Confused by results : Hello! I'm a little... - Thyroid UK

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Confused by results

Peachy4130 profile image
Peachy4130

Hello!

I'm a little confused with recent results (I was diagnosed with Hashimoto 1.5yrs ago)

On 10 Sept my TSH was 0.05 and I was on 75mcg Levothyroxine daily

So was told to reduce to 50mcg daily

Retested on the 1 Nov and TSH is 19 so told to return to 75mcg daily and retest in 3mths

My dr only seems to look at TSH so I don't know the other levels.

I've been feeling run down, experiencing anxiety and gaining weight between the two tests, but having a small baby people say it's because of baby (despite the fact that he sleeps really well & is very contented)

My question is with my meds increases will return my TSH to 0.05 which will lead to a reduction in meds and the ultimately a raised TSH? I feel like I'm just going to be yo-Yoing between the two!

Am I missing something or is that how the treatment should work? Or am I expecting too much?

Any advice or personal experiences would be very welcome!

Thank you!

6 Replies
SeasideSusie profile image
SeasideSusieAdministrator

Peachy

You have Hashi's, that's what Hashi's does, the antibody attacks cause fluctuations in test results and symptoms. When the antibodies attack they dump a load of hormone into your bloodstream which can cause test results that look like you're overmedicated, and maybe you experience hyper-type symptoms. It's called a Hashi's flare or Hashi's swing. It's temporary and things go back to normal.

Not many doctors understand Hashi's so mess about with your dose and often make you worse

hypothyroidmom.com/hashimot...

stopthethyroidmadness.com/h...

stopthethyroidmadness.com/h...

thyroiduk.org/tuk/about_the...

Thank you for these links- I've made a start reading them.

I feel very uninformed about this and these will really help.

Thank you for taking the time to share them!

Have a great day

SlowDragon profile image
SlowDragonAdministrator

About 90% of all hypothyroidism in Uk is due to Hashimoto's so it would be good if medics got to grips with it.

Just dosing according to TSH leaves us with continuing changes in dose, feeling worse with changing

With Hashimoto's, until it's under control, our gut can be badly affected. Low stomach acid can lead to poor absorption of vitamins. Low vitamin levels stop thyroid hormones working.

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

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

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...

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)."

You can obtain a copy of the article by emailing louise.roberts@thyroiduk.org print it and highlight question 6 to show your doctor.

Thank you! Dr told me to take a multi vitamin as I have low iron & Vit D...seems I'm not seeing the bigger picture.

Thank you for helping, I'm keep to educate myself now!

I've requested the article so I'll have it ready for my next appointment. Thanks so much!

SlowDragon profile image
SlowDragonAdministrator in reply to Peachy4130

Sounds like you have low vitamin levels. Multivitamins are definitely not a good idea....too little .....and often wrong things

Eg iodine is definitely not a good idea for anyone with Hashimoto's

Post results for vitamin D, folate, ferritin and B12 if you have them, including ranges (on newcpost probably best idea)

See this reply from SeasideSusie regarding what is far far to common - GP completely ignoring dire vitamins

Thyroid hormones can not work when vitamins are too low

healthunlocked.com/thyroidu...

Next time your silly doctor wants to reduce your dose, tell him that with Hashi's, you need to have your TSH suppressed, to minimise immune system attacks, and you will only consent to lower your dose if the FT3 is tested and proves to be over-range. He probably won't have the first idea what you're talking about, but it might make him think. You need to know more than him about your disease - which isn't difficult! He's there to advise you, not dictate to you - especially not as he has no idea what he's doing! Up to you to guide him. :)

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