Getting ready for Endo

[Lawzef90]

Both tests conducted on an empty stomach at 8.30am.

Previous bloods in May;

Tsh 1.9, range 0.35 to 4.94

Ft4 14, range 9 to 20

Ft3 5.6, range 2.4 to 4.6

Vit b12 345, range 183 to 885

Vit d 28, range 50 to 150

My recent bloods from June;

Tsh 1.9, range 0.35 to 4.94

Ft4 14, range 9 to 20

Ft3 6.0, range 2.4 to 4.6

Parathyroid 4.6, range 4.6 to 6.9

I have a family history of thyroid issues, mainly underactive thyroid.

My symptoms have been;

Anxiety, nervousness, insomnia, fatigue, lethargic, swelling of the neck, constipation/frequent bowel movements (this hops about), heat intolerance, lack of energy and out of breath for simple tasks and pins and needles.

I have been keeping a symptom diary since May, food diary and pictures of my neck when its swollen. I have had an ultrasound last Monday but the results are still not back yet.

I currently have no symptom management apart from over the counter herbals eg camomile to help with sleep (doesnt really work), self medicated supplements for b12 and d3, which has been changed off the back of forum suggestions to try and boost it. GP is hesitant to start me on anything and after some pushing theyre referring me to an Endocrinologist.

Any suggestions for during my appointment? I just want the right help as its impacted my work. Luckily theyre allowing me to work from home but im still in probation which doesnt help matters.

Ps. Im an MHFA so have read up on techniques for anxiety but its hard to manage as no set triggers. Ive also been tested for IBS and this came back normal.

Thanks in advance!

[SlowDragon Administrator]

Have you actually got an endo appointment?

Even under normal circumstances it can be several months wait. Likely much longer at moment

As per previous reply

Getting BOTH thyroid antibodies tested (most likely privately)

Folate and ferritin

Plus coeliac blood test

Obviously ultrasound may show something useful

[Lawzef90 in reply to SlowDragon]

Theyve referred me for an appointment. My GP wont do anything until theyve reviewed. Aww really that long? Grr!!

Theyve only checked TPO not TG. Ive requested all of these tests but they wont do anymore until my Endo appointment which is really frustrating.

I am really tempted to go private because my symptoms are frustrating and impacting my work life as well as home life due to heat intolerances etc.

[SlowDragon Administrator in reply to Lawzef90]

First step is ALWAYS to get full blood tests

Before consider booking any private consultation

For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also EXTREMELY important to test vitamin D, folate, ferritin and B12

Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .

This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)

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

List of private testing options

thyroiduk.org/getting-a-dia...

Medichecks Thyroid plus ultra vitamin

medichecks.com/products/thy...

Medichecks often have special offers, if order on Thursdays

Thriva Thyroid plus vitamins

thriva.co/tests/thyroid-test

Blue Horizon Thyroid Premium Gold includes vitamins

bluehorizonbloodtests.co.uk...

If TPO or TG thyroid antibodies are high this is usually due to Hashimoto’s (commonly known in UK as autoimmune thyroid disease).

About 90% of all primary hypothyroidism in Uk is due to Hashimoto’s. Low vitamin levels are particularly common with Hashimoto’s. Gluten intolerance is often a hidden issue to.

Link about thyroid blood tests

thyroiduk.org/getting-a-dia...

Link about Hashimoto’s

thyroiduk.org/hypothyroid-b...

List of hypothyroid symptoms

thyroiduk.org/signs-symptom...

Getting coeliac blood test too

[SlowDragon Administrator in reply to Lawzef90]

Vitamin D obviously very low

Suggest you wait minimum 6 -10 weeks after starting on vitamin D supplements to get full thyroid and vitamin testing

[Mickeydooley in reply to SlowDragon]

Can I just ask if her symptoms might be connected to her high FT3? I know when mine is high I get symptoms like those.

[SlowDragon Administrator in reply to Mickeydooley]

I suspect it’s early stage Hashimoto’s

But could be hot nodule

So it’s why need ultrasound and full testing including folate and ferritin

Obviously vitamin D very poor and won’t be helping

B12 low too, so folate may be as well

[Lawzef90 in reply to SlowDragon]

My folate was low in my blood tests at the start of last year and i take methyfolate supplements for this and have done so for over a year. TPO was apparently normal, ive asked for my blood tests for the last couple of years to be printed. TG wasnt tested and wont be tested now unless endo advises it. GP wont be doing anymore tests until theyre advised by the specialist.

Ultrasound results and report still not back yet but my neck has swollen again.

Ive had a coeliac test around 2 years ago and this was negative, but i have been on a gluten free diet all this year anyway, as i get less bloating with it.

Im ultimately not looking for a diagnosis off this forum as thats what the endo is for, but im wondering if my symptom diary, food diary is enough for when i go to this appointment or if i should be sharing anything else?

[SlowDragon Administrator in reply to Lawzef90]

As you are gluten free this frequently results in TPO antibodies dropping

Gluten intolerance EXTREMELY Common common with Hashimoto’s

Low vitamin levels also indicative of Hashimoto’s

NHS refuses to test TG antibodies at all if TPO antibodies are negative

So endo highly unlikely to test

We have quite a few members on here who only have high TG antibodies and struggle to get diagnosed

Or 20% Hashimoto’s patients never have high thyroid antibodies at all

pubmed.ncbi.nlm.nih.gov/303...

Paul Robson on atrophied thyroid - especially if no TPO antibodies

paulrobinsonthyroid.com/cou...

As low folate and Low vitamin B 12 you may be better off supplementing a daily good quality vitamin B complex that has folate in, (not folic acid)

This would keep all B vitamins at good levels

B vitamins best taken after breakfast

Igennus Super B is good quality and cheap vitamin B complex. Contains folate. Full dose is two tablets per day. Many/most people may only need one tablet per day. Certainly only start on one per day (or even half tablet per day for first couple of weeks)

Or Thorne Basic B or jarrow B-right are other options that contain folate, but both are large capsules

If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 7 days before any blood tests, as biotin can falsely affect test results

endo.confex.com/endo/2016en...

endocrinenews.endocrine.org...

Low B12 symptoms

b12deficiency.info/signs-an...

Ferritin often low too

[Lawzef90 in reply to SlowDragon]

Should i be sharing anything in addition to a food diary and symptom diary with the Endo?

[SlowDragon Administrator in reply to Lawzef90]

Endocrinologist may be completely disinterested in food or vitamin levels, other than deficiencies or confirmed coeliac

Gluten intolerance is probably not something an endocrinologist will recognise

[Lawzef90 in reply to SlowDragon]

Okay, so a symptom diary may be enough?

[SlowDragon Administrator in reply to Lawzef90]

What ever you give them keep it short

A page maximum

Short bullet points

Include that you are gluten intolerant

List vitamin deficiencies and supplements taken

Never mention Internet forums either

[Lawzef90 in reply to SlowDragon]

Thank you thats really useful!

[SlowDragon Administrator in reply to Lawzef90]

Perhaps include this list ...ticking all that apply

thyroiduk.org/wp-content/up...

[Lawzef90 in reply to SlowDragon]

That is definitely a useful list. I will tick those off, thank you!

[Lawzef90]

So my ultrasound came back today and apparently all normal which im relatively surprised at because my neck always looks swollen.

Based on this, the only things then is my abnormal FT3, and deficiencies in vit b, d and previously folate. Im really hoping they help me as my symptoms are interfering so much now!