So confused if I have had or not!: Hi All, I was... - Thyroid UK

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So confused if I have had or not!

irish-coleen profile image
9 Replies

Hi All, I was diagnosed 6 years ago with underactive thyroid, I then asked to have my antibodies tested after speaking with a family member who has hashimotos, I was told they came back high, ive been on different doses of levothyroxine but am working with a nutritional therapist who ordered private blood tests, she now said i don't have hashimotos? I'm so confused, please can someone look at my results, thank you.

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irish-coleen
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Jazzw profile image
Jazzw

You can’t always tell just from blood tests. A scan of the thyroid often reveals evidence of Hashimoto’s in people who’ve never had positive antibodies.

Plus thyroid antibodies go up and down all the time. It could just be that on this occasion your levels were rather low!

Have you ever had a thyroid scan?

irish-coleen profile image
irish-coleen in reply to Jazzw

Hi Jazzw, I've never had a thyroid scan, no she suggested it might be something with my pituitary gland? Yes I'm on 75mg of levothyroxine, do you think I'd be better paying for an ultra sound, my gp thinks hashimotos is no big deal, so only tests TSH and T4.Thank you

Jazzw profile image
Jazzw in reply to irish-coleen

Well, in a way, it doesn’t matter if it’s Hashimoto’s or not. You’ve got hypothyroidism and it needs treating with thyroid hormone replacement. So I guess it depends on what you’re hoping to achieve? I know there’s a lot of “noise” out there on the internet about potentially being able to “cure” Hashimoto’s with diet and other self-care measures etc but in all honesty, I think the best you could ever hope for is to slow it down.

So I can sort of see where your GP is coming from—it wouldn’t make any difference to your treatment to know whether you have Hashimoto’s or whether your hypothyroidism has some other cause.

Jazzw profile image
Jazzw

PS—I hope your nutritional therapist isn’t trying to suggest you don’t have hypothyroidism? I assume these tests were done with you taking your usual dosage of thyroid hormones?

SeasideSusie profile image
SeasideSusieRemembering

Irish-coleen

I was told they came back high

Do you have the results of this test with the range?

Was it a GP test?

If you had raised (over range) antibodies this confirms Hashimoto's and it doesn't matter if future tests show antibodies lower you still have Hashi's, antibody levels fluctuate but the Hashi's doesn't go away.

irish-coleen profile image
irish-coleen in reply to SeasideSusie

Hi ,no unfortunately I don't have these results, my gp never gives me my numbers through out the years, I've started now to ask the receptionist for my Tsh and T4, but I understand now that I still have hashimotos, would these results be considered not active? Thank you.

janeroar profile image
janeroar in reply to irish-coleen

You are entitled to see your records - ask the receptionist at GP practice for a print out of your previous test results and post them on here if you’re in any doubt

SeasideSusie profile image
SeasideSusieRemembering in reply to irish-coleen

irish-coleen

would these results be considered not active?

Not sure what you mean by that. Do you mean that your immune system isn't attacking your thyroid at the moment?

Hashi's is where the immune system attacks and gradually destroys the thyroid. When the attack happens, the dying cells release a lot of thyroid hormone into the blood and this can cause TSH to become suppressed and Free T4 and Free T3 to be very high or over range. The antibodies come along and mop up the mess. After the attack levels settle down.

So when the immune system is actively attacking the thyroid you will very likely see high antibodies.

These attacks are random so sometimes your antibodies will be higher than others.

The more attacks the more your thyroid is destroyed, eventually there'll be no thyroid left to attack so there will be no (or very little) fluctuations in antibody levels.

You have Hashi's. It doesn't go away.

If your nutritional therapist says you don't have Hashi's, and you know that you have had it confirmed in the past and you have told her this, then she doesn't understand Hashi's.

Most doctors dismiss antibodies as being of no importance and know little or nothing about Hashi's and how it affects the patient, test results and symptoms. You need to read, learn, understand and help yourself where Hashi's is concerned.

Some members have found that adopting a strict gluten free diet can help, although there is no guarantee.

Gluten contains gliadin (a protein) which is thought to trigger autoimmune attacks so eliminating gluten can help reduce these attacks.

You don't need to be gluten sensitive or have Coeliac disease for a gluten free diet to help.

Gluten/thyroid connection: chriskresser.com/the-gluten...

stopthethyroidmadness.com/h...

stopthethyroidmadness.com/h...

hypothyroidmom.com/hashimot...

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

Supplementing with selenium l-selenomethionine 200mcg daily is said to help reduce the antibodies, as can keeping TSH suppressed.

SlowDragon profile image
SlowDragonAdministrator

You are legally entitled to printed copies of your blood test results and ranges.

The best way to get access to current and historic blood test results is to register for online access to your medical record and blood test results

UK GP practices are supposed to offer everyone online access for blood test results. Ring and ask if this is available and apply to do so if possible, if it is you may need "enhanced access" to see blood results.

Link re access

healthunlocked.com/thyroidu...

In reality many GP surgeries do not have blood test results online yet

Alternatively ring receptionist and request printed copies of results. Allow couple of days and then go and pick up.

Important to see exactly what has been tested and equally important what hasn’t been tested yet

For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also EXTREMELY important to test vitamin D, folate, ferritin and B12

Low vitamin levels are extremely common, especially if you have autoimmune thyroid disease (Hashimoto's) diagnosed by raised Thyroid antibodies

Ask GP to test vitamin levels

Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .

Last dose of Levothyroxine 24 hours prior to blood test. (taking delayed dose immediately after blood draw).

This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)

75mcg is only one step up from starter dose.

Extremely important to have optimal vitamin levels as this helps reduce symptoms and improve how levothyroxine works

What vitamin supplements are you currently taking

Ultrasound scan of thyroid can be helpful

20% of Hashimoto's patients never have raised antibodies

healthunlocked.com/thyroidu...

Paul Robson on atrophied thyroid - especially if no TPO antibodies

paulrobinsonthyroid.com/cou...

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