? Overmedicated: hi everyone I have had an under... - Thyroid UK

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? Overmedicated

Steph1122 profile image
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hi everyone I have had an under active thyroid for many years and treated with Levothyroxine then in 2019 it went over active and I was put on carbimazole then back to under active again. I have recently had bloods done

TSH 0.100

T3 6.8

T4 24.8

Can anyone work out what is going on

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Steph1122
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PurpleNails profile image
PurpleNailsAdministrator

welcome to forum

How much carbimazole have you been given & for how long. How long have you been off hormone replacement / antithyroid for?

What are ranges of FT4 & FT3, by most ranges they are high but not very over range.

What thyroid antibodies have been tested?

TPOab (Thyroid Peroxidase antibodies) 

TGab (Thyroglobulin antibodies) -  Both signify thyroid autoimmune affecting thyroid - can be either under active or over active.  

If hyper Graves suspected this can be confirmed by;

TSI - Thyroid-Stimulating Immunoglobulin (signifies hyper Graves) 

TRab - TSH receptor antibodies (TRAb) (signifies Graves) 

Suspect you have Hashimoto’s (autoimmune) and a temporary rise can occur from the damage to thyroid and release of hormone. Carbimazole should used and it’s not an over production the levels will lower too quickly.

Steph1122 profile image
Steph1122 in reply toPurpleNails

TSH: 0.38 -5.33 mU/L, Free T4 7.9 – 14.4 pmol/L, Free T3: 3.8 – 6.0 pmol/L

When I went over active in 2019 and said that I had hashitoxicosis they put me on carbimazole for about 6 weeks from the end of 2019 I have been back on Levothyroxine

SlowDragon profile image
SlowDragonAdministrator

Also essential to test vitamin D, folate, ferritin and B12

Was this test done early morning

What are you currently taking …..Levo or Carbimazole

Steph1122 profile image
Steph1122 in reply toSlowDragon

100mcg Levothyroxine

My folate was 2.3 and on folic acid and my B12 was 385

Test was done at 10am

SlowDragon profile image
SlowDragonAdministrator in reply toSteph1122

Had you taken levothyroxine in morning before blood test?

when were vitamin D and ferritin levels last tested

Please add results

B12 too low as well but not low enough for GP to prescribe

on Levo it’s essential to maintain GOOD vitamin levels

Steph1122 profile image
Steph1122 in reply toSlowDragon

they were taken on the 25th April 2023

What should B12 be?

SlowDragon profile image
SlowDragonAdministrator

Have you started folic acid supplements?

Ideally you should start B12 supplements first before adding folic acid

Low B12

b12deficiency.info/signs-an...

methyl-life.com/blogs/defic...

Do you have Low B12 symptoms 

With serum B12 result below 500, (Or active B12 below 70) recommended to be taking a B12 supplement

When you finish your prescription folic acid look at starting a vitamin B Complex 

Then once your serum B12 is over 500 (or Active B12 level has reached 70), you may be able to reduce then stop the B12 and just carry on with the B Complex.

If Vegetarian or vegan likely to need ongoing separate B12 few times a week 

Very effective B12 drops 

natureprovides.com/products...

Or

B12 sublingual lozenges 

uk.iherb.com/pr/jarrow-form...

cytoplan.co.uk/shop-by-prod...

B12 range in U.K. is too wide

Interesting that in this research B12 below 400 is considered inadequate 

healthunlocked.com/thyroidu...

When completed folic acid prescription

supplementing a good quality daily vitamin B complex, one with folate in (not folic acid) 

This can help keep all B vitamins in balance and will help improve B12 levels too

Difference between folate and folic acid 

healthline.com/nutrition/fo...

Many Hashimoto’s patients have MTHFR gene variation and can have trouble processing folic acid.

thyroidpharmacist.com/artic...

B vitamins best taken after breakfast

Thorne Basic B recommended vitamin B complex that contains folate, but they are large capsules. (You can tip powder out if can’t swallow capsule) 

Thorne currently difficult to find at reasonable price, should be around £20-£25. iherb.com often have in stock. Or try ebay 

Other options 

healthunlocked.com/thyroidu....

IMPORTANT......If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 7 days before ALL BLOOD TESTS , as biotin can falsely affect test results

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

endocrinenews.endocrine.org...

In week before any blood test, when you stop vitamin B complex, you might want to consider taking a separate folate supplement and continue separate B12

SlowDragon profile image
SlowDragonAdministrator

Have you had coeliac blood test

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. Dairy is second most common. 

 A trial of strictly gluten free diet is always worth doing

Only 5% of Hashimoto’s patients test positive for coeliac but a further 81% of Hashimoto’s patients who try gluten free diet find noticeable or significant improvement or find it’s essential

A strictly gluten free diet helps or is essential due to 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 may slowly lower TPO antibodies 

While still eating high gluten diet ask GP for coeliac blood test first or buy test online for under £20, just to rule it out first 

Assuming test is negative you can immediately go on strictly gluten free diet 

(If test is positive you will need to remain on high gluten diet until endoscopy, maximum 6 weeks wait officially) 

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...

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

Non Coeliac Gluten sensitivity (NCGS) and autoimmune disease

pubmed.ncbi.nlm.nih.gov/296...

The predominance of Hashimoto thyroiditis represents an interesting finding, since it has been indirectly confirmed by an Italian study, showing that autoimmune thyroid disease is a risk factor for the evolution towards NCGS in a group of patients with minimal duodenal inflammation. On these bases, an autoimmune stigma in NCGS is strongly supported

nuclmed.gr/wp/wp-content/up...

In summary, whereas it is not yet clear whether a gluten free diet can prevent autoimmune diseases, it is worth mentioning that HT patients with or without CD benefit from a diet low in gluten as far as the progression and the potential disease complications are concerned

restartmed.com/hashimotos-g...

Despite the fact that 5-10% of patients have Celiac disease, in my experience and in the experience of many other physicians, at least 80% + of patients with Hashimoto's who go gluten-free notice a reduction in their symptoms almost immediately.

Similarly few months later consider trying dairy free too. Approx 50-60% find dairy free beneficial

Hashimoto’s and leaky gut often occur together

PurpleNails profile image
PurpleNailsAdministrator

TSH 0.100 (0.38 - 5.33)

FT3: 6.8 pmol/l (Range 3.8 - 6) 136.36%

FT4: 24.8 pmol/l (Range 7.8 - 14.4) 257.58%

Hashitoxicosis is transient elevation & not from thyroid overproducing but from damaged thyroid cells releasing hormones stores. (During autoimmune attacks)

Carbimazole stops / reduces production of new hormone & therefore should only be given if thyroid continuously overproducing, not what happening during Hashtoxicosis. Which is why you became hypo again & went back on levo.

Your levels are currently quite high with FT4 2.5X Normal range & FT3 elevated  too. Had you taken levo a few hours before mid morning test? If so may be falsely higher but I would say is far higher than it should be.  

Usually levo is adjusted by 25mcg per day at a time if over medicated.  What did doctor suggest? You might want to reduce by a more or just take a very low dose temporarily.  If Doctor suggests you are hyper & stop or restart carbimazole - don’t agree.  

Retest in 6 weeks.  Most nutrients need to be in top 50% of range & ranges vary between labs so you need to add result & range. 

Things to remember when testing:

A - Always check what’s being tested & collect test results with reference range.

B - Biotin - cease 3 days before draw to avoid possible test interference

C - Consistent unchanged dose - minimum 6 weeks previously before retest 

D - Delay replacement dose on day of test (take after blood draw) 

E - Early morning appointment. (Book as close to 09.00 as possible) F - Fast overnight.  This can have a slight impact.  Drink lots of water

pennyannie profile image
pennyannie

Hello Steph and welcome to the forum :

You have a diagnosis of Hashimoto's auto immune thyroid disease which can present with periods of over range T3 an T4 readings when your immune system is active and mistakenly attacking your thyroid rather than defending it.

These episodes are transient and the T3 and T4 usually fall back down into range by themselves and not usually medicated with an Anti Thyroid drug - Carbimazole - which blocks / disrupts your own daily natural production of T3 and T4 thyroid hormones.

An AT drug is generally only prescribed when the diagnosis is Graves Disease which is much higher levels of T3/T4 which keep building and seen as life threatening if not medicated.

You might like to read around Hashimoto's AI thyroid disease and many forum members find the research of Dr Izabella Wentz very useful. thyroidpharmacist.com

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