Thyroid UK

Feel like giving up

Why are my results so poor if I take 50mcg Levo? Feel like giving up. Diagnosed 2011 with hypothyroid. Been on 50mcg since November 2017, dose reduced from 150mcg by GP despite being under care of endo. I am taking Levo with just water no other meds or supplements and leaving 2 hours before eating. So what am I doing wrong. Feel really unwell.

Thankyou

Jan 2018

TSH 4.9 (0.2 - 4.2)

FT4 14.1 (12 - 22)

FT3 3.4 (3.1 - 6.8)

TPO antibodies 845.3 (<34)

TG antibodies 1200 (<115)

13 Replies
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Change your doctor as he/she is useless. You re doing nothing wrong and your doctor everything wrong.

You are on an insufficient dose of thyroid hormones and the aim is sufficient to gradually reduce your TSH to 1 or below and both Frees, FT4 and FT3 need to be towards the upper part of the range.

They know absolutely nothing about how to treat us hypothyroid patients and believe that somewhere in the range is fine. Your TSH is over the top of the range but again, doctors have been told to only diagonse patients when the TSH is over 10, so I am not suprised your doctor thinks he can still allow your TSH to go towards 10.

Demand an increase of 25mcg today and tell GP that you will inform your endocrinologist that he's reduced your dose and you now feel very unwell.

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My TSH when diagnosed was 20.5 (0.2 - 4.2)

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Mine was 100. I am now recovered on my own with the help of Thyroiduk.org. and two doctors (one now deceased) and I source my own thyroid hormones so am independent and please myself. Of course I am aware if there any changes that are different. I adjusted up/down a few times but am now on stable dose and I get a yearly blood test. Best of all I don't have distressing symptoms.

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You also have an Autoimmune Thyroid Disease called Hashimoto's which is the commonest form of hypothyroidism as the antibodies attack the thyroid gland until we're hypo. To reduce the antibodies going gluten-free can help reduce the attack of the antibodies.

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As shaws says, you are doing nothing wrong, but your GP certainly is in the wrong. He/she had no business interfering with your treatment without your endo's knowledge, and a sudden, drastic reduction like this is never advisable. Let me guess: your TSH was suppressed, so your GP panicked because they thought you were over-medicated? Did you feel well on the higher dose of levo?

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Hi no my GP said she didn't want to risk me being over replaced so dropped the dose to 50mcg. No I felt better on the addition of T3

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150 mcg of levo is hardly excessive for most adults. No doubt she was responding to the TSH result without any consideration of the clinical picture.

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Jax1135,

Your GP should butt out and not interfere with the treatment plan your endo has initiated. Your endo is the specialist, not your GP. My endo would be furious if my GP started interfering.

You are undermedicated to have TSH 4.9 and FT4 and FT3 low in range. The goal of Levothyroxine is to restore the patient to euthyroid status. For most patients that will be when TSH is 0.3 - 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 and thyroglobulin 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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GP had zero right to reduce your dose 50mcg wont treat a flea

If correctly treated

TSH will be 1.0 or below

Freet4 around 19

Freet3 around 5.5

Ferritin,folate,b12,vitd3 must all be at least halfway up in their ranges

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Who and why was dose cut so savagely. You are extremely under medicated.

Can you add results from when you were on 150mcg

You probably weren't over medicated then, and even if you were the maximum a dose should be adjusted up or down by is 25mcgs

You need urgent 25mcg dose increase and retesting in 6-8 weeks. Likely several more increases required, always in 25mcg steps until TSH is around one (or slightly less) and FT4 towards top of range and FT3 at least half way in range

You have very high antibodies, this is Hashimoto's also called 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...

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...

But with Hashimoto's we must get vitamins optimal, dose of Levothyroxine increased enough to bring TSH down to around one and FT4 towards top of range.

Very likely to find gluten free diet essential too

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

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Hi no my GP said she didn't want to risk me being over replaced so dropped the dose to 50mcg. I felt better on the addition of T3

Results on 150mcg levo are

TSH 1.30 (0.2 - 4.2)

FT4 19.2 (12 - 22)

FT3 3.4 (3.1 - 6.8)

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Well, those are much more respectable results than the ones at the top of your post, but clearly you need a higher FT3.

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These results show you were under medicated on 150mcg

TSH was on high side and FT3 much too low, showing you are either poor converter and/or low vitamin levels

Did you get T3 prescribed after this?

Was T3 started by an endo? Who stopped it?

When T3 is stopped Vitamin levels crash right out after

You almost certainly need vitamin supplements now

Make an urgent appointment. Request immediate 25mcg Levo dose increase and bloods retested in 6 weeks. Ask for immediate coeliac blood tests and testing of vitamin D, folate, ferritin and B12

These vitamins will all be terrible as direct result of having T3 stopped and then Levothyroxine dose reduced as well

You need a new endo. (And a different GP probably)

Email Thyroid UK for list of recommended thyroid specialists

please email Dionne:
tukadmin@thyroiduk.org

Typical posts after T3 stopped

healthunlocked.com/thyroidu...

healthunlocked.com/thyroidu...

healthunlocked.com/thyroidu...

healthunlocked.com/thyroidu...

healthunlocked.com/thyroidu...

healthunlocked.com/thyroidu...

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