Thyroid UK
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Desperately seeking advise on excessive weight loss and other related issues.

My wife has been on levo for 51 years since the age of 5, however the past 14 months her health has declined rapidly.

The major factors have been rapid weight loss (11st to 7 st in the first 4 months), very sluggish bowels, tummy gurgling ,excess wind, lacks energy, and feels cold, gets stressed and displays OCD.

Her last blood test when well on 125mcg Thyroxine was in Sept 2012. The readings were: TSH 0.01 FT4 21.2 FT3 4.9.

Retesting in May 2013 when becoming unwell showed TSH 0.01 FT4 30.0 no t3 result while still on 125 mcg. (hyper signs)

After 4 endo visits her Thyroxine has been reduced to 50 mcg Last blood test in Feb this year on 50 mcg showed: TSH 0.788 FT4 13.5 FT3 2.3 We were told the T3 reading was at the bottom end of range. When asked if a T3 supplement would help we were told it would make no difference.

Her GP puts it all down to stress. Numerous blood tests show negative apart from Vit D which she now takes.

She went through similar ill health 13 years ago, weight loss etc, when the hospital discovered her thyroid levels were too low. ( Her doctor had gradually reduced her dosage the previous year from 200 to 75mcg which later told on her health) Her thyroxine was readjusted to 125 mcg and within weeks her health and weight restored. Sadly none of the medics we have seen are interested in what took place years ago.

Is the Thyroxine not working as well? as she showed signs of 'overcooking' on 125mcg while T3 readings have reduced.

Has the menopause played a roll with some hormonal imbalance?

Is a T3 supplement the way to go and where can it be obtained? as none of the doctors will trial her.

Her weight at present is 6st 6lbs.

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Taking T3 would address her low FT3 as she doesn't appear to be converting well. You can order private blood tests for FT3 and rT3 from Blue Horizon and Genova on thyroiduk.org

Has your wife had a coeliac screen? Malabsorption can cause weight loss and will also mean her vitamins are depleted.

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How awful for you both! That's an enormous weight loss. Under the circumstances I would definitely get private tests done. And the full panel of vitamins and minerals if they haven't all been done (you mention Vit D3 only), especially vit B12. I so hope you find an answer soon.

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Yes clutter shes had coeliac and cortisol test plus a synathen test all negative

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Coeliac test is notoriously unreliable. Your wife might benefit from gluten-free diet, it should help with bowels, gas and bloating.

Endo and multi disciplinary team suggested protein supplements, Complan type stuff for my weight loss. Tried 'em but can't abide them but maybe something similar for your wife?

Has your wife been seen by a gastroenterologist? Bacterial and parasitic infection may be responsible for the weight loss.

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She is due to see the gastroenterologist next month

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Don't know enough about analysing the test results - my figures were similar to your wife's (I've got Graves) but I never had T3 checked - has she had antibodies checked?

I certainly would not be happy if it was me and my doctor was putting all those symptoms down to stress or the menopause. That is an enormous weight loss - I would want a second opinion. Has your wife been referred to an endocrinologist?

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Hi fruitandnutcase. She has seen 4 different endos and have done complete thyroid tests which I presume covers antibodies

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please please ask GP to test her for vitamin B12!!! (and if it was done last year or 6 months ago just repeat it), those symptoms are also related to low b12 (I am not saying the levo or T3 should not be addressed but the B12 needs looking at too)

Read the document in this link for not only diagnosis but also symptoms:

b12d.org/b12-deficiency-pro...

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seems to me theres more going on here than just thyroid and dosage and my first question would be is she cooking with Aluminium , non stick , foil cookware or is your water supply treated with aluminium salts

Have they tested ferritin , folate aneamia ?

Does she have other strange symptoms ?

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Hi reallyfedup123. We do cook with Aluminium ware but I don't know how the water is treated other than it's flouridated in a hard water area. She has had a foliate test but not for ferritin. She does have a constant bad taste in her mouth

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Get rid of all that Aluminium cookware now

google H Tomlinson The Dangers Inherent in the use of Aluminium cookware

Use only stainless steel or glass or cast iron

do not drink flouridated water and phone your water company and ask what they treat the water with

Both Aluminium and Flouride hit the thyroid and thats just one of the parts of the body it attacks

I know the hell it causes ....been there got poisoned by it 30 yrs ago

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Has no doctor suggested a full CAT scan? Losing all that weight suddenly like that must have a cause. Hope it gets sorted soon. Dropping the thyroxine from 125mcg a day to 50mcg per day is a huge amount. It takes the body 6-8 weeks for a change in thyroxine medication to settle down and your wife is now hyperthyroid (regardless of what the TSH result might say). I imagine she is now experiencing hypothyroid symptoms. Taking T3 would help those symptoms (but you will struggle to get a doctor to prescribe it), but I think there might be something else going on too.

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I have to agree. I think it is dangerous to assume this is thyroid related without first ruling out other things. There are many things that can cause rapid weight loss. A full blood count would be essential and a CT scan would not be a bad idea.

I think it is irresponsible for doctors to assume it is related to an existing condition without looking wider.

50yearhypo, I hope they work out what it is so your wife can get back to full health quickly.

Carolyn x

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I would ask for a CA125 blood test as well. Better save than sorry.

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Just wanted to say hope your wife manages to get better health. X

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