Tested Positive for Antibodies… now what?

[MoaningLisa]

Hi, after 20 years or so battling with my thyroid and doctors to do more tests and give me proper treatment, I found out yesterday that I tested positive for antibodies back in December! The doctor only told me this because I insisted on more tests yesterday and I couldn't remember if I had the antibody test done so I asked for it again, then she found my results on the computer and told me I tested positive. I asked her "does that mean I've got Hashimoto's" and she said "um, er, well, possibly"! Possibly?! Someone please confirm that this means I have Hashi's? I have ALL the symptoms even down to the hump on my neck! I feel like crap and the NDT isn't working for me. I've asked them to check my cortisol via 24 saliva test and they said they don't do that and they could do a cortisol stress test or something like that, any ideas what that is or if it'll help? I'm convinced my adrenals are buggered as I feel like a zombie every day and wake up at night with my mind racing and not tired. Thanks in advance.

[shaws Administrator]

If you have antibodies you have an Autoimmune Thyroid Disease called Hashimotos. Your doctor should treat you with thyroid hormones but she sounds like another who needs her patient to educate her. Why is it that those we expect to be educated in health, know little about one of the most necessary glands that produce life-sustaining hormones i.e. the Thyroid Gland.

Email [e-mail] and ask for a copy of the Pulse Online article and read about antibodies. Before blood tests were introduced we were given hormone replacements due to the doctors being thoroughly knowledgeable about clinical symptoms.

thyroiduk.org.uk/tuk/about_...

thyroiduk.org.uk/tuk/about_...

Members who have hashimotos will respond too.

You have diagnosed yourself. Just make sure you are not kept on too low a dose (you do start off with a small dose).

On the links above - which is our parent website and on the left-hand side there is lots of info which may be helpful.

[MoaningLisa in reply to shaws]

Thank you

[molliemdz]

I think if your GP's response began with, "Um, er, well," it means you need immediate referral to a good endocrinologist! I would have assumed positive for antibodies means positive for Hashi's, but I'm not an authority on this matter (also, an endo once told me that 90% of hypothyroidism is probably Hashi's, so I'm always inclined to think that everyone with hypothyroidism has Hashi's). Maybe someone more expert will confirm....

As for the stress/cortisol tests, I don't know. I thought the 24-hr saliva test WAS the cortisol stress test (anyway, it's supposed to be the most accurate way of testing, but I've never had it done). Am curious to hear how you get on with the adrenal testing. Do keep us informed! Best of luck to you!

[crimple]

Moaning Lisa, I have just responded to mindless haze (on today's post) with her query about TPO retest on this forum. You may find it helpful to read. Also our local endo said there was no treatment for TPO (that's when I started reading about it myself!!) The same endo thinks that TSH test is all that you need "the most accurate test....."!!!

No wonder so many of us on here teke a degree in the functioning of the thyroid LOL and also DIY treat ment!! sorry for the cynicism it's my trademark!!

[greygoose]

The cortisol stress test is to tell you if you have Addison's (no cortisol) or Cushing's (over-the-top cortisol) it tells you nothing about the grey areas in between. You're right about needing a 24 hours adrenal saliva test - and she's right, the NHS Don't do it! (Like so many other helpful tests!!!)

But I think I'm right in saying that a hump on the neck indicates a problem with the adrenals rather than Hashi's. However, if your TPOab and/or Tgab were elevated, you do have Hashi's. Your doctor doesn't know much about thyroid, does she! lol

So, having Hashi's, it's quite possible that the NDT isn't working for you. It doesn't work for a lot of Hashi's people, for whatever reason. You might be better off on Levo + T3 - or even T3 only. But, of course, if there is a problem with your adrenals, it will be difficult for anything to work.

So, question time!

1) Have you had your vit D, vit B12, folate, iron and ferritin tested? They all need to be at least mid-range - B12 top of the range - for thyroid hormone supplementation to work.

2) Do you eat enough fat? The adrenals need cholesterol to make hormones.

3) How is your cholesterol?

4) Do you eat enough salt? The adrenals need salt.

5) Do you take vit C? The adrenals need loads of vit C.

6) Have you tried going gluten-free? Some people find this helps lowering antibodies.

7) Is your TSH suppressed? No gland activity = no antibody activity.

8) What were your last tests like? Would you like to share them?

So, if we get the answers to all those questions, we might be better able to help.

[MoaningLisa in reply to greygoose]

That's very helpful, thank you! I'm due to see an endo in the next couple of months (but he's just as clueless as my doctors and the only one here in Jersey UK!) So if they do this stress test it won't show anything in between just if I have addisons or cushings? So if I have LOW cortisol I won't know about it, only if I have NO cortisol is that right? I want to know what to tell the endo and what to say to convince him to do a 24 hour saliva test instead, i've tried to convince two doctors but they wouldn't do it. Feel like tearing my hair out!

In answer to your questions I'm low on vit D, was taking supplements but for some reason I can't remember I stopped them. I'm taking B12 tablets every day even though my test results were ok, iron was low to I've started taking iron supplements too, the other two I've not been tested for.

I think I eat quite a lot of fatty foods.

Not sure about my cholesterol, haven't been tested! Will ask doc to test me.

I try to avoid salt! Will eat a bit more!

Not taking vit C - will get some!

I haven't tried going GF but I am due to have an endoscopy to see if I'm coeliac as it runs in the family, so might try to go GF anyway and see what happens, though I think it will be really hard!

I don't know about my TSH and always get confused, should it be on the high end or low end?

Last tests were 6 months ago, need more soon. Results:

TSH 1.43 (0.50 - 5.00)

Free thyroxine 8.1 (10.0 - 25.0)

Free T3 7.6 (4.3 - 8.1)

[greygoose in reply to MoaningLisa]

TSH was high and T3 was high? That's strange.

A suppressed TSH is as far off the low end as you can go. High TSH means you're hypo.

But it would help if you could get a copy of every test you have, then you can post them here if you have a question. It is your legal right to have a copy of your results.

Most endos are clueless about hypo, they tend to specialise in diabètes. I doubt if there is anything you can say to convince them to do a saliva test. The NHS just does not do it. It's hard enough trying to get a simple FT3, so more complicated things like saliva tests and rT3 are totally out of the question. But the stress test will not tell you what you want to know. They'll just say oh, you do have some cortisol so you must be in perfect health.

OK, so it doesn't matter why you stopped taking the vit d, but it might be a good idea to start it again. Or get it tested. And try taking a little magnesium with it. They work together. As do all the Bs, so if you're Taking B12, take a B complex with it. And it's best to take vit C with your iron to help absorbtion and make it easier on your tummy.

In fact, take lots of vit C!

OK, if you're eating a decent amount of fat, Don't bother with testing your cholesterol, if it's high, your doctor migh want to give you statins, and you Don't want that! Just as long as your getting the fat.

Very, very bad to avoid salt, and could explain why you feel your adrenals aren't good. They might improve if you get plenty of salt.

Don't start gluten-free before the coeliac test it will skew the results. You need to be eating gluten when you do it.

Let us know your new results when you get them.

[MoaningLisa in reply to greygoose]

THANK YOUUUUU! Will let you know.

[MoaningLisa in reply to greygoose]

PS, sorry I got that wrong and edited my post, TSH was not high

[greygoose in reply to MoaningLisa]

Ahhhh that makes more sense. lol

[Dramlouie]

i had the same thing happen to me. Been having hypothyroid symptoms for years and finally a doctor tested me and there it was low thyroid after years of going to the doctors. I think they are half asleep. I was still feeling 'off' and not right so I paid to have EAV testing, the electrical circuitry tested via the acupuncture points. This brought up issues and he said I needed an antibody test and to go back to the doctor. I insisted for a test and the results came back, I have Hashimotos although she didn't mention Hashimotos but my antibodies were 195.8, (normal 0-35). I said I was in pain, joints, muscles and all the doctor said was to go back in 6 months for another blood test. I now do my own research and take my supplements instead of waiting another 6 months being in pain and watching my life fly by. Although its cost me a fortune and still is I feel so much better. I went to a herbalist who gave me a tincture 3 xs day which really sorted out my racing mind and bad reaction to stress and anxiety. I also take Maca, Rhodiola, Ashwagandha and high BVits, high Vit C, coconut oil, a good omega 3 with high DHA and EPA, I don't get into stressful situations and get to bed in good time and drink green tea. I stay off gluten and grains. I have lost 3 stone in 14 months. I have gradually increased my levothyroxine from 25mcg to 50mcg. I can walk up a hill now a lot faster and take D Ribose which has made such a difference. I also make up a superfood smoothie for myself and have a glass a day. I have also treated myself to some good face creams. Its taken time but I am not getting anxiety attacks everyday. I hope you feel better soon. Oh forgot the Vit D. Good luck. x