I’m not going to get anywhere with go with thes... - Thyroid UK

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I’m not going to get anywhere with go with these results

Rush2112 profile image
18 Replies

Blue horizon finger prick test as dr say antibodies don’t cause symptoms I’m not going to get anywhere with these results

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Rush2112 profile image
Rush2112
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18 Replies
tattybogle profile image
tattybogle

At the moment , you are probably right, no one in NHS will listen, ..... but when thyroid is failing TSH can go up quickly , mine went from 5.7 to 6.8 in 6 weeks at which point i was given Levo on NHS due to very high TPOab's, even tho' T4 was still mid range.

And while antibodies don't (apparently) give symptoms, they do definitely indicate an increased risk of becoming actually hypothyroid in future (ie. over range TSH+under range FT4)

You TPOab's and TGab;s are both significantly over range, so something is definitely going on and the TPOab's indicate that it is definitely going on in relation to your thyroid and not something else.

So trust how you feel ,and re test the thyroid levels in early morning after 2/3 months, to see if the TSH is rising , 'cos it's already higher than a healthy normal level which is firmly under 2 for most of the healthy population .

SlowDragon profile image
SlowDragonAdministrator

Looking at previous posts you mention Graves’ disease

Was this actually confirmed by testing TSI or Trab antibodies

These results above confirm autoimmune thyroid disease also called Hashimoto’s

Hashimoto’s frequently starts with transient hyperthyroid results and symptoms and is often misdiagnosed as Graves’ disease

Absolutely essential to regularly retest vitamin D, folate, ferritin and B12 with both Hashimoto’s and Graves

When were vitamin levels last tested?

What vitamin supplements are you currently taking

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.

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.

Your cortisol test is very high

Why gluten intolerance can upset cortisol levels

kalishinstitute.com/blog/gl...

Please add vitamin results or come back with new post once you get results

Rush2112 profile image
Rush2112 in reply to SlowDragon

Thanks for reply I’m all ok with it advise as I have been in remission for graves for about 4 years I have positive antibodies for both graves and Hashimoto The endo said back then that it may progress to Hashimoto in future but my graves antibody were much higher see my first posts

Cortisol is a bit of worry though

SlowDragon profile image
SlowDragonAdministrator in reply to Rush2112

Getting vitamin levels tested essential

trialing strictly gluten free diet AFTER getting coeliac blood test may help significantly ....only way to know is to try it

Rush2112 profile image
Rush2112 in reply to SlowDragon

My celiac test was negative and my instinct factor was normal I do however take sublingual b12 vit d supplement

SlowDragon profile image
SlowDragonAdministrator in reply to Rush2112

5% are coeliac, but 80-86% find strictly gluten free diet helps or is absolutely essential....

SlowDragon profile image
SlowDragonAdministrator in reply to Rush2112

Testing vitamin levels twice year

Come back with new post once you get results

pennyannie profile image
pennyannie in reply to Rush2112

Hey there Rush

I'm sorry, but I can't see any results of over range Graves antibodies :

I'm looking for a TSI or a TR ab antibody test that is unique to Graves - is it on your very first post some 6 years ago ?

Rush2112 profile image
Rush2112 in reply to pennyannie

Looks like my early posts aren’t on there any more but yes they were tested also had to have lot of treatment for eyes as well can’t believe how long ago but I have never really felt well since

pennyannie profile image
pennyannie in reply to Rush2112

Well, yes, I know that feeling as I was diagnosed with Graves in 2003 and had RAI thyroid ablation in 2005 and now manage lingering Graves, thyroid eye disease-caused by the RAI and hypothyroidism.

ling profile image
ling

Maybe you have Hashimoto's?

Was TRAb ever tested?

Rush2112 profile image
Rush2112 in reply to ling

Hi long wow 6 years ago can’t believe that yes Trab was tested I was very hyper but it looks like posts are gone from that long ago

Rush2112 profile image
Rush2112 in reply to ling

Tried to find those original blood tests but can’t but definitely graves has I have thyroid eye disease as well have the consultant letter say trab is positive at 0.6 Might of been in days when I didn’t ask for paint out but with thyroid scan eye disease and positive trab was confirmed graves

Buddy195 profile image
Buddy195Administrator in reply to Rush2112

Just wanted to say that my Endo originally said Graves due to hyper symptoms but antibody tests clearly show Hashis. I also have diagnosed TED, so it may be possible that you have the same. It is less common to have thyroid eye with Hashimotos, so I think it’s one reason medics assume it’s Graves. I’m thankful to forum members for persuading me to check bloods privately & challenge my diagnosis.

ling profile image
ling in reply to Rush2112

Yes, after looking through your posts from 6 years ago, saw your TRAb was 0.6 with a max range of 0.4, so yes, u had Graves back then. Currently though, since TRAb hasn't been tested, we can't say for sure u still have Graves. Your TPO was high back then if I remember correctly, so it's possible u had Hashimoto's back then as well.

However, the latest blood test with the high TPO and TgAb, would certainly indicate u have Hashimoto's, and that would mean different treatment is warranted. An experienced endo is certainly preferred if u have both Graves and Hashimoto’s.

Hillwoman profile image
Hillwoman

As Tat says, watch the progress of your TSH and free thyroid hormones from this point on. If you hadn't included antibdy tests in your thyroid panel, your results would look quite normal at this stage. If I were you, I'd test again in four weeks.

Raised antibodies don't cause symptoms in themselves - aside from the symptoms and signs of incipient hypothyroidism, that is - but if the thyroid gland is under concerted attack by the body's own immune system you can get discomfort and pain in the gland itself, even without any obvious swelling.

Rush2112 profile image
Rush2112

The thyroid scan I had when I had graves showed my thyroid was diffused so spread across my throat

SlowDragon profile image
SlowDragonAdministrator in reply to Rush2112

Scan results sounds more like Hashimoto’s

I don’t think you can see anything unusual in ultrasound if it’s Graves’ disease

But with both Graves’ disease and Hashimoto’s low vitamin levels are extremely common result and strictly gluten free diet frequently helps both Graves’ disease and Hashimoto’s

Swollen, dry and gritty eyes can be Hashimoto’s too

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