1st endocrinologist appointment. What should I ... - Thyroid UK

Thyroid UK

136,963 members160,560 posts

1st endocrinologist appointment. What should I ask for?

MrsPS profile image
12 Replies

Hi everyone, I'm new here and struggling with lots of symptoms. I've battled the GP because my levels were apparently normal despite symptoms, they refused to test my antibodies. I got private tests done and antibodies were high. I also have a goiter and many eye symptoms.

Went to the gp again and she has referred me to an endo. I have an appointment with Dr Lesley Hall in Glasgow in March.

So I have this appointment but given what I know so far of NHS - is there anything useful I can get out of this appointment?

Thanks

Written by
MrsPS profile image
MrsPS
To view profiles and participate in discussions please or .
12 Replies
Clutter profile image
Clutter

Welcome to the forum, MrsPS.

If you post your recent thyroid and antibody results and ranges members can advise whether you are optimally dosed.

Endocrinologist should examine your throat and neck to see whether the goitre is nodular should check your eyes to rule out thyroid eye disease (TED).

MrsPS profile image
MrsPS in reply to Clutter

Thanks Clutter I tried to upload the results. Is there any best way to upload photos?

MrsPS profile image
MrsPS in reply to MrsPS

Got it working!

Clutter profile image
Clutter in reply to MrsPS

MrsPS,

Unfortunately, the text is too small and feint for me to read. Can you either delete the image and re-upload it or type the results and ranges manually?

MrsPS profile image
MrsPS in reply to Clutter

Thanks! I think this shot should be better.

Clutter profile image
Clutter

MrsPS,

Much better :)

Thyroid levels are good. TSH 1.12 is low-normal, FT4 16 is just under halfway through range, and FT3 5.2 is good and indicates conversion is good.

Thyroid peroxidase antibodies are positive for autoimmune thyroid disease (Hashimoto's). There is no cure for Hashimoto's which causes 90% of hypothyroidism. Levothyroxine treatment is for the low thyroid levels it causes. Many people have found that 100% gluten-free diet is helpful in reducing Hashi flares, symptoms and eventually antibodies.

chriskresser.com/the-gluten...

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

How long have you been diagnosed? It's not uncommon for symptoms to lag behind good biochemistry by 6-12 months.

Have you had ferritin, vitamin D, B12 and folate tested? Hypothyroid patients are often deficient/low and symptoms can be similar to hypothyroid symptoms.

MrsPS profile image
MrsPS

I've not really been diagnosed with anything. Just frustrated.

It was a while back I got tested for several things by my gp. Who said everything was normal. That was last summer.

So would a full vitamin panel be worth asking for?

MrsPS profile image
MrsPS in reply to MrsPS

Oh and I went gluten free at new year. I definitely have more energy and have lost some puffiness.

Clutter profile image
Clutter in reply to MrsPS

MrsPS,

I'm sorry, I mistakenly assumed you had been referred because Levothyroxine hadn't relieved your symptoms. Your thyroid levels are unequivocally euthyroid (normal) if you're not taking Levothyroxine.

I've never heard of a full vitamin panel. It would certainly be worth asking for the 4 I recommended above to be tested if you have symptoms of fatigue, low mood and musculoskeletal aches and pains.

SlowDragon profile image
SlowDragonAdministrator

Essential to test vitamin D, folate, ferritin and B12

Your antibodies are high this is Hashimoto's, (also known by medics here in UK more commonly as autoimmune thyroid disease).

About 90% of all hypothyroidism in Uk is due to Hashimoto's

Good you have gone gluten free.

Essential to test vitamin D, folate, ferritin and B12.

Always get actual results and ranges. Post results when you have them, members can advise

Hashimoto's affects the gut and leads to low stomach acid and then low vitamin levels

Low vitamin levels can affect Thyroid hormone working

Poor gut function can lead leaky gut (literally holes in gut wall) this can cause food intolerances. Most common by far is gluten

According to Izabella Wentz the Thyroid Pharmacist approx 5% with Hashimoto's are coeliac, but over 80% find gluten free diet helps significantly. Either due to direct gluten intolerance (no test available) or due to leaky gut and gluten causing molecular mimicry (see Amy Myers link)

But don't be surprised that GP or endo never mention gut, gluten or low vitamins. Hashimoto's gut connection is very poorly understood

Endocrinologist is quite likely to poo poo gluten free diet and to be completely disinterested in vitamins

Getting vitamin levels optimal is essential

thyroidpharmacist.com/artic...

thyroidpharmacist.com/artic...

amymyersmd.com/2017/02/3-im...

chriskresser.com/the-gluten...

scdlifestyle.com/2014/08/th...

drknews.com/changing-your-d...

thyroidpharmacist.com/artic...

MrsPS profile image
MrsPS

Thank you! That's very helpful. I'm looking at other dietary changes although not sure of that could just cause more problems.

Also wondering about Sjogrens syndrome.

Buzcat profile image
Buzcat

hi just read your comments did you have hypothyroid when you put your post up myself and daughter became very ill nearly five years ago wee had to go private for tests it showed wee had multiple thyroid abnormalities and antibodies in the thousands,I didn’t see a endocrinologist till I had a heart attack yet I kept telling my GP I was going to have one after the heart attack I got to see Dr Lesley Hall by that time my thyroid problems had got better I had my files sent to me and on them Dr Hall wrote on them it was my other illnesses that had caused them I wrote her a letter but got no reply I asked her what illness did I have as the only medication I was on was Levothyroxine and it was the change of brand from MP to Teva that caused it I got no reply from her I would calll it gaslighting how did you get on.

You may also like...

What should I ask my consultant endocrinologist?

First endo appointment next week...what should I be asking for?

I have a goitre and nodules seen on a scan. I have a normal tsh and no antibodies (gp only tested...

Should I do private thyroid test before appointment with Endocrinologist please?

On the call I discussed my private thyroid test & also link to thyroid /high cholesterol. She...

Just had 1st endocrinologist appointment

this forum for recommending antibody testing and Hashimoto I would not have been aware of doctors...

What tests should I be asking for?

Many Hypothyroid symptoms. Test Results: 16/02/2017 TSH 8.01 mu/L Range 0.35-5 mu/L Drs...