Hashimoto or not?

Hi all,

In 2013 I had a positive anti-TPO of 70ku/l. It was tested in a hospital and it gives no ranges. I just called and nobody wants to give me the range because I'm not a doctor. But on the copy of my result it says positive so that's for sure.

In 2014 my GP tested anti-TPO (she didn't knew that it was already tested before and positive) and that was negative (<26ku/l). So she said it was just subclinical and because I wanted it I got a trial of Levo which I'm still taking.

Next week I have a blood test to check if this dose of Levo is good for me and I already made a appointment with my GP for friday because I feel like a zombie and have some symptoms I want to discuss.

But my big question is still if I have Hashimotos or not. I will give her a copy of the positive result but I'm really afraid she will dismiss it because when she tested it it was negative.

If it isn't going anywhere I will ask a referall for a endo but I just want to know what she thinks.

Do you have any advise or opinion?i

13 Replies

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  • Flower007, it's not unusual to have a positive result and after making dietary and lifestyle changes to have a negative result. It's unusal for NHS to retest so most Hashi patients probably don't know whether antibodies increase or decrease unless they test privately.

    Members have been able to reduce Hashi flares and antibodies, some completely eradicating them, due to gluten-free and other dietary changes. Levothyroxine can also reduce Hashi antibodies, particularly TSH suppressive doses.

  • I understand, but I'm sure my GP doesn't..I just want clarity and I guess I have to start with my GP.

    Would you say this is Hashimoto? I want to discuss the feelings in my neck, maybe I can get a ultrasound, that would show also if it is Hashi if I understood it correct.

  • Flower, well the original positive result was Hashi but the subsequent negative result means it was no longer there but it is also true that some patients have Hashimoto's without antibodies. An ultrasound may show whether there is Hashi damage ie coarsened texture and usually atrophied thyroid gland.

  • Will someone with Hashi always have the ultrasound showing what you are saying?

    I'm going to my GP to discuss some symptoms (like the pressure on my neck) and then I will also say I got a positive anti-tpo result in 2013 and what that means. I want answers and if she can't give them I will ask for a referral.

    Sometimes I don't know where to start or I don't have the energy anymore to again go to the doctor and discuss it all, it seems so hopeless. But to get answers and maybe more tests I have to go there again.

    Thank you for your help again Clutter, it helps to discuss this with people who understand.

  • Flower007, the ultrasound will show whether there is damage consistent with Hashimoto's. Absence of damage doesn't mean absence of Hashimoto's, just that damage has not yet occurred.

    Pressure in your neck isn't necessarily due to Hashimoto's although it can be. It can be due to goiter, swollen thyroid gland or nodules all of which will show on the ultrasound. Thyroid swells in an attempt to produce more hormone or because TSH flogged it to produce more hormone and/or sometimes a Hashi attack will cause it to swell although eventually it usually atrophies it.

  • I understand, I can't see any swelling in the mirror but it feels constantly like I'm being choked. I can't turn my head left or right without feeling like I can't get enough air, something is pressing on my throat. It was gone for some time but now it is back. Maybe it is because of changing the dose of Levo, I don't know. It is annoying so I want to discuss it with my GP, maybe I can get a ultrasound.

  • Flower, that would be a good idea. I had a large nodule compressing my windpipe which made breathing and swallowing difficult. I didn't realise how difficult until the nodule was removed.

  • Flower 3, one negative antibody test does not rule out Hashi's. Antibody levels vary. Besides, you've already had one positive, so you have Hashi's. It doesn't just go away. It's just that you had the test done on a day when they were low.

    In any case, they didn't even do both tests! TPO is just one test. There's also anti Tg. My antiTPO wasn't that high, but antiTg was about 1500. That's high! They cannot make a diagnosis if they Don't do the right tests!

  • Anti-Tg was tested but negative.

    Thanks, it's really annoying that I read about people with the exact same antibodies result as me and did get the diagnosis of Hashimoto's disease. And with me they say it's nothing, just subclinical.

    What would you advise me to say/ask to my GP and what if she doesn't take that positive result serious?

  • Your doctor just sounds ignorant, and there's not much you can do about that. Doctors Don't understand antibodies, and therefore try to ignore them, they think they're no big deal.

    As I said, my antiTg were very high, but the endo never even mentioned them. Don't know why she bothered to test them, actually - especially as, according to her, my problems were all down to my 'negaive attitude'! I didn't find out the significance of my antibodies until about 6 years later. But even that doctor wasn't impressed by them.

    Besides, what is she supposed to do about it? You said you're already on Levo, there's not much else she can do. They haven't found a cure for antibodies yet.

    I'm afraid it more about what you can do, I'm afraid. Lot's of people find gluten/dairy/sugar-free helps. Myself, I Don't have any experience of that, because by the time I found out what they were, they'd already just about killed my thyroid, so they didn't have much impact anymore.

  • Thanks so much. My GP does listen to me but she doesn't seem to know much about the thyroid.

    You are right that she can't do anything about the antibodies but I would like to hear from a doctor if this is Hashimoto's disease or not. Because that would be important to know and I would finally have clarity about what my body is doing.

    Like you the doc in the hospital that tested the anti-TPO didn't say anything about them being positive. I found out later when I asked for a copy. So I have positive antibodies, or had, and they still don't say if this is telling something.

    I did the Paleo diet for more than a year and besides costing me a lot of money and time it didn't solve anything.

  • Well, we're all different. Can't say that any 'diet' I've ever tried has helped me, either. For three months, I went gluten/dairy/sugar-free and, apart from nearly dying of nutritional boredom, it didn't change a thing! So, basically, I just eat what I like.

    Besides, you get so much conflicting advice. Last night I watched a documentary about women's health. It stated catagorically that women need a lot of meat to be healthy. This morning, I Watch a video on here and it says meat is bad for the thyroid, Don't eat it. Who do you believe? I Don't think things are as cut and dried as that. So, I just eat what I feel like and to hell with it. lol Listen to your body, it knows what it needs.

  • Exactly and that is why I stopped following a diet and just eat the way I think is best for my body. Much easier.

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