Thyroid UK

Struggling

Hi I am new. I am 27 years old. I am really struggling on my current dose of 50mcg levothyroxine. I was diagnosed hypothyroid in 2013. I am having trouble waking up in the mornings, feeling depressed, bowels haven't opened in a week, period coming up I am sure is going to be clotty and heavy, losing hair, eyes going puffy, toes and feet feeling like they are in blocks of ice, losing concentration and focus especially at work (which I can't afford to do), pains in body, dry skin everywhere, feeling cold, muscle stiffness, tinnitus every day. Does it have to be this way. Please advise.

DEC 2017 (50mcg)

Thyroid peroxidase antibody *575 IU/mL (<34)

Thyroglobulin antibody 266.3 IU/mL (<115)

Serum TSH *4.69 mIU/L (0.27 - 4.20)

Serum Free T4 14.7 pmol/L (12 - 22)

Serum Free T3 3.2 pmol/L (3.1 - 6.8)

17 Replies
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You desperately need a dose increase. 50 mcg is a starter dose. The majority of us feel better with a TSH of 1 or under. Your TSH is higher than the reference range. Your FT4 and FT3 are nowhere near the top of the range and need to be. You also have Hashimotos so going gluten free may also help. Have you had any other blood tests - vitamins and iron? Clemmie

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Thanks I have only had vit D come back. It is 61.9 nmol/L

(50 - 75 suboptimal) I now take 9000iu vit D with K2 MK7. Will get other levels as I am iron deficient and folate deficient and have low B12.

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Sorry to hear you’re having a bad time Zoeey, those symptoms sound very familiar. In September I posted my results with b12, D3, ferritin etc and took the advice I was given. I no longer have muscle ache, fatigue, I sleep well and eyebrows are thicker (but not back fully) I read everything I could about thyroid treatment and it has worked for me. There is a way out! X

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Thanks I have only had vit D come back. It is 61.9 nmol/L

(50 - 75 suboptimal) I now take 9000iu vit D with K2 MK7. Will get other levels as I am iron deficient and folate deficient and have low B12.

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You are very under medicated.

50mcg is standard starter dose. Bloods should be retested after 6-8 weeks and dose increased in 25mcg steps (retested 6-8 weeks later each time) until TSH is around one and FT4 towards top of range and FT3 at least half way in the range

Make an appointment to see GP and ask for 25mcg dose increase

Also request that your vitamin D, folate, ferritin and B12 are tested

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...

thyroidpharmacist.com/artic...

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

chriskresser.com/the-gluten...

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

drknews.com/changing-your-d...

Current guidelines are useless for how to treat Hashimoto's.

It's extremely common to be left under medicated. Hence over 70,000 members on here

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

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. 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

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 as dose increases - e.g. On 75mcg you will need 25mcg pill. Try to ensure it's same brand. If can't get correct brand in 25mcg you can take 50/100 alternate days

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Is it possible to have "mild GERD" & Hashimotos?

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Are you suggesting I have mild GERD or you? If you think you have it why don't you post your own question asking this? Thanks

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Ok (will post when have labs).

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Yes extremely common. It's almost always due to low stomach acid.

Yet another symptom of the fact you are very under medicated.

Magnesium is important too when taking vitamin D. Make sure to take it at least 4-6 hours away from Levo.

Magnesium is also very good for constipation. Calm vitality magnesium powder is cheap and easy to use. Start low and slow, perhaps 1/4 teaspoon to start and see how you go

Lots of posts on here about how to improve low stomach acid with Apple cider vinegar or Betaine HCL

thyroidpharmacist.com/artic...

drmyhill.co.uk/wiki/hypochl...

scdlifestyle.com/2012/03/3-...

healthunlocked.com/thyroidu...

Other things to help heal gut lining

Bone broth

thyroidpharmacist.com/artic...

Probiotics

carolinasthyroidinstitute.c...

Importance of magnesium

hypothyroidmom.com/two-vita...

Night sweats are often low B12 also extremely common when under treated

b12deficiency.info/signs-an...

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Typical low vitamin levels as result of under medication

Detailed supplements advice from SeasideSusie

healthunlocked.com/thyroidu...

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I'm worried that if I increase my sweats will get worse. That won't happen will it.

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Do I post other results once I know what they are.

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Yes suggest you put them on a new post

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Hi Zoeeyy,

My endo told me that night sweats are a symptom of vitamin D deficiency... in fact, this is how I got diagnosed with hypothyroidism. Vit D is said to help your body convert T4 (levo) into T3 in order for you to feel well.

Lotika.

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Vit D 61.9 (50 - 75 suboptimal) taking 9000iu

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GP happy with results. Haematology want vit D above 75

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So have you just started 9000iu as result, or been taking that for a while?

Aim to get level up to around 100nmol

Better You mouth spray is good as avoids poor gut function of Hashimoto's

Testing twice yearly is good idea. Trial and error working out what you need as maintenance dose.

Once you are strictly gluten free then gut can hopefully begin to heal

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