Thyroid UK
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I just want my life back

Please could anyone advise, I am new and feeling awful. I am 30 years old and just want my life back. Taking 75mcg levo, symptoms are feeling cold, dizzy, ill to my stomach, tired, headaches, pins and needles, weight gain, puffy eyes, irritated feeling in front of neck.

Thank you

Dec 2017

TSH 4.90 (0.2 - 4.2)

FT4 13.8 (12 - 22)

FT3 3.3 (3.1 - 6.8)

TPO antibodies 566.3 (<34)

TG antibodies 276.5 (<115)

6 Replies
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Your under medicated. TSH should be around one and FT4 towards top of range

Ask for 25mcg dose increase

Also ask for vitamin D, folate, ferritin and B12 to be tested

Very likely too low due to under medication

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

Do you have high thyroid antibodies too?

Reply

Yes

TPO antibodies 566.3 (<34)

TG antibodies 276.5 (<115)

Reply

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

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 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...

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amymyersmd.com/2017/02/3-im...

chriskresser.com/the-gluten...

scdlifestyle.com/2014/08/th...

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So make an urgent appointment, perhaps with different GP, if yours is unhelpful

Ask for 25mcg dose increase in Levothyroxine and for coeliac blood test, plus vitamin D, folate, ferritin and B12

You can say (if asked) that you have asked advice from NHS recommended thyroid support (don't mention the internet!)

Come back with vitamin results when you get them on a new post

Here is detailed supplements advice from SeasideSusie on typical low vitamins due to under medication

healthunlocked.com/thyroidu...

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 different brands when change to increased dose

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

Reply

Hi Kelli, SlowDragon has hit the nail on the head. With a TSH of 4.90 you are indeed hypothyroid. If my TSH went to 1.0 I would be ill, if it went to 4.90 I would be in a coma! 25mcg Levo is a starter dose, as SlowDragon says you should raise that ASAP. If you doc is not too knowledgeable you might want to look into private blood testing, you will learn a lot more than your doc's TSH and T4, and keep your questions coming on this site.

Reply

When you get your results and are put on a higher dose then make sure you are retested again after 6 weeks. That is the time it takes each dose increase to fully get into the system so the ruling is to keep repeating this after every dose increase until you are on the correct dose for you. Many doctors thing that giving you treatment is the result but it isn't. You keep repeating yo find the correct dose. If you find one too low then the next too high then you can alternate these doses or get a pill cutter to decide the difference.

Reply

Dont frett everything to do with the thyroid is very very slow moving, i was originally hyper back in july but now hypo and feeling dreadful still, my tsh is higher than yours though but it takes along time and ive actually foegotton what it likes to feel human again at the moment but there is light at the tunnel- somewhere💡 keep hopeful.xx

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