Thyroiditis and TRAb antibodies? Can they co-exist?

[Someome]

Hi,

I was thinking of my thyroid history (warning! Long!). So, I had a very bad cold last December 2019. Then I started getting this heartbeat sound in my ears when I laid down flat, shortly after the cold went away.

I thought I heard the heartbeat in my ears because the cold affected my ears, but as I got to learn later, after taking medication to lower the thyroid hormone, the heartbeat in my ears went away.

This means the thyroid problems started after I've had that cold, because the same year, in March 2019, I had thyroid blood tests and they were normal.

After the cold in December, all was normal aside from some missed periods and the heartbeat in my ears, up until May 2020 when I started feeling unwell and my resting heart rate was 109. I wasn't measuring it up until that point because I was feeling ok.

Then I took pills for lowering the thyroid hormone because I was TRAb positive with hyperthyroidism. After 6 weeks my levels of hormone got pretty low and I got the dose reduced but after just one week, I got a goiter and stopped the treatment, and i got blood tests and the TSH skyrocketed!

After some weeks (goiter almost disappeared) when I didn't take anything but supplements, I got the blood tests again, and the hormone was in normal upper intervals, but the TSH was lowered again so I started taking the pills (just 2.5 mg) every other day, since I was also still TRAb positive. However, after a week I started getting a goiter again so I stopped the pills, then goiter reduced size, then it appeared again and I took 2.5 mg for 4 days, then stopped a day before having blood tests again.

5 weeks passed in total and I was again at the lower normal hormone limit but the TSH was still low.

Didn't take anything for 3 weeks and then got blood tests, TSH grew a bit, though still suppressed, but the other hormones were normal.

Then i thought I shouldn't take anything anymore so after 3 more weeks in which I felt great, the thyroid began to swell again. It's now pretty big and I have this horrible ear pressure, sometimes pain. My heart rate at rest sometimes is sixty and so, other times fluctuates to 80. I can't really exercise anymore because of the horrible head pressure. Breathlessness at rest.

I am however, pretty afraid to go have another blood test then go to doctors, because of all this covid stuff going on. I have been waiting for a week for the goiter to reduce size but it stays the same. Felt very tired. My guess is that it's underactive now, but can't know.

Over these weeks, I have had puss on one of my tonsils, that came and went for two times. And now it reappeared. No other symptoms besides a bit of throat soreness.

Timeline:

02.06.2020 -> didn't take TRAb test at this time, but got diagnosed with Grave's

TPO antibodies: 16, reference <34

TSH < 0.005, reference 0.27 - 4.2

FT4 65.5, reference 12 - 22

ESR 13, reference <20

19.06.2020:

TRAb antibodies: 12, reference <1.75

T4 179 reference 66 - 181

ESR 11, reference <20

22.07.2020: anti thyroid dose lowered to 10 mg

TRAb antibodies: 11.13, reference <1.75

FT3 3.1 reference 3.1-6.8

TSH 0.202 reference 0.27-4.2

FT4 5.7 reference 12-22

11.08.2020:this was when treatment got interrupted cause goiter

FT3 3.9 reference 3.1-6.8

TSH 13.4 reference 0.27-4.2

FT4 5 reference 12-22

02.09.2020: took no pills up until this date anymore

FT3 6.7 reference 3.1-6.8

TSH 0.02 reference 0.27-4.2

FT4 21.3 reference 12-22

07.10.2020: just 2.5 mg every other day for a week, then interrupted and took 4 days of 2,5 mg up until a day before blood tests

FT3 4.2 reference 3.1-6.8

TSH 0.071 reference 0.27-4.2

FT4 13.4 reference 12-22

So I kinda get the vibes that it seems like thyroiditis, started hyperthyroid, then proceeded to be hypothyroid, but the TRAb antibodies make me wonder if it is a possibility.

Thanks for reading (if anyone had the patience) ^^

[Star13]

There is a thread today about these antibodies so your post is coincidental. Apparently TRAb has both stimulating and blocking antibodies which those with Hashimotos can have in almost equal numbers.

If you don’t want to contact your Doctor perhaps at least do a private Home blood test to see what’s going on and compare with your last tests.

[pennyannie]

Hello Someone ;

So, from what you have said, you do have over range TRab which could confirm a diagnosis of Graves Disease and for some reason your immune system is attacking your thyroid,

Did you ever get tested and ruled out for Hashimoto's Disease which can display initially with similar symptoms to Graves ?

Graves is an autoimmune disease, generally there is a genetic predisposition and thyroid health issues within the wider family, maybe a generation away from you, and can be triggered by a sudden shock to the system like a car accident or sudden death of someone close to you.

The immune system goes a bit haywire and with Graves attacks the thyroid and it is because the thyroid is suck an important, major gland, that the symptoms expressed can be said to be life threatening in some people.

The anti thyroid medication blocks your own thyroid production, so your thyroid hormone levels will slowly reduce back down and your symptoms becomes less troublesome.

Your results now show some consistency and have dropped from September high but ok levels to what, now, might be for you, too low a level of T3 and T4 and possibly symptoms of hypothyroidism.

It is a fine balance and where you feel at your best and it is T3 that gives you symptoms - too high and you have symptoms of hyperthyroidism and too low a level and you have symptoms of hypothyroidism.

I do not know the relevance of developing a goitre and now feel out of my depth.

If you check out the Thyroid uk website who are the charity who support this amazing forum there is more to read about all things thyroid.

I also found the Elaine Moore Graves Disease Foundation website invaluable in my dealing with my Graves but sadly only found out all this after I'd lost my thyroid to RAI ablation back in 2005 - a treatment I deeply regret - though wasn't even given an option, though well on the AT mediation.

Elaine has Graves and finding no help with her continued symptoms after RAI started research herself into this poorly understood and badly treated AI disease.

Elaine's website and research pays particular attention to more alternative, holistic options that can help reduce down the thyroid antibodies. Currently mainstream medics do not know how to control antibodies and so tend not to look at this component of the disease other than to get a diagnosis and then treat with AT drugs in the short term, hoping this is just a blip. and your health returns to normal after a period of time.

[eachpeach in reply to pennyannie]

Gosh you have been through it, you poor thing! If you have TRAb antibodies that shows you have Graves' disease. GPs don't usually treat this - are you under the care of an endocrinologist? I have Graves' and at first was diagnosed with Hashimoto's but then went hyper and was diagnosed with Graves' due to TRAb antibodies. It is a difficult job to balance the right level of antithyroid drugs and usually takes an experienced consultant to help you do that. It can also take a long time to get all your levels into range. I've been treated for almost 2 years and am now in range but still on Carbimazole at a low dose. Hope you get the care you need to get better and the regular blood tests that are essential to see what your thyroid levels are doing. Good luck.

[eachpeach in reply to eachpeach]

Agree with PA - Elaine Moore website is amazing! She also answers questions personally which is incredible if you have a question between consultant appts.

[pennyannie in reply to eachpeach]

Hey there :

Isn't this reply meant to be for " Someone ' else - eachpeach !!!???!!!

I've already been through it and if I could have my time over I'd stay on the AT drugs and keep my thyroid - xx

[eachpeach in reply to pennyannie]

Yes apologies, meant for the poster! Sorry you lost your thyroid (you've also given me excellent advice in the past so thank you for that). I'm trying to keep mine despite being 'coerced' into definitive treatment at every single appointment. xx

[pennyannie in reply to eachpeach]

Hey Peachy and thank you :

It's nice to know that I may have helped someone, somewhere :

So can I suggest you dig out Professor Anthony Toft's 2017 article written in his retirement years from working in the NHS. and also please check out this eminent endocrinologists career.

The full article is, I believe on this forum somewhere, but I'm yet to master this cut and paste gizmo and still need scissors and glue !!!!

Thyroid Hormone Replacement - A Counterblast to Guidelines : printed in the Journal of the Royal College of Physicians of Edinburgh : in which he states :-

" I am so concerned about the state of advice on the management of primary hypothyroidism that I am increasingly reluctant to suggest ablative therapy with iodine 1-31 or surgery in patients with Graves disease, irrespective of age or number of recurrences of hyperthyroidism " :

The whole article is totally worth reading for all people with thyroid issues, and pretty much sums up everything, either in what he writes, or doesn't, and I'm sure he knows a lot more than most people.

[eachpeach in reply to pennyannie]

You definitely have helped me! It's always so good to hear from people who've been through the same thing and have gained so much knowledge along the way. Thanks for that article, I have seen it before and do have a link in my notes somewhere ....

rcpe.ac.uk/sites/default/fi...

there you go. That article had a huge influence on me to try and fight to save my thyroid along with advice on here and on a Graves' Facebook page. Knowledge is power!

[pennyannie in reply to eachpeach]

Thanks - I have it in old fashioned paper form - as I'm not good with anything being virtual and please don't try to explain - especially that cloud, as these generally rain on me !!

Take good care - and again, I'm a Face to Face type of person - but might take a peek !