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[Louise195]

Hi I am 23 years old and have Hashimotos I am feeling unwell with fatigue, feeling cold and heavy cycles. TPO antibodies 2000 (34) I take 100mcg Levo diagnosed 2006 with hypothyroid thanks

[Clutter]

Welcome to the forum, Louise195.

If you post your recent thyroid results and ranges members will advise whether you are optimally dosed. If you have any results for ferritin, vitamin D, B12 and folate post them too.

[Louise195 in reply to Clutter]

TPO antibodies 2000 (<34)

TSH 5.2 (0.2 - 4.2)

FT4 14.6 (12 - 22)

FT3 3.3 (3.1 - 6.8)

[Clutter in reply to Louise195]

You are undermedicated, Louise195. Ask your GP to increase dose and arrange a follow up thyroid test 6-8 weeks after to recheck levels.

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 [e-mail] 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_...

[Hillwoman]

Welcome Louise195.

Can you tell us any more about your state of health? What does your GP or consultant say about your symptoms and your current dose of levo? Do you have any lab test results you can show us, along with the reference ranges? Do you have TPO or TG thyroid antibodies?

Providing a little more relevant information will help us to help you.

[Louise195 in reply to Hillwoman]

TPO antibodies 2000 (<34)

TSH 5.2 (0.2 - 4.2)

FT4 14.6 (12 - 22)

FT3 3.3 (3.1 - 6.8)

I am feeling very hypothyroid and I have TG antibodies of 375? (<115)

[Hillwoman in reply to Louise195]

Over-range TPO and Tg abs indicate Hashimoto's thyroiditis, an autoimmune disease. Has your doctor told you this? Many of us on the forum find that we benefit from a gluten free diet, but not everyone does.

Your TSH is over range, and generally speaking if it rises above 1 you are likely to be symptomatic.

Is your doctor monitoring you at all? Do you have any results for vit B12, folate, ferritin and vit D? These tend to be the most important tests for nutritional status in hypothyroidism.

[Louise195 in reply to Hillwoman]

Thanks my endo monitors me every 6-8 weeks but does not want to see me in clinic until Nov 2018. I supplement vits but feel so lost about what to do about my levels. I will post

[Hillwoman in reply to Louise195]

A lot of people have long waits between endo appointments, but in the meantime your GP should be monitoring your health, and should approach the endo if an increase in your levo dose is required.

When were your last blood tests taken? Have you had a more general set of tests done the last year, e.g. full blood count, CRP, ESR, and the others I mentioned?

[Louise195 in reply to Hillwoman]

Please see reply further down. Never had ESR tested, CRP always below range. My last bloods were taken in December 2017 along with thyroid ones I posted thanks

[SlowDragon Administrator in reply to Louise195]

Get a different endocrinologist. This one is likely a Diabetes specialist and hasn't a clue

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 at

[e-mail]

Also request list of recommended thyroid specialists

Professor Toft recent article saying, T3 may be necessary for many otherwise we need high FT4 and suppressed TSH in order to get high enough FT3

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

Official NHS guidelines saying TSH should be between 0.2 and 2.0 when on Levothyroxine

Many of us find we need TSH nearer 9.2 than 2.0

See box

Thyroxine replacement in primary hypothyroidism

pathology.leedsth.nhs.uk/pa...

[SlowDragon Administrator in reply to Louise195]

So you are having bloods tested every 6-8 weeks but no dose increase?

[Louise195 in reply to SlowDragon]

Yes

[SlowDragon Administrator in reply to Louise195]

Seems extraordinary. Your results clearly show you are under medicated

See a different endo, one who is a thyroid specialist

[Louise195 in reply to SlowDragon]

Hi well the endo initially increased but has now decided not to

[SlowDragon Administrator]

As others have said you are under medicated to have TSH so high

You need 25mcg dose increase and retesting in 6-8 weeks

All thyroid tests should ideally 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

Official NHS guidelines saying TSH should be between 0.2 and 2.0 when on Levothyroxine

(Many of us need TSH nearer 0.2 than 2.0 as well)

See box

Thyroxine replacement in primary hypothyroidism

pathology.leedsth.nhs.uk/pa...

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 can 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 gut and gluten connection is very poorly understood

Changing to a strictly gluten free diet may help reduce symptoms, help gut heal and slowly lower TPO antibodies

Ideally ask GP for coeliac blood test first along with vitamins if not already tested

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...

[Louise195 in reply to SlowDragon]

Thanks I feel so lost about what to supplement, l have had vitamin levels checked recently

[Hillwoman in reply to Louise195]

As I asked above, which vitamins were checked? Do you have the results, so that we can comment?

[Louise195 in reply to Hillwoman]

Hi yes of course.

Folate 2.1 (2.5 - 19.5)

Vitamin B12 235 (190 - 900)

Vitamin D total 59.3 (50 - 75 suboptimal)

Ferritin 42 (30 - 400)

Never had ESR checked

CRP was below range

Only things from complete blood count that were flagged up were MCV 80.5 (83 - 98) and MCHC 376 (310 - 350)

I supplement Vit D 800iu since 2013, iron 210mg once a day since 2013, folate 5mg since 2016.

[SlowDragon Administrator in reply to Louise195]

Continuing to be vitamin deficient is also indicative of gluten issues

Your not on high enough supplements

Will add a link to detailed advice from SeasideSusie shortly

And obviously Levo dose is too small as well

[Hillwoman in reply to Louise195]

If you've supplemented Vit D @ 800iu since 2013, and your test result is still only 59.3, in the sub-optimal range, then clearly you need much more. Your GP should be giving you loading doses instead - please see him or her as soon as you can.

Folate and B12 are both very poor. Ask your GP to test you for pernicious anaemia, though there are other causes of malabsorption of B12 - it's very common in Hashimoto's, for instance. If you're taking B12 and folate supplements, I would stop these for at least a fortnight before you are tested for PA, otherwise results will be skewed.

Your ferritin is too low, a common result in Hashi's. Ideally, it should be nearer 70. Since your MCV is also low, it would be a good idea to boost iron supplements, either by eating liver (chicken liver pate is delish) or one of the more tolerable iron supps, e.g. iron bisglycinate. Solgar do this, available on Amazon.

[Hillwoman in reply to Hillwoman]

Forgot to say that vit D is best absorbed with a fatty meal.

[SlowDragon Administrator]

As you have Hashimoto's you might find vitamin D mouth spray by Better You is more effective as it avoids poor gut function

Your B12 is very low, and in combination with very low folate your GP should probably test for Pernicious Anaemia before starting B12 injections

But it's likely B12 is low due to being so under medicated for Hashimoto's

Suggest you ask advice on

healthunlocked.com/pasoc

Detailed supplements advice on Low vitamins due to under medication

healthunlocked.com/thyroidu...