Little long - TSH swinging up and down, Dr says... - Thyroid UK

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Little long - TSH swinging up and down, Dr says 'wait and see' but we need IVF!

sarahjels profile image
sarahjels

Hi there

We have been trying to conceive since March 2016 - Fell pregnant in June 2017 but unfortunately had a missed miscarriage at 12 weeks.

We have been unable to conceive since despite clomid. Last year my fertility consultant noted my TSH was 2.5 and said it was a little high - Wrote to my GP saying he was considering ‘a course of levothyroxin.’ That didn’t happen however, I assume because my TSH was still in standard range.

Earlier this year in June I asked my doctor to run standard fertility tests as encouraged by my acupuncturist and needed by our IVF clinic prior to starting IVF - Including thyroid. My results were:

TSH 0.02

T3 7.9

T4 - 32

And i was referred to an endo with no medication, as my TSH had previously been more normal.

I finally saw that endo at Milton Keynes hospital in November 2019 - He said I had a diffuse goiter and repeated my tests and said he’d call me in 2 weeks.

He didn’t call, but a letter showed up at home that has been sent to my GP saying:

My TSH is 3.76, and T4 is 11.1. He said my TPO antibodies are +ve but TRABS are -ve, and that he is simply going to ‘wait and watch’ as TFT’s are back to normal.

I’m not entirely sure I follow what this exactly means, and I’ve thus far been unable to get hold of him or the patient pathway co-ordinator.

I’ve called our IVF clinic and they require TSH to be between 0.4-2.5, and it appears I’m swinging between the two.

I just feel a little abandoned with a ‘wait and watch’ policy when nobody has explained what is going on or why my thyroid is swinging all over the place. I’m still having symptoms etc too and gaining weight at a very depressing rate despite having a personal trainer and watching the calories!

Hoping you can point me in the right direction,

33 Replies

were all these tests taken at same time of day?

best time to see your highest TSH is by 9am, and on empty stomach.

but your TSH may be varying due to other factors (someone clever ll be along in a min)

Did the endo realise that this is prep for ivf?

sarahjels profile image
sarahjels in reply to Wetsuiter

Yes it was explained to him at length. Hmm!!

TSH taken in morning both times, one at beginning and one at end of menstrual cycle however!

SlowDragon profile image
SlowDragonAdministrator

So your high TPO antibodies confirm you have autoimmune thyroid disease also called Hashimoto's

For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also EXTREMELY important to test vitamin D, folate, ferritin and B12

Low vitamin levels are extremely common, especially as you have autoimmune thyroid disease (Hashimoto's) diagnosed by raised Thyroid antibodies

Ask GP to test vitamin levels

Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .

This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)

Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies or all vitamins

Cheapest option for just TSH, FT4 and FT3 £29 (via NHS private service )

monitormyhealth.org.uk/thyr...

thyroiduk.org.uk/tuk/testin...

For thyroid including antibodies and vitamins

Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have special offers, Medichecks usually have offers on Thursdays, Blue Horizon its more random

TTC

verywellhealth.com/infertil...

Pregnancy guidelines

thyroiduk.org.uk/tuk/about_...

gp-update.co.uk/files/docs/...

thyroiduk.org.uk/tuk/guidel...

See pages 7&8

btf-thyroid.org/Handlers/Do...

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

Low vitamin levels affect Thyroid hormone

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

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

chriskresser.com/the-gluten...

amymyersmd.com/2018/04/3-re...

thyroidpharmacist.com/artic...

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

restartmed.com/hashimotos-g...

Come back with new post once you get vitamin results and ranges

sarahjels profile image
sarahjels in reply to SlowDragon

Thank you so much for all this.

So, what do I do? I'm shocked the endo didn't even do a full profile by what you're saying, and effectively has signed me off. I'm due an ultrasound tomorrow though so we shall see what they say. The endo did confirm I had a diffuse goitre.

Also EXTREMELY important to test vitamin D, folate, ferritin and B12

Results as of July 2019:

Vitamin D - (Not done, but I've been flagged as deficient in this a few years ago).

Folate - 17.5 (I've been taking myoinositol which includes folic acid for over a year)

Ferritin - 65

B12 - 391

My Calcium was on the lower side at 2.29, with adjusted calcium at 2.17.

In July I had TSH, FT4 and FT3 done (in the morning), but don't think I've had TPO and TG thyroid, how would that show on my blood results? The endo, who I waited 4-5 months to see, just repeated TSH and FT4, very early in the morning...

I know people have mentioned links to changes in TSH and menstrual cycle - For the July blood draw I had just finished a period so was on day 3 of a cycle, In November I was just about to start a period, so day 31 of my cycle. I will say my cycles have been a bit shorter recently, often in the past they have been 40-50+ days, with the longest being 72.

I'm prepared to pay to check coeliac and the full thyroid profile as frankly I'm just desperate to start IVF, or at least be in a better position to try other fertility drugs again which might have better stance if I can get to the bottom of this thyroid stuff. I'm guessing I'd need TPO and TG particularly, what's the best one to purchase for that?

My acupuncturist had mentioned maybe trying gluten free as it is inflammatory and I have pcos also. She's suggested I have strong probiotics as well as a bunch of other bits. I'm got vitamin C, Omega oils, a multi vitamin without iodine, serrapeptose which is anti inflammatory, and some thyroid pills... I have been terrible at taking them recently but should probably start again!!?

sarahjels profile image
sarahjels in reply to sarahjels

Oh wait hold on, I'm rereading what you've said and what my endo has said, so he has tested TPO?

TSH 3.76,

T4 11.1

TPO Positive

TRABS Negative

.. Whats TRABS? Is the TPO + what indicates hashimotos? Why has he said wait and see then? Lost!

SlowDragon profile image
SlowDragonAdministrator in reply to sarahjels

What's the range on FT4?

FT4 Result looks low

TSH is too high when TTC.

TSH should be under 2.5 as maximum level

Low calcium is common when vitamin D is very low

NHS postal kit vitamin D test £29

vitamindtest.org.uk

High TPO antibodies confirms that you have autoimmune thyroid disease (Hashimoto's)

TRab antibodies- negative, means you don't have Graves' disease

(It is possible to have both Hashimoto's and Graves - complex to treat )

Gluten free diet helps or is essential for thousands of Hashimoto's patients.

You can get Coeliac test first

PCOS and Hashimoto's are often linked

verywellhealth.com/things-w...

thepcosnutritionist.com/res...

PCOS can respond to low sugar diet too

indi.ie/fact-sheets/fact-sh...

Come back with new post once you get results

sarahjels profile image
sarahjels in reply to SlowDragon

Not sure about range. The letter to my Gp was appended to add: "Her TFT's are normal with T4 11.1 and TSH 3.76. Her TPO antibodies are positive but TRABs are negative. I shall advise a wait and watch police at the moment as her TFT's are back to normal."

I mean, really?

Will look into bloods after my ultrasound tomorrow, thank you!

Lesleyg13 profile image
Lesleyg13 in reply to sarahjels

A couple of YouTube videos on PCOS:

youtu.be/N2KD-nTiJ14

youtu.be/TaouRuqqEfY

Lesleyg13 profile image
Lesleyg13 in reply to sarahjels

Well from the TSH monthly cycle graphs I mentioned it looks like your TSH could well be a lot higher mid cycle, compared to when you were tested at days 3 and 31. The readings in those two examples went from around 2 to 4.5 and 5, which I would hope would be high enough for them to medicate you.

ncbi.nlm.nih.gov/pmc/articl...

sarahjels profile image
sarahjels in reply to SlowDragon

Thriva have a test with the following which sounds good???

'The Thriva Comprehensive Thyroid Test measures: TSH, T4, TT4, T3, TPO and TgAb. It also analyses vitamin D, vitamin B9 (folate), vitamin B12 and ferritin.'

Not sure what I'd do with the information or why the endo didn't test this stuff. I'm going to get a hold of him and ask, but not sure what I'd do with his answer as he justifies it! Wish I understood all of this :(

SlowDragon profile image
SlowDragonAdministrator in reply to sarahjels

Yes people on here do use Thriva

Medichecks is more popular. Offers usually run on Thursdays

Only do blood test on a Monday, Tuesday or Wednesday

sarahjels profile image
sarahjels in reply to SlowDragon

Had my ultrasound today - they said it’s all normal in size, no lumps, but increased vascular supply which would suggest thyroid toxicosis? He said that supports what the endo said but of course I’ve no idea what the endo said.

So, hyper then? But recent bloods show hashimotos? And most of my symptoms are hypo. So confused :(

SlowDragon profile image
SlowDragonAdministrator in reply to sarahjels

Thyrotoxoicosis is autoimmune thyroid disease also called Hashimoto's...which is hypothyroid

Read up about Hashimoto's here

Thyroid Pharmacist website is brilliant. She recently had a baby. Lots of info on pregnancy with Hashimoto's

thyroidpharmacist.com/artic...

thyroidpharmacist.com/artic...

thyroidpharmacist.com/artic...

Gluten

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

thyroidpharmacist.com/artic...

chriskresser.com/the-gluten...

amymyersmd.com/2018/04/3-re...

sarahjels profile image
sarahjels in reply to SlowDragon

So, had a blood test on Monday and a phone call with my endo on Wednesday. He read out my results and said it was much the same and theres no need for treatment. I pushed and said my TSH needs to be under 2.5 for IVF and he said he'd write me up for 25mg of Levothyroxine.

Turns out, he read the results out from November, as the repeat bloods hadn't even come back yet. GP surgery called me today and read some of them over the phone (receptionist didn't really understand)

December:

TSH 2.87

T4 13

(said she couldn't see a T3, was only the receptionist)

Vit D - wasn't done 'previously reported - yeah 2 years ago)

Vit B12 470

Calcium 2.37

Serum phosphate 0.95

Something Alkaline (?) 81

Albumin (?) 45

Not sure what to think , but she's going to post them to me!

SlowDragon profile image
SlowDragonAdministrator in reply to sarahjels

So you need to get FULL Thyroid and vitamin testing privately

You know you have Hashimoto's from high TPO antibodies result

FT4 looks low (need range)

TsH slightly too high for pregnancy

No FT3

No folate

No ferritin

No vitamin D

For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also EXTREMELY important to test vitamin D, folate, ferritin and B12

Low vitamin levels are extremely common, especially if you have autoimmune thyroid disease (Hashimoto's) diagnosed by raised Thyroid antibodies

You may need to get full Thyroid testing privately as NHS refuses to test TG antibodies if TPO antibodies are negative

Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .

This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)

Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies

thyroiduk.org.uk/tuk/testin...

For thyroid including antibodies and vitamins

Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have special offers, Medichecks usually have offers on Thursdays, Blue Horizon its more random

How much vitamin D are you supplementing?

Have you done coeliac blood test yet (buy online)

Going strictly gluten free helps thousands of Hashimoto's patients

sarahjels profile image
sarahjels in reply to SlowDragon

Hi there,

I was hoping to but unfortunately I'm now no longer in a position to pay for anything - Not until about May when business picks up. Its got pretty dire.

I did ask for Vit B12 and do have a result for that, Vitamin D they requested but didn't do, and they asked for folate and ferritin too. Hopefully I'll see all of those when the thing comes back. Consultant denies I have hashimotos at all.

Planning gluten free, for sure. Tried but its quite difficult but definitely getting there.

SlowDragon profile image
SlowDragonAdministrator in reply to sarahjels

Uk medics call it autoimmune thyroid disease, but it is Hashimoto's

GP should test vitamin levels

ncbi.nlm.nih.gov/pubmed/286...

Vitamin D deficiency is frequent in Hashimoto's thyroiditis and treatment of patients with this condition with Vitamin D may slow down the course of development of hypothyroidism and also decrease cardiovascular risks in these patients. Vitamin D measurement and replacement may be critical in these patients.

endocrine-abstracts.org/ea/...

Evidence of a link between increased level of antithyroid antibodies in hypothyroid patients with HT and 25OHD3 deficiency may suggest that this group is particularly prone to the vitamin D deficiency and can benefit from its alignment.

ncbi.nlm.nih.gov/pubmed/186...

There is a high (approx 40%) prevalence of B12 deficiency in hypothyroid patients. Traditional symptoms are not a good guide to determining presence of B12 deficiency. Screening for vitamin B12 levels should be undertaken in all hypothyroid patients, irrespective of their thyroid antibody status. Replacement of B12 leads to improvement in symptoms, although a placebo effect cannot be excluded, as a number of patients without B12 deficiency also appeared to respond to B12, administration.

Folate supplements can help lower homocysteine

ncbi.nlm.nih.gov/pmc/articl...

Levothyroxine can decrease serum homocysteine level partly; still its combination with folic acid empowers the effect. Combination therapy declines serum homocysteine level more successfully.

Low ferritin frequent in hypothyroidism

endocrineweb.com/profession...

Obviously good folate and B12 levels essential before TTC

sarahjels profile image
sarahjels in reply to SlowDragon

I know my folate is fine - I've been taking myoinositol for over a year - with folate!

My B12 was 470, that ok? I do take a multivitamin that has Vit D in too as I have shown deficient in past, so not sure why they won't retest!

SlowDragon profile image
SlowDragonAdministrator in reply to sarahjels

When hypo, especially with Hashimoto's we are almost always low in vitamin D, folate, B12 and ferritin

ncbi.nlm.nih.gov/pubmed/286...

Vitamin D deficiency is frequent in Hashimoto's thyroiditis and treatment of patients with this condition with Vitamin D may slow down the course of development of hypothyroidism and also decrease cardiovascular risks in these patients. Vitamin D measurement and replacement may be critical in these patients.

endocrine-abstracts.org/ea/...

Evidence of a link between increased level of antithyroid antibodies in hypothyroid patients with HT and 25OHD3 deficiency may suggest that this group is particularly prone to the vitamin D deficiency and can benefit from its alignment.

You want vitamin D at least over 75nmol and around 100nmol may be better

Test vitamin D here if not doing full Thyroid and vitamin testing via Medichecks or Blue Horizon

NHS postal kit £29

vitamindtest.org.uk

Come back with new post once you get results

I'm sorry you're having such a difficult time.

As Slowdragon says, high antibodies mean Hashimotos, and unfortunately Hashimotos can cause miscarriage & make it difficult to conceive.

Izabella Wentz is a very well respected voice in the Hashimotos community - she's a pharmacist who developed the condition herself, and did a lot of digging into how people improve their symptoms in addition to medication. My understanding is that it also prevented her from conceiving, but she now has a healthy baby girl, so I would very much recommend reading some of her blog posts & perhaps working through her Hashimotos protocol.

thyroidpharmacist.com/artic...

A couple of things I have learned through experience - TSH can be effected by viruses such as a cold, so don’t have bloods taken during this time. My daughter was queery Hypothyroid following a routing blood test (she is a coeliac). 2 months later she was back to normal. A year later, the same again.

My sister had 4 miscarriages over 9 years and 3 full term pregnancies. Not long before her last pregnancy she was diagnosed with hypothyroidism. Apart from the miscarriages she showed no hypo symptoms. I’m sure she had been hypo for many years.

I know it must be devastating for you not being able to get pregnant, but don’t rush it until your thyroid is under control as a miscarriage is far more likely, or your child could be born with developmental delays.

Looks as though you have autoimmune thyroid disease (aka Hashimotos) which makes your results swing between over and underactive. It's not true hyper thyroid as the high hormone results are caused by destroyed thyroid tissue dumping hormones into the blood stream (not by your thyroid producing too many hormones all the time). You will gradually become more hypo, but NHS is unlikely to treat until you have over range TSH, low FT4 and high antibodies. I don't know whether the IVF clinic can influence your GP or give you a private prescription

I wish I could get my head around the first two sentences, haha! My GP was concerned, sent me to an endocrinologist who only repeated TSH and T4 and has failed to return my calls or call me 2 weeks after the appointment as he said he would, so I don't know. He said in his letter to the GP (wasn't even my GP but another one in the practice), that he is just going to wait and see. Not sure how he is intending to wait and see but hey.

It has been mentioned on here recently that for menstruating women TSH is much higher mid cycle, so best to get yours tested at that time if you can.

Here’s the original post, it was in jimh111's reply:

healthunlocked.com/thyroidu...

"See the bottom two graphs in this ncbi.nlm.nih.gov/pmc/articl... ."

There’s a lot of great free advice, articles and videos, on Diet Doctor about improving fertility with a low carb lifestyle.

It's at least something you could both try for yourselves while waiting for the medics to get their acts together?!

dietdoctor.com/?s=fertility

sarahjels profile image
sarahjels in reply to Lesleyg13

I have to be honest, I never had any problems until after a keto diet. I’m a little wary about all of the low carb advice. I did a VLCD and keto for a year, and after stopping all of the problems started - I really feel it destroyed me. I’m relatively low carb anyway because I just don’t care for them, so I don’t know.

Lesleyg13 profile image
Lesleyg13 in reply to sarahjels

Personally I would definitely avoid low calorie or low fat eating in your circumstances. If you concentrate on eating mainly nutritiously dense, real food you will be giving your body the nutrients it needs. If you tried to eat low calorie at this time your body will not want to spend/waste the energy it does have coming in on fertility, it will use it for the bare minimum needs of keeping you alive.

I know you're not suggesting eating low calorie at the moment. Maybe a good compromise would be moderate carbs right now, concentrating on the most nutritious foods?

I had 3 very early miscarriages in my 30s, so I can totally understand what you're going through, I really know how painful it can be.

Absolutely vital to get the testing as detailed above by slowdragon done, which I'm sure you will, they are all extremely important for your fertility. Has your GP tested any of them? If not you could ask them first. Many of us with hypothyroidism are deficient in one or more so that could well be playing a part with you too.

Best of luck!

sarahjels profile image
sarahjels in reply to Lesleyg13

Oh I haven't done it for over two years and won't do it again, just mean since I stopped is when all of my problems started. Right now we're doing exactly as you mentioned, eating a good balanced diet, and seeing a personal trainer too :)

We've been trying for 4 years, had an early miscarriage, but the missed miscarriage is what threw me as it already felt like a miracle. Not been able to even fall pregnant since. Sorry you went through that, its honestly the worst ever.

I've had a lot of the above yes, it does seem that I haven't had a full check really - No idea was TPO + and TRAB - means?! But I'm deficient in a lot of vitamins. The Endo wasn't bothered by that really.

Dear Sarahjels,

Your post really jumped out at me as I have thyroid-related fertility issues myself. You need to get your TSH down around or below 1. I didn't realise this and wasted a long time with a clinic with TSH 1.9 - 3.88 on day 3 so probably really a lot higher mid-cycle. Since I've gone on meds I'm back ovulating and my cycles have normalised. You have to do your own research about Hashimoto's I'm afraid as most doctors just don't know. I finally found one who seems to but the conventional approach is to sit back and watch until you're unwell enough to medicate. I second the advice about Izabella Wentz. You should look at her thyroid pharmacist website and even buy her book. Also have a look at Hypothyroid Mom, Dana Trentini. She miscarried due to mismanaged hypothyroidism but went on to have a successful pregnancy and gives great advice. Another person I strongly recommend for fertility issues is Julia Indichova. She defied conventional medicine at the time and conceived naturally with an FSH of 42 at 42. She does marvellous call circles which help to put you back in the driver's seat instead of surrendering everything to the fertility doctors who will suck away your hope and belief. She says it will all be ok in the end, and if it's not ok it's not the end! I had a chemical earlier this year and I strongly suspect it was down to undiagnosed hypothyroidism. I'd definitely hold off on the IVF until your thyroid levels are stable. Google these three women, they could all be game-changers for you. It might be worth getting your vitamins rechecked too as things could have changed. I was amazed how much my vitamin D went down last winter.

Best of luck!

sarahjels profile image
sarahjels in reply to Jasma

Will google those, thank you! IVF clinic literally refuses to help until TSH in below 2.5 anyway. It was 0.02 in July and we were told I'm hyperthyroid, now 3.7 with TPO positive, TRAb's negative (whatever this all means but sounds I'm now hypo). This endo seems to be doing a wait and watch too, so I have no idea where I stand really.

Also, the first bloods were taken day 3, second ones day 31 so maybe that says something? Again, no idea what. So confusing isn't it!

Going to look into those people for now.

SlowDragon profile image
SlowDragonAdministrator in reply to sarahjels

Hashimoto's frequently (almost always) starts with brief periods of hyperthyroid type bloods. Known as a Hashimoto's flare. As the thyroid is attacked and cells breakdown, excess thyroid hormones are released, so Thyroid levels can vary wildly

thyroidpharmacist.com/artic...

restartmed.com/hashimotos-s...

mayoclinic.org/diseases-con...

One other thing - I see you're working with a personal trainer. It might be wise to do a salivary cortisol test to check your adrenals as an abnormal adrenal profile would effect both thyroid and fertility. In the meantime I'd hold off on excessive cardio etc.

sarahjels profile image
sarahjels in reply to Jasma

If it makes any difference, we started with the personal trainer in about august/september, after the first blood results. Its all weight lifting etc anyway, but I will add this to the list of things to get tested!!

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