Endo says I should stop medication: Hi I am new... - Thyroid UK

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Endo says I should stop medication

LaceyT5 profile image
11 Replies

Hi I am new, is this the right thing to do. Endo says I am overmedicated on levothyroxine 175mcg. Diagnosed hypothyroid in 2013.

Symptoms are dry skin, fatigue, difficulty swallowing, pins and needles, tight feeling in throat, flaky nails, chapped lips, tinnitus, constipation, periods being heavy, losing hair, muscle cramps and spasms, depression, memory loss, feeling cold, weight gain, sores around my mouth that bleed.

Thank you

TSH 0.02 (0.2 - 4.2)

Free T4 20.1 (12 - 22)

Free T3 3.5 (3.1 - 6.8)

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LaceyT5
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11 Replies
SlowDragon profile image
SlowDragonAdministrator

No your FT4 and FT3 are both in range. In fact FT3 is LOW, showing poor conversion

Your endo is probably a Diabetes specialist knowing little about thyroid

Do you have high thyroid antibodies? This is Hashimoto's also called autoimmune thyroid disease

Extremely common to have very low vitamin levels. This causes low TSH, yet you remain hypothyroid

If you have test results for vitamin D, folate, ferritin and B12 post them and ranges

Have you had T3 started and then withdrawn ?

Hashimoto's affects the gut and leads to low vitamin levels

Low vitamin levels stop 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

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...

Low stomach acid can be an issue

Lots of posts on here about how to improve with Apple cider vinegar or Betaine HCL

thyroidpharmacist.com/artic...

drmyhill.co.uk/wiki/hypochl...

scdlifestyle.com/2012/03/3-...

healthunlocked.com/thyroidu...

Other things to help heal gut lining

Bone broth

thyroidpharmacist.com/artic...

Probiotics

carolinasthyroidinstitute.c...

Getting vitamins to correct levels, often needing to be strictly gluten free and high enough dose of Levothyroxine high enough all help

If then FT3 still remains low then many with Hashimoto's need small dose of T3 in addition to Levo

Read as much as possible about Hashimoto's. See Thyroid Uk Website and read posts on here you will see sadly your case is not unusual

LaceyT5 profile image
LaceyT5 in reply to SlowDragon

I think I have Hashimotos. I have poor conversion of T4 to T3 and was on T3 that helped.

Thyroid peroxidase antibody level 704.5 (<34)

Thyroglobulin antibody level 376.3 (<115)

PPower profile image
PPower in reply to LaceyT5

Yes, you have Hashimotos. Please don't stop taking your medication - what is your endo thinking???!!! Looks like you could use some T3. Why did you stop taking it?

LaceyT5 profile image
LaceyT5 in reply to PPower

Endo did not approve of it but previous endo did

SlowDragon profile image
SlowDragonAdministrator in reply to LaceyT5

Thyroid UK are compling list of patients who were doing ok on T3 and had it removed

Email a brief outline to

dionne.fulcher@thyroidUK.org

Highly likely you have low vitamin levels as result

That is often the result, this then causes thyroid hormones not to used. Blood tests show low TSH but you remain hypo

Get GP to test vitamin D, folate, ferritin and B12

Post results and ranges when you get them

Hashimoto's affects the gut and leads to low vitamin levels

Low vitamin levels stop 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

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...

jimh111 profile image
jimh111

It would be interesting (to me at least!) to know your blood test results on a lower dose of levothyroxine. It appears that your TSH is quite low for your combined fT3, fT4 levels. My view is that sometimes the TSH 'set point' becomes down-regulated and this leads to impaired T4 to T3 conversion. It's difficult to find absolute proof this occurs but there is some evidence. Your low fT3 is consistent with this. Also, your signs and symptoms indicate hypothyroidism and ultimately it is the signs and symptoms along with response to thyroid hormone that is definitive even if the numbers look good. I would suggest your endo reduces your levothyroxine a little and trials you on liothyronine, perhaps working up to 20 mcg daily, 10 mcg at breakfast and 10 mcg at bedtime.

I'm pretty sure this will be a battle, endos. are pretty useless at diagnosing and treating hypothyroidism, they tend to diagnose and treat numbers. I would give it a try and push hard for a trial of liothyronine. Your endo could monitor observable signs like your dry skin, ankle reflex times, weight and pulse so that they have an objective measure as well as your description of symptoms.

LaceyT5 profile image
LaceyT5 in reply to jimh111

I was on T3 which helped my conversion.

LaceyT5 profile image
LaceyT5 in reply to jimh111

Pulse below 50, no ankle reflex and weight has gone up 10kg within the past month.

LaceyT5 profile image
LaceyT5 in reply to jimh111

On lower dose of levothyroxine (50mcg)

TSH 6.01 (0.2 - 4.2)

Free T4 12.7 (12 - 22)

Free T3 2.5 (3.1 - 6.8)

Fruitandnutcase profile image
Fruitandnutcase

If your endo won’t test the above get yourself a Thyroid 11 from Blue Horizons and find out for yourself. You want all four well up in their ranges to help your thyroid.

Maybe now your TSH is high and everything else is below range he will listen to you, take your symptoms into consideration and notice that you aren’t well.

TSH110 profile image
TSH110

I’d ditch the endo and start self medication on NDT but I am a maverick! I am a much more healthy maverick as a result tho. I am gobsmacked by your results and the endo’s solution - to make you even iller by undermedicating and refusing to give you the T3 that clearly you so desperately need.

I guess you have nothing to loose by a directly challenging this incompetence.

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