Endocrine appointment

[Helly75]

Had my first appointment today & it went exactly as I thought it would . She didn't want to check T3 or any other bloods , doesn't know why I'm so symptomatic , wouldn't send me for an ultrasound & just said to have my thyroid checked again in 8 weeks

[SlowDragon Ambassador]

sorry this was so disappointing

Presumably a diabetic specialist

Previous post here

healthunlocked.com/thyroidu...

How much prednisolone are you currently taking

Suggest you

A) get private ultrasound scan of thyroid now

B) get full iron panel test for anemia now as iron is low and ferritin deficient

Iron 12.7umol/l

Serum ferritin 23 ug/l

Test early morning, only water to drink between waking and test. Avoid high iron rich dinner night before test

If taking any iron supplements stop 3-5 days before testing

Medichecks iron panel test

medichecks.com/products/iro...

monitormyhealth.org.uk/anae...

10% off code here

thyroiduk.org/testing/priva...

C) work on improving low B vitamins

Folate 3.3 ug/l

B12 366 ng/l

are you now on separate B12 and separate vitamin B complex

D) vitamin D yourself here

NHS easy postal kit vitamin D test £31 via

vitamindtest.org.uk

E) get coeliac blood test

£20 online

BEFORE trialing strictly gluten free diet

Retest thyroid and vitamins and cortisol via Blue Horizon in another 6-8 weeks

In week before blood test, when you stop vitamin B complex, you might want to consider taking a separate folate supplement (eg Jarrow methyl folate 400mcg) and continue separate B12 if last test result serum B12 was below 500 or active B12 (private test) under 70

Recommended that all thyroid blood tests early morning, ideally just before 9am, only drink water between waking and test

This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)

Testing options and includes money off codes for private testing

thyroiduk.org/testing/

Blue Horizon Thyroid Premium Gold includes BOTH TPO and TG antibodies, cortisol and vitamins

bluehorizonbloodtests.co.uk...

BH also offer private blood draw at clinic near you, or private nurse to your own home…..for an extra fee

Only do private testing early Monday or Tuesday morning.

Tips on how to do DIY finger prick test

support.medichecks.com/hc/e...

Come back with new post once you get results

Roughly where in U.K. are you?

Here’s link for how to request Thyroid U.K.list of private Doctors emailed to you, but within the email a link to download list of recommended thyroid specialist endocrinologists

Ideally choose an endocrinologist to see privately initially and who also does NHS consultations so that might eventually transfer to NHS

thyroiduk.org/contact-us/ge...

[Helly75 in reply to SlowDragon]

Thanks slowDragon, I knew how it would go before I even went . My B12 has dropped to 247 ,cortisol is 45 & folate is now 5.6 . I will just have to deal with it all myself when I get the strength. I'm really struggling to stay awake or move at the minute ,feeling very unsafe & neglected by my hospital trust . I'm in Northern Ireland, I've been looking at private endocrinologists here already but finding it difficult because they are probably all diabetes specialists

[SlowDragon Ambassador in reply to Helly75]

Take it one step at a time

Presumably not started B12 yet ….get this ordered along with vitamin B complex - cheapest I could find online. Initially start with 2-3 drops and increase over first week to full dose

naturesbalance.co.uk/produc...?

Start separate B12 first and wait a week before adding vitamin B complex

naturesbalance.co.uk/produc...?

Igennus - easy to cut ….might want to initially start with just 1/2 a tablet or even a 1/4 …..build up slowly to single tablet per day

Meanwhile get other tests organised

Iron panel test first

If GP won’t do it use Medichecks

Come back with new post once you get results

Then organise Coeliac and vitamin D tests

Likely to need to increase dose vitamin D

Retest thyroid and vitamin levels 6-8 weeks after adding last vitamin supplement

[Twixandolive]

I feel very sorry for you and know how you feel, I went to a private endocrinologist fours years ago it was very expensive,

I told her all about my symptoms mainly feeling exhausted all the time and zero sex drive that was causing marriage issues.

She then proceeded to tell me how she didn’t go near her husband and older women get more tired and she said tell your husband to go deal with himself.

I did have thyroid bloods at time and few others but all just hoovering low end nothing out of range. She said nothing in your bloods your just a 40 year old woman with kids go have a spa day I think the appointment ended with.

I should have made a complaint.

I felt stupid and written off.

I have nhs doctors Fri and I think I might cancel as I can’t face the trying to get help

I really hope you find someone who will take your symptoms results seriously as you do and give you the help you need to feel well

🤗 hugs xx

[Helly75 in reply to Twixandolive]

That's so awful! I just don't know how they even get these jobs the way they treat people. Give your appointment a go ,maybe it might be better than you expect xx

[serenfach in reply to Twixandolive]

Just to emphasise how awful this is, imagine saying this to a male patient...

[Twixandolive in reply to serenfach]

She finished off saying go for a spa day!

I was very cross I must admit, as it was very expensive to see her.

I need to find a good endocrinology consultant in Bristol

[arTistapple]

When you think about the sheer numbers of thyroid patients, both satisfied and unsatisfied, that GPs and endocrinologists must see, their ignorance seem to know no bounds. I now doubt medics ability in other areas also.

They don’t even have the respect for the patient to make a decent script to feedback to the patient. Just intransigence and gaslighting.

It’s downright disgusting.

[Helly75 in reply to arTistapple]

Between this lot & cardiologists I'm having the worst time , you wouldn't leave a dog the way I've been left , I don't think I have the strength to keep fighting back ,I'm worn out

[SlowDragon Ambassador in reply to Helly75]

Work on improving vitamin levels

This will help improve your symptoms

If low vitamin levels are CAUSED by sluggish thyroid then improving low vitamin levels will result in TSH increasing so that you can get started on levothyroxine

[Helly75 in reply to SlowDragon]

I've ordered the b12 you'd added in the link yesterday so will get started with that ,already onto the vitamin d & iron . I'm a bit worried about the low cortisol but assuming it's the steroids ,I'm tapered down to 5mg from 40mg & only one week left but I've never felt as bad as I do now ,it's horrible

[SlowDragon Ambassador in reply to Helly75]

Sounds like you have tapered down quite quickly

Took me 3-4 months to reduce and stop 5mg daily

First week stopped 1 day

Waited 2 weeks at this dose

Then reduced two days a week

Waited 2-3 weeks at this dose

Etc etc

[Helly75 in reply to SlowDragon]

Yes did seem a bit odd , was told to taper by 5mg per week ,I look like a hot air balloon too just another thing to deal with

[SlowDragon Ambassador in reply to Helly75]

bloating is common hypothyroid symptom

TSH may rise once off prednisolone

[arTistapple in reply to Helly75]

Helly sorry for not replying. I am having similar problems myself which I am trying to navigate at the moment!

[Helly75 in reply to arTistapple]

Don't worry about it, I totally understand how hard this can be