Advice and tips on preparing for first ever (private) Endo appointment please

[MrsT79]

Hello,

After worsening symptoms and difficulty managing the basic elements of my life, I am after 8 years hypothyroid, actually seeing a private Endo (chosen via recommendations from this group).

In preparation;

* I have already been working on increasing my iron, folate and Vit D levels based on feedback from bloods taken in June.

*Have a private blood draw booked this week to retest. I have stopped biotin and B12 supplements and am aware of when to take my Levo dose before my 845am appointment. Testing for full thyroid panel, Vit D, B12, folate, full iron panel, H1ABC.

*Have had DIO2 gene and saliva cortisol test.

Can anyone recommend a good template to collate all of my recent test results and also, a brief summary of my medical history and current symptoms? I am worried about including too much information rather than too little.

Also, instead of waiting and seeing what the private Endo recommends, should I have a plan of what to ask for? I want to be well and have my life back but should I be more specific? Do I ask for a trial of NDT and T3? Just wait and see what he suggests?

I am grateful to have this opportunity but need to find recovery as quickly and effectively as possible.

Many thanks in advance for your help and advice.

Angela - MrsT79

I have added a profile summary.

[MrsT79]

To add : I am having DHEA blood test too.

[Hidden]

Hi there - I understand why you want to be prepared .I can’t advise on what to ask for - buy I can share what I did for my Endo appt .

Ahead of my appointment I asked his secretary if I could email details of my concerns to be attached to my notes for the appointment, which she happily agreed to do.

In writing, I submitted details of my adverse symptoms , with as much relevant detail as I could -‘such as low blood pressure that I had monitored and low pulse rate.

I detailed physical symptoms and how they affected my quality of life.

I stated that because of these symptoms

I wanted a review of my treatment options.

On the day he tried to tell me that everything was ‘normal’ - he wasn’t arrogant - just following the NHS protocol.

I didn’t argue with him - I just stuck to my guns that my treatment was not effective, my symptoms had an adverse effect on my QOL, and asked what were my options .

He offered me 12 week trial of T3 - that was my only option and I accepted it .

I went down that route rather than trying to ‘tell’ him what I wanted - because I didn’t know what I wanted !

The fact is that no Endo will know exactly what is right for you - that will take some trial and error. But it will help if you at least get a chance to try something other than what isn’t working .

I wish you the very best with your appointment -

Hope you get a result

[MrsT79 in reply to Hidden]

Thank you Fancymare for your input. Did your trial go well?

MrsT79

[shaws Administrator in reply to MrsT79]

I've found on having a consultation that they don't want to be told too much about past histstory as they have only a certain time for the consultation.

Be as brief as you can and just state that you don't feel well but very unwell even though you seem to be taking an adequate dose of thyroid hormones and it puzzles you that you feel worse than before you were diagnosed.

I think that the majority of endocrinologists will think that we only want a consultation to get T3 prescribed and many wont be willing to do so.

It would be good if they could offer NDTs (natural dessicated thyroid hormones) the original replacement. Some might be willing to do so but I'm not sure. There's no harm in enquiring.

hormonerestoration.com/

[Hidden]

I’m on week 8 and I feel 100% better than I did : I’d been on 200mcg of levo for probably 14 years or so and did ok until about 2 years ago when hypo symptoms returned, It may have been longer - it’s so hard to know when exactly things start to change. I’m not yet sure whether I will need a further change.

I saw a private Endo for about 10 years until he retired - before I saw him I went through a couple of very difficult years with unsatisfactory GP prescribing.

I see an NHS Endo now.

Any clinician should listen to, and respond to your symptoms so it’s important to present them

in a way that demonstrates the impact they have on your life.

Symptoms are the clinical evidence that a treatment is not working and should not be ignored because of a blood test ‘range’.

Any clinician worth their salt cannot ignore symptoms.

Be prepared to listen to what they have to say - any change in meds will have an unpredictable outcome to an extent. But don’t accept no change!

By the way, although I had private consultations, I never had to pay for private prescriptions or blood tests - he just requested them through my GP .

I wish you luck - and would love to hear how you get on.

[Josephineinamachine]

I sent my blood test results in prior to the meeting. I had a list of symptoms written down. I included the cold/fatigue/weight gain/constipation (although it wasn’t an issue then) and low mood with other less obvious symptoms (which were my main symptoms). They like to hear what they know, and don’t easily accept ‘odd’ symptoms. That was my experience anyway. Good luck!!