I have always had issues with my Thyroid Peroxidase Antibodies being high. For the last say seven years.
I have symptoms of an under active Thyroid which is how they found this out in the first place.
However all the GP will do is keep repeating the tests every year because the TSH, free T3 and free thyroxine are all in the normal ranges
TSH -3.4mIU/L
free t3 - 5.82pmol/L
Free thyroxine - 15.7pmol
My TPA is 86.9kIU/L when the normal range is 34.
If you are suffering symptoms of thyroid disease, and have clear blood tests showing antibodies attacking the thyroid, how likely is it to be Hashimotos and how hard is it to get a GP to diagnose it as such?
It seems like they want to leave it until it reflects in the other results but the symptoms im suffering are causing great issues every day.
Anyone got any advice or hints for me?
Thanks in advance 😊
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Over-range TPO antibodies always mean Hashi's. But, it's not the antibodies attacking the thyroid. The antibodies are there to clean up the blood after an attack.
However, having high antibodies doesn't always mean that your other blood test results will be high enough to get you a diagnosis. For one thing, doctors have next to no knowledge of what antibodies mean. They know little about Hashi's because they don't learn about it in med school - for a start, in the UK they don't even call it Hashi's, they call it Autoimmune Thyroiditis. But, they have no idea how it works.
About all a GP looks at is the TSH, and for them, you're not really hypo until your TSH goes over 10! However, if they took the trouble to carefully read the NICE guidelines, that they're always going on about, it actually says that over-range antibodies, over-range TSH and low FT4 warrants a diagnosis.
Unfortunately, your TSH is not over-range - at least I don't think so, but you haven't given the ranges, so your results don't mean much. Techincally, you are hypo - a healthy TSH is around 1, never over 2 and at 3 you are hypo - but the ranges are totally unrealistic. Doctors stick ridigly to ranges (when it suits them!).
What's more, they learn nothing about symptoms in med school, so they mean nothing to them. Well, they might know one or two, but if you don't happen to have those particular ones, your symptoms will be ignored.
It can be very hard getting a diagnosis with your average GP. So, unless you happen to stumble across one that stands out from the herd, I'm afraid you're just going to have to wait until things get worse. Sorry.
The ferratin was 21.9 in a range of 13 - 150The vitamin D was 27.7 in a range of 50 - 175
Folate was 13.33 with a range of > 3.89
B12 was 45.8 with a range of > 37.5
I am on a dose of 4,000iu vitamin D to be re tested after ten weeks.
I do not have gluten intolerance as this was tested and no food allergies as i had a full spectrum allergy test as i have a serious allergy to house dust mites 😊
In all people, a serum ferritin level of less than 30 micrograms/L confirms the diagnosis of iron deficiency.
Are you vegetarian or vegan
Eating iron rich foods like liver or liver pate once a week plus other red meat, pumpkin seeds and dark chocolate, plus daily orange juice or other vitamin C rich drink can help improve iron absorption
This is interesting because I have noticed that many patients with Hashimoto’s disease and hypothyroidism, start to feel worse when their ferritin drops below 80 and usually there is hair loss when it drops below 50.
Thyroid disease is as much about optimising vitamins as thyroid hormones
Active B12 below 70 is too low and you need full testing by GP of B12 and folate and testing for Pernicious Anaemia before starting on any B12 daily supplements
Don’t start any B vitamins until had further testing by GP
supplementing a good quality daily vitamin B complex, one with folate in (not folic acid) may be beneficial. This can help keep all B vitamins in balance and will help improve B12 levels too
Thorne Basic B is a recommended option that contains folate, but is large capsule. You can tip powder out if can’t swallow capsule
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
If serum B12 result below 500, (Or active B12 below 70) recommended to be taking a B12 supplement as well as a B Complex (to balance all the B vitamins) initially for first 2-4 months, then once your serum B12 is over 500 (or Active B12 level has reached 70), stop the B12 and just carry on with the B Complex.
Vitamins are low as direct result of being hypothyroid
When hypothyroid, especially with Hashimoto’s, we frequently have low stomach acid. This leads to poor nutrient absorption and low vitamin levels as direct result
Poor gut function with Hashimoto’s 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
As coeliac result is negative you can consider trialing strictly gluten free diet for 3-6 months. Likely to see benefits.
If no obvious improvement, reintroduce gluten see if symptoms get worse.
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
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
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.
You have gone into so much detail and i really truly appreciate your time
My test results mentioned non of this being a concern, they just recommended Vitamin D tablets! :0
I will ask for a repeat blood test from my GP and will see if they say anything on your recommendation as it looks like some things may be clearly being overlooked somewhere!
I never realised there was a link between my vitamin levels and the TPA being high! What you have said makes a lot of sense.
I shall investigate further and it looks like a diet change may be in order as i do eat a tonne of bread!! 😆
However your mention of dairy strikes a bell as sometimes if i eat too much cheese or drink too much milk i can feel ill and it definitely is not an allergy, but definitely triggers my IBS symptoms so i have to carefully ration my milk intake, so i could possibly be intolerant like you mention, i just have not had a test for this yet as they tend to be very expensive.
I shall try a gluten and dairy free diet for a while and see how i feel, as anything is better than feeling like the walking zombie i feel like atm! The exhaustion is unreal lol!
I hope the gluten and dairy free works as well for you as it has for me! The lactase enzyme is at the tip of the villi in the intestines so very prone to damage by any gut issues, including coeliac, but also Crohn's and food intolerances such as corn or soy. I too craved bread but can't tolerate gluten free either. It may be that you have an underlying gluten intolerance and that you will be able to tolerate dairy again once you have healed. Lactose intolerance is common but some are only very mildly affected. Sometimes it is the casein that is the problem and A2 is better tolerated (like Guernsey). Best wishes
I also have an allergy to dust mites. I don’t have a gluten allergy as such. Nothing showed up in all of the tests that I had, but the tests they use are not reliable and don’t show up when you have gluten intolerance.
I had IBS all of my life (diagnosed in my early 20s) I went gluten free at age 65 to try to reduce my thyroid antibodies as detailed in Izabella Wentz’s book.
Within 6 months, it became obvious that I no longer had any IBS symptoms. If I’m accidentally “glutened” now, I get an almost instant reaction.
It’s well worth cutting it out for a trial period just to see if it makes a difference.
I feel your pain. I get exhausted, slow, and had some pain/tenderness around my throat. They only found the thyroid link when during a head/neck ultrasound I asked them to take a look at the front and they found small hypoechoic nodules on my thyroid. Subsequent blood test found TPO antibodies over 1300 (?!?!) but TSH and and free t3/t4 were in normal range then and the same in subsequent 2 tests 6 months apart. Has anyone come across TPO levels this high before? Don't know whether I should be doing something else. GPs however feel content with just sitting and waiting until I cross an arbitrary line.
This is the kind of post, that makes my blood boil, wouldn't you think that if GPs know their knowledge of thyroid disease is woeful, they would actually try to improve it, as Hashimotos and other thyroid problems are becoming more common these days. It feels like they simply don't care anymore and are happy to keep their patients ill, despite the fact it's actually costing the NHS more money in the long run.
I have her Root Cause book. It is brilliant for anyone with Hashimotos. GP’s don’t tell you that when you have one autoimmune disease you are at a much greater risk of developing others as time goes by. This is why it is crucial to make lifestyle interventions to try and improve inflammation such as TPO antibodies to try and prevent/reverse this progression. All the advice above is awesome and will likely help you feel better. Personally, I now use Medichecks ‘advanced thyroid test’ on a regular basis and i feel so much more empowered that ‘I know’ what’s going on and I can use that information to make lifestyle interventions with the aim of improving my health results. Using private blood testing has meant that i don’t have to beg or rely on a doctor for testing and it has been one of the best things I’ve done!
This is a great little video that I hope might help. All the best.
Mmmm . whilst the video does offer some good advice and explanation on the subject of 'healing the gut' there are some issues with it's understanding of how autoimmune thyroid disease actually works....
this video is saying :
*TPO antibodies CAUSES attack .. . well, no, TPOab are the RESULT of the attack , and some people have hashimoto's damage (seen in thyroid gland) without TPO antibodies.
*Says hashimoto's is a spectrum of disease ranging from mild to severe, DEPENDING on the elevation of the TPOantibodies .... and the higher the TPO, the more likely the patient will have symptoms. It say's the TPOab 'inflames' the thyroid, and the higher the TPOab , the more likely a higher dose of thyroid medication is needed.
*Says 'inflammation in thyroid' can causes symptoms of hypothyroidism, but doesn't mention the actual cause is the consequent LACK of thyroid hormones.
* Say's that reducing TPOab will improve symptoms. prevent progression of hashimoto's and prevent any other autoimmune disease from occurring.
* Relies on raised TSH level for diagnosis and so fails to mention Central hypothyroidism.
*Says they never want to supress TSH, as this can be associated with osteoporisis/ heart palpitations/ anxiety ... but they say they prescribe T3 /NDT which will very often supress TSH even though both T4/3 are in range.
* Strongly suggests all the way through video that lowering TPOab is what improves the symptoms. for example ;
while it does explain T4/T3 /NDT very well , it doesn't mention if the patient who felt so much better (in 3 months after diagnosis) when her TPOab 's fell from 700 to 150, had also been started on thyroid hormone replacement at the same time.
.... unfortunately this way of looking hashimoto's/TPOab doesn't ring true with what we actually know about TPOab levels in most people with Autoimmune Thyroid Disease .
eg .
I had extremely high TPOab of >3000 [0 -50] at diagnosis , but my symptoms/ TSH /fT4 were no worse than some who have TPOab of 'just' 95... or those who have no TPOab at all.
Nor did it mean i needed a higher dose of thyroid hormone replacement than anyone else.
And when , years later, i found i had TPOab of 'only' 195 ( without making any dietary changes at all ) .... it didn't change anything about my symptoms or the dose of thyroid hormone i needed.
So by all means try to improve diet as suggested on this video.. but don't swallow everything else on it .
Hi tattybogle, Thank you for pointing out those inaccuracies. On the plus side, it does send a positive message that we are not necessarily stuck in a disease state and that by making changes we can improve our health without waiting on fate or doctors. After all, most of us were not born with Hashimotos, we developed it over time because something triggered genes in our bodies that made it happen. Things like gut microbes, dietary triggers, inflammation and nutrition have all been shown to play a part in disease states. lzabella Wentz put her Hashimotos disease into remission using such lifestyle interventions and I hoped the video link might inspire.🙂
yes . i absolutely agree it's important to improve what things we can in the gut, and it's rubbish that so little interest is given to understanding the autoimmune side of things by Doctors etc . The only problem with people promoting the idea that 'antibodies' are the problem , is that one day if a reputable study compares TPOab levels to symptoms and bloods and find's no connection, that will be more ammunition for those who say "all those banging on about 'my hashi's symptoms' have all been deluding themselves".. which would be shooting ourselves in the foot
If we don't yet understand how /why something happens we should say so .. that way we retain credibility .
I completely agree, only considering TPOab is clearly limited given the prevalence of it in the general healthy population and the variability between individuals. There are long-term studies that show a faster progression to overt hypothyroidism in high TPOab vs low, although the increase was marginal (4.3% vs 2.6% patients per year, annlabmed.org/journal/view...., as well as some case studies demonstrating very high TPOab being a diagnostic tool for Hashimoto's encephalitis, although this condition is rare, that is responsive to steroids and intravenous IgG treatment (casereports.bmj.com/content.... I guess a lot of it is down to how much time/money is being spent on research in this area, I haven't seen a lot of active trials in my local area at least.
Mine were >1300 too. Tested post lock down after getting into baking big time. My TSH had been hovering around 5 for a few years untreated and it went to 11 post lockdown. Don't know if all the gluten tipped me over Into treatable or just a coincidence?
What time of day are you having TSH tested ? TSH is highest in middle of the night (ish ) and falls to its lowest everyday around 1-3pm (ish)
This is why we advise getting thyroid bloods done as early as possible in the morning (preferably before 9am) .. especially when trying to get a diagnosis.
Less people get diagnosed with hypothyroidism in the afternoon.
Its not usually a massive difference, but .. every little helps.
(Also, just to be on the safe side ,don't have anything other than water before blood test. The evidence that breakfast lowers TSH is sketchy to say the least , but . you might as well stick with just water anyway .. if nothing else it helps make sure all you tests are comparable.
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Medicheck results. Ignoramus here would like your help! Do I have to confront my GP?
Do I have Hashimoto's?
I have the Hashimoto disease since 99.. But my Gp refuses to write me a referral for an endo!!?
Do I have Hashimoto? 
Advice for my mum please. Could she have hashimotos like me?
