Follow up question to high antibiodies - Thyroid UK

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Follow up question to high antibiodies

Sob40 profile image
13 Replies

Hi All

Just a follow up to a previous question I had three months ago about my antibiodies results. Following advise I received from

The group , I spoke to the dr who increased my levothyroxine to 75mg and prescribed iron tablets . I have also started to take selenium and b12 and vitamin d supplements . I changed my diet to gluten free . I replaced bread and wraps with gluten free and try to buy products that suitable for gluten free

I still do feel tired . My weight hasn’t changed . How long can the changes take ? My last blood tests showed that my T4 and TSH has gone down . Antibiodies are still High . Also , dr doesn’t seem to think it’s hasimoto’s even though I explained I have most of them symptoms and thinks it’s not worth while to test for T3. I have another appointment next week . Is there anything else anyone can recommend I can say to the Gp or what I else I should be doing .

Concerned about my TSH decreasing

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Sob40
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13 Replies
Lalatoot profile image
Lalatoot

Are you supplementing with b12 complex? If yes, did you stop it for at least 7 days prior to blood test?

Sob40 profile image
Sob40

Yeah I am taking b12 complex. Does this effect the results ?

Lalatoot profile image
Lalatoot in reply toSob40

Yes. The biotin affects the testing process and skews the results.

SlowDragon profile image
SlowDragonAdministrator

high antibodies confirms cause of your hypothyroidism is Hashimoto's, (known by medics here in UK more commonly as autoimmune thyroid disease).

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

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

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

healthcheckshop.co.uk/store...?

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...

restartmed.com/hashimotos-g...

Non Coeliac Gluten sensitivity (NCGS) and autoimmune disease

ncbi.nlm.nih.gov/pubmed/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

ncbi.nlm.nih.gov/pubmed/300...

The obtained results suggest that the gluten-free diet may bring clinical benefits to women with autoimmune thyroid disease

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.

Low vitamin levels affect Thyroid hormone working.

Ferritin is currently low.

Have you increased iron rich foods in diet

When were vitamin D, folate and B12 last tested

Important to stop vitamin B complex a week before blood tests as it contains biotin that may falsely affect test results

Sob40 profile image
Sob40 in reply toSlowDragon

They were tested 3 months ago. I have increased iron food intake . Having more green leafy vegetables and lamb once a week ( not a big lamb eater )

SlowDragon profile image
SlowDragonAdministrator

Do you always get same brand of levothyroxine at each prescription

Was most recent test done as early as possible in morning before eating or drinking anything other than water and last dose levothyroxine 24 hours before test?

Sob40 profile image
Sob40 in reply toSlowDragon

I do get the same brand . It was done at the end of the day , I had not taken my Levo dose that day . Is it best to get the test in the morning ?

SlowDragon profile image
SlowDragonAdministrator in reply toSob40

Always test as early as possible in morning before eating or drinking anything other than water and last dose levothyroxine 24 hours before test

TSH daily variation

healthunlocked.com/thyroidu...

Very important when you test TSH ....

researchgate.net/publicatio...

According to the current TSH reference interval, hypothyroidism was not diagnosed in about 50% of the cases in the afternoon.”

“Further analysis demonstrated inadequate compensation of hypothyroidism, which was defined in 45.5% of the morning samples and in 9% of the afternoon samples”

ncbi.nlm.nih.gov/pubmed/252...

TSH levels showed a statistically significant decline postprandially in comparison to fasting values. This may have clinical implications in the diagnosis and management of hypothyroidism, especially SCH.

Median TSH graph

healthunlocked.com/thyroidu...

tattybogle profile image
tattybogle

"Also , dr doesn’t seem to think it’s hasimoto’s even though I explained I have most of them symptoms "

Unless i'm mistaken , the only cause of very high TPOab levels is as a result of the damage incurred to the thyroid from Autoimmune Thyroid Disease.

"Hashimoto's" is not a term most Doctors are comfortable using despite (or possibly because of) it being used so often on the internet,..... they usually call the condition "Autoimmune Thyroid Disease', or quite often (since this is the most common cause) they just call it "Hypothyroidism", and i suspect some of them are so poorly educated on the subject they don't even understand that there is a difference between "hypothyroidism from an autoimmune cause" and "hypothyroidism from a different cause"... it doesn't really matter to them because from their point of view the treatment of the resulting hypothyroidism is the same regardless of cause.

However , regardless of whatever term you doctor uses for it , if he is saying your very high TPOab do not indicate Autoimmune thyroid disease, i'd be interested to know what other cause he thinks there is for them to be this high, cos like i said ... i don't think i've come across another explanation for raised TPOab other than Autoimmune Thyroid Disease, other wise commonly known as Hashimoto's Disease.

Strictly speaking "hashimoto's" only applies to Autoimmune cases who had a goitre, those who are autoimmune but didn't have a goitre (like me) would technically be "Ord's Disease".

But the distinctions and terminology have always been a bit fuzzy, and quite often "Hashimoto's" is used as an umbrella term for both kinds. And "Autoimmune Hypothyroidism" also covers both.

Sob40 profile image
Sob40 in reply totattybogle

Thanks for the reply and interesting questions I can ask my GP. I have preciously suffered from hyperthyroidism and did have a goitre . With treatment after 14-15 years . I was taken of my medicine as levels were normal . Now it seems it has gone hypo.

tattybogle profile image
tattybogle in reply toSob40

Ah... well that changes thing's we didn't know you'd previously been treated for hyperthyroidism.

I'm a little out of my depth on hyperthyroid issues , but possibly your Doctor is correct.

You may have Graves disease, and i think that this can sometimes end up as hypothyroidism, but when it does i'm not clear if it means you have Hashimoto's as well or if it's just part of the progress of Graves.

Did you gave Graves Antibodies (TRab/TSI) tested before starting on anti-thyroid drugs /

Were you treated with anti-thyroid drugs for 14 yrs ? and then came off them.

How long ago did you stop them ?

Sob40 profile image
Sob40 in reply totattybogle

Sorry about that , I was focussing on my current situation He just went off my my T4 results and said it was on low side and could be hypo thyroid Related . I was treated on and off for 14 years with carbimazole . Then also for a few years with block and replace therapy with cabimazole and levothyroxine . When I was pregnant , I was on another medicine for a few years ( can’t recall the name of product ). It’s been 6 years since I stopped treatment . For the last 5 years I have been going to the drs about my tiredness and weight gain . Then it was only a few months ago , one GP said my T4 said is on low side and suggested to go on levothyroxine. They only tested for the antibodies after I pushed them too . Is it worth getting my T3 checked ? If it’s possible graves , should this be treated by a specialist ? Thanks

tattybogle profile image
tattybogle in reply toSob40

It's possible to have both Graves Hyperthyroidism (caused by (TRab) which make thyroid produce too much T4/3) AND Hashimoto's Hypothyroidism at the same time.... and for periods they balance each other out . ...

Presumably you were seen by an Endocrinologist during the hyperthyroid period/ carbimazole /and then the Block and replace ?.....this is the time that (hopefully) TRab should have been tested to determine if it was Graves causing the high T4/3 levels.

Usually only endocrinologists can order the test for these antibodies ,GP may not be allowed to - but you may have already been tested for them during Hyperthyroid diagnosis, so ask GP if there is a result for TRab on your records.

Endocrinologists only usually get involved during hyperthyroidism , they are not usually involved during hypothyroidism.

You might find these interesting/ helpful to begin to understand how Autoimmune Thyroid disease can involve periods of Hyper and Hypo in some people....with periods of remission in between:-

The spectrum of thyroid autoimmunity.

healthunlocked.com/api/redi...

part 2

thyroidpatients.ca/2020/04/...

Remissions and Fluctuations in Autoimmune Thyroid Disease due to TSH Receptor antibodies (TRab)

thyroidpatients.ca/2020/04/...

Make sure to mention your 'previous' of Hyper /Carbimazole / Block and Replace in replies to others on here, as it makes a difference to how they interpret your current situation/results.

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