Thyroid UK
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Newbie!! No idea where to turn

Hi I am new and haven't been feeling well on my current dose of Levothyroxine. I was diagnosed in 2012 with hypothyroidism. Do I post results here?

Have so many test results that I don't know where to turn, have felt unwell for as long as I can remember. My current age is 24 years old and I am female.

Symptoms are mainly ears ringing, pins and needles in toes, feeling cold, sweating, weight loss, losing hair, swelling in neck, hard stools, heavy periods, tiredness, dry eyes, flaky and splitting nails, feeling short of breath, low heart rate, depression, low libido, low concentration, puffy eyes, eyelashes falling out, heaviness in legs and feet, cracked corners of mouth

Thank you in advance x

December 2017 - 25mcg Levothyroxine since Dec 2017 from 175mcg Levothyroxine/800iu D3 once a day/3x 210mg ferrous fumarate/5mg folic acid once a day/B12 injections every 3 months

TSH 4.69 (0.2 - 4.2)

FT4 14.7 (12 - 22)

FT3 3.2 (3.1 - 6.8)

THYROID PEROXIDASE ANTIBODIES *504.5 (<34)

THYROGLOBULIN ANTIBODIES *377.3 (<115)

FERRITIN 56 (30 - 400)

FOLATE *2.2 (2.5 - 19.5)

VITAMIN B12 261 (190 - 900)

VITAMIN D TOTAL 60.2 (50 - 75 SUBOPTIMAL)

RED BLOOD COUNT 4.40 (3.80 - 5.80)

WHITE CELL COUNT 4.3 (4.0 - 11.0)

MCV *78.5 (80 - 98)

MCHC *356 (310 - 350)

HAEMOGLOBIN ESTIMATION 117 (115 - 150)

PLATELETS 250 (140 - 400)

IRON 6.1 (6 - 26)

TRANSFERRIN SATURATION 12 (12 - 45)

Ferrous fumarate taken since 2013

Folic acid taken since 2010

Vitamin B12 injections started June 2017

Vitamin D started 2011

16 Replies
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Elliep9,

Perhaps you could post your recent thyroid results and ranges and, if you have them, ferritin, vitamin D, B12 and folate results and ranges, iron panel and full blood count. Say how much Levothyroxine you are taking and and other meds and supplements.

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Done thank you

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Welcome to our forum and you are one of the many thousands who are struggling.

You are too young to be struggling with replacement thyroid hormones so I will give some hints of how to get the best out of blood tests. Many doctors believe if our TSH is 'in range' we are on sufficient. This isn't the case so I suggest you request the GP to test:-

TSH, T4, T3, Free T4, Free T3 and thyroid antibodies. B12, Vit D, iron, ferritin and folate (deficiencies in the vits/minerals can also cause symptoms).

All blood tests have to be at the very earliest, fasting (you can drink water) and allow a gap of 24 hours between your last dose and the test and take it afterwards. If you take a bedtime dose, miss this and take after test and bedtime dose as usual.

Get a print-out of your results and they must have the ranges. Ranges inform members of how your results compare to the ranges.

I am sure you can tick of more than a couple of clinical symptoms. :)

thyroiduk.org.uk/tuk/about_...

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Done thank you, any advice would be appreciated

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When you get the blood tests suggested and put them on a new post with the ranges members will respond. Many doctors or labs may not do all that you request but we have private labs (2) which will do those not tested or you may prefer to get them privately. GP should still do vits/minerals.

The two private labs are Blue Horizon and Medichecks and the are home pin-prick blood tests so make sure you are well hydrated a couple of days before you draw blood. I think as well they can arrange to have your blood drawn if you prefer that.

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I have posted them all thank you

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EllieP9,

You are undermedicated to have TSH over range and FT3 low in range. Ask your GP to increase dose.

The goal of Levothyroxine is to restore the patient to euthyroid status. For most patients that will be when TSH is 0.2 - 1.0 with FT4 in the upper range. FT4 needs to be in the upper range in order that sufficient T3 is converted. Read Treatment Options in thyroiduk.org.uk/tuk/about_... Email dionne.fulcher@thyroiduk.org if you would like a copy of the Pulse article to show your GP.

Thyroid peroxidase antibodies are positive for autoimmune thyroid disease (Hashimoto's). There is no cure for Hashimoto's which causes 90% of hypothyroidism. Levothyroxine treatment is for the low thyroid levels it causes. Many people have found that 100% gluten-free diet is helpful in reducing Hashi flares, symptoms and eventually antibodies.

chriskresser.com/the-gluten...

thyroiduk.org.uk/tuk/about_...

Ferritin is sub optimal and low MCV, transferrin, and iron indicate iron deficiency anaemia.

Vit D is insufficient.

Folate is deficient.

B12 is low and may be deficient.

What treatment is your GP giving you?

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I have added what I take to the post

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Elliep9,

Ask your GP whether folic acid dose can be increased. Doesn't seem right that it remains deficient for years on 5mg.

B12 is low. If injections are 3 monthly perhaps you need them at 8 week intervals. healthunlocked.com/pasoc are the experts on pernicious anaemia, B12 and folate deficiency.

How much Ferrous Fumarate and vitamin D are you taking?

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210mg ferrous fumarate 3x since 2013, vitamin D 800iu since 2011

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Elliep9,

Iron shouldn't still be deficient. Your GP should investigate tissue transglutaminase to rule out Coeliac disease causing malabsorption. If not coeliac disease, then perhaps you should be referred to a haemotologist or gastroenterologist to see why your vitamins and minerals remain deficient.

800iu is a maitenance dose to be prescribed once vitD is replete >75. I would buy your own vitD D3 and take 5,000iu daily x 8 weeks and then reduce to 5,000iu alternate days and retest in late April. Take vitd 4 hours away from Levothyroxine.

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Other blood levels are

ANTI NUCLEAR ANTIBODIES *POSITIVE, SPECKLED

ANTI SMOOTH MUSCLE ANTIBODIES *POSITIVE

ANTI PARIETAL ANTIBODIES NEGATIVE

ANTI LKM ANTIBODIES NEGATIVE

FSH 4.6

LH 6.7

TESTOSTERONE *1.9 (0.5 - 1.7)

PLASMA VISCOSITY *5.8 (<5)

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Its reads to me that your dose has been changed from 175mcg levothyroxine down to a mere 25mcg...if thats correct shoot your doctor you need an immediate dose increase and another in 4 weeks and another until your TSH is 1.0 or below your freet4 is more like 19 and your freet3 is more like 5.5

You also need referring to a specialist to find out why your ferritin etc is still so low

1 like
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Who reduced your dose from 175mcg to 25mcg?

GP or endo?

Do you have results from when on 175mcg?

You are now terribly under medicated. You need immediate dose increase. If you can cope with increasing by 50mcg.

Usually dose is stepped up by 25mcg, retested after 6-8 weeks. And repeated until TSH is around one and FT4 towards top of range and FT3 at least half way in range

Your vitamins are terrible because of the Hashimoto's

Typical Low vitamins due to under medication and detailed supplements advice on how to improve

healthunlocked.com/thyroidu...

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 hypothyroidism in Uk is due to Hashimoto's

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

Persistent low vitamins with supplements suggests coeliac disease or gluten intolerance

gluten.org/resources/health...

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

Always take Levo on empty stomach and then nothing apart from water for at least an hour after. Many take on waking, but it may be more convenient and possibly more effective taken at bedtime

verywell.com/should-i-take-...

Many people find Levothyroxine brands are not interchangeable. Once you find a brand that suits you, best to make sure to only get that one at each prescription. Watch out for brand change when dose is increased

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

Getting vitamins optimal is essential, increases in Levo until TSH is around one and FT4 towards top of range

Strictly gluten free diet very likely to help or be essential

If FT3 still remains low after this then, like many with Hashimoto's you may need the addition of small dose of T3

Professor Toft recent article saying, T3 may be necessary for many

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

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Hi there

Did you really mean that your doc reduced your dose from 175 to 25 - if so, need new doc asap and make a complaint to the practice manager. They're clearly not doing enough in regards to you vitamin levels as well.

Agree something likely wrong with your stomach as don't appear to be able to absorb anything and likeliest culprit is coeliacs or gluten intolerance. Blood test is unreliable as stated on NHS website so even if this is negative, you should request a biopsy. If biopsy comes back negative, try a gluten free diet for at least 3-6 months but must be 100% gluten free so read up on cross contamination.

In regards to some of your other antibodies, you should get a liver function test and kidney function test and be referred to specialist to look into properly. Possibly also rule out Lupus.

Hope you get better soon :-)

1 like
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Dose should never be changed by more than 25mcg at a time.

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