Autoimmune thyroiditis: Hi I am new and I have... - Thyroid UK

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Autoimmune thyroiditis

Ava6 profile image
Ava6
20 Replies

Hi I am new and I have been told by a GP I have tested positive for autoimmune thyroiditis due to below bloods?

Diagnosed hypothyroid in 2012 when I was 25 years old, I am female and taking 50mcg levothyroxine each day. Symptoms are constipation, dry skin, eyelashes falling out, hair loss, feeling cold, tiredness, muscle cramps in legs, flaky nails.

Thank you in advance for feedback on results/dose/symptoms.

TSH 5.4 (0.2 - 4.2)

FT4 13.7 (12 - 22)

FT3 3.6 (3.1 - 6.8)

TPO ANTIBODY 356.3 (<34)

TG ANTIBODY 475.5 (<115)

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Ava6 profile image
Ava6
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Clutter profile image
Clutter

Welcome to the forum, Ava6.

You are undermedicated to have TSH 5.4 and low FT4 and FT3 while taking 50mcg Levothyroxine. Ask your GP to increase dose to 75mcg.

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. The Thyroid UK office opens on 3rd January.

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_...

You should have a follow up thyroid blood test 6-8 weeks after increasing dose. Arrange the blood test early in the morning when TSH is highest and fast (water only) as TSH drops after eating and drinking. Take Levothyroxine after the blood test.

Marz profile image
Marz

Hi and Welcome ! Your dose is a starter dose and it is is quite shameful you have been left for five years - unless of course your dose has been reduced for some reason. You should be tested every 6 weeks once you started T4 and your dose increased accordingly.

Your TSH is over range and when on treatment should be 1 or under. Your FT4 and FT3 are just about in range due to the very low dose you are taking - hence your symptoms. You need a dose increase of 25mcg asap. Both the T4 and T3 are better in the upper part of the range for you to feel well.

Being gluten free will help to reduce anti-bodies as will taking Selenium. You will also need to have the following vitamins and minerals tested as they are usually LOW in range with Hashimotos - B12 - Folate - Ferritin - VitD. When you have the results with ranges start a new post for people to comment.

It can be a long journey to wellness with Hashimotos - try to follow the advice from the many here - and keep asking questions :-)

Ava6 profile image
Ava6 in reply to Marz

Thank you my dose was reduced because I am struggling with my weight which is going down more often than up. I have results of vitamins and minerals as well

Marz profile image
Marz in reply to Ava6

OK post your vitamin and mineral results .... Not all Hypo people are overweight !

Ava6 profile image
Ava6 in reply to Marz

Thank you my weight is falling so my GP wants me to gain weight. Have always been on 50mcg. I also take vit D and iron and folate supplements as well

Marz profile image
Marz in reply to Ava6

How much VitD are you taking ? - and was your result before treatment ?. Also results for B12 - Folate and Verrtin would be useful ....

Ava6 profile image
Ava6 in reply to Marz

Hi I take 6000iu vit D since the 800iu wasn't doing very much and my result before treatment was 41.6

VITAMIN D TOTAL 38.7 (25 - 50)

Marz profile image
Marz in reply to Ava6

Needs to be around 100 :-)

Angel_of_the_North profile image
Angel_of_the_North in reply to Ava6

Well, making you feel ill is not going to make you gain healthy weight. You need sufficient thyroid hormone to make you able to exercise and gain muscle. If you are undermedicated, your brain produces adrenaline to make up for low hormones and that can make you lose weight and appetite

Ava6 profile image
Ava6

Also getting more infections is that because of hypothyroid or Hashimotos?

Marz profile image
Marz in reply to Ava6

Possibly yes - also I expect your VitD is low ...

Ava6 profile image
Ava6 in reply to Marz

FERRITIN 41 (30 - 400)

FOLATE 2.3 (4.6 - 18.5)

VITAMIN B12 238 (180 - 900)

VITAMIN D TOTAL 38.7 (25 - 50)

Retaking folic acid since tests for pernicious anaemia were negative, taking 6000iu vit D and Spatone iron once a day thanks

Marz profile image
Marz in reply to Ava6

I am not so good on iron issues - but I think you need a higher dose of Iron taken with VitC to improve your level. Folate is VERY low - it is below range so perhaps you need to take more Folic Acid or Folate. B12 is also very low and I would suggest 5000 mcg Jarrow Methylcobalamin from Amazon - a lozenge to keep under the tongue until dissolved. At some point you could reduce to 1000 mcg. Testing once on supplements will skew results so of little value.

VitD needs to be around 100 - so again 5000 IU's should boost your numbers during the winter months. Also take Magnesium & VitK2-MK7 - both important co-factors with VitD.

Which tests did you have for PA ? False negatives are common I believe. Have you checked your symptoms against the PA list on their website ? The Pernicous Anaemia Society Website ....

Testing MMA and Homocysteine are good predictors of B12 Deficiency at a cellular level.

SeasideSusie is a great source of information about vitamins and minerals. Click onto her name in blue and then click her replies to read her many excellent replies to people with issues such as yours ...

Ava6 profile image
Ava6 in reply to Marz

Thanks I tested negative for intrinsic factor antibodies, haematologist said that was the only test he could order

Marz profile image
Marz in reply to Ava6

pernicious-anaemia-society....

The above link takes to the Perncious Anaemia Website where you can read up on the Testing etc ....

SlowDragon profile image
SlowDragonAdministrator

Your GP doesn't understand Hashimoto's.

Ask for full testing for coeliac disease.

But your gut is not working because you are very under medicated. TSH should be around one and FT4 towards top of range and FT3 at least half way in range

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 stop 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

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...

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 dionne.fulcher@thyroidUK.org. print it and highlight question 6 to show your doctor.

Essential to improve vitamins

SeasideSusie is the vitamin guru

Eg

healthunlocked.com/thyroidu...

Also See Box 1. Towards end of this article

Some possible causes of persistent symptoms in euthyroid patients on L-T4

You will see low vitamin D, folate, ferritin and B12 listed

onlinelibrary.wiley.com/doi...

SeasideSusie profile image
SeasideSusieRemembering

Ava6

FERRITIN 41 (30 - 400) Spatone iron once a day

Spatone doesn't contain very much elemental iron compared to iron tablets so it may take a very very long time for your level to rise.

You can help raise your level by eating liver regularly, maximum 200g per week due to it's high Vit A content, and including lots of iron rich foods in your diet apjcn.nhri.org.tw/server/in... I raised my ferritin from 35 to 119 purely by eating liver.

As your ferritin is very low in it's range, it would be an idea to have a full blood count and iron panel to see if there is iron deficiency anaemia, which low ferritin can suggest.

**

FOLATE 2.3 (4.6 - 18.5) VITAMIN B12 238 (180 - 900)

Retaking folic acid since tests for pernicious anaemia were negative

I would post on the Pernicious Anaemia Society forum about this. False negatives can happen. Check for signs of B12 deficiency here b12deficiency.info/signs-an... and list them in your post on the PA forum, along with these results plus Ferritin result and any iron deficiency information if you've already had tests.

I have read (but not researched so don't have links) that BCSH, UKNEQAS and NICE guidelines recommend:

"In the presence of discordance between test results and strong clinical features of deficiency, treatment should not be delayed to avoid neurological impairment."

And an extract from the book, "Could it be B12?" by Sally M. Pacholok:

"We believe that the 'normal' serum B12 threshold needs to be raised from 200 pg/ml to at least 450 pg/ml because deficiencies begin to appear in the cerebrospinal fluid below 550".

"For brain and nervous system health and prevention of disease in older adults, serum B12 levels should be maintained near or above 1000 pg/ml."

**

VITAMIN D TOTAL 38.7 (25 - 50)

, taking 6000iu vit D

I would increase your D3 to 10,000iu daily for 4 weeks then resume 6000iu daily. Retest in 3 months. This will bring you close to the loading doses which would be prescribed if level was less than 30.

The Vit D Council recommends a level of 100-150nmol/L so when you've reached that you'll need a maintenance dose which may be 2000iu daily, it's trial and error so it's recommended to retest once or twice a year to keep within the recommended range. You can do this with a private fingerprick blood spot test with City Assays vitamindtest.org.uk/

Doctors wont know, because they are not taught nutrition, but there are important cofactors needed when taking D3

vitamindcouncil.org/about-v...

D3 aids absorption of calcium from food and K2-MK7 directs the calcium to bones and teeth where it is needed and away from arteries and soft tissues where it can be deposited and cause problems.

D3 and K2 are fat soluble so should be taken with the fattiest meal of the day, D3 four hours away from thyroid meds.

Magnesium helps D3 to work and comes in different forms, check to see which would suit you best and as it's calming it's best taken in the evening, four hours away from thyroid meds

naturalnews.com/046401_magn...

Check out the other cofactors too.

Are you using an oral spray D3 (eg BetterYou), best for absorption for Hashi's patients. Sorry if already mentioned, I haven't read all the thread.

Ava6 profile image
Ava6 in reply to SeasideSusie

Thank you I have iron anaemia still and I am using a 3000iu Better You oral spray which I double up on

Marz profile image
Marz in reply to Ava6

OK so you need to improve the treatment for adequate results for the iron anaemia and everything else. Are you gluten free ? You need to heal your gut to improve absorption .... I woul read through this thread again and make some notes ....

SeasideSusie profile image
SeasideSusieRemembering in reply to Ava6

Ava

If you have iron deficiency anaemia you should be prescribed the appropriate treatment which is 3 x Ferrous Fumarate daily - see NICE Clinical Knowledge Summary for iron deficiency anaemia treatment (which will be very similar to your local area guidelines):

cks.nice.org.uk/anaemia-iro...

How should I treat iron deficiency anaemia?

•Address underlying causes as necessary (for example treat menorrhagia or stop nonsteroidal anti-inflammatory drugs, if possible).

Treat with oral ferrous sulphate 200 mg tablets two or three times a day.

◦If ferrous sulphate is not tolerated, consider oral ferrous fumarate tablets or ferrous gluconate tablets.

◦Do not wait for investigations to be carried out before prescribing iron supplements.

•If dietary deficiency of iron is thought to be a contributory cause of iron deficiency anaemia, advise the person to maintain an adequate balanced intake of iron-rich foods (for example dark green vegetables, iron-fortified bread, meat, apricots, prunes, and raisins) and consider referral to a dietitian.

• Monitor the person to ensure that there is an adequate response to iron treatment.

I would triple dose your Better You spray for 4-5 weeks then drop back to 6000iu to see if you can boost your Vit D level. Are you taking the cofactors? Magnesium helps D3 to work.

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