Thyroid UK

Still symptomatic

Hi guys,

I am currently taking 125mg of levothyroxine. This was increased in june from 100mg as I had a private blood test done after getting these results

thyroid stimulating hormone 4.64 mIu/L .27 -4.20

free thyroxine 16.36 pmol/L 12.00 - 22.00

Total Thyroxine (T4) 88.3 nmol/L 59.00 - 154.00

free T3 3.15 pmol/L 3.10 -6.80

Thyroglobulin Antibody 501.300 IU/ml 0.00 - 115.00

Thyroid peroxidase antibodies 122.80 IU/mL 0.00 - 34.00

I have since had another blood test with the doctors and been told I am within range. I still have loads of symptoms and its driving my bonkers. It has since I have been diagnosed which was feb 2013 my very first TSH was 118.0

The symptoms I have is water retention constantly, severe constipation, Thrush, no libido, hair has really thinned, racing heart that feels at times its going to burst through my chest wall

Been checked to make sure I have not gone into early menopause and other hormone levels are great. My GP has been quite supportive but I still don't feel like I used to if that makes any sense at all.

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Claire2868,

Ask for the results and ranges and put them in a new post for advice. Being 'in range' isn't good enough, you can be undermedicated while you are within range.

The goal of Levothyroxine is to restore the patient to euthyroid status. For most patients that will be when TSH is 0.27 - 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_...

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Can I request a copy from my gp?

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Claire2868,

Your GP receptionist should be able to print you off a copy of the results and ranges.

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_...

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Has any medic explained that 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

You are legally entitled to copies of your own blood test results. Ring receptionist and say you would like to pick up copies of recent blood test results including ranges

Essential to test vitamin D, folate, ferritin and B12.

Always get actual results and ranges. Post results when you have them, members can advise

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...

See if you can get vitamin testing from GP.

Private tests are available

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

Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice if testing all. DIY finger prick test or option to pay extra for private blood draw. Both companies often have money off offers.

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

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 dionne.fulcher@thyroidUK.org. print it and highlight question 6 to show your doctor.

Prof Toft - brilliant article just published

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

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The private test states vitamin levels seem ok but they mentioned Hashimoto. I was under the endocrine at Manchester royal but they basically disregarded me still being symptomatic because my levels stayed regular at that time and I got pregnant. I will call my gp today for a copy of my results

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Vitamins in range is not the same as being at good levels

The connection of Hashimoto's to poor vitamins, poor gut function and gluten intolerance is very poorly understood

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You're early menopause won't show on NHS tests because hormones on early meno are all over the place and NHS tests only follicular stimulating hormone which won't indicate.

Having said that, your symptoms sound to me more thyroid related.

However I'd keep an eye on early menopause anyway because:

1. autoimmune conditions (if you have one) cause early menopause

2. All hormones are closely related and packed up thyroid can cause early menopause

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My most recent test was done on the 1/9/17 and tsh was0.24 (.10-4.0)

But I have no other results on the print out the gp gave me.

The 100mg levothyroxin is by m a holder that’s the one the formula had changed and the 25mg is by wockhart

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