Frustrated: Hi All, Well where do I start.. I... - Thyroid UK

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Irch85 profile image
13 Replies

Hi All,

Well where do I start..

I've been really poorly for 6+ weeks..

Enlarged Lymph Nodes - Painful

Swollen Thyroid

Hot/Cold Flushes

Aches

Chronic Fatigue

Tests FBC, TSH, Mono, U+E, Cholesterol

All came back within normal range apart from my Cholesterol which was 5.3. I'm 32 and was before all this in reasonable health, keep myself active and eat a balanced diet.. (with regular helpings of cake) haha 🍰

I have been referred to ENT but feel like I'm going round in circles, I had the same thing occur last year but the Ultrasound was clear, diagnosed with a Goitre with no follow up...

Gradually things returned to 'normal' but this enormous lump is back with a vengeance and I'm feeling rather crappy too..

Any help would be a massive help right now 😊 x

Emma.

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Irch85 profile image
Irch85
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13 Replies
SeasideSusie profile image
SeasideSusieRemembering

Irch85 You need more than TSH testing for your thyroid, especially considering you have a goitre.

What you need is

TSH

FT4

FT3

Thyroid antibodies - Thyroid Peroxidase (TPO) which is rarely done on the NHS, and Thyroglobulin (TG) which is almost never done. Both need to be done because you can be negative for TPO but positive for TG. Positive antibodies would confirm autoimmune thyroid disease which is quite likely when a goitre is present. The fact that "things returned to 'normal' but this enormous lump is back with a vengeance" does hint at autoimmune thyroid disease because antibodies fluctuate and cause fluctuations with symptoms and test results.

It would be useful to have vitamins and minerals checked too, because low levels are common with us Hypos, especially so with autoimmune thyroid disease. You need

Vit D

B12

Folate

Ferritin

If your GP can't get all tests done (and FT3 and both thyroid antibodies are doubtful) then you can get a private fingerprick test to do at home from Blue Horizon or Medichecks which covers all those tests

bluehorizonmedicals.co.uk/t...

medichecks.com/thyroid-func...

By the way, high cholesterol is a symptom of hypothyroidism and often corrects itself when on thyroid meds.

A referral to an endocrinologist would be more useful than one to ENT. But be aware that most endos are diabetes specialists, very few specialise in thyroid.

Irch85 profile image
Irch85 in reply toSeasideSusie

Thank you so much for all this info, I will be booking in with my doctor for a repeat bloods but now for all the relevant ones 👍🏼

I do honestly feel like I'm going mad, the doctor asked if I was actually depressed, I honestly feel really happy with life currently so dismissed his comment, just feel ignored and dismissed..

Sorry one more question, is it common to still have painful swollen glands? I have a pea sized lump actually on my goitre..

Will post a pic of my Goitre, would like people's opinion of wether they think it's large, normal, etc etc xx

Thank you again SeasideSusie xx

SeasideSusie profile image
SeasideSusieRemembering in reply toIrch85

I've never had painful swollen glands, but that doesn't mean that they can't be connected.

Post your picture in a new thread, you can add one picture in the first post of a thread. I'd leave it until tomorrow now if I were you, not very many of us still around this late.

Don't get saddled with a diagnosis of 'depression', make sure there's no hint of it on your records, if there is then insist it is erased.

If you manage to get antibodies tested and it's only TPO and comes back negative, it's recommended to get the TG antibodies done privately if necessary (in with those test bundles mentioned), or a basic TSH/FT4/FT4/TPO/TG test with either company mentioned.

Irch85 profile image
Irch85 in reply toSeasideSusie

Cheers so much for all the info, it's really appreciated x

Nanaedake profile image
Nanaedake in reply toIrch85

I agree with Seasidesusie , don't let the doc lead you down the depressed patient route. Stick to your guns. Your thyroid needs sorting. It's out of balance and that's what is causing symptoms. Check that GP has not put it on your notes.

Irch85 profile image
Irch85 in reply toNanaedake

thanks so much, I will make sure that it's not documented I'm depressed as I feel far from that x

in reply toIrch85

Persistant swollen lymph nodes can be a symptom of Sjögren's Syndrome, as might all the rest of your symptoms. I suggest you ask your GP for a full blood count - especially white and red blood blood cells plus inflammation markers and autoimmune antibody panel to be tested including ANA, RF plus Ro & La antibodies.

It can take people many years to get a diagnosis but it's worth looking at this and other diseases rather than only at thyroid disease, if your glands are so swollen. Stand firm and don't let the GP make you feel foolish or dismissed please!

patient.info/doctor/sjogren...

Irch85 profile image
Irch85 in reply to

Hi

Thank you Twitchytoes for all your info, much appreciated..

I was diagnosed with Raynaud's Disease when I was about 14, attacks then were daily, as I've got older they have become less until recently..

I have checked out Sjögren's Disease and I just don't think I fit the majority of symptoms..

More of my symptoms are:

Loss of pubic hair

Difficultly swallowing

Loss of hair

Brittle nails

Weight fluctuation size 10-16 in months

Back to a steady 12 now and seem to be maintaining.

Hoarse voice constantly

Tired, even the easiest of tasks get too much.

Breathless on walking up the stairs or on exertion.

I will post a pic of my Goitre, would appreciate any comments x

Thanks

Emma

in reply toIrch85

I have all of these symptoms too. Sjögren's isn't just dry eyes and mouth (mine aren't too bad) - it's a multisystem disease affecting the entire body just like Lupus - they are often interchangeable. My Hashimoto's is part of my Sjögren's because Sjögren's attacks the thyroid - so many with Sjögren's also have thyroid disease, goitres etc.

Irch85 profile image
Irch85 in reply to

Oh wow!! I didn't realise that, thanks for the info x

in reply toIrch85

You're welcome even most GPs never think of Sjögren's although it's the second most common rheumatic disease! I'm not saying that you have Sjögren's of course but most with Sjögren's develop a hoarse voice and some get very swollen lymph nodes - it puts sufferers with seropositive bloods at an increased risk of Lymphoma. The information given out can be very misleading. This link is very helpful academic.oup.com/rheumatolo...

Irch85 profile image
Irch85 in reply to

Thank you, I've certainly got the hoarse voice, and swollen glands x

in reply toIrch85

Could be many things of course but definitelyworth pushing for basic blood tests to rule out autoimmunity hopefully.

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