Thyroid UK
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Why aren't levels improving?

Hello I am new and I am here to ask why my levels aren't improving on 100mcg levothyroxine? Diagnosed 2011 with hypothyroidism. I have puffy eyes and face, bowels opening less often, joint pain, fatigue, muscle weakness, spasms, ulcers in and around mouth, dry eyes, eyelash loss, eyebrow loss, pale skin, heavy periods, bloating, trapped wind. I take the levothyroxine exactly as directed by GP and endocrinologist which is 1-2 hours away from food/drink. Is my dose likely too low? Was taking T3 before which helped my symptoms but new endocrinologist removed it. Thanks in advance.

TSH 5.1 (0.2 - 4.2)

FREE T4 14.7 (12 - 22)

FREE T3 3.3 (3.1 - 6.8)

THYROID PEROXIDASE ANTIBODY 722 (<34)

THYROGLOBULIN ANTIBODY 371.3 (<115)

ANTI TISSUE TRANSGLUTAMINASE ANTIBODY 2 (<1)

14 Replies
oldestnewest

I can tell immediately why you aren't improving and the fault lies either at your doctor or endocrinologist's door.

Your TSH is too high, the aim is 1 or below. Not 'somewhere' in the range.

Both FT4 and FT3 are at the bottom of the range instead of near the top.

Your antibodies are attacking your thyroid gland and you have an Autoimmune Thyroid Disease - also called Hashimoto's.

For someone diagnosed 7 years ago it is truly appalling.

They aren't supposed to withdraw T3 from people who were prescribed it before the latest T3 fiasco in which they put a blanket ban on it for new patients. Patient already on it should not have had it removed unless the patient agreed.

How cruel is that - to remove an essential thyroid hormone with the resultant clinical symptoms .

This is a past post re removal of T3:

healthunlocked.com/thyroidu...

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I am thinking about seeing an endo in Weston Super Mare that has had good feedback regarding monitoring on T3, can I ask on here about him?

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You can put up his/her name on a new post but ask for a Private Message to be sent to you about him/her..

Your post will then be closed and only private messages will be sent.

If you haven't had the name from Thyroiduk.org.uk you can email Dionne at tukadmin@thyroiduk.org and ask for a copy of recommended endos.

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From reading here for years and years I am not sure seeing an Endo will be the answer. Far better to ask questions here - follow the advice and return with more questions :-) You could of course be lucky - but do check out his credentials to ensure he does not just specialise in diabetes - in which case he will know little about the thyroid :-(

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I think this Anti tissue transglutiminase is positive for coeliac

Likely stopping T3 has upset gut

You should be offered endoscopy within 6 weeks to confirm

Can you post your vitamin levels since T3 was withdrawn

Another post about T3 removed and how to fight it

healthunlocked.com/thyroidu...

Why T3 should not be stopped

healthunlocked.com/thyroidu...

Typical posts after T3 stopped

healthunlocked.com/thyroidu...

healthunlocked.com/thyroidu...

healthunlocked.com/thyroidu...

healthunlocked.com/thyroidu...

You might want to consider DIO2 gene test too

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

Blue Horizon are also offering discount on more comprehensive DNA testing including DIO2

Thyroid UK are collecting evidence of malpractice due to removing clinically needed T3

Please consider sending a brief outline of this. How T3 improved you and the subsequent disaster since it was stopped. I would include the dire vitamin levels

thyroiduk.org.uk/tuk/get_in...

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Ferritin 22 (15 - 150)

Folate 1.7 (2.5 - 19.5)

Vitamin B12 244 (190 - 900)

Vitamin D 45.1 (25 - 50 deficiency)

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Forgot to add when T3 was stopped I was taking 175mcg levo now 100mcg levo

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So you have had massive drop in dose

Which idiot did this GP or endo?

Guessing vitamins crashed right out, TSH went low, FT4 too high.....reduced dose

We have seen this literally 100's of times

Suggest you put in complaint about previous endo removing T3 and subsequent disaster

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GP

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Think I might need some help writing a complaint

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Can you see a different GP?

Ask to clarify the tissue transglutiminase test results

How long since dose reduced to 100mcg?

Get TSH, FT4 and FT3 retested plus vitamin D, folate, ferritin and B12

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

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...

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Dose reduced to 100mcg 3 months go, these results 2 week old. Vitamin and mineral levels current ones

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I am afraid your GP and endo are clueless and it seems common.

You are undermedicated and badly need supplements.

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You need dose increase of 25mcg immediately

Retesting after 6-8 weeks. Very likely more increases

Ferritin, folate and B12 are dreadful and need urgent attention

Vitamin D is poor

See SeasideSusiedetailed supplements advice in links I posted above

Going strictly gluten free is likely necessary (after endoscopy if necessary) even if Coeliac test is negative

See different GP at the practice if you can

There are many, many patients had similar terrible reaction to having T3 removed

Write to your MP

Let Thyroid UK know via link I posted

See also Improve Thyroid Treatment group on Facebook

Lots of templates for letters to GP, MP etc

Once vitamin levels are optimal and Levo dose increased, if FT3 remains low then you are very likely to still need some T3

Email Thyroid UK for list of recommended thyroid specialists

please email Dionne:
tukadmin@thyroiduk.org

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