Can GPs only test thyroid once a year?

[Flaxjax]

I've had a really irritated (not sore) windpipe and what I term low battery (no power in my muscles) for the past week and finally plucked up courage to battle GP system and report my issue. I've become 'aware' of my front throat area (thyroid) and can now feel it ifkwim. I've got a terrible irritated cough and am wheezing somewhat. This cough is the pits and depending on how I lay in bed, it's worse and have been using throat spray with anaesthetic in to numb it so I can sleep. Had an episode of freezing cold chills and woke up boiling on Monday morning. No other symptoms of a virus, chest doesn't hurt nothing. Just this damn cough! Anyway I called GP to get it checked out, first she said basically wait and see if it gets better on its own, no sorry done that already and it doesn't feel right, then when I asked if my thyroid could be inflammed she said well if there's no lump on front then no, I said what if it's irritating on back side of thyroid?, She's said I'll send you for a chest x ray as your thyroid was tested in April and we only test once a year! Is that true? Irrespective of what your symptoms are can GP refuse to test more than once a year? I was gobsmacked! Anyway told her I'd test myself thank you very much but wouldn't it be better to scan my thyroid rather than do a chest x-ray as the issue is in my throat not in my chest... I could have cried after tha call... I know GPs are under pressure but flipping heck I dispair 😕

[Goodytwoshoes]

I was tested in December 2022, April 2023 and June 2023

[Hedgeree]

Hi Flaxjax,

Could you possibly have Covid? A continuous cough was one of the symptoms that I had.

[Flaxjax in reply to Hedgeree]

Hi, good shout but no and I've had COVID at least twice and felt completely different to this 👍

[tattybogle]

The 'once a year' thing is not set in stone... they will sometimes test thyroid function more often than annually if new symptoms of Hypothyroidism or Hyperthyroidism are evident .. but cough is not a symptom of either hypo / hyperthyroidism ..... if it is thyroid related it's more of a structural problem and nothing to do with the over / underactivity of thyroid which is all the blood test is looking at..... but even if it is an enlarged thyroid .. 'cough' is not a very usual symptom for that , so perhaps chest x ray isn't such a bad idea .

I get the impression GP's are actively discouraged from sending patients for thyroid ultrasounds unless they can actually feel a lump/ or see a swelling .

However .... there is a fairly concrete restriction in place at most NHS labs "Do Not Retest TSH within 3 months if previous TSH was in normal range"

[Flaxjax in reply to tattybogle]

Hi thanks for replying. 😊To be clear I certainly wasn't angling for another test, I didn't even ask for one. The GP stated that of her own accord. I was really just interested in what everyone knew and if it was a 'rule' or just my surgery x

[Hedgeree]

I've had success when requesting 'extra' blood tests from the gp by saying I needed them for my endo appointment (even when I didn't actually have an endo appointment!)

A bit naughty but they didn't question it. Obviously if you ask too often they'll suss you out and refuse you anyway. Possibly worth a try?

[Flaxjax in reply to Hedgeree]

Tbh I've just been getting my own tests done so I know what my FT3 is as GP only does TSH (and FT4 if I'm lucky) x

[arTistapple]

It may not be a recognised or common symptom of hypothyroidism but the more I find out about ‘muscle tone’ and the very widespread issues it raises, it makes me think that lack of muscle tone likely contributes to cough/gag reflex, sleep apnoea, pulsatile tinnitus, ear pain, face pain, throat pain, migraine, cluster headaches, oesophageal incompetence, hiatus hernia (silent reflux causing burning in) as well as whole body muscle issues.

However of course the symptoms should be checked for other causes. I always remind myself now that hypothyroidism (my diagnosis) is “The Great Pretender”. It really can emulate just about any symptom picture for any illness.

[SlowDragon Administrator]

Just testing TSH and Ft4 is completely inadequate anyway

Suggest you get full thyroid and vitamin testing done yourself

how much levothyroxine are you currently taking

Do you always get same brand levothyroxine at each prescription

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

Also both TPO and TG thyroid antibodies tested at least once 

Have you had antibodies tested?

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

About 90% of primary hypothyroidism is autoimmune thyroid disease, usually diagnosed by high 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.

Low vitamin levels are extremely common when hypothyroid, especially with autoimmune thyroid disease 

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)

Recommended that all thyroid blood tests early morning, ideally just before 9am and last dose levothyroxine 24 hours before 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

List of private testing options and money off codes

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

Medichecks Thyroid plus antibodies and vitamins

medichecks.com/products/adv...

Blue Horizon Thyroid Premium Gold includes antibodies, cortisol and vitamins

bluehorizonbloodtests.co.uk...

Monitor My Health also now offer thyroid and vitamin testing, plus cholesterol and HBA1C for £65 

(Doesn’t include thyroid antibodies) 

monitormyhealth.org.uk/full...

10% off code here 

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

Only do private testing early Monday or Tuesday morning. 

Link about thyroid blood tests

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

Link about Hashimoto’s

thyroiduk.org/hypothyroid-b...

Symptoms of hypothyroidism 

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

Tips on how to do DIY finger prick test 

healthunlocked.com/thyroidu...

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

[greygoose]

I don't know anything about what GPs can and can't do in the UK - and from what I've read, they seem to be a bit vague about it themselves! - but I do know about coughing. I've been hypo most of my life - I'm 78 - and I've coughed most of my life. And, I know that there is no point talking to a doctor about a cough because they cannot conceive of any other cause than a lung problem. So, the scenario usually goes:

Me: I've got a persistant cough.

GP listens to chest: Well, your chest is clear.

Me: I know that, but my cough isn't coming from my chest, it's coming from my throat.

GP looks at me as if I'm crazy, and changes the subject - usually something like: well, if you lost a little weight...

So, I've given up talking to doctors about my cough and just put up with it. But, I am convinced that anything to do with the throat can - and usually is - to do with the thyroid. Long before I was diagnosed, I suffered a lot with sore throats, lumps in throat, difficulty swallowing, voice loss (often in mid-sentence) and, of course, the cough - and incidently, difficulty breathing which no-one could find a reason for either! An ENT doctor put a camera down my throat and announced that there was absolutely nothing wrong with it - implying that it was 'all in my head'.

He seemed not to be aware that the thyroid was right there next to it, and possibly causing problems. And, neither was I at that time. But, now, I'm pretty sure that my thyroid was probably inflamed was pressing on my oesophagus - yes, doctor, it can be inflamed at the back so not show a lump at the front. I have never had a goitre, I have Ord's.

So, evenutally it all went away by itself, although my voice is now irrevocably changed. So, I'm pretty sure that it went away due to the shrinking of my thyroid due to the Ord's.

Doctors don't know everything - although they talk as if they do - and when it comes to thyroid, they know next to nothing. So, best to take everything they say with a large pinch of salt - especially when they say salt is bad for you!

[Flaxjax in reply to greygoose]

Thank you so much for replying ☺️ I have managed to get an ultrasound ordered of my thyroid and will specifically ask for the back to be scanned (if they can - no idea) but will chat to sonographer about it too and report back. I also know from reading around the subject that you can have nodules on the back only that annoy your esophagus as you say - so sorry you've suffered so long. My call to the GP has as usual made me feel like a fraud for asking for help via a consultation (which ended up being a phone call while I was standing in Sainsbury's car park waiting to go into the mobile breast screening van - first time so nervous) oh the joys of modern healthcare 😭

[greygoose in reply to Flaxjax]

It's terrible, isn't it! But, don't allow them to make you feel a fraud. They do it deliberately because they know they're completely out of their depth with thyroid. And, it's so much easier to just blame the patient. You know your body, you've lived in it for years! They are just guessing. So whose opinion is the more reliable? I know who I'd back any day. I think in my whole life, I've only ever met one doctor I'd trust 100%, and he was a gastro and a gentleman of the old school. They don't make them like that anymore.

[arTistapple in reply to greygoose]

Oh I am so glad to read this experience. As so often, we find so many similar experiences to our own by way of the forum. Saves us some stress knowing it’s far from an isolated incident. At the moment I sound like an old smoker - never having smoked in my life.

[SmallBlueThing]

I've had several bouts of a long-lasting, non-productive cough, and been given the once-over with a stethoscope, and resulting non-productive shrug. Hoarseness, first noticed when I couldn't call my dog from afar and, sometimes, stinging. One GP tried to convince me I had GERD, but a scan 20 years later incidentally reported no evidence of hiatus hernia.

Blood tests were restricted due to a shortage of vacutainers earlier in the COVID-19 pandemic, and that information may still be at the back of your GP's noggin. I think tests were/are allowed with changes of dose and symptoms, as one would expect, but haven't checked. I've not told my GP that I occasionally test, lest it be used as an excuse to limit tests ordered from her side of the desk. Years ago, the mother of a family friend, a near-retirement GP, was furious with me for suggesting any sort of self-diagnosis or self-reliance over health matters.