Looking for answers that GP can’t give me - Thyroid UK

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Looking for answers that GP can’t give me

Bluedoo1 profile image
6 Replies

I’ve had Hashimotos since 2000, My TSH was .19 when started on 50mcg levothyroxine but has remained @ 0.1 (3–6) since then on .150mcg. Since joining this forum I have been taking my thyroxine at different time to my Fluoxetine and any other meds. I have now since 23/1 been taking 150/125mcg alternate nights my thyroxine at bedtime.

TSH 0-1 ( 0.27—4-2)

Free T4 18.9 (12—-22)

Free T3 4.0 (3.1——6.8)

CRP 12.0 (2—10)

Vit D 96

Vit B12 855 (211—900)

ESR 26 (0–35)

Serum Folate 4.4 (2.4—20)

Serum Ferritin 159.6 (12—300)

These bloods were this year, antibodies were BlueHorizon in December 2018

Anti-Thyroidperoxidase abs 255.0 >34 kIU/l

Anti-Thyroidglobulin Abs 429 >115 kU/L

My question has always been why is my TSH low when I’ve been on any dose upto 175mcg whilst my T4 goes anything between 20/5/2004 finishing 18.5 - 22.0 -22.5 - 24.4. -22.9 -27.2 -21.8 -24.5 -22.0 - 27.8 -23.8 - 19.8 -19.2 till 2012

Any advise would be much appreciated.

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Bluedoo1
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6 Replies
radd profile image
radd

Bluedoo1,

TSH stands for Thyroid Stimulating Hormone and is produced by the pituitary in response to a feed back loop between the hypothalamus, pituitary and thyroid.

There is a lot that can go wrong between these stages which are also dependant on other factors such as adequate cortisol levels and enough iron to actual produce the thyroid hormone. Problems in the nervous system, immune system and nutritional status influence thyroid signaling. Even smoking lowers the TSH giving yet another false indicator of thyroid hormone status.

TSH usually rises in hypothyroidism but yours was exceptionally low when started on 50mcg Levo. An endocrinologist can run a test to check out your pituitary TSH response but this can be useless because for some their TSH becomes blunted or down regulated for whatever reasons and no matter what amount they medicate, the TSH never budges.

When medicating Levo, the important tests are FT3 for well being and FT4 where the majority of FT3 comes from. Your FT3 is low.

Also low is folate. Are you supplementing ?

You have elevated antibodies which may be the reasons for high CRP.

Bluedoo1 profile image
Bluedoo1 in reply toradd

I’ve issues with my gut and awaiting a colonoscopy, consultant says my symptoms are ulcer one but has done bloods for coleiac. I’ve started over 70’s vitamin as well as B12 1000mg patches, how do I increase folate, thanks again.

radd profile image
radd in reply toBluedoo1

Bluedoo1,

Gut issues and malabsorption of nutrients and iron are common in people with low thyroid hormone as gastric acid becomes depleated. Sorry to hear you have an ulcer.

In healthy individuals, folic acid is converted to L-methyl folate, which is the biologically active form but people with hypothyroidism often experience a decrease in the activity of the enzyme methylenetetrahydrofolate reductase, which is responsible for producing L-methyl folate in the liver. So supplement with Methylfolate as opposed to folic acid.

Folate (B9) works with vitamin B12 to help create, develop and regenerate red blood cells and make iron work properly. It also participates in the homocysteine metabolic cycle and adequate levels are required to keep this in check, as high levels are considered a significant risk factor in cardiovascular disease and disrupting to thyroid metabolism.

SlowDragon profile image
SlowDragonAdministrator

Your antibodies are high this is Hashimoto's, (also known by medics here in UK more commonly as autoimmune thyroid disease).

Hashimoto's affects the gut and leads to low stomach acid and then low vitamin levels

Low vitamin levels affect Thyroid hormone working

Your folate is very low

Supplementing a good quality daily vitamin B complex, one with folate in not folic acid may be beneficial.

chriskresser.com/folate-vs-...

B vitamins best taken in the morning after breakfast

Recommended brands on here are Igennus Super B complex. (Often only need one tablet per day, not two). Or Jarrow B-right

If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 7 days before any blood tests, as biotin can falsely affect test results

endo.confex.com/endo/2016en...

endocrinenews.endocrine.org...

With Hashimoto's Poor gut function can lead leaky gut (literally holes in gut wall) this can cause food intolerances. Most common by far is gluten. Dairy is second most common.

According to Izabella Wentz the Thyroid Pharmacist approx 5% with Hashimoto's are coeliac, but over 80% find gluten free diet helps, sometimes significantly. Either due to direct gluten intolerance (no test available) or due to leaky gut and gluten causing molecular mimicry (see Amy Myers link)

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 or buy test online for under £20, just to rule it out first

Trying gluten free diet for 3-6 months. If no noticeable improvement then reintroduce gluten and see if symptoms get worse

chriskresser.com/the-gluten...

amymyersmd.com/2018/04/3-re...

thyroidpharmacist.com/artic...

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

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

restartmed.com/hashimotos-g...

But don't be surprised that GP or endo never mention gut, gluten or low vitamins. Hashimoto's is very poorly understood

With Hashimoto's, because levels vary up and down due to autoimmune thyroid disease attacks, the TSH doesn't know how to cope and, very often goes low, regardless of wether dose is adequate or not

Absolutely essential to test FT3 alongside FT4 and TSH at every test

Frequently we need FT3 near top of range. Poor conversion of FT4 to FT3 is common issue, due to low vitamins and/or gluten intolerance

Bluedoo1 profile image
Bluedoo1 in reply toSlowDragon

I’ve issues with my gut and awaiting a colonoscopy, consultant says my symptoms are ulcer one but has done bloods for coleiac. I’ve started over 70’s vitamin as well as B12 1000mg patches, how do I increase folate, thanks again.

SlowDragon profile image
SlowDragonAdministrator in reply toBluedoo1

Multivitamins are not usually recommended on here, as too little of the things we do need, plus stuff we don't want, like iodine

Iodine is controversial and generally not recommended with Hashimoto's

drknews.com/iodine-and-hash...

thyroidpharmacist.com/artic...

Selenium supplements can help improve conversion of FT4 to FT3

thyroidpharmacist.com/artic...

B complex (as also outlined above) will improve folate and B12

Supplementing a good quality daily vitamin B complex, one with folate in not folic acid may be beneficial.

chriskresser.com/folate-vs-...

B vitamins best taken in the morning after breakfast

Recommended brands on here are Igennus Super B complex. (Often only need one tablet per day, not two. Certainly on starting with just one per day).

Or Jarrow B-right is another popular brand

If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 7 days before any blood tests, as biotin can falsely affect test results

endo.confex.com/endo/2016en...

endocrinenews.endocrine.org...

Stomach ulcer is linked to H pylori

nhs.uk/conditions/stomach-u...

wakegastro.com/patient-info...

H Pylori is strongly linked to Hashimoto's

thyroidpharmacist.com/artic...

drhedberg.com/hashimotos-th...

hypothyroidmom.com/hashimot...

Because the gut is so pivotal in Hashimoto's, this may be why gluten intolerance is so widespread

The only way to know if gluten is a hidden problem for you is to try absolutely strictly gluten free diet for 3-6 months

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