thyroid needs help: My thyroid peroxidase... - Thyroid UK

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thyroid needs help

teresasteinb profile image
13 Replies

My thyroid peroxidase antibodies are 3376.3 (not a typo) and the normal range is 0 - 8.9. My thyroblobulin antibodies are positive, but I was not given a number. Diagnosed with hashimotos, but not hypothyroid since tsh, t4free, and t3free are within normal range. I have an "incidental pyramidal lobe." I also have complex thyroid nodules ...the largest measuring 2.6 x 0.8 x 0.9 cm. My gp does not seem to be worried, but I can't shake being worried and I feel ABSOLUTELY AWFUL ALL OF THE TIME!!!!!!!

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shaws profile image
shawsAdministrator

Hi teresa your doctor is wrong not to prescribe levothyroxine. He is just content for you to have swings of 'too much' or 'too little' antibodies.

If you are in the UK email louise.roberts@thyroiduk.org.uk and ask for a copy of the Pulse Online article by Dr Toft who was President at one time to the British Thyroid Association. In this article he says if we have antibodies we should have levothyroxine to 'nip things in the bud. So your GP should prescribe.

If you go gluten-free that's helpful to reduce antibody levels and many members feel so much better.

We have to read and learn if we want to recover our health and the person who you'd think knew best - doesn't - due mainly to the guidelines.

Blood tests for thyroid hormones should be at the very earliest and fasting (you can drink water). Also leave about 24 hours from your last dose of levo and the test and take it afterwards. This allows the TSH to be at its highest as it drops throughout the day, being highest very early a.m. Food also interferes with the uptake of hormones.

I you've not had your B12, Vit D, iron, ferritin and folate plus antibodies checked as for these to be done as well. We are usually deficient in vitamins/minerals.

Always get a print-out of your results, with the ranges (labs differ) for your own records.

teresasteinb profile image
teresasteinb in reply to shaws

Thank You! I have been doing so much reading, but it seems like there are many conflicting articles. The thyroid books I have been reading also have not been super helpful, as they address either hypothyroidism (which I haven't progressed to yet) or hyperthyroidism. Hashimotos seems to not be understood too well or at least not written much about.... a page or two doesn't quite cut it for me. I am not in UK (I live in Michigan, USA), but I am going to send request for the article you speak of.

I am Vit D deficient and was put on 50,000 iu Vit D3 1x per week for 3 months, and now I take 1000 iu daily. I have 6 month follow up next week, so I will ask her to test for B12, iron, ferritin, and folate, as well....

I feel like I am losing my mind most days, and the only part of my body that doesn't hurt is my hair...probably because it doesn't stay around long. It does grow back, though :)

Marz profile image
Marz

When I was diagnosed with Hashimotos in 2005 my anti'bodies were very high too. TSH - FT4 - FT3 were all in range. My GP here in Crete began treatment - as she said my thyroid needed support whilst under attack from anti-bodies. Made sense to me.

I went GF over 3 years ago and the anti-bodies have reduced considerably.

Hope you soon feel stronger.

teresasteinb profile image
teresasteinb in reply to Marz

Thank you for your advice and well wishes. Gluten free sounds very frightening to me, but I am willing to give it a try. I am an avid bread maker and cake/cookie baker. My significant other eats breads and cookies each and every day and is not supportive of even the thought of our kitchen kicking out the gluten, but it is beginning to feel as if it is a life and death situation for me... perhaps this is an exaggeration, but it doesn't feel that way most days....

Marz profile image
Marz in reply to teresasteinb

... it was only when I read the book - Why Isn't My Brain Working ? - by Dr Datis Kharrazian that I took the plunge and went GF. Reading how gluten molecules can penetrate the blood brain barrier and cause inflammation had me on side ! I need to preserve all the cells I can as I also have Hashimotos - and having just had my 70th it becomes increasingly important to do the best I can :-)

Think I need to read it again - have forgotten loads !

teresasteinb profile image
teresasteinb in reply to Marz

I am going to see if I can't get this book ordered TODAY and start reading. THANK YOU! THANK YOU! And Happy BeLated 70th Birthday!

Marz profile image
Marz in reply to teresasteinb

Alessano Fassarno is another Gluten Guy - and he is good looking too - well I think so ! He is a Doc in the States. You should be able to find him on the net. He often features on on-line Health Summits .... ( not 100% sure about the spelling of his name )

shaws profile image
shawsAdministrator in reply to Marz

Marz -happy birthday to you as well.

Marz profile image
Marz in reply to shaws

Thank you. 😊

Learner1 profile image
Learner1

Try going gluten free. Also, what are your selenium and iodine numbers? Many are iodine deficient... I have seen antibodies go away with fixing the above. In the meantime, your doctor should be treating your thyroid symptoms, not your lab values with those antibody numbers.

teresasteinb profile image
teresasteinb in reply to Learner1

Thank you for the advice. Luckily, I have an appointment scheduled with her next week, and I will ask about treatment plan for symptoms. I just wish there were a way that was less invasive than gluten free, but from what I have been reading, sounds like I really don't have much of a choice if I want to feel even remotely human again.

Question: I have suddenly developed this strange light orange colored spot above my top eyelid... it is just above my top eyelid and sort of jelly bean shaped, but smaller than a jelly bean. Do you think this could be related????

Learner1 profile image
Learner1 in reply to teresasteinb

Definitely have a doctor check out your jelly bean. I wouldn't want to speculate, but something is causing it.

Once upon a time, I thought getting gluten out of my life (and my mom's and daughter's) would be awful. We've all been gluten free, and almost grain free for over 5 years and don't miss it a bit once we realized all the costly health problems it was causing. Try a Paleo Diet - there are lots of great cookbooks these days.

There's a pretty good discussion of gliadin and thyroid antibodies at hashimotoshealing.com/celiac-disease-and-hashimotos/

For a discussion of what triggers non-celiac gluten sensitivity which can also lead to Hashimotos, look into Aristotle Vojdani's work.

Finally, Cyrex Labs has the best tests for the various gluten antibodies, autoimmune markers, and similar molecules that the body might also react to. I saw Dr. Tom O'Brian give a very interesting talk where he shared data on blood samples over a long time (U.S. Army members) and the development of autoimmune disease and connection to gluten.

If/when you decide to go off gluten, you'll need to be 100% gluten free over a few months to get the benefits. And look into nutrient deficiencies which may have arisen that could make things worse.

Also, be aware of anything else that could be causing inflammation, like a low-level chronic bacterial or viral infection.

There's probably more than one cause of your thyroid problem, so the sooner you begin whacking away at them, one by one, the sooner you can heal. Or, like me, things can spiral into worse problems like my cancer, and then you'll have more on your plate. Best to be persistent, find the root causes and go after them, even if it means changing your lifestyle.

Good luck!

Katka profile image
Katka

Teresa,

Dr Izabella Wentz who specialises on treatment of hashimoto's says if the antibodies are in > 1000 range that people get tested for H. Pylori. h pylori was found in over 50% OF patients with high antibodies. if you've not tested yourself yet I'd definitely recommend.

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