Are my symptoms thyroid related: New to this. I... - Thyroid UK

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Are my symptoms thyroid related

kmlocke profile image
7 Replies

New to this. I was diagnosed in 2011 with Hashimoto, and multinodular thyroid. Had to start with a new doctor recently who took away the hashimoto diagnosis because my levels are within the normal range. My TSH levels bounce all over the place with resent levels on the low normal 0.7, my FT3/T4 are also on the low normal. I do have ultra sounds done every 6 months to monitor the growths. Recently I have been experiencing feelings of muscle weakness, fatigue, and extreme intolerance to the cold. I'm wondering if these new symptoms could be thyroid related.

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kmlocke profile image
kmlocke
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greygoose profile image
greygoose

Your doctor is a numbskull. If you've once had over-range antibodies, you have Hashi's, and it doesn't go away. Antibodies fluctuate, but you still have Hashi's. And that's why your hormone levels fluctuate.

I would say your new symptoms are most definitely related to hypo. They are hypo symptoms.

shaws profile image
shawsAdministrator

greygoose has used the correct adjecive for this doctor. None of them know exactly what is the purpose of the thyroid gland.

What you need is a Full Thyroid Function Test which is TSH, T4, T3, Free T4, Free T3 and thyroid antibodies. We have two labs and each will do the necessary tests the GP will not.

thyroiduk.org.uk/tuk/testin...

All tests have to be at the very earliest (TSH is highest then and that's all doctors seem to notice). Also allow 24 hour gap between last dose of levo and the test and take afterwards. This helps keep TSH at its highest as it drops throughout the day.

You also need B12, Vit D, iron, ferritin and folate. Everything has to be optimal.

Levo has to be taken first thing on an empty stomach with one full glass of water and wait an hour before eating. Food can interfere with the uptake of the hormones.

kmlocke profile image
kmlocke

Thank you all very much. I've been trying to find an endo that knows about the thyroid and not just diabetes. I am not on Levo because of the fluctuations in my TSH I can go from 1.7 down to 0.6. I worry because my mom had the same thyroid disease and all they did was monitor; until one day she had screaming high levels of TSH. It was so high they killed her thyroid immediately.

greygoose profile image
greygoose in reply to kmlocke

It was so high they killed her thyroid immediately.

Well, that was a stupid thing to do! Killing her thyroid wouldn't bring the TSH down, it would make it go higher. TSH is a pituitary hormone, not a thyroid hormone. It stimulates the thyroid gland to make more hormone. Obviously, if the thyroid cannot respond for any reason, the TSH just gets higher.

Have they tested anything other than your TSH and antibodies? You really need your FT4, FT3, vit D, vit B12, folate and ferritin tested. Do you have the results?

kmlocke profile image
kmlocke in reply to greygoose

I have not had the antibodies done in years, I have had the FT3 and FT4, both were on the low normal side. My D has been low, I take 5000u a day to keep it normal. I have never had vitamin B tested.

greygoose profile image
greygoose in reply to kmlocke

You don't need antibodies retested because you've been diagnosed with Hashi's. It doesn't go away, so no point in retesting for that. If your FT4/3 were low normal, you were probably hypo. Do you have the actual results?

So, you really should get your vit B12 (there are lots of B vits) and folate (another B vit) tested. It's very important for them to be optimal. And you need your ferritin tested.

SlowDragon profile image
SlowDragonAdministrator

If your antibodies are high this is Hashimoto's, (also known by medics here in UK more commonly as autoimmune thyroid disease). About 90% of all primary hypothyroidism in Uk is due to Hashimoto's

You still have Hashimoto's even if levels then become normal

Essential to test vitamin D, folate, ferritin and B12. Always get actual results and ranges. Post results when you have them, members can advise

Hashimoto's affects the gut and 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 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

thyroidpharmacist.com/artic...

thyroidpharmacist.com/artic...

amymyersmd.com/2017/02/3-im...

chriskresser.com/the-gluten...

scdlifestyle.com/2014/08/th...

drknews.com/changing-your-d...

thyroidpharmacist.com/artic...

Dose of thyroid replacement hormone should be high enough to bring TSH down to around, or just under one and FT4 towards TOP of range and FT3 at least HALF WAY in range

You sound under medicated, low vitamins are common as result

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

thyroidpharmacist.com/artic...

thyroidpharmacist.com/artic...

amymyersmd.com/2017/02/3-im...

chriskresser.com/the-gluten...

scdlifestyle.com/2014/08/th...

drknews.com/changing-your-d...

thyroidpharmacist.com/artic...

Dr Toft, past president of the British Thyroid Association and leading endocrinologist, states in Pulse Magazine,

"The appropriate dose of levothyroxine is that which restores euthyroidism and serum TSH to the lower part of the reference range - 0.2-0.5mU/l.

In this case, free thyroxine is likely to be in the upper part of its reference range or even slightly elevated – 18-22pmol/l.

Most patients will feel well in that circumstance. But some need a higher dose of levothyroxine to suppress serum TSH and then the serum-free T4 concentration will be elevated at around 24-28pmol/l.

This 'exogenous subclinical hyperthyroidism' is not dangerous as long as serum T3 is unequivocally normal – that is, serum total around T3 1.7nmol/l (reference range 1.0-2.2nmol/l)."

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