First Endo appointment

[jib70]

I have my first endo appointment in 2 days - only waited 5 months for this.

I've read back posts and recommendations for this situation here but I'm still anxious. I just dread being told 'to come back in 6 months' and it will all be a waste of time (mine and endo).

OK I have my August scan results, very recent bloods from GP, private bloods I had done in recent months to take with me. Is it best just to hear what he/she has to say first, or do I go in with my paperwork and describe my symptoms? I truly don't know how to get the most benefit from this appointment so desperate for advice.

It has been so long now, but I think I was referred originally because I suggested my weight loss may be due to thyroid problems - and I've had an obvious goitre for years and years and recent scan showed my nultinodule goitre has become substernal, one nodule 3.5 cm (not as large as they can become I understand).

As usual with others here, I do have other problems which are affecting my day to day life. The only place I feel able to voice these is on this forum since I normally don't like to talk about myself, doesn't help with GP's and consultants I know. : (

Not on any meds. Both sisters had autoimmune diseases, one thyroid, the other lupus.

I'd be so grateful for advice of how to cope with my appointment and what to ask, or question. I so wish I felt stronger. j

[shaws]

I think (and hope) it will be beneficial for you to show him/her your latest results. I don't think nowadays they know any clinical symptoms but tick the ones you have on the following link.

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

If there is thyroid antibodies in your blood then you'd have an Autoimmune Thyroid Disease, also called Hashimoto's or hashi's. If you do have antibodies going gluten-free can help reduce them as they attack the thyroid gland until you're hypothyroid but treatment for hypo or hashi's is the same, i.e. levothyroxine.

If your goitre is bothering you tell him so and I note you are going to take your evidence of tests. That's good.

[jib70 in reply to shaws]

Thank you for your help shaws. My private bloods showed antibodies and following advice here I went gluten free about 3 months ago. I've also increased my previously low B12 with help from this forum.

I believe my most recent bloods show some sort of anaemia, not that this has been mentioned to me by GP.

Whenever I've seen a consultant previously for other problems I know why I'm seeing them - sounds odd but it is different this time - is it likely the endo will have a starting point or do they expect the patient to voice symptoms etc? Is it likely to be "Why have you come to see me?" and my mind goes blank as usual. Wondering how it has been for others and what their experience has been so I can prepare. j

[shaws in reply to jib70]

I think we're so relieved that we are seeing someone who knows how to diagnose, prescribe and help us recover our health that It is a great disappointment if that doesn't happen but look on the bright side - it may happen and you might have an endo who knows his/her stuff. I doubt any Endo knows clinical symptoms. All of our older doctors did as that's how they were trained and the 'modern-day' doctor thinks it is easy and seem to only look at the TSH and T4 (instead of FT3 and FT4) - if low they say we're not hypo but if they tested FT4 and FT3 they may see the bigger picture.

Anyway do not worry or get nervous and report back to the forum how you get on. You may get a nice surprise.

[jib70 in reply to shaws]

Of course you're right shaws. Why I've got so anxious about this appointment I really don't know, I usually consider myself quite capable and calm. Thank you so much for replying. Everything will be fine, I'll let you know how I get on. j

[MaisieGray]

If I had written that, I'd be asking/reminding myself:

1. What's to be coped - I'm just having a chat with a Dr.

2. What do I want to achieve, or find out, by seeing the Endo.

3. What do I need to ask, or inform the Endo in support of no. 2.

4. If time is limited, what is my order of priorities for 2 and 3.

5. Do I have any non-negotiables should they arise.

6. Am I prepared to throw all the above out of the window and go with the flow of the meeting.

No. 6 is important as the dynamics of a meeting between two people can result in it going very differently than how you'd planned it; but by working through 1-5 beforehand, you'll have it sorted in your mind and therefore less likely to be wrongfooted if the meeting does go in a different direction.

I'd be subtle about presenting any results etc, referring to them conversationally at the appropriate point, rather than presenting them as a sort of professional challenge.

[jib70 in reply to MaisieGray]

Thanks Maisie. I needed to have it spelled out to me. Why this has become such a mountain for me when it's just a molehill really. I won't be confrontational, I'll go with the flow but at least I am informed and should be able to ask the right questions thanks to this forum. I shall bear all your points in mind they are a huge help. So much appreciated.

What a wimp I've become I almost don't recognise myself sometimes

[MissGrace]

I’d recommend taking someone with you if you can. I hope you see someone really good and helpful, but it if you feel it isn’t going your way medics can often be more measured in their response if another observer is present. I know there are some real horror stories on here of endos and GPs who range from ignorant to incompetent and bullying to downright dangerous, but there are positive stories too and often we are more likely to post about an outrage than a ‘hey that went well really.’ Good luck. 😀

[jib70 in reply to MissGrace]

How kind you are to respond. Unfortunately there is noone who would be able to accompany me, but that's OK. I'm annoyed with myself for making a fuss, after all I've got through and dealt with a lot of other health and life difficulties as I'm sure many others here have, so I will manage this I'm just anxious to get it right and make the most I can of this opportunity. Many thanks. j

[Rmichelle]

I really do hope that you have someone who gives a hopeful outlook and knows their stuff, if they are,then hold onto them but sadly that happens very little ...im on endo no3, go armed with knowledge of your condition as they are not known for their patience and comforting personalities.

I think we wait so long for these appointments and put all our hope into thinking we will be great but more times we are disappointed.

I really hope you will be pleased and your endo will be on the ball...there as to be some.🍀

[Rmichelle]

Forgot to say good luck.xx

[jib70 in reply to Rmichelle]

Thank you. x

[silverfox7]

I would write down anything you wish yo know as from experience memory seems always tondisappear when you don't want it to! Don't be afraid to ask questions and jot notes if you wish.