Worried about high thyroid antibodies

[Blooter]

I recently got some blood tests done through the post as have various unexplained symptoms, including tachycardia, internal tremor, high anxiety, fatigue, blurry eye. It has showed high testosterone and high thyroid antibodies (TPOAb). All other thyroid levels were within range:

TSH 1.35
FT4 15.5
FT3 5.1
T4 109
TgAB 31.4
TPOAb 48.3

I've also just been diagnosed with a pituitary microadenoma of 3mm. I'm currently waiting on blood tests from the endocrinologist but won't get results for 2 weeks.

I have scared myself reading about thyroid cancer, autoimmune diseases, high testosterone being caused by a tumour etc.
Also that high thyroid antibodies are linked to thyroid cancer.

My GP is useless (has fobbed me off for the last 6 months and says its all in my head) and I can't speak to the endocrinologist for another 2 weeks.

Does anyone have any insight into this and can talk me down from the ceiling? So scared I will have to have surgery to remove the pituitary tumour and what these blood test results mean for my long term health.

Also, can these results be explained by high stress? I have had an extremely stressful 9 months.

I know very little, but I am waiting for a biopsy on my thyroid because of a u3 nodule. All of my thyroid levels are normal.

I was under the impression thyroid cancer doesn't normally have any real symptoms and levels are normally with in range.

When I was tested for antibodies it was to rule out hashimotos.

Thanks. I don't think there's any nodules on mine as I had a head and neck MRI recently and it didn't pick anything up. Would thyroid cancer show up on an MRI?

I have Hashimotos and when diagnosed my thyroid antibodies were well over a thousand.
I also had a thyroid nodule removed in investigations for thyroid cancer (which was when my antibodies were tested) and it was not cancer.
I would try not to worry at this point. As my consultant said during my diagnostic tests, thyroid cancer (which isn't diagnosed by blood tests!) is very treatable. I think it is a different antibody they monitor on people after treatment for thyroid cancer, not TPO antibodies anyway.

Thanks, I'm finding it hard not to worry as I keep having doctors tell me things look fine that turn out to be serious (e.g. cancer diagnosed after a clear scan).

One thing I've read is that gluten intolerance can raise TPO levels so I'm hoping it's something as simple as that. Really scared that on the other hand it is the pituitary tumour and I'll need surgery to remove it.

I can't bear all the waiting and worrying. Can't think about anything else at the moment and it's taking over my life.

Were your TgAb and TPOAb measure in kIU/L?

So it’s very likely you have Hashimoto’s Thyroiditis. Yes, some people develop thyroid cancer but it’s really rare and usually the antibodies are much much MUCH higher in the tens of thousands (though of course it is not always the case). Do you have a goitre?

My TgAb at my last blood tests were at 408 and TPOAb back to normal. 6 months earlier, it was the opposite. They go up and down very often as diet, stress, lack sleep all influence your levels of autoantibodies.

I cannot comment about your pituitary situation but I live with hashimoto’s. It’s not always easy due to sometimes very poor treatment (as exemplified by your GP) and it can be debilitating at times, but you can definitely live with it.

Hormonal imbalance is very common with thyroid and pituitary problems.

If you add the ranges for your results, I’m sure some more knowledgable people will come to help.

mine was picked up on a ct scan for another reason. I've got a multinodular retrosternal goiter, the biggest and the only one causing any concern is 4.5 by 2.5cm. I didn't have a clue, just swollowing issues that I hadn't thought much of .

Plan now is to biopsy it, if it shows cancer whole thing comes out, if not half comes out.

I don't have goitre but do have a slightly hoarse voice.

I know it must feel like a horrible time and you will worry regardless of people saying don't worry!
You can have raised antibodies without having an autoimmune thyroid problem. My raised antibodies just mean I will develop an underactive thyroid and I just take levothyroxine. I'm currently trying gluten free to see if it makes a difference to my symptoms, but doctors don't generally re-test antibodies so I've no idea if gluten free will work!
I had an ultrasound on my thyroid which identified the nodule, but I would imagine an MRI would be even more thorough than that?

my voice goes funny sometimes, but I also have induced laregeal obstruction.

@Blooter

Thanks, I'm finding it hard not to worry as I keep having doctors tell me things look fine that turn out to be serious (e.g. cancer diagnosed after a clear scan).

One thing I've read is that gluten intolerance can raise TPO levels so I'm hoping it's something as simple as that. Really scared that on the other hand it is the pituitary tumour and I'll need surgery to remove it.

I can't bear all the waiting and worrying. Can't think about anything else at the moment and it's taking over my life.

Yes, you can try to control your autoantibodies through diet. Gluten is the number one thing and dairy close behind. Anything that increases inflammation, especially in your guts, will have an impact.

I’m currently gluten free. I’ve decided to give myself 6 months gluten free to see if it helps (though it’ll take longer because I’m currently pregnant and of course everything is out of whack ).

Sleep and gentle exercise are important to. I strongly recommend you to google The Thyroid Pharmacist.

The ranges are:

TSH 1.35 (optimal)
FT4 15.5 (optimal)
FT3 5.1 (normal- slightly higher than optimal)
T4 109 (normal)
TgAB 31.4 (normal)
TPOAb 48.3 (high)

I'm on my phone (and in the middle of dinner!) so can't type out range numbers but these are the interpretations.

To me this doesn't seem to suggest hypothyroidism but more likely hyperthyroidism? I also have more symptoms of hyper than hypo in terms of anxiety, tachycardia, tremor etc.

I've only just recovered from cancer so am finding this all really scary.

With Hashimotos the thyroid switches from hyper to hypo initially as lymphocytes attack the thyroid gland it releases extra hormone which gives the hyper symptoms, but once that flare is over your thyroid loses ability each time and gradually becomes more hypo when your TSH raises in response to this. Eventually the thyroid fails. That's my understanding of how it works anyway.

I got my diagnosis with levels over 300 and rapidly rising over 400. Not that I got anything for it because tsh never went over (but got close to) 10. Unofficially my gp said other patients benefited from going gluten-free but would say it would work definitely. It took over a year but my antibodies stay around 100 now with stable tsh and I feel better.

Understand in your case given your history why you are worried. I'd say don't try anything unless they have nothing else to offer you, then try it because you've got nothing to lose (except decent bread).

Good luck

I know it’s scary. I was the same when I was first diagnosed and didn’t even have your excuse of having suffered from cancer before.

I learnt to more or less control it and now that I’m pregnant I worry constantly about it.

Thanks, it doesn't help that I have a history of doctors not listening to me and dismissing all symptoms as anxiety. I feel like I have to fight for everything and don't trust what doctors say as they have been wrong in the past with potentially devastating consequences (missed cancer diagnosis). So I feel like I have to research and know everything before every appointment otherwise they will fob me off.

My GP seems to think that if its statistically unlikely to be a certain condition then there's no point checking for it. Unfortunately I've had a few rare conditions so it is of no comfort to be told its unlikely to be x, y, z.

I did these blood tests through Thriva, who I have been really impressed with, as my GP would only test for the basics eg. only tested for TSH rather than the full thyroid tests.

It's horrible feeling that I can't trust the doctors who literally have my life in their hands!

I get it @Blooter. The same happened with my thyroid and I’m now treated privately (in my country of origin, because prices in the U.K. are too high for me).

I know this is an old thread but they put me on Levothyroxine when my tsh was at 8, antibodies >1006. Do you take medication or just control through diet etc? Xx

I had very similar results about 10 years ago. GP just said to test again after 3 months. I did, it was still above normal but not as much. Another 6 months later and it was closer to normal. I've had no problem with my thyroid since. My GP said that it can happen especially around perimenopause time but doesn't mean there is anything wrong.