Is there such a thing as recurrent thyroiditis? - Thyroid UK

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Is there such a thing as recurrent thyroiditis?

rowanbovis profile image
12 Replies

Hello everybody,

I am new here but have been reading various posts for the last week - what a wonderful forum to find.

I have been on Lithium for bipolar since I was 21 (31 years) and over the last 23 years have had 4 bouts of thyroiditis with hyper symptoms. I have been feeling unwell for a few weeks, thought it was a bipolar relapse but the blood test read:

TSH <0.05 [0.3-5.5] pmols

T4 34.7 [12-22]

T3 14.8 [3.1-6]

I am cold but then have fierce hot flushes, hair coming out, itchy all over, palpitations and generally racing heart, muscle weakness (can you open this please?), trembly legs, stiff joints, gritty eyes, disturbed sleep and I am exhausted.

Have also had fingernails like corduroy for many years.

I have a telephone consultation with an endo in 2 weeks. Can anyone tell me if my results are dangerously high or manageably so.

Thank you

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12 Replies
greygoose profile image
greygoose

Is this the first blood test for thyroid that you've had? If not, what were the others like?

Sounds to me as if you could have Hashi's - autoimmune thyroiditis. So, what you want to ask your endo is to have your antibodies tested:

TPO ab for AT

TRAB or TSI for Graves.

Then, you'll know what you're dealing with.

rowanbovis profile image
rowanbovis in reply to greygoose

Thank you Greygoose, I have had my TFTs done atleast once every year for the last 31 years because of being on Lithium but never asked for the numbers before. I did have a scan for the 2014 occurrence which showed inflamation. There was no development of illness.

I thought Hashimotos gave high TSH and low T4 and T3?

greygoose profile image
greygoose in reply to rowanbovis

Hashimoto's swings between hypo - high TSH and low T4/3 - and false 'hyper' - low TSH and high T4/3. Which is why I asked about previous test results.

I understand that lithium can cause hypothyroidism, but I didn't think it could cause swinging between the two, like Hashi's. So, it would be a good idea to get antibodies tested, anyway. :)

radd profile image
radd

rowanbovis,

Welcome to our forum, & sorry you are feeling so unwell.

I take it you are not medicating thyroid hormone replacement?

Your results indicate a pituitary that is pushing out TSH, resulting in elevated thyroid hormones which are both well over range and could be the cause of your symptoms.

There is such a thing as recurrent thyroiditis, although your recurrences are a long way spaced apart so finding the cause is the issue. I don't know a lot about bipolar but lithium is known for its ability to alter normal thyroid function, and you could ask your endo for thyroid antibody tests to eliminate autoimmune disease.

Hope you feel better soon.

rowanbovis profile image
rowanbovis in reply to radd

Thankyou radd, The trouble is, bipolar symptoms can be very similar to hyper/hypo thyroid ones. Factor in menopause symptoms and the confusion is endless - I am wondering if I have had more episodes of thryoid that I put down to other these other things and therefore didn't ask for a test. With Lithium you only have routine TFTs once a year.

Why do think my pituitary is involved? This is interesting. No I am not on any medicines yet though gp did offer propranolol.

radd profile image
radd in reply to rowanbovis

rowanbovis,

Yes, there have been other members with bipolar & thyroid disorders on the forum and even one of our admins several years ago.

Propranolol is a beta blocker. Thyroid problems can cause heart issues and anxiety much like bipolar I guess, and the fluctuating hormones of menopause can exacerbate everything.

The pituitary hormone is the driver behind thyroid hormones and the hypothalamus hormone is the driver behind the pituitary. It creates a negative feedback loop and an alteration in any of these can result in dysregulation in the thyroid gland. Parts of this axis are also a part of other axis joining many glands and hormones together.

Hashimotos does give a high TSH and low thyroid hormone test results but in between when thyroid antibodies are attacking, huge amounts of hormones are released that can make you feel hyper, and give the opposite bloods results.

rowanbovis profile image
rowanbovis in reply to radd

Wow, radd, that's brilliant of you to explain the loop. Thank you very much. So are you saying that bipolar/thyroid combination is often a pituitary issue? Or that all thyroid illnesses are? Some of the web wormholes I went down actually suggests a link at gene level between bipolar and thyroid problems. Not that this is much help at present. I wish I'd said yes to the propranolol as heart rate is uncomfortable and worrying.

radd profile image
radd in reply to rowanbovis

rowanbovis,

Like I said above I don't know a lot about bipolar so would be hesitant to suggest any connection as absolutely do not know.

My reference to the pituitary was only to explain thyroid physiology and how everything is interconnected.

What I did suggest above was to ask for thyroid antibodies to be tested regarding the thyroditis because those hormonal rearrangements could be the cause or contributing to your symptoms.

Meanwhile, if you feel you need the propranolol contact your GP. Post any other questions coz members are very friendly 😊.

SlowDragon profile image
SlowDragonAdministrator

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

Low vitamin levels are extremely common, especially if you have autoimmune HYPOTHYROID thyroid disease (Hashimoto's) diagnosed by raised Thyroid antibodies

Hashimoto’s frequently has transient hyperthyroid results and symptoms

You need Graves’ disease antibodies tested to see if you have autoimmune hyperthyroid

Graves Disease antibodies test

medichecks.com/products/tsh...

It’s also possible to have Hashimoto’s and Graves’ disease at same time

Ask GP to test vitamin levels

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)

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 antibodies and vitamins

medichecks.com/products/adv...

Thriva Thyroid plus antibodies and vitamins By DIY fingerpick test

thriva.co/tests/thyroid-test

Thriva also offer just vitamin testing

Blue Horizon Thyroid Premium Gold includes antibodies, cortisol and vitamins by DIY fingerprick test

bluehorizonbloodtests.co.uk...

If you can get GP to test vitamins and antibodies then cheapest option for just TSH, FT4 and FT3

£29 (via NHS private service ) and 10% off down to £26.10 if go on thyroid uk for code

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

monitormyhealth.org.uk/

NHS easy postal kit vitamin D test £29 via

vitamindtest.org.uk

Link about thyroid blood tests

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

Link about Hashimoto’s

thyroiduk.org/hypothyroid-b...

Link about Graves’ disease

thyroiduk.org/hyperthyroid-...

Mental issues including Bi-polar and autoimmune Hashimoto's

drknews.com/when-hashimotos...

holtorfmed.com/mental-illne...

thyroidpharmacist.com/artic...

hypothyroidmom.com/miss-dia...

ncbi.nlm.nih.gov/pmc/articl...

ncbi.nlm.nih.gov/pmc/articl...

rowanbovis profile image
rowanbovis in reply to SlowDragon

Thank you very much.

Valarian profile image
Valarian

Lithium can have a variety of effects on the thyroid, you may find this article interesting: thyroidresearchjournal.biom...

Your current thyroid levels are certainly high enough to explain your symptoms. If they remain at that level, your heart will be under some strain. This could be helped in the short term with a prescription for beta blockers , propranolol being the usual first choice for people with hyperactive thyroids, but although this will help the symptoms, it will have little effect on your thyroid levels and if they remain this high, you will almost certainly need treatment to bring them down.

To find out what is causing your thyroid to be hyperactive, you need further tests including (as others have said) antibody tests for both Hashimoto’s and Graves’ diseases, and possibly thyroid scans. Lithium can induce elevated thyroid levels and also autoimmune conditions such as Hashimoto’s or Graves’ in those with a genetic predisposition. You might also have had thyroid problems at some point even if you hadn’t been taking lithium.

If this is Hashi’s, your thyroid levels will eventually drop as the body’s store of thyroid hormones is exhausted. If it’s lithium-induced thyroiditis (ie not an autoimmune disease) or Graves’, you are likely to need anti-thyroid treatment (eg carbimazole) to bring your thyroid levels back into the reference range.

You probably feel pretty awful at the moment, the symptoms of being hyper are bad enough for those of us lucky enough not to need lithium treatment. The good news is that once your thyroid levels are being brought under control, you should begin to feel a lot better within 4-8 weeks, although if it does turn out to be Graves’ disease, your overall treatment will last at least 12-18 months and although you should feel a lot better quite quickly, it may be some time before you are completely well again.

During your appointment, you could ask your doctor to explain what they think is causing your hypothyroidism

and why, and what treatment and tests they propose both now and in the longer term. Given your thyroid levels and natural concern, your memory is probably shot to pieces at the moment (mine was like a sieve), so if you can, have a friend or family member with you on the call and to make notes and ask any questions you forget to ask (you could make a list beforehand). You could also ask the doctor to send you a written summary of your discussion afterwards- they should write to your GP anyway, so a copy of this would do (and if the specialist doesn’t send you a copy, you can request one from your GP surgery)

You may find these links helpful:

thyroiduk.org

btf-thyroid.org/thyroiditis

btf-thyroid.org/Pages/Categ...

rowanbovis profile image
rowanbovis in reply to Valarian

Thank you. I thought my appointment was going to be on Monday just gone, but it turned out to be a phone call appointment to tell me about the phone call appointment in 2 weeks time. I'm surprised that the endocrinologist thinks it's enough just to talk to me on the phone, trusting the push me/pull me/reflexes/eye movement examination the trainee GP undertook. So I had already made a comprehensive list of things to ask, ask for and tell and am feeling more clued up thanks to all the fabulous replies I have had.

Hopefully he will be able to explain these apparent bouts of self-limiting hyperthyroidsm.

Made it to Lidl today!

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