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Autoimmune disease

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Another thyroid one here!

8 replies

MissisBoote · 24/08/2018 20:24

I've had me/CFS for nearly 5 years and just got my annual blood test results back.

I'm not 100% convinced that there's not a problem with my thyroid despite results being in the normal range. I've also developed a goitre on one side of my thyroid in the last few years. It's had a needle biopsy and all fine so they're going to leave it unless it grows too big.

I've always been freezing cold since I've been a child. My fingers are often blue as soon as the temperature drops even a degree in the summer.

The photo shows my test results over the last few years so you can see for comparison.

I've also been taking 3000iu vit d for the last year along with a high strength multi vitamin and a sublingual vit b12 for three last three years. The b12 is slowly going up.

Any insight from you wonderfully knowledgeable people? Grin

Another thyroid one here!
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NaToth · 25/08/2018 16:58

Have a look at Secondary Hypothyroidism, where the disconnect is at a different point of the biochemical reaction and TSH doesn't rise as it does in Primary Hypothyroidism.

Whether secondary Hypothyroidism can be proven or not, your FT4 is in the bottom half of the reference range, instead of the top quarter, which means your FT3 will be way too low, which could well be where your symptoms come from.

I was in a similar position some years ago and was diagnosed with CFS. Thyroid replacement has changed my life and I am now 100% well. This is definitely worth pursuing.

MissisBoote · 25/08/2018 17:20

Thank you NaToth

How did you get your doctor take you seriously? Did you ask for a referral to an endocrinologist?
Did they just trial thyroid drugs on you?

So pleased to hear that you are 100% well now!

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MissisBoote · 25/08/2018 17:22

I've also had high cholesterol which I managed to reduce by taking plant sterols. But there's no way my diet would have given me such high cholesterol. It went from something like 3.1 to 8 in a year Shock

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NaToth · 26/08/2018 10:21

My story is long and complicated, so I won5 bore you with it, but in the end a proper replacement dose of thyroxine was the only thing we hadn't tried ...

Before the TSH test was invented, raised cholesterol was a diagnostic for Hypothyroidism.

MissisBoote · 26/08/2018 11:15

Thanks - I'm going to get my ft3 tested and see what the results of that are.

Then hopefully back to the doctor with some positive action.

Yes, I read about raised cholesterol being a side effect of secondary hypothyroidism.

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MissisBoote · 31/08/2018 11:15

@NaToth - here are my results for T3 and antibodies.

All in range so it looks as if no problems. Any thoughts?

Another thyroid one here!
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NaToth · 31/08/2018 17:04

Don't fall into the trap of thinking that 'in range' means optimal. Your antibodies are negative, so no autoimmune thyroiditis, but your FT3 is still too low, which could account for your symptoms.

It looks to me as if your pituitary is a bit sluggish, so your TSH doesn't rise as one would expect with FT4 about mid-range and FT3 below mid-range.

I doubt any NHS doctor will treat you, but the good people at Thyroid Patient Advocacy may be able to help you as they helped me when I was in this position,

MissisBoote · 31/08/2018 18:11

Oh gosh - yes - well aware of the risk of not questioning 'in range' results. I have a folder full of my blood test results so I can double check everything :o

I'll check out the thyroid patient advocacy people - thanks for all of your input!

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