Thyroid autoimmune disease

[Dustinsdart]

Had blood tests done recently to check for auto-immune issues that could be causing some symptoms I am experiencing & the results have come back that my thyroid peroxidase antibody levels were ‘significantly elevated’ which may indicate thyroid autoimmune disease. They said my level was 283. I’ve been asked to go back to GP for further blood tests & just wondered if anyone could tell me what tests they should be doing or what questions I need to ask. I don’t really know what any of it means.

Did they do a full thyroid blood test? Tsh, t4, ft3? It sounds like it could be hashimotos disease, I have this and it causes underactive thyroid.

@GG1986 thanks. I Just had a read up on hashimotos - I don’t have a goitre but a lot of my symptoms fit.

I’ve been having ongoing issues with a droopy eye for the last couple of years, as well as other more general symptoms like excessive thirst, dry mouth, dry & gritty eyes, blurred/double vision, headaches, dry itchy skin, tiredness, brittle hair/nails, pins & needles in hands, weight gain & struggling to lose weight etc.

Went to GP (again) in November, had blood tests - iron levels normal, thyroid normal, but discovered I am pre-diabetic (though GP said this wouldn’t be causing these symptoms), cholesterol levels slightly raised and vitamin D levels a bit low.

GP referred me to neurology for my droopy eye, had nerve conduction studies and bloods to rule out other auto immune conditions - specifically myasthenia gravis and Sjögren’s syndrome.

Whilst awaiting these test results I’ve had more bloods at the GP and turns out I also now have high blood pressure & high cholesterol. Started meds for high blood pressure about 2 weeks ago.

Test results for Myasthenia /Sjogrens (ANA/ENA) have both come back as normal - didn’t expect the abnormal thyroid test result as I didn’t know they were even checking it!

No idea if they checked TSH, T4 or T3 as no mention in the letter so I will ask about that.

I think it is possible you can have hashimotos but it doesn't affect the tsh and other thyroid hormones straight away, so I think I had hashimotos and high antibodies for years before my thyroid started becoming underactive aged 25, by 27 i got small goitre and by 32 a thyroid ultrasound showed the left side of my thyroid had disappeared. Hope that makes sense. Get some high dose vitamin D as low levels can cause some of your symptoms, but also ask GP if they did a full thyroid panel that included ft3. If they won't do it then you could pay privately via medichecks(finger prick blood test you do at home)

Thanks. I’m at the GP next week for bloods. Consultant neurologist recommended the GP do full thyroid function test plus thyroid receptor antibody. I will ask about T3/T4.

Bloods done, TPO 201 ,TSH 1.5 (lab reference range 0.27-4.5)
Frustrated as they haven’t done the receptor antibody test or T3/T4.
I have appointment with GP next week so will be requesting again that these are done. Failing that I will try your suggestion of medichecks thanks @GG1986 .

Not sure where this will leave me, I have so, so many of the symptoms but with my TSH being in range I suspect they won’t do anything.

@Dustinsdart if TSH and T4 are in range they can't really do a whole lot. You need T4 to be checked to be sure. The symptoms could be caused by something else so at least then you can rule the thyroid out.

GP now wants me to have further bloods to check T3, T4 and receptor antibodies and also to have a scan of my thyroid and is referring me to endocrinology so it’s now a wait to see if anything comes of it. She doesn’t want to start treatment for some of my symptoms (high cholesterol/swelling feet/face etc) until we have the full picture on my thyroid. It may well be that they say this is all down to being overweight and nothing more but I feel happier knowing it is being checked thoroughly. I’m so tired and swollen, just don’t feel right at all.

All your symptoms except for the droopy eyelid. Fit the bill for prediabetes.
Did the doctor put you any medication to treat it. Like Metformin?
The blood pressure, cholesterol and diabetes are linked too.

Thanks @Gubutnik . I am pre-diabetic but my GP told me that I shouldn’t be having symptoms at this stage. They haven’t put me on medication - didn’t think they would unless I was actually diagnosed diabetic?

Seeing the endocrinologist this week but my T3/T4 blood results have come back normal so suspect they will say it’s unlikely my thyroid, though I still want to rule out other autoimmune possibilities.

New complication is that I found a lump in the side of my neck before the summer holidays - it’s hard and it’s growing so have been referred for an ultrasound this week. They are also going to scan my thyroid at the same time.

Talk to the endocrinologist about your pre-diabetes. Metformin will help insulin resistance. Help get your weight back in control. Help the symptoms now like the vision changes and tingling nerves, and to reduce or delay the risk of type 2 diabetes.

I will do. I’m already actively trying to lose weight but I’m struggling. My job is inactive (desk work) and every evening I’m tied up ferrying kids about to clubs then by the time I get home, cook tea & get the kids to bed I’m just so exhausted I fall asleep as soon as I sit down.

I had my antibodies tested in 2015 - TPO over 1000 and Tg 600 range. Ultrasound shows severe thyroiditis. I have my thyroid function checked every year and it’s always at the lower end of the range, hovers around 10/11 (range 9-24) and seems to be still holding its own. Won’t get any sort of medication unless TSH goes over 5.0 or T4 under 9.

It’s madness that they don’t treat until there’s enough damage done to the thyroid that it stops working properly. I could never wrap my head around that. I’ve had many a frustrated conversation with GPs over it. They don’t treat the symptoms they treat the numbers! Was almost willing my thyroid to give up the ghost (lab wise) so I’d get thyroxine but I’ve given up now.

Also I tried a gluten free diet for a few years but it made no difference to my antibody numbers so I went back to enjoying bread and pasta again!

@FlyingUnicornWings all they'll do to treat it though is give you replacement thyroid hormone which you don't need yet if your numbers are in range.