board at the clinic, and just to make sure asking the nurse and being reassured I'd see one of those two, I went into the room and was met with a different endo. I didn't have the heart to say i didn't want to see him as what do I know .... he might've been fantastic? Anyway, he wasn't! He was a lovely guy but I lost all hope when I heard him patiently explaing to me that he didn't think it was a problem to only test TSH levels and said taking t3 with t4 didn't make any difference. At this point I was too overwhelmed at missing my chance with either of the other two that when he asked me if I had any questions I was too emotional to speak and left as quickly as i could before i broke down in front of him. I hate myself now for not speaking up but I was incapable at this point - feel tearful now just writing this! Well he is going to call me back in a few weeks and do some tests, but if he doesn't listen to the fact that I've felt so much worse since being dropped from 175mcgs to 100mcgs of levo per day and that I'm Vit D deficient (12.8) and my GP wasn't going to treat me for it until I insisted, then I don't hold out much faith in anything else. I'm gutted!

[rosetrees]

First, don't beat yourself up for not asking the questions you wanted to ask. When you;re taken by surprise and are feeling weak, ill and emotional it's almost impossible to think sensibly. Your brain turns to free range, scrambled egg.

Before he calls you back write down all the things you want to ask. Write down your symptoms, what's improved and what's got worse. Gather all the evidence you need and when he phones, ask if you can have another appointment to see him.

If you can get the appointment, go armed with all your questions and evidence. If you can't get another appointment, try to make sure you ask all the questions you've written down while he is on the phone.

[Jackie]

Hi You can always insist on seeing the consultant you wish to, first phone before hand , their secretary and check they are there. Then insist with every one who speaks to you about seeing a doctor!f not a further appointment for a bit, ask the secretary to arrange an earlier appointment or better any cancellation. Always take a list as a prompt for your self. We all have docs appointment when nothing seem s to go right, but hopefully next one will be different. You need TSH, T4 and Free T3 tests at a minimum. if done at clinic + the other relevant tests, phone the secretary and ask for the results + ranges, all different and useless without them.Routine., you may need treatment with T4 and T3, quite common.Test shows this, otherwise you can pay on line.

Best wishes,

Jackie

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[Moggie]

When I read stories like yours (and I have read many on this site so you are not alone) I get very angry. I get angry that endo's or GP's treat people in this appalling way and I get angry because, as I see it, they are taking advantage of people that are too unwell to either think straight or have the energy and strength to fight.

When doctors try this approach with me, my present endo being one of them, my temper starts to boil and I go into attack mode - I cant help it, its just the way I am built. I will disagree, I will question and I will make my feeling known in no uncertain terms. I only wish I could bottle this "bad" attitude I can have when dealing with people who disrespect others by treating them badly. I only wish I could hire myself out to people on this site sometimes who are so unwell that endo and GP appt's can overwhelm them. My "bad" attitude doesn't always get me what I want, if fact in can get me into trouble sometimes, but at this moment I really do wish I could give you some of it to use at your next appt.

Please don't give up or let this endo get the better of you. If you get tongue tied in these sort of appts can you not take someone with you who can help you fight your corner. Maybe we should set up some sort of a "buddy" system on here to give each other emotional and moral support when we have appts and have to tackle people like this endo.

Please stay strong, let the support of others on this site ease and heal your battle scars and take strength from all the love you are being sent.

Moggie x

[Revsie in reply to Moggie]

Moggie you are always so kind with your answers and yes it's a pity you can't be hired out to go and speak up for some people. It's brilliant though that we can vent our frustrations on this site!

I'm 52 years old and have gone thrugh tougher things in life and don't always let people walk all over me, but I just don't have the control over my emotions that I used to have, due to under treatment of my condition. I also still have faith in people (amazingly!) and keep expecting medical people to listen and understand. When will i learn....?

[Revsie]

Thank you so much for your support, it really does mean a lot to hear from people who actually understand.

What I'm so annoyed at is the fact that I've stood my ground with my GP and kept going back until he got me the appointment with the endo. I was really strong at that point and pushed until I managed to get my doctor to agree to me being referred. I was full of optimism and excited that i was going to be taken seriously at last by someone who actually had studied thyroid problems to a greater degree. I went to the appointment with a list of my symptoms which i handed over so I was succeeding so far. I also explained that I was VitD deficient and my gp said I didn't need treatment but had given me medication only because I quoted from Barts college in London. At this point I thought he would check my medication and the dosage and discover this was another area in which I was being incorrectly treated (I've been told to take 60,000 iu once a week for 12 weeks but haven't been given a loading dose to begin with which according to Barts will be ineffective without this). When he glanced at the bottle and said 'Oh yes colecalciferol' without checking how it had been subscribed, it was at this point I suffered a massive drop in confidence and hope and my emotions began to collapse in on me. I knew at that point I couldn't speak and the poor man must have wondered what he'd done wrong? I've still got to be recalled for tests and I believe they're going to be extensive - muscles, ECG, bloods for minerals etc but why do they not listen to the patient when I say I've felt 100 times worse since dropping from 175 to 100mcgs of levo per day? Should that not tell them something as a base to start from then take it from there? When I get recalled in about 6 weeks I'll go armed with questions but I'm working with a consultant who thinks only the TSH level needs to be measured so don't hold our much hope.

You'd think with how widespread an under active thyroid is, that some of these professionals would be suffering from it and therefore fight for proper treatment.

[Heloise]

Oh, so sad to hear Please consider taking someone with you as an advocate if at all possible. It is not unusual that the patient is unable to defend himself in the presence of doctors.

[Revsie in reply to Heloise]

There's no-one to take Heloise as if you don't have an under-active thyroid then you can't really understand the frustration that comes with it. I've learned not to say anything much about it to my husband, family and friends as they just say everything's a sign of getting older or it's the menopause. Other than my deathly pallor I don't appear ill - just fatter, older (about 5 years in 1 year) and tired! No-one can see the muscle aches, the coldness, the weakness, the breathlessness, so it's down to me and next time I'll be more prepared! I feel stronger just responding to this so thank you for taking the time to comment.

[Heloise in reply to Revsie]

Menopause does seem a time when the hypo can really rear it's ugly head. That's how it happened to me as well. I think progesterone cream can help a little. I was on Synthroid for years and finally got the natural hormone and right now am trying T3 and too soon to say for sure but I love it. I ordered it myself.

Think about it.

drrind.com/therapies/thyroi...