Thyroid UK
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Endo doubts I take my 25mcg levo every day

New member

Diagnosed 2010 with underactive thyroid

Endo says he doubts I take my 25mcg levo every day and is reluctant to raise dose

Always been on 25mcg

TPO antibodies 904.5 (<34)

TSH 9.2 (0.2 - 4.2)

FT4 13.7 (12 - 22)

FT3 3.1 (3.1 - 6.8)

Ferritin 5 (30 - 400)

Folate 1.4 (4.6 - 18.7)

Vitamin B12 166 (180 - 900)

Vitamin D total 20.2

Advice welcome

15 Replies
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Can you post your results (include reference ranges) and give further information about your thyroid journey, doses, whether dose has been changed and why, was T3 added and taken away and why, why does your endo think you aren't taking your Levo, why only 25mcg (which is a starter dose), if you have raised antibodies, if you've had vitamins and minerals tested. Give as much information as possible because as it is members have nothing to go on.

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Dose always been 25mcg

TPO antibodies 904.5 (<34)

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Latest thyroid test results - TSH, FT4, FT3?

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Added

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So, as for the other questions, why does your endo think you don't take your Levo?

Have you had vitamins and minerals tested?

Why have you been kept on a starter dose of 25mcg Levo since 2010 when guidelines state that retesting/increasing dose should be done every 6-8 weeks after diagnosis until you feel well?

What does your GP say about your results and have you discussed how you feel with your GP, assuming you are symptomatic.

Did you know that your raised antibodies confirm autoimmune thyroid disease aka Hashimoto's and if so are you addressing it by being strictly gluten free and supplementing with selenium L-selenomethionine 200mcg daily?

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Because of how low my thyroid levels are

Vitamin and mineral levels added

Dose not increased due to sweating and tremor

Did not know I have Hashimotos

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You have an endo who is undoubtedly a diabetes specialist and doesn't understand much about Hypothyroidism. You need to ditch this one as he is keeping you ill and find one who has half a clue.

Your GP ought to have an inkling about hypothyroidism and he is letting you down also. Perhaps you need a new GP as well.

You have Hashimoto's which is where antibodies attack the thyroid and gradually destroy it. The antibody activity causes fluctuations in symptoms and test results. Your symptoms of sweating and tremor are due to the Hashi's.

Read and learn about Hashi's so you can help yourself, doctors won't help because they don't understand it.

hypothyroidmom.com/hashimot...

stopthethyroidmadness.com/h...

stopthethyroidmadness.com/h...

Strict gluten free diet and selenium as mentioned above.

Hashi's trashes nutrient levels and yours are dire. Gut/absorption problems go hand in hand with Hashi's and need addressing. All need sorting before thyroid hormone can work. SlowDragon will help with information and links.

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Ferritin 5 (30 - 400)

Folate 1.4 (4.6 - 18.7)

Vitamin B12 166 (180 - 900)

Vitamin D total 20.2

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What has your GP said about these results and are you supplementing, if so what with?

Have you had an iron panel and full blood count? Do you have iron deficiency anaemia?

Have you any signs of B12 deficiency, have you been tested for intrinsic factor antibodies, do you have Pernicious Anaemia.

What is being prescribed for your severe Vit D Deficiency?

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Nothing been said about vitamin levels

I have anaemia not on iron tablets

I have symptoms of B12 deficiency not tested for intrinsic factor antibodies

Nothing prescribed for vit D

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Make an urgent appointment with a different GP. Point out

1) severe Vit D Deficiency, you need loading doses of D3 totalling 300,000iu over a period of weeks then a maintenance dose for life. Don't accept a prescription for 800iu, you must have loading doses cks.nice.org.uk/vitamin-d-d...

Important cofactors needed when taking D3 are Vit K2-MK7 and magnesium. GP won't know, they're not taught nutrition vitamindcouncil.org/about-v...

2) post on Pernicious Anaemia Society forum for further advice healthunlocked.com/pasoc then ask GP for appropriate treatment

3) ask for treatment for your confirmed anaemia. Take any iron tablets 4 hours away from Levo and 2 hours away from other supplements/medication as it affects absorption, and take each tablet with 1000mg Vit C to aid absorption and help prevent constipation.

4) eat liver regularly (200g weekly maximum) to help raise ferritin

Once sorted with supplements, make an official complaint against doctor who has ignored these results.

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Eva_J,

If you told your endo you do take 25mcg daily and he declines to believe you write a letter of complaint to the endo or the head of endocrinology or the PALS at the hospital and ask to be assigned a different doctor. It's fine for the endo to ask the question but it is not fine for him not to believe you and to deny you necessary treatment.

A patient who takes their Levothyroxine all in one go before a blood test will probably have a high TSH and high FT4. Your results clearly indicate you are undermedicated.

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_...

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Eva those are dire results for all the bloods, If they were my results I would get along to a better informed GP pronto! and then if no improvement with treatment from gp get a better informed thyroid-wise endo.

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Well 25mcg is only half the standard starter dose of 50mcg. And bloods should be retested after 6-8 weeks and dose increased by 25mcgs steps until TSH is around one and FT4 towards top of range and FT3 at least half way in range

Adequate dose varies from person to person but is usually between 75mcg and 200mcg daily

Why on earth would they be surprised you are severely hypothyroid on just 25mcg

As result of being severely under medicated for years, you have terrible vitamin levels

Sweating and tremor are due to being severely under medicated and terrible vitamins

Your GP has been negligent not to treat.

Make an urgent appointment to see a different one at the practice. Follow SeasideSusie advice on supplements

These vitamins are going to need significant improvement.

You also need 25mcg urgent dose increase in Levothyroxine and retesting in 6-8 weeks. Likely to need several increases over the coming months

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

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...

Sadly your case is not that uncommon

Some recent similar posts with sweating and tremor due to serious under medication for Hashimoto's

healthunlocked.com/thyroidu...

healthunlocked.com/thyroidu...

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You are very undermedicated! Maybe the doctor is surprised your levels haven't improved with treatment, but this treatment is a super low dose. Sounds incompetent, and what you need is an increase immediately!

These vitamin results are very low, too, and they need to be treated. Raising your vitamins is as important as raising your hormone levels!

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