Confused: Hi thereI had over the past years... - Thyroid UK

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Confused

Rosemarie61 profile image
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Hi thereI had over the past years 3 doctors and an endocrinologist telling me that regardless of a high TPO result (1300 U/ml at the moment) I do not have Hashimoto's as I don't have a goiter. I was always under the impression if you have antibodies that this is confirmation that you have Hashimoto's disease.

Can someone please enlighten me.

Thanks 😊

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Rosemarie61 profile image
Rosemarie61
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17 Replies
FallingInReverse profile image
FallingInReverse

Autoimmune hypo with goiter is Hashis

Autoimmune hypo without is called Ords

A distinction without a difference or whatever they say!

Same underlying mechanism of thyroid destruction, but with different physical representation.

How are you managing?

Rosemarie61 profile image
Rosemarie61 in reply toFallingInReverse

Thanks :) I'm taking levothyroxin and trying to eat and live well

radd profile image
radd

Rosemarie61,

No, elevated TPOAb is not an automatic Hashimotos diagnosis and many people live healthy lives with a healthy thyroid gland in spite of elevated TPOAb.

However, for many people TPOAb are involved in thyroid cell destruction through cytotoxic mechanisms mediated by a dysfunctioning immune system. Therefore, a true diagnosis of Hashi is when progressive lymphocytic infiltration causes fibrosis of hormone-producing follicular cells and this destruction of thyroid cells eventually leads to hypothyroidism.

The rate this happens varies in person to person from several months to several years, and the level dictates if thyroid hormone replacement will be required. This is why some medical professions won’t diagnose Hashimotos until there is more evidence of hypothyroidism seen as low levels of thyroid hormone in the blood stream.

A goitre indicates thyroid gland inflammation but isn’t always visible without palpitation, and fibrosis can be seen on an ultra sound scan often used as a guide of Hashi advancement.

As well as the TPOab, there can be distinct patterns seen in thyroid hormone blood tests that medical practitioners might miss due to the absence of regular testing. Hashimotos tends to make both hormones wildly fluctuate whilst, a lesser immune response/antibodies and a slower thyroid gland destruction might show higher levels of the active hormone FT3. Therefore, to get a truer picture it is important to have FT4, FT3 and TSH tested together.

If you are on the way to Hashimotos, then high levels of TPOAb alone can make you feel very unwell with high levels of inflammation, even whilst the thyroid gland remains intact.

I’m assuming you have a visible goitre? Have you been offered an ultra sound scan?

Have you got several sets of blood tests you can supply? (include ranges which are the numbers in brackets).

Rosemarie61 profile image
Rosemarie61 in reply toradd

Thank you :) I was already diagnosed with Hashimoto's in 2009. Taking levothyroxin since then. TPO doesn't usually get tested, I just know they were around 200 in 2016 and in June 1300. I don't have a goiter. I got a full Thyroid panel done privately then. My thyroid levels have been all over the place this year as I was treated in February for Atrial Fibrillation with a drug that has high iodine in it. It is slowly coming right. At the moment it is T4 free 19 and TSH 6.6. Tsh went from one month at 0.48 to 17 the next for example. Medication was always the same. My doc says the TPO antibodies are there to stay and not to worry about.

radd profile image
radd in reply toRosemarie61

Rosemarie61,

Yes, conventional medicine hasn’t caught up with research or functional medicine yet. It is now recognised that auto-immune antibodies can incite chronic inflammation, and other autoimmune and inflammatory conditions. Therefore, when hypothyroidism is imminent or present the aim is to reduce TPOAb that are indicative of the chaotic storm inside your body.

Many members have found a g/f diet useful. Also supplementing selenium which helps from multiple angles. I follow a low inflammatory diet and have successfully used natural anti inflammatories such as Vit D, fish oils and curcumin.

My own thyroid gland was ravaged years ago but my son who also had high TPOAb levels has managed to reduce them, feel better and kept his thyroid gland intact. A good read for further understanding of autoimmunity and auto-antibodies is ‘The Root Cause’ by Isabella Wentz.

Sorry to hear about your A-fib. There have been other members whose thyroid hormone levels have been affected by the meds too.

Rosemarie61 profile image
Rosemarie61 in reply toradd

Thanks so much, this was very informative :)

SlowDragon profile image
SlowDragonAdministrator in reply toRosemarie61

My thyroid levels have been all over the place this year as I was treated in February for Atrial Fibrillation with a drug that has high iodine in it.

was that Amiodarone

emedicine.medscape.com/arti...

You might find posts by waveylines helpful as she has been in similar situation

waveylines profile image
waveylines in reply toSlowDragon

Ah yes the delightful (not!) Amiodarone. I'm still not back up to my usual dose........though improving slowly. ...now at 80%

Rosemarie61 profile image
Rosemarie61 in reply towaveylines

Yup, that's the one :) It takes an awfully long time to recover.

Rosemarie61 profile image
Rosemarie61 in reply towaveylines

I hope you feel better soon

waveylines profile image
waveylines in reply toRosemarie61

Thankyou. Am miles better to what I was....but limited energy. 13months since it was stopped!! Only on it 4 weeks.....but havoc! I've heard from others the average is 15months for pre existing hypothyroidism.

Rosemarie61 profile image
Rosemarie61 in reply toSlowDragon

Yes it was :)

Rosemarie61 profile image
Rosemarie61 in reply toSlowDragon

Thanks that's very useful :)

waveylines profile image
waveylines in reply toRosemarie61

Yes Rosemaroe the same happened to me re Amiodarone ....but my thyrohd hormones shot up.....I guess uptake was dropped due to the drug. So had to lower my thyroid meds to 25% of usual dose......scary time tbh. As very little follow up.

Rosemarie61 profile image
Rosemarie61 in reply towaveylines

I was only on it for two days to get back into sinus rhythm but the fallout was huge. Thyroid levels were all over the place. At one stage it dropped to 0.09 which triggered another Afib episode. Had an electric cardioversion for this one. I hope I never have to take Amiodarone again.

waveylines profile image
waveylines in reply toRosemarie61

I definately will refuse point blank. There is an alternative with no iodine and does not affect thyroid. Still a nasty drug though. You have all my sympathy. X

Rosemarie61 profile image
Rosemarie61

Thanks, take care :)

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