Unsure of what this means: Hi there, I'm new to... - Thyroid UK

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Unsure of what this means

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Hi there, I'm new to this site and was just looking for a bit of advice. Apologies if this is a bit of a long post. My brother was recently diagnosed with under active thyroid. With the ongoing undiagnosed symptoms I have had ever since I can remember, I asked my doc for thyroid test, she wrote to me and said all came back normal. I then had a letter a few weeks later saying I has thyroid anyibodies...is this normal?? She didn't seem concerned. She wanted to leave things as was but I didn't feel happy to do so. She said she would refer me to an endo (reluctantly) I've seen him and he said all the readings are fine, I do have the antibodies which mean I have the 'thyroid gene' (or something like that), they will monitor with routine bloods. it's not that I'm looking for medication or anything, just looking for answers, he did mention steroid level was on the low end or normal and would looks at andrenal glands and food allergies....I got the feeling that perhaps he doesn't think this is what is causing my symptoms....thank you

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Clutter profile image
Clutter

Welcome to the forum, Yingyang3.

'Normal' is a very broad range and being at the top or bottom of it can make a a huge difference to how symptomatic a person is. Ask your GP receptionist or practice manager for your recent thyroid results and the lab ref ranges (the figures in brackets after your results) and post them in a new question. If the endo's results haven't been sent to your GP you may be able to get them from the endo's secretary.

Positive autoimmune thyroid antibodies (Hashimoto's) cause 90% of primary hypothyroidism. Unfortunately, Hashimoto's will eventually destroy your thyroid gland but until your TSH is over range and your FT4 or FT3 below range you won't get a diagnosis and treatment for hypothyroidism. A gluten-free diet can be helpful in managing Hashimoto's and reducing antibodies which will prolong the life of your thyroid gland.

It's not uncommon to have adrenal problems when becoming hypothyroid and it will help to have any adrenal issues addressed before treatment for hypothyroidism starts as it helps toleration of Levothyroxine which is thyroid hormone replacement.

thyroiduk.org.uk/tuk/diagno...

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

in reply toClutter

Oh wow, I've a lot of reading to do there once I'm feeling more alert 😴 thank you for your input.

It's just difficult, they haven't explained if everyone has these antibodies and if it's normal?

They haven't expalined if I actually have a condition or not....just said I may develop problems in the future and I may not (which is ironic as I feel I've been having problems for years).

Ive cut out coffee and only been drinking water, I've tweaked my diet and increased my exercise, although not sure how much I should be changing before further tests (if I get them I've not heard from them in a while now).

I will definitely ask for my results and post them for some further advice.

Thank you for your time, it's nice to speak to someone about it all

Clutter profile image
Clutter in reply to

Yingyang3, most people have some antibodies but it depends how many as to whether they are considered positive for Hashimoto's and as I said above, 90% of hypothyroidism is due to Hashimoto's.

Having positive antibodies means you are likely to become hypothyroid in the future. You don't currently have a hypothyroid condition according to BTA protocols but will when your TSH goes over range &/or your FT4 &/or FT3 drop below range.

Read Dr. A. Toft's comments about antibodies in the link below. His view is that treatment with Levothyroxine in the prescence of antibodies can 'nip things in the bud'. Unfortunately, not much notice is taken as prevention of progression to overt hypothyroidism doesn't seem high on NHS priorities.

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

in reply toClutter

Wow thank you so much I will definitely set aside time to read this all properly. You have been a star ☺️

in reply toClutter

I've now managed to read the links you posted.

Thank you for this there's tonnes of info it here...in sure I'll nip back to these pages again!

I read Dr A Tofts comments and seem very intriguing! Some of it went a little over my head but think I grasped the idea.

I am now going to purchase a diary and make notes of previous symptoms and how they have changed...and monitor from now out..brilliant advice ☺️

i know I'm no doctor..but do feel in my teens I was hyper and now I'm the opposite...well that's how I feel anyway.

Marz profile image
Marz

Receiving treatment for your thyroid early on will at least support your thyroid. I was diagnosed with Hashimotos in 2005 when the TSH - FT4 - FT3 were all in range - so would be considered normal in the UK. I live in Crete and was diagnosed based on the very high anti-bodies and the scan revealing nodes. My GP suggested the T4 as supporting the thyroid.....

It may be a good idea to have the following tested.... Ferritin - Iron - Folate - B12 - VitD as they all need to be at the top of their various ranges for you to feel well.

How is your gut - auto-immune issues normally start there - hence Clutter suggested trying to be Gluten Free. To the right of this page under the heading Topics - you will see Hashimotos with 980 posts :-) - so lots of reading.

Very few Docs/Endos seem to understand the implications of auto-immune diseases - and there are 100's. It is all about putting out the fire before it spreads. We are all so individual and this scares the Docs - they like the one size fits all pill.

I have learnt much since joining this forum - but am afraid for those of us that make good progress - it is all about learning and taking control of our own health.

Another thing to consider is that the blood tests lag years behind what is actually happening in the body. I was 59 before diagnosis some 10 years ago so am aware the damage that can be done by Docs dragging their feet due to ignorance and lack of training. Of course their hands are tied due to the various bodies that control modern medicine in the UK and elsewhere.

Wishing you well .....

in reply toMarz

My endo did say that treatment when within range won't necessarily do anything for my symptoms. The thing is I had the opposite of all of my symptoms for years, I was wired couldn't sit still, couldn't sleep, couldn't stop thinking my mind would always race. Now I'm the complete opposite.

I have a lot of other symptoms that ive had for years. I've gone to the doctor over years to be told it's for a variety of reasons, IBS, inflamed kidneys, kidney stones, depression, from having children... Always been given anti inflammatories and anti depressants (which I never took) as I knew this was not the case.

Yes I have had issues with my tummy, have been told it's IBS. I have had feelings of nausea for years and years.

My hair had been falling out recently. I have noticed white marks appearing all over my skin only small but I notice. I have the most weak bladder In and out the toilet like a yo yo.

So many symptoms etc over the years which I've never had any answers to that I stopped going to the doctor at all. Only when I felt like a needed antibiotics or I needed to renew my inhalers.

I think I have some reading to do and need to request my results and take it from there.

I hope you are feeling much better since your treatment! Nothing worse than constantly feeling below parr.

Thank you are all your input, it's truely appreciated ☺️

Marz profile image
Marz in reply to

Sorry your Endo is wrong ! You will improve once on treatment - maybe not immediately - but you WILL improve. You were probably Hyper when you couldn't sleep and then the thyroid is worn down and we go hypo with Hashimotos.

You mention an inhaler - umm - yet another symptom linked to the low thyroid. Please do start having a good read and if you would like some suggestions for good websites and books then do ask.

So much to read - and so much to learn.

:-)

in reply toMarz

Thank you so much, yes there is lots to learn and try and get my head around so it seems!

I read something that listed aymptoms and was utterly shocked at the amount I ticked off...things I just stopped thinking about and put to the back of mind mind as sympoms I'd always just happen to have...always been told by doctors 'you must be prone to this'

Always feel like my immune system is below parr.

Well thank you I have requested my results from doctors so will wait to see ☺️

Marz profile image
Marz in reply to

:-)

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