Endocrinology first appointment

[fellingletdown]

Hi I have my first appointment on the 23rd, my GP referred me due to low vit d and not responding to treatment with d3. I'm wondering what to expect? I don't know anything about endo.

[Fruitandnutcase]

I'd say just don't expect too much then you won't be disappointed. I frequently felt it was all a bit of a let down - don't know why, they were always very pleasant but I felt 'flat' after most visits - I also felt ( and said to one of the endos) that they didn't really need me there because they could do what was done by looking at my blood test results, my hospital was a very good one, my endo was good although as it was a teaching hospital I saw a different person each time yet most times I went I came out feeling 'is that it?'.

I'd take a notebook and jot down some bullet points if there is anything you want to discuss - keep your points brief and just stick to a few main ones otherwise the endo will get fed up if you have too much to say. Ask for all your test results - I kept a page in my notebook for test results although I also got print outs from my GP. Write down what the endo tells you. I think it looks good of they can see that you are taking an active part in your treatment rather than just accepting what the endo says without asking any questions.

Good that your GP has tested your D3 then referred you - I got fed up begging to have my D3 tested and eventually had it done privately.

[fellingletdown in reply to Fruitandnutcase]

Thanks fruitandnutcase, it was good that they tested me but then I had three years of level still not up take mor vits! I have so much pain now along with no energy and weakness. What do they do/test for?

[faith63]

oh boy..what a loaded question! I understand that we are not allowed to use fowl language here, so i cannot help you! Lol!!, seriously, it isn't funny!

[dpa87]

Whilst I appreciate there have been many negative experiences, mine was not. I felt he listened to my symptoms along wIth checking my results. He then physically checked me and referred me back to my GP with a treatment plan and instructions I was to return to him if I did not feel at optimal health after treatment. I am do to see him again on 15th and feel a sense of relief that I will be dealing with someone who knows and understands my hypo issues. all the best, I'm sure it will be fine.

[Oliva1955 in reply to dpa87]

You are so lucky to have found one who seems to care ...,do you mind me asking who and where he practises .

[dpa87 in reply to Oliva1955]

Sent pm xx

[fellingletdown in reply to dpa87]

Didn't get any pm

[dpa87 in reply to fellingletdown]

Sorry that was a message for olivia1955

[fellingletdown in reply to dpa87]

Hope I have a similar experience to you dpa87. A treatment plan sounds good. What was your diagnosis?

[dpa87 in reply to fellingletdown]

Had thyroid removed in 2000 after 2nd bout of Graves' disease. (Had been in remission for 15 months)When I saw Endo in Nov he advised I had been under medicated for ten years and he is basing my treatment on how I feel rather than what my results are. My latest results have tsh at 0.01 but I still have symptoms so he said we can look at combo of t3 & t4.

[Musicmonkey]

Do you know whether your Endo is on the recommended list available via Louse Warville at Thyroid UK?

[fellingletdown in reply to Musicmonkey]

I don't know about this list my appointment is with a dr v Katreddy at the Royal stoke university hospital

[Musicmonkey in reply to fellingletdown]

I'm not at home, but believe Louise's email address is [e-mail] or might be spelled warville?

Can someone else advise please?

[Fruitandnutcase]

Gosh, dpa87, all I ever got was 'you're within the range' - as for feeling 'optimal' - or even 'fine tuning' - well that never came into it.

After the initial bloods my GP did where I think I was tested for everything in sight, I was tested for TSH,T4, eventually a one of B12 (family history of low B12, my T3 was never tested and after begging successfully for D3 I eventually paid myself used Blue Horizon home fingerpick tests to get my T3 tested and City Assays for my D3 although Blue Horizons do that now as part of a bumper bundle.

If you have found someone good, please let Louise at Thyroid UK know and they can go on her list of patient friendly endos.

[Hidden]

fellingletdown,

Vitamin D deficiency is associated with autoimmune thyroid disease, and supplementing has been shown to benefit autoimmune-mediated thyroid dysfunction.

The inactive form of 25D (calcidiol) is converted into the biologically active 1,25D (calcitRiol)..  

GI disorders, inflammation, stress, excess weight, VDR polymorphisms and other factors can impair the production, absorption and utilization of vitamin D.

25D has been long used as the main marker for vitamin D status but there is a member called Epictetus who believes he has a “Vitamin D Dysfunction”.

This means he is unable to raise Vit D levels and feel well as in some increasing 1,25D may elevate inflammation.

Elevated 1,25D levels are immunosuppressive in the sense they reduce the ability of the immune system to function effectively to eradicate the CWD forms of bacteria making the patient become more & more unwell..

For an introduction to the "dysfunction" see: fearlessparent.org/suppleme...

Also books.google.com/books?isbn...

Veronica D. Stolzt - 2006 - ‎Preview

New Research Vitamin D Book

books.google.co.uk/books?id...

A lot of the effects of vitamin D toxicity happen when there’s too much of the active form in the body and as I understand it, it is the result rather than the cause of the dysfunction. ..

Flower

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Disclaimer: I am not a medical professional and this information is not intended to be a substitute for medical guidance from your own doctor. Please check with your personal physician before applying any of these suggestions.

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[Rebec]

I have a very low vit D and being in the sun (I stayed for a few months in a sunny country) didn't make a difference but I think that in my case, which might be yours as well, is due to parathyroid glands malfunctioning. Have you had them tested?

[fellingletdown in reply to Rebec]

I've had some blood tests at my GP surgery but not been given results yet

[judburke in reply to fellingletdown]

My chronically Low D3 despite huge supplements was due to undiagnosed Coeliac. I was taking supplements and getting plenty of sun. This has now fixed itself since being diagnosed Coeliac and going 100% gluten free

Good luck with your appointment

[fellingletdown in reply to judburke]

Hi judburke did the endo discover you are coeliac?

[judburke in reply to fellingletdown]

It was my GP that eventually tested for Coeliac. After taking huge supplements for D3 and Iron/Ferritin and my levels just would not improve - we discussed what could be causing the the lack of absorption and he did the blood test which came back with high levels of antibodies.

[fellingletdown]

So I've seen an endo and he told me I needed a blood transfusion and gave me vit d caps 20000iu twice a week.i had to go back the next day for the blood I was seen by a diff consultant in the end I was given an iron infusion by iv last week and another one today I don't feel much better in fact I my legs are aching after today's treatment.ive got to have cameras to check for ulcer etc. I think all the other test for thyroid must have been ok.