Thyroid UK
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Under active thyroid diagnosed at 56yrs but could I have had the condition most of my life?

Now I am more aware of the wide range of symptoms of thyroidism, I have reflected on the ailments and some upsetting conditions over my life. As a child had bad constipation, as a teenager, irregular periods, heavy and extremely painful. As an adult, unexplained infertility, 24 years of hoping to conceive. Periods of low mood and depression throughout. Substantially grey haired in my 30’s and in the last 20 years increasing exhaustion and sensitivity to cold.

Now I know that being ‘in the range’ does not mean all is ok - I suspect the tests on thyroid and antibodies during years of infertility treatment were not properly understood by medics. I have always felt there was something that needed ‘tweaking’ to help my body function well.

I suspect that if I had had the chance to ‘tweak’ my thyroid, vitamins etc I wouldn’t have cost the NHS so much money!

What’s done is done. But I am concerned about what is going on now in the NHS regarding thyroid conditions and the inconsistent treatment that people are getting. Can anyone let me know what campaigns, lobbying or anything happening to improve the treatment of thyroid conditions in the NHS?

13 Replies
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Have you seen Thyroid UK's website? There's lots of information there and you can join if you want to.

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Yes I am aware of the website but haven’t fully explored it yet, but will do now I have more time, recently retired!

Thanks

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This website's good, too: nahypothyroidism.org/why-do...

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Have you had B12 and folate tested?

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Yes I have had B12 and folate tested recently.

B12 333 (150 - 833)

Folate 6.3 ( 3.1 - 20.5)

I am taking Vit D as severely deficient 9.6 ng/ml.

I am going to have B12 injections soon. Terrible cracks at edges of mouth, ringing in ears etc!

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Good that Dr is giving B12 injections soon because although B12 is in range it's still low and losing hair colour early is a possible symptom of B12 deficiency although it can also be genetic. Folate is also on the low side so check with the doctor but once you've started B12 injections, not before, it might help to take a B complex alongside to improve folate. What has the doctor prescribed for low vitamin D because it's below 30 so you should have been given loading doses if in the UK.

What about ferritin?

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Ask GP to test thyroid antibodies. It's likely that the cause of hypothyroidism is Hashimoto's, also called autoimmune thyroid disease. Diagnosed by high thyroid antibodies

Low vitamins are extremely common with Hashimoto's as gut is often affected and this leads to low stomach acid and then low vitamin levels

Low vitamin levels affect Thyroid hormone working

Poor gut function can lead leaky gut (literally holes in gut wall) this can cause food intolerances. Most common by far is gluten

According to Izabella Wentz the Thyroid Pharmacist approx 5% with Hashimoto's are coeliac, but over 80% find gluten free diet helps significantly. Either due to direct gluten intolerance (no test available) or due to leaky gut and gluten causing molecular mimicry (see Amy Myers link)

But don't be surprised that GP or endo never mention gut, gluten or low vitamins. Hashimoto's Gut connection is very poorly understood

Changing to a strictly gluten free diet may help reduce symptoms, help gut heal and slowly lower TPO antibodies

Ideally ask GP for coeliac blood test first

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Injections should be started asap. What's the delay?

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I think there is a lot of people who can relate. I'm certainly one if them!

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Me too, symptoms of low thyroid only realised when I placed myself on gluten free diet after bloating etc and went to see GP yet again. Then they did a coeliac test, it was obviously always going to be negative!! Then doctors realised my borderline low thyroid resulted in my thyroid working overtime with unaccountable weight gain, hair loss . In a way I'm relieved that my inability to lose weight wasn't my fault!!! Am hoping to see a private endo now as I'm not inspired by GP's knowledge, refering to Thyroid UK website and coeliac UK while I sat and waited!

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Same for me ~ I wish I'd known all this years ago, instead of being fobbed off by GPs and conned into taking all the useless meds for conditions I didn't even have!

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I wish that I had been more aware of the symptoms too as I think I possibly should have been medicated earlier in my life. Sending you best wishes on your retirement.

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Thank you all for your posts. It is sad that earlier recognition of thyroid problems by GP’s could have relieved so many from unnecessary conditions and poor health. Anyway no point in looking back, I just need to get on with improving my health now. I am finding this forum very informative and supportive on my journey to get better. Thanks.

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