Newbie: Hi I was diagnosed with an underactive... - Thyroid UK

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Jkat profile image
Jkat
10 Replies

Hi I was diagnosed with an underactive thyroid in 2013 and my GP is reluctant to increase my levothyroxine of 50mcg because of the risk of me becoming hyperthyroid. My endo has also said he believes I am suffering from some form of general anxiety disorder.

I have been on higher doses before, as much as 175mcg levothyroxine with 10mcg T3. Symptoms are currently low libido, period pain worsening the more I am into my cycle, joint pain, red blotches on skin, weight gain, tiredness, memory loss, poor concentration, sweating with exertion, hair loss, pins and needles, periods heavy, puffy eyes and black circles around eyes, feeling cold, nails flaky and splitting, eyelashes and eyebrows looking sparser.

Any help would be appreciated. Thank you.

DEC-2017 - 50mcg levothyroxine

Serum TSH *8.5 mIU/L (0.2 - 4.2)

Serum Free T4 14.7 pmol/L (12.0 - 22.0)

Serum Free T3 3.3 pmol/L (3.1 - 6.8)

OCT-2017 - 175mcg levothyroxine and 10mcg T3

Serum TSH *<0.02 mIU/L (0.2 - 4.2)

Serum Free T4 21.3 pmol/L (12 - 22)

Serum Free T3 5.2 pmol/L (3.1 - 6.8)

Thyroid peroxidase antibodies *848.1 IU/mL (<34)

Thyroglobulin antibodies *389.3 IU/mL (<115)

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Jkat
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SlowDragon profile image
SlowDragonAdministrator

Can you add your most recent blood test results on 50mcg

Also results when you were on 175mcg plus 10mcg T3

Would expect you are now severely under medicated

Extremely likely to have terrible vitamin levels

Was it different endo stopped your T3? Probably a Diabetes specialist.

Stopping T3 trashes vitamin levels. Get GP to test vitamin D, folate, ferritin and B12 ASAP if not been done since T3 stopped

Typical posts after T3 stopped showing low vitamin levels

healthunlocked.com/thyroidu...

healthunlocked.com/thyroidu...

healthunlocked.com/thyroidu...

healthunlocked.com/thyroidu...

healthunlocked.com/thyroidu...

Presumably you have Hashimoto's (high thyroid antibodies)?

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...

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)."

You can obtain a copy of the articles from Thyroid UK email print it and highlight question 6 to show your doctor

please email Dionne:
tukadmin@thyroiduk.org

Prof Toft - article just published now saying T3 is likely essential for many

rcpe.ac.uk/sites/default/fi...

You will need to increase Levo back up until TSH is around one and FT4 towards top of range and FT3 at least half way in range

Retesting 6-8 weeks after after each dose increase

All thyroid tests should be done as early as possible in morning and fasting and don't take Levo in the 24 hours prior to test, delay and take straight after. This gives highest TSH, lowest FT4 and most consistent results

Improving vitamins with significant supplements, assuming they are dire

If you have Hashimoto's then likely to need strictly gluten free diet too

If after all these FT3 remains low, like many of us with Hashimoto's, you may need to restart small dose of T3

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, assuming you have them!

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

Recent debate in Scottish parliament

scottishparliament.tv/meeti...

Jkat profile image
Jkat in reply toSlowDragon

DEC-2017 - 50mcg levothyroxine

Serum TSH *8.5 mIU/L (0.2 - 4.2)

Serum Free T4 14.7 pmol/L (12.0 - 22.0)

Serum Free T3 3.3 pmol/L (3.1 - 6.8)

OCT-2017 - 175mcg levothyroxine and 10mcg T3

Serum TSH *<0.02 (0.2 - 4.2)

Serum Free T4 21.3 (12 - 22)

Serum Free T3 5.2 (3.1 - 6.8)

Thyroid peroxidase antibodies *848.1 (<34)

Thyroglobulin antibodies *389.3 (<115)

SlowDragon profile image
SlowDragonAdministrator in reply toJkat

So there was absolutely nothing wrong with October results. Endo freaked at low TSH, but FT4 was in range (just) and FT3 actually a touch low . you were only taking 10mcg T3. Lots of us take 20-25mcg T3

You very definitely have Hashimoto's. You probably had very low vitamins in October

No doubt vitamins will be dire now

Your TSH now is way over range at 8.5

Make an urgent appointment to see a different GP, if yours won't agree to 25mcg dose increase

Insist on testing for coeliac, vitamin D, folate, ferritin and B12

Here's a typical post that is possibly like your results in October with low vitamins affecting conversion, causing high FT4 and low FT3

Endo incorrectly wants dose reduced

healthunlocked.com/thyroidu...

healthunlocked.com/thyroidu...

How did you feel in October? Still hypo?

Highly likely you need to be strictly gluten free. Even if you have no gut symptoms. Get Coeliac blood test first

Jkat profile image
Jkat in reply toSlowDragon

I still had hypo symptoms in October. I had vitamins and minerals tested in December 2017. I supplement vitamin D 9000IU (Better You oral spray 3000IU x3) because my levels did not improve on 3000IU. Have been getting an increase in pains in ribs, hips and tibia bone that I cracked 13 years ago. Thanks.

SlowDragon profile image
SlowDragonAdministrator in reply toJkat

Follow SeasideSusie detailed supplements advice in all those links I gave you

You need to add magnesium and vitamin K2 when on high dose vitamin D

Vitamins are terrible because Hashimoto's is not being treated in any way adequately

Jkat profile image
Jkat in reply toSlowDragon

Vitamin D 61.1 nmol/L (50 - 75 suboptimal)

Ferritin 15 ug/L (15 - 150)

Folate 2.2 ug/L (2.5 - 19.5)

Vitamin B12 221 pg/L (190 - 900)

SlowDragon profile image
SlowDragonAdministrator in reply toJkat

Are these from now, or October?

All too low

Vitamin D still low despite 9000iu daily!

Ask GP for testing for Pernicious Anaemia before very likely to need B12 injections

Folate and B12 work together and are both low

Do you have symptoms of low B12

b12deficiency.info/signs-an...

Ask B12 advice on

healthunlocked.com/pasoc

Ferritin much too low. Ask for full iron panel to be done

Jkat profile image
Jkat in reply toSlowDragon

From December 2017. Complete blood count only showed MCV *80.2 (83 - 98) MCHC *375 (310 - 360) Iron was in range 7.2 (6 - 26) Transferrin saturation 13 (12 - 45) also from December 2017

SlowDragon profile image
SlowDragonAdministrator in reply toJkat

I am not good on these results

Will tag in humanbean and SeasideSusie

I think this shows you are Anaemic

SeasideSusie profile image
SeasideSusieRemembering in reply toJkat

Low MCV and high MCHC suggest iron deficiency anaemia plus your serum iron and trans sat way too low in range. You need to ask your GP for appropriate treatment which should be 3 X Ferrous Fumarate daily (take each tablet with 1000mg Vit C to aid absorption and help prevent constipation) and start eating liver regularly (no more than 200g per week due to it's high Vit A content).

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