Advice on test results: Please can anyone help me... - Thyroid UK

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Advice on test results

TiredDad profile image
27 Replies

Please can anyone help me to understand my results? My TSH has been going down but my symptoms have remained bad and I'm confused what I should do now. What I don’t understand is why my T4 has been going up, almost to an unsafe level, but my T3 has remained fairly constant. Could I have a problem to do with conversion of T4 into T3? Over the last six months my results have been like this:

T4:

December: 19.1

March: 17.9

May: 21.7

T3:

December: 5.38

March: 4.33

May: 4.43

TSH

December: 5.01

March: 2.63

May: 0.668

Is this a pattern anyone recognises? My TSH is now about 0.7 and T4 high but I still feel bad. The most obvious thing I can see in my results is that T3 isn’t changing much while the other measures are. With my TSH quite low and the T4 high I can’t see the GP agreeing to increase my dose of levo.

I’d also like ask if anyone knows why hypothyroid patients can struggle to absorb vitamins? I have Hashimotos and I’ve had to take very high dose supplements to budge up my levels of vitamin D and B12. I’ve been taking a multivitamin with extra iron (14mcg) and this hasn’t lifted my levels of ferritin at all.

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TiredDad
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SlowDragon profile image
SlowDragonAdministrator

We never recommend multivitamins...they have too little of what we do need and usually have cheap poorly absorbed ingredients...plus things we definitely do NOT want ...like iodine

Only test and supplement Specific vitamins that are deficient

With Hashimoto’s we frequently need high dose vitamin D to improve levels..

GP will often only prescribe to bring Vitamin D levels to 50nmol...Some areas will prescribe to bring levels to 75nmol

leedsformulary.nhs.uk/docs/...

GP should advise on self supplementing if over 50nmol, but under 75nmol (but they rarely do)

mm.wirral.nhs.uk/document_u...

NHS Guidelines on dose vitamin D required

ouh.nhs.uk/osteoporosis/use...

But improving to around 80nmol or 100nmol by self supplementing may be better

ncbi.nlm.nih.gov/pubmed/218...

vitamindsociety.org/pdf/Vit...

Once you Improve level, very likely you will need on going maintenance dose to keep it there.

Test twice yearly via vitamindtest.org.uk

Vitamin D mouth spray by Better You is very effective as it avoids poor gut function. There’s a version made that also contains vitamin K2 Mk7

It’s trial and error what dose we need, with hashimoto’s we frequently need higher dose than average .....not usual to need 2000-3000iu as maintenance dose and higher if trying to increase low levels

Government recommends everyone supplement October to April

gov.uk/government/news/phe-...

Also read up on importance of magnesium and vitamin K2 Mk7 supplements when taking vitamin D

betterbones.com/bone-nutrit...

medicalnewstoday.com/articl...

livescience.com/61866-magne...

sciencedaily.com/releases/2...

Vitamin K2 mk7

betterbones.com/bone-nutrit...

healthline.com/nutrition/vi...

SlowDragon profile image
SlowDragonAdministrator

Important to regularly retest folate, B12 and ferritin too

What are your current results?

Exactly what B12, folate and iron supplements are you prescribed?

Improving nutrients improves conversion

healthunlocked.com/thyroidu...

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

Low vitamin levels affect Thyroid hormone working

Eg ferritin

drhedberg.com/ferritin-hypo...

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

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.

SlowDragon profile image
SlowDragonAdministrator

Previous post

healthunlocked.com/thyroidu...

Also ....guidelines by weight might help push for dose increase

Even if we frequently don’t start on full replacement dose, most people need to increase dose slowly upwards in 25mcg steps (retesting 6-8 weeks after each increase) until on full replacement dose

NICE guidelines on full replacement dose

nice.org.uk/guidance/ng145/...

1.3.6

Consider starting levothyroxine at a dosage of 1.6 micrograms per kilogram of body weight per day (rounded to the nearest 25 micrograms) for adults under 65 with primary hypothyroidism and no history of cardiovascular disease.

gp-update.co.uk/Latest-Upda...

BMJ also clear on dose required

bmj.com/content/368/bmj.m41

bestpractice.bmj.com/topics...

TiredDad profile image
TiredDad in reply to SlowDragon

Thanks so much. I appreciate the warning about multivitamins. I only started taking the version with iron on the recommendation of my GP. I’m taking it for the iron so will move on to taking iron tablets only.

My level of vitamin D is quite decent now at 80.3 nmol/L but to get it that high I have been taking 5000iu tablets. When my level is a bit higher I think I’ll switch to 3000iu as I’ve heard it can be bad for the kidneys to have such high doses.

My B12 level is 98.3 pmol/L. When I started supplementing my diet it was only at 44.1 pmol/L so the supplements seem to be working.

My folate levels have never been particularly low. The last test on medichecks had them at 11.79ug/L.

My problem last year was with low ferritin levels and I was prescribed strong iron tablets, I think 200mcg, until they recovered. My ferritin levels are currently at 66.6 ug/L and have remained at roughly this level for the last six months despite taking 14mcg iron per day for some months now.

Thanks for the info re magnesium and vitamin K2 Mk7, I will consider taking the vitamin K2 Mk7 along with my magnesium tablet.

I appreciate the need to get a more optimal level of nourishment in order to improve thyroid health. Please let me know if you think any of my results suggest the need for further supplementation.

Thanks for the info re gluten-free diets. I tested negative for coeliacs and may try going gluten free if nothing else works.

It seems like you’re suggesting I might want a higher dose of levo even though my T4 is so high. I weigh 85kg and take 150mcg so I get a bit more than the 1.6 micrograms per kilogram of body weight they recommend starting on. I think the GP may be reluctant to increase my dose further. He’s agreed to refer me to an endocrinologist but it could take ages to see them due to Covid-19.

SlowDragon profile image
SlowDragonAdministrator in reply to TiredDad

Any of us with Hashimoto’s find vitamin D mouth spray is good as avoids poor gut function

Better You make one with vitamin K2 mk 7 included, 3 sprays per day is 3000iu and lasts 30 days

So more expensive than the plain 3000iu spray, which lasts 100 days at 3000iu per day

SlowDragon profile image
SlowDragonAdministrator in reply to TiredDad

GP’s don’t learn anything within formal training about nutrition and vitamins

So dose by weight slightly less than currently taking

Getting all four vitamins optimal should help improve conversion

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

dailyiron.net

Links about iron and ferritin

irondisorders.org/Websites/...

Helpful post about iron supplements and testing

healthunlocked.com/thyroidu...

healthunlocked.com/thyroidu...

healthunlocked.com/thyroidu...

drhedberg.com/ferritin-hypo...

Folate 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

Igennus Super B complex are nice small tablets. Often only need one tablet per day, not two. Certainly only start with one tablet per day after breakfast. Retesting levels in 6-8 weeks

Or Thorne Basic B or jarrow B-right are other options that contain folate, but both are large capsules

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...

You might consider trying dairy/lactose free first

Lactose intolerance is also very common with Hashimoto's

ncbi.nlm.nih.gov/pubmed/240...

Lactose intolerance was diagnosed in 75.9 % of the patients with HT

read.qxmd.com/read/24796930...

These findings show that lactose intolerance significantly increased the need for oral T4 in hypothyroid patients.

TiredDad profile image
TiredDad in reply to SlowDragon

Thanks again. Please could you tell me what is considered an optimal level for each of the vitamins?

You recommend a good vitamin B complex. Does this one look okay? simplysupplements.co.uk/sup...

It’s a bit cheaper than the one you mention.

I think I’ll see how I go with vitamin supplements and try to see an endocrinologist before I switch my diet drastically. I’m not ruling it out but just want to try some other things first.

SlowDragon profile image
SlowDragonAdministrator in reply to TiredDad

That has folic acid not folate

Igennus is one of cheapest that has folate in

60 tablets ...at one a day ...lasts 2 months

amazon.co.uk/Super-B-Comple...

greygoose profile image
greygoose

Impossible to see any sort of trend, the way you've posted your results. Given that we need to consider all three results together, they need to be posted together - and we need the ranges, so should look something like this:

December:

TSH 5.01 (range)

FT4 19.3 (range)

FT3 5.38 (range)

And, there, straight away, we can see that those results are strange! The TSH is very high considering your - presumably - high, and reasonable FT3. That is if the ranges are anything like the ranges we normally see. But, they do vary from lab to lab.

May:

TSH 0.668 (range)

FT4 21.7 (range)

FT3 4.43 (range)

So, there we can see that your TSH has dropped to a more reasonable level, and the FT4 has risen to the - presumably - top of the range (22?). But, your FT3 has dropped. Which isn't surprising, because your FT4 has now got to the point where the T4 is converting to more rT3 than T3. Your conversion wasn't brilliant to begin with - not poor, but not good, either. Now, of course, it's worse.

So, this is where we ask to see your nutrient levels - you say you don't absorb them very well, but what were the results for: vit D, vit B12, folate and ferritin?

You ask why hypos don't absorb nutrients very well. And, the answer is: low stomach acid. Having low T3 impedes the production of stomach acid, so a hypo has problems digesting food and absorbing nutrients.

You ask why your levels haven't risen despite supplementing and the answer is: because you are taking a multi-vit with extra iron!!!

A little information about multi-vits:

You shouldn't be taking a multivitamin anyway for all sorts of reasons.

* If your multi contains iron, it will block the absorption of all the vitamins - you won't absorb a single one! Iron should be taken at least two hours away from any other supplement except vit C, which is necessary to aid absorption of iron, and protect the stomach.

* If your multi also contains calcium, the iron and calcium will bind together and you won't be able to absorb either of them.

* Multi's often contain things you shouldn't take or don't need : calcium, iodine, copper. These things should be tested before supplementing.

* Multi's often contain the cheapest, least absorbable form of the supplement : magnesium oxide, instead of magnesium citrate or one of the other good forms; cyanocobalamin instead of methylcobalamin; folic acid instead of methylfolate; etc. etc. etc. This is especially true of supermarket multis.

* Multi's do not contain enough of anything to help a true deficiency, even if you could absorb them.

* When taking several supplements, you should start them individually at two weekly intervals, not all at once as you would with a multi. Because, if you start them all at once, and something doesn't agree with you, you won't know which one it is and you'll be back to square one.

* Most supplements should be taken at least two hours away from thyroid hormone, but some - iron, vit D, magnesium and calcium (should you really need to take it) should be taken at least four hours away from thyroid hormone.

* The magnesium you take - and just about everybody need to take it - should be chosen according to what you want it to do:

Magnesium citrate: mild laxative, best for constipation.

Magnesium taurate: best for cardiovascular health.

Magnesium malate: best for fatigue – helps make ATP energy.

Magnesium glycinate: most bioavailable and absorbable form, non-laxative.

Magnesium chloride: for detoxing the cells and tissues, aids kidney function and can boost a sluggish metabolism.

Magnesium carbonate: good for people suffering with indigestion and acid reflux as it contains antacid properties.

Worst forms of magnesium: oxide, sulphate, glutamate and aspartate.

With a multivitamin, you are just throwing your money down the drain, at best, and doing actual harm at worst. Far better to get tested for vit D, vit B12, folate and ferritin, and build up your supplementation program based on the results. A vitamin or a mineral is only going to help you if you need it, anyway. More of something you don’t need is not better, it's either pointless or even dangerous, as with iodine, calcium, iron or vit D. :)

TiredDad profile image
TiredDad in reply to greygoose

Thanks for getting back to me and for the warnings about multivitamins.

I’m not completely sure what you mean when you say:

‘your FT3 has dropped. Which isn't surprising, because your FT4 has now got to the point where the T4 is converting to more rT3 than T3. Your conversion wasn't brilliant to begin with - not poor, but not good, either. Now, of course, it's worse.’

Can you say any more to help me understand how you know this and what it means?

My nutrient levels, copied from my message above, are:

My level of vitamin D is quite decent now at 80.3 nmol/L but to get it that high I have been taking 5000iu tablets.

My B12 level is 98.3 pmol/L. When I started supplementing my diet it was only at 44.1 pmol/L so the supplements seem to be working.

My folate levels have never been particularly low. The last test on medichecks had them at 11.79ug/L.

My ferritin levels are currently at 66.6 ug/L and have remained at roughly this level for the last six months despite taking 14mcg iron per day for some months now.

I have terrible indigestion problems so thanks for the suggestion of magnesium carbonate.

greygoose profile image
greygoose in reply to TiredDad

Can you say any more to help me understand how you know this and what it means?

T4 is converted into T3 and rT3. Always. You will always have some rT3 in your system. But, as rT3 is inert, you don't want too much of it. What you want is T3, because that is active, and is needed by everyone of the thousands of cells in your body to function correctly.

However, the body uses rT3 as a break, to prevent you becoming 'hyper' - i.e. having too much T3 in the system. So, when your FT4 level gets too high, the T4 starts converting to more rT3 than T3. So, your level of FT3 drops. And, that is what is happening to you.

I know that just by looking at your FT4 level.

My level of vitamin D is quite decent now at 80.3 nmol/L but to get it that high I have been taking 5000iu tablets.

Have you also been taking the cofactors: magnesium and vit K2-MK7? If not, you should be. Magnesium and vit D work together, so taking vit d will lower your magnesium - which is probably low, anyway, as most people are deficient in magnesium. Taking vit d increases the absorption of calcium from food, so vit K2 makes sure the extra calcium gets into the teeth and bones, and doesn't build up in the soft tissues, causing problems.

My B12 level is 98.3 pmol/L. When I started supplementing my diet it was only at 44.1 pmol/L so the supplements seem to be working.

Are you also taking a B complex? All the Bs work together, so need to be kept balanced.

My ferritin levels are currently at 66.6 ug/L and have remained at roughly this level for the last six months despite taking 14mcg iron per day for some months now.

Are you taking vit C with your iron to help absorption? 14 mcg iron would be a miniscule dose. I think you must mean 14 mg. But I don't think 14 mg iron is a particularly high dose, either.

I have terrible indigestion problems so thanks for the suggestion of magnesium carbonate.

As I said, hypos usually have low stomach acid, which would cause terrible indigestion problems. Read this article and try the home test at the end:

healthygut.com/articles/3-t...

TiredDad profile image
TiredDad in reply to greygoose

Thanks very much for explaining. Obviously I'm still learning how all of this works. So, if my T4 is so high that a lot of it is being converted into rT3, should I ask to be prescribed T3 and/or improve my vitamin levels to boost conversion of T4 into T3?

In answer to your question about magnesium and K2-MK7, I’ve been taking magnesium but not K2-MK7. The magnesium I’ve been taking is magnesium oxide so perhaps a change to magnesium carbonate will help. I’m also going to start on K2-MK7. Can you recommend a good K2-MK7 or magnesium carbonate tablet?

I haven’t been taking a B complex but will start doing so. Thanks.

Yes, I’ve been taking vit C with my iron. I’m taking 14mg of iron because it’s the most you can buy without prescription and my doctor doesn’t believe I need more. I’ll start taking two tablets at a time and see if it helps.

greygoose profile image
greygoose in reply to TiredDad

So, if my T4 is so high that a lot of it is being converted into rT3, should I ask to be prescribed T3 and/or improve my vitamin levels to boost conversion of T4 into T3?

It is necessary, for all sorts of reasons, to improve your nutrient levels. But, that may, or may not, help your conversion.

You could, of course, ask to be prescribed T3. But, that is not as easy as it sounds. Are you in the UK?

Magnesium oxide certainly isn't a good idea. It's not well absorbed. As for recommending a good brand of K2 and magnesium, if you look on Amazon, you will find many good brands. Everyone has their own favourite.

But, for a B complex, I would recommend Igennus. It contains methylcobalamin and methylfolate, which are the best absorbed forms.

How much vit C have you been taking?

TiredDad profile image
TiredDad in reply to greygoose

I'm in the UK. In my local area some people do apparently get T3 on the NHS. I've been referred to an endocrinologist by my GP but I can imagine it could take ages due to everything being shut down to all but critical patients. I'm going to look for a private endocrinologist near me in the hope they can sort me out. I got a list from thyroid UK but it doesn't contain any near where I live (Lancaster).

I've been taking 500mg of vitamin C per day.

After a quick read online it doesn't look like magnesium carbonate is for me due to it being a laxative. Maybe magnesium malate would be better as it may not be so much of a laxative.

greygoose profile image
greygoose in reply to TiredDad

Magnesium carbonate is not a laxative, that's magnesium citrate:

Magnesium citrate: mild laxative, best for constipation.

Magnesium taurate: best for cardiovascular health.

Magnesium malate: best for fatigue – helps make ATP energy.

Magnesium glycinate: most bioavailable and absorbable form, non-laxative.

Magnesium chloride: for detoxing the cells and tissues, aids kidney function and can boost a sluggish metabolism.

Magnesium carbonate: good for people suffering with indigestion and acid reflux as it contains antacid properties.

Worst forms of magnesium: oxide, sulphate, glutamate and aspartate.

500 mg vit C is quite a small dose. I sometimes take 5000 mg.

Karenk13 profile image
Karenk13

Hi TiredDad sorry you feel so bad still . It could be to do with the vitamin levels. Low Iron and Low B12 can leave you feeling very fatigued and feeling generally unwell. Low Vitamin D can cause a host of problems like depression and low immune system function.

Be sure to keep a 4 hour gap between any Iron and your Thytoid medication as it can affect absorbtion.

I know personally I was feeling very sick and was convinced I needed a dose increase but it was down to my low Vitamin D and Iron level once we resolved that I felt better and that was without changing my T4 dose. Most people in Uk and ireland should take Vitamin D year round as we do not get enough sunlight here to absorb.

TiredDad profile image
TiredDad in reply to Karenk13

Thanks very much. I think my levels of iron, B12 and Vitamin D are okay (see above) but the community here may think otherwise.

Zazbag profile image
Zazbag in reply to TiredDad

They're in range but they're sub-optimal.

Zazbag profile image
Zazbag in reply to TiredDad

Also I think I might be able to help explain what greygoose meant.

I believe she's saying that when your T4 level gets too high your body starts converting T4 to reverse T3, rather than T3, resulting in a lower concentration of T3. Also reverse T3 binds to the cell receptors just like T3 does and by doing so it stops T3 from binding, which makes the issue even worse. Since T3 is the active thyroid hormone this leads to worsening symptoms. I hope that helps and greygoose please correct me if I have misunderstood.

Karenk13 profile image
Karenk13 in reply to TiredDad

Thanks I just seen that comment they aren't actually bad mine were in the toilet lol which is why I was feeling so bad.

I think alot of things come into play for each individual and sometimes there is no rhyme or reason for the fluctuations.

Has your doctor been amending your dosage between these blood tests or has the dosage remained constant?

TiredDad profile image
TiredDad in reply to Karenk13

The GP increased my dose by 25mcg after each test until the last test (I'm now on 150mcg). I'm yet to discuss the latest results with the GP and hope he doesn't try to reduce my dose due to the T4 being high.

Zazbag profile image
Zazbag

If it's any help, I use the following supplements with good results:

B12 (methylcobalamin):

amazon.co.uk/dp/B002FJW3ZY/...

Methylfolate:

amazon.co.uk/dp/B01706V0UU/...

High dose iron (ferrous fumarate):

easymedshealth.com/products...

Vitamin D2 + K3:

amazon.co.uk/dp/B00S53OLXQ/...

You should get all these tested first before you supplement them but if you need any of them then these products should be easily absorbed.

TiredDad profile image
TiredDad in reply to Zazbag

Thanks, that's really helpful. Last time I got mine from Simply Supplements. They seemed quite expensive but I hoped that meant they were okay quality.

tattybogle profile image
tattybogle

Hi TiredDad, just to say howdy neighbour, i'm also in M Bay CCG.

Just looked at your post from a couple of months ago, and i can see why your blood results have confused your Gp . You are not alone, mine don't behave 'properly' either.

I agree with you, your TSH does move a long way, and not always in the expected direction. Obviously your hypothalamus / pituitary haven't read the textbook !

Out of interest , do your nhs tests use these laboratory reference ranges for TSH/FT4 ?

TSH[0.57-3.6]

FT4 [7.9-14]

( I asked because mine do , and they are narrower ranges than most others .I had an interesting chat on here with diogenes a couple of weeks ago , and his opinion on these test machines / ranges was rather scathing. Not suggesting anything wrong with your results, just interested how many other people getting tested using these )

I have a similar issue with high FT4/low tsh getting in the way of nhs T3 access, but my TSH doesn't do anything as interesting as yours, so i can see why you've been referred.

Also , if you don't mind me asking, have your bloodshot eyes stopped ? I get that sometimes,and have wondered if it related to thyroid levels ,but not found a clear pattern.

TiredDad profile image
TiredDad

Hi neighbour. What lovely weather we're having! It makes my sensitivity to cold a lot easier to cope with.

I'm afraid I'm not totally sure of the guideline reference ranges they use locally. I've been getting mine done privately via the post recently because of not wanting to visit the GP surgery during the pandemic. Medichecks (a company who do tests in the post) have different ranges from my GP because I remember my GP commenting that my T4 was getting too high, while he noticed Medichecks said it was within range.

Thankfully, my bloodshot eyes have stopped. I had them when my thyroid symptoms were at their very worst in winter. My unsubstantiated theory is they were a sign of an autoimmune attack on my thyroid and my levo dose being too low.

Caper12 profile image
Caper12

I have the same issue with T4- It has never been low. I read about combining dosages- Have you tried doing that?

TiredDad profile image
TiredDad in reply to Caper12

Hi. Do you mean combining doses of T4 with T3? My endocrinologist thinks I may need to but he first wants me to have an endoscopy to check if I have Coeliac disease (blood test came back negative for it). It's been a long wait for the endoscopy due to Covid-19 and nearly two years of being ill. So much wasted time!

I'd like to have some T3 ready to go in case my endoscopy shows no Coeliac. Could anyone tell me where I can source it reliably? My vitamin levels are all good but I still seem to have a problem converting T4 into T3.

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