No Endo appointment for 18 months and struggling for information

[Asatess]

A couple of blood tests in April showed hyperthyroidism. I’ve no real symptoms. GP examined me and referred me to an NHS endo, who asked for bloods and neck scan. But no appointment for 18mths. I therefore saw a private endo 3 weeks ago who after examining me said 99.9999% Graves and neck scan is a worthless tick box exercise. Both GP and private endo said they couldnt feel anything in my neck. I started on meds 10 days ago. I went for my neck scan 3 days ago, and to my surprise was told I one large and 1 small nodules. I’ve an urgent FNA this week. No one is giving me any explanations about anything. I’ve not had a TRAb test. Have I got Graves, have I got cancer? Have I got both? Or none?

[SlowDragon Administrator]

welcome to the forum

Please add any results and ranges that you have already had tested

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

Also both TPO and TG thyroid antibodies tested at least once for Hashimoto’s (autoimmune hypo)

Hashimoto’s frequently starts with transient hyperthyroid type results and symptoms before becoming increasingly hypothyroid and can be misdiagnosed as Graves’ disease

About 90% of primary hypothyroidism is autoimmune thyroid disease, usually diagnosed by high TPO and/or high TG thyroid antibodies

Autoimmune thyroid disease with goitre is Hashimoto’s

Autoimmune thyroid disease without goitre is Ord’s thyroiditis.

Both are autoimmune and generally called Hashimoto’s.

Significant minority of Hashimoto’s patients only have high TG antibodies (thyroglobulin)

20% of autoimmune thyroid patients never have high thyroid antibodies and ultrasound scan of thyroid can get diagnosis

In U.K. medics hardly ever refer to autoimmune thyroid disease as Hashimoto’s (or Ord’s thyroiditis)

Link about Graves’ disease - autoimmune hyper

thyroiduk.org/hyperthyroid-...

Graves Disease antibodies test

medichecks.com/products/tsh...

Could be a Hot nodule

mayoclinic.org/diseases-con....

Very important to test vitamin D, folate, ferritin and B12. Low vitamin levels are extremely common with any autoimmune thyroid disease

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...

Link about Hashimoto’s

thyroiduk.org/hypothyroid-b...

Symptoms of hypothyroidism

thyroiduk.org/signs-and-sym...

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

[pennyannie]

Hello Asatees and welcome to the forum :

Graves is diagnosed by positive and over range TSH - Thyroid Receptor TRab - antibodies in your blood :

Are you already diagnosed with a thyroid health issue ?

Have you a Free T3 and Free T4 blood test readings there and if you care to share what results you have so far we can try and explain things to you.

Nodules can cause ' hyper ' type symptoms - what symptoms are you dealing with ?

Graves is said to be life threatening if not medicated and would imagine if Graves or cancer suspected you would have been fast tracked by the NHS.

[Asatess in reply to pennyannie]

Thanks for the reply. I’ve no symptoms at all. But a routine blood test showed hyperthyroidism and another 2 repeats showed the same. My GP won’t offer a TRAb test. I’ve had one done privately but waiting on results.

I’ve been started on 20 mg carbimazole with the GP managing my treatment because of the NHS endo waiting list. However I never see the same GP twice. And they don’t know much about thyroid issues. I’ve a repeat blood test in 6 weeks.

The neck scan has thrown me a bit. As I wasn’t expecting them to find anything. And have had no explanation as to why I need a FNA

Hand writing

[pennyannie in reply to Asatess]

Ok - so with a TSH suppressed down at 0.01 - and Free T3 and FreeT4 way over range this looks like Graves as I don't think nodules alone would cause such high levels.

So Graves is an Auto Immune disease for which there is no cure and the treatment is with an Anti Thyroid drug such as Carbimazole or Propylthiouracil - PTU - which semi-blocks your new own daily thyroid hormone production and these over range T3 and T4 blood tests should start to fall back down into the ranges - and the TSH may be slow to respond as very much under control of your immune system at the moment -

and all this AT drug does in ' buy you time ' while we wait for your immune system to calm back down again and hopefully your thyroid return to normal function and in range readings without the need for any drugs.

Quite why you immune system has turned and started attacking your thyroid being the 64 million $ question and with you best placed to know what may have happened.

There's likely a genetic predisposition but something has triggered your immune system to malfunction.

Why did you go to the doctor and a full thyroid panel run - as you surely must have had some symptoms of something ?

Have you noticed a fine tremor on your middle finger ?

Most recent research if your bloods come back positive for Graves -

pubmed.ncbi.nlm.nih.gov/338...

ncbi.nlm.nih.gov/pubmed/306...

All things Graves Disease - elaine-moore.com

[Asatess in reply to pennyannie]

I’m 61, with high blood pressure since my early 40s, on HRT. Every 4 years I have blood tests and these include thyroid. So the last test before this was 2020. So I’ve no idea how long this issue has been there. I’ve not lost weight, am in 2 running clubs. But I AM always hot, which I put down to ongoing menopause symptoms. Personally I can’t see a tremor, but the private endo said she could. I assume she has a better idea what she’s looking for.

So if it’s graves, is whatever they’ve found on my thyroid likely to be related?

[pennyannie in reply to Asatess]

I do not know the answer to that question but would think not as it didn't happen to me and I've not read of such - but, so, that doesn't mean there isn't a connection.

I had a fine tremor when a piece of paper was placed on my outstretched hand palm face down.

Any issues with your eyes - dry, gritty, watering, light sensitive ??

Graves has blocking and stimulating antibodies which can cause either blocking or stimulating symptoms causing a roller coaster of hyper and hypo type symptoms - while for others these extremes of symptoms can cancel each other out leaving the patient feeling relatively normal for them.

Not everybody looses weight - my only new symptom was insomnia - ( now realise I had been undiagnosed Grave/hypo since a child ) and looking back I was physically threatened and verbally abused by a man I employed as my assistant manager 3 months prior to my diagnosis ??

Graves can be triggered by a sudden shock to the system, like a car accident or sudden unexpected death of a loved one - or can occur simply out of the blue !!

Impressed you manage to get run a full thyroid panel on the NHS even if only every 4 years - I have to pay privately for mine and now self medicate my thyroid hormones replacement as the NHS have withdrawn certain treatment options due to the cost.

[Asatess in reply to pennyannie]

Since my blood tests in 2020 my mother has died. I developed burning mouth syndrome almost immediately which is very much stress related for me. So who knows?

Can I just say thank you so much for taking time out of your Sunday to advise me. In the last 4 weeks I’ve spend £300 on a private endo and £135 on a private TRAb test, and I’m still relying on strangers on the internet to help. 18 months for an endo appointment on the NHS is soul destroying when you’re needing advice and information.

[pennyannie in reply to Asatess]

No worries at least we have this health affirming patient to patient forum now -

back in 2005 I was totally in the dark and in shock and simply followed the mainstream medical advice and drank down this Radio Active Iodine and longer term made myself much more unwell for which I had no help nor understanding from mainstream medical and now self medicating, looking after myself, and much improved.

I have some understanding of ' burning mouth ' and prior to being ' attacked ' lost my father, only brother ( 4 years older than me ) and my mother within 6 years of each other - my much younger sister( 13 years younger than me ) was producing 4 daughters throughout my caring for my mother and brother so I had some positives in the negatives - but had a horrible times one way and another and think this unprovoked attack simply triggered my smouldering Graves.

No two peoples journey with Graves is the same and why it's so poorly understood - but stress and anxiety do appear to be common triggers.

Please keep us in the loop :

[bantam12 in reply to Asatess]

Graves along with nodules is not uncommon, most will be benign but some not.

[pennyannie in reply to pennyannie]

Vancats

[pennyannie in reply to pennyannie]

Vancats

[Hectorsmum2]

If your nodules did turn out to be cancerous ( they often dont) it would need to be treated but prognosis is very good and treatment does not usually involve chemo.

[Asatess in reply to Hectorsmum2]

I know. I just wish I could get that into my brain! No matter what the outcome, it can’t be worse than this bit.

[Scotlad76]

In my experience you'll be lucky to find any UK GP that will increase your levothyroxine with a tsh that low.

[Gingernut44 in reply to Scotlad76]

Asatess is HYPERthyroid and is on an anti thyroid medication, carbimazole, not Levothyroxine.