can anyone advise me please

[Sully12]

hi all thank your letting me join x x

Can anyone advise me I had thyrotocosis and was told it was getting better after a lot of scans etc I have received a letter saying

They have booked a telephone appoint with a clinical nurse specialist ( endocrinology )

Can any one advise me what this could be for please as I looked what a CNS nurse was and it confused me more

So any advise would be great

Thanks you all

[SlowDragon Administrator]

Welcome to the forum

Presumably this appointment is to discuss your current symptoms and recent blood tests

Have you got copies of test results

How do you feel

Are you currently taking any medication

Bloods should be retested 6-8 weeks after each dose change

For full Thyroid evaluation you need TSH, FT4 and FT3 tested

Also both TPO and TG thyroid antibodies tested at least once

And if hyperthyroid TSI or Trab antibodies tested

Very important to test vitamin D, folate, ferritin and B12 at least once year minimum

Low vitamin levels are extremely common with autoimmune thyroid disease

For good conversion of Ft4 (levothyroxine) to Ft3 (active hormone) we must maintain GOOD vitamin levels

What vitamin supplements are you taking

Also VERY important to test TSH, Ft4 and Ft3 together

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)

Private tests are available as NHS currently rarely tests Ft3 or all relevant vitamins

Post all about what time of day to test

healthunlocked.com/thyroidu...

Testing options and includes money off codes for private testing

thyroiduk.org/testing/

Medichecks Thyroid plus BOTH TPO and TG antibodies and vitamins

medichecks.com/products/adv...

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

bluehorizonbloodtests.co.uk...

Only do private testing early Monday or Tuesday morning.

Link about thyroid blood tests

thyroiduk.org/testing/thyro...

Tips on how to do DIY finger prick test

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

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

[Sully12 in reply to SlowDragon]

Hi many thanks for your response I have had a lot of test done as I had no tsh levels for a long time they was below <0 I have a lot of scans done and breathing tests my last scan was a nuclear medical scan where they injected me with radio active solution but I had a letter saying my thyroid soaked up the solution so was ok I am taking carbamizole for my thyrotoxixosis for another yr then being taken off them to see if it comes back I already have pernicious anemia b12/folate defiency due to the anti par cell antibody I’m also iron defiency and vitam D one of the letters said I was at risk of end of life organ failure so the letter saying a clinical nurse specialist scares me a lot as I know most Cns nurse deal with cancers my fbc is also very bad as I have high wbc and it’s not good with my ET

Many thanks for any advise or help

Thank you Michelle

[SlowDragon Administrator in reply to Sully12]

Just testing TSH is completely inadequate

You ALWAYS need TSH, Ft4 and Ft3

Please add most recent vitamin results

Say exactly what vitamin supplements you are taking

[Sully12 in reply to SlowDragon]

Hi thank you so much for taking a look at my results I also have factory laiden with a hetro mutation , protium s and protein c defiency , essential thrombocytopenia multiple lung nodules on both lungs ,

I currently take

folic acid,

iron pills

vitamin D supplements

Hydrocababalom B12 injections

I have a lot of other illness as well and take other medications , it’s so frustrating as I’m not getting better or any real answers and as I have children it’s important for me to know so once again thank you so much for any advice you can give me

Liver function

[Sully12 in reply to Sully12]

thank you

T3

[Sully12 in reply to Sully12]

t4

T4

[Sully12 in reply to Sully12]

es rate

Esr

[Sully12 in reply to Sully12]

urate

Results

[Sully12 in reply to Sully12]

Creatine ( I am of Spanish blood )

Result

[Sully12 in reply to Sully12]

kidney

Results

[Sully12 in reply to Sully12]

liver

Results

[Sully12 in reply to Sully12]

full blood count two weeks ago the wbc was 21

And platlets was 401

Results

[Sully12 in reply to SlowDragon]

I also feel very unwell I have infections on my chest every month pains by my lungs and I sweating very bad day and night a cold clammy sweat but taking the

Amount of steroids and antibiotics I am taking are not good for me

I have b12 injections every 2 mths as it was so low it gave me epilepsy I take folic acid iron and vit d every day

Once again

Thanks you