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Thyroid symptoms making me crazy
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Thyroid symptoms making me crazy

I had posted something before, but I'm still at a loss.  I have every hypothyroid symptom there is.  They are extreme and not mild.  Every time I touch my hair, a new handful comes out.  I am so afraid to touch it, I've just left it in a ponytail.  My eyebrows even come out when I touch them.  I'm having heart palpitations, shortness of breath, extreme leg pain, tiredness and fatigue, dry skin, coldness, rash... and many more.   My neck is really swollen and it seems to be getting bigger daily (I go for an ultrasound on the 11th).  The problem is my tsh came back normal.  One was 2.79 and the other was 3.74.    I had my doc run more tests and I have yet to prove what ones, but the nurse told me on the phone that my free t3 was 3.16 and my free t4 was 1.43.  I haven't seen the paper so I can't prove they were the "free" test, but that is what she said.  My doc won't give me an antibody test because I don't have a thyroid problem.  I have a couple questions.  Do these results mean anything?  They can be normal and I can have antibodies that would cause this, such as hashimotos?  I obviously have goiters or nodules or something for the swelling neck, so could these cause the symptoms I'm having, without changing my blood tests?  I would appreciate any advice since I am getting no where with my doc.  I am 28 and have no energy to even take care of my 22 month old son.  Also.. while pregnant, they told me I had really whacked out hormone problems.  I also had pregnancy induced hypertension and extreme edema.  I read this could be from a thyroid problem as well.  Finally.. I was a vegetarian that consumed a lot of soy for 15 years.  I have stopped now, but, does anybody have any ideas about all this.  The doc is making me feel that I am nuts, but I am seriously sick.  Sorry so long, I am just so scared that I will have to feel this way forever =(.

Thanks,

Danielle
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209384_tn?1231171906
Your TSH being 2.79 was on the high side, but 3.74 is definitely hypo.  The current standard is 0.3 to 3.0 and most thyroid specialist like to keep it somewhere around 1.0.  Mine is now at .93 and my new endocrinologist considers this normal.  My old endo and my PCP considered me normal if I was below 5.75 and at that I was a slug.  Do you go to a thyroid specialist or an endo who deals with a lot of thyroid problems?  If not you need to get to one right away before it gets any worse.  

The problem with this sometimes is that you need a referral to see an endo and drs, generally thinking they know all, don't like to do it.  So search for a good specialist in your area and MAKE your dr give you the referal!  You have the right attitude to keep fighting on this you are going more hypo through time apparently.  Hang in there and know that lots of us have had to fight this fight.  Some people on here have been fighting it for what seems a lifetime.  I was diagnosed in 2001 with Graves and have just now won the battle, but am still fighting the war.

Hang in there and know that this website is a really good place for you to come for advice.  I don't remember anymore about the levels on the T3 and T4 tests but lots of people on here do and will help you.  

Good luck and God Bless,

Dac
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173351_tn?1201217657
Hi Danielle,
Being a vegetarian there is a high possibility of iron deficiency - this could also be the major cause of fatigue and even hair loss .  It wouldn't hurt to take iron supplements even before you get a blood test for this - we lose blood every month, some heavy bleeders take iron during and after their menstrual cycle every month because of persistant anaemia.  Take iron tablets with Vitamin C as it aids absorbtion.  A glass of orange juice is okay with your tablet but a 250mg or 500mg chew tablet is much better.  It is a normal side effect for your stools to go dark brown or black while taking iron supps so don't worry.

While your thyroid could be contributing to things, it would be hard to say this with certainty if the results continue to be 'normal'.  The problem is that thyroid symptoms are pretty non-specific and are shared with many other disorders.    It is actually unusual for a person to only have one thing wrong with them believe it or not.

You probably have a number of things going on that are contributing to how you are feeling.  I imagine you don't get solid sleep with a 22 month old.  Are you stressed out - that'd be normal for a mom of a 22 month old too!  Are you taking care of yourself?  Are you having a balanced diet?  Drinking enough water?  Are you still breastfeeding?  I'm just wondering how drained your body could still be after giving birth and feeding your child.

Another deficiency which could cause these symptoms is Vitamin B12 defiency, otherwise known as Pernicious Anaemia.  Pernicious Anaemia is a autoimmune problem - if you have Graves or Hashimoto's you have a slightly higher chance of having another autoimmune disease such as Pernicious Anaemia.

In any case a Vitamin B complex formula  will do you good - it helps energy levels and the body when it is tired and under stress.  These vitamins are not stored by our body so we need to get enough out of our daily diets - bananas are a very good source.  When buying Vitamin B supplements try to get a super strength soluble/effervescent - it absorbs better as your body doesn't have to work to break it down.  

It may sound as if I don't blame your thyroid - It probably is contributing but I really think it is highly likely there is more than one thing going on here.

You probably know that it is very common for women to experience thyroid problems during or after pregnancy.    If they told you that you had whacked hormones when you were pregnant you should also enquire about having them tested now to make sure other stuff isn't going on.

If your ultrasound comes back showing enlargement you should keep pushing for that antibody test.  

Keep being proactive about your health - Best wishes
~Jen
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173351_tn?1201217657
P.S.

By the way if you did truly have Pernicious Anaemia then Vitamin B supplements would do you no good because the body lacks an enzyme called intrinsic factor which is required to absorb B vitamins from the gastrointestinal tract.

DLA has made an interesting point about the new guidelines about the TSH range,  Some endo's now use the new guidelines of 0.3 to 3.0.  - but you still need to go off the range given for normal in the lab where you had your blood test.

Different labs calibrate their machines differently and use different tests - different tests have different reference ranges depending on the methods used.  

This is also why it is helpful if you post the normal ranges when posting your labs for others to comment on.  

Just remember we are all entirely different - some people feel better with a TSH over 2 (even up to 4.0) while the majority are happy around 1.0
In the end what matters is how you are feeling - IF it is in fact your thyroid that is 100% responsible for your symptoms.


I totally agree you could see an endo - regarding all hormone problems - even the ones you had in pregnancy.  
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215461_tn?1331866365
Thanks for your comments.  I know the symptoms can be non-specific but seeing as my neck is sooo swollen I just have to think it is my thyroid.  Plus.. my levels weren't low, and I know there is a variance about what is normal as far as the thyroid is concerned.  My doc tested iron and that was fine.  My sodium levels were low, which made me wonder about iodine and maybe I have a goiter.  You can see the bumps swelling on my neck just by looking at them.  They seem to be getting bigger and I am actually starting to feel the pressure of them.  My doc said I have something in my neck, and she agrees that something is on my thyroid.  The ultrasound should make that more clear.  I just didn't know if I do have nodules of goiters if they could cause hypothyroid symptoms, but still keep my blood levels normal.  I thought I had read that you can have normal test, but still have hashimotos.  Does anyone know if that is true?  I definitely want her to test my thyroid antibodies, but she won't.  Maybe after the ultrasound she will.  It is just frustrating.  I am taking a good multivitamin with iron, and biotin for my hair.  I breastfed for 14 months, and my hair was falling out then so I just attributed it to that.  However.. now its been a long time, and the symptoms just keep getting worse and worse.  I have to think that what is in my neck is causing this.  I appreciate your answers.
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215461_tn?1331866365
I don't know the range for the free t3 and t4 because they just told me over the phone.  The tsh was normal up to 4.4 according to them and I was 3.79.  My doc didn't seem too concerned with that, when i told her that anything over 3 could be suspicious.  AHH.. who knew getting help would be so hard.
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173351_tn?1201217657
Hi Danielle,

Goitre (only ever used in singular) refers simply to enlargement of the thyroid gland.  

Enlargement may be difuse and homogenous - has the same consistency throughout.  

Alternatively enlargement may be heterogenous - mixed consistency, often containing nodules.  So, a goitre may or may not contain nodules.

Nodules:
"Simply put, thyroid nodules are lumps which commonly arise within an otherwise normal thyroid gland. Often these abnormal growths of thyroid tissue are located at the edge of the thyroid gland so they can be felt as a lump in the throat. "
http://www.endocrineweb.com/nodule.html

It is possible to have hashimoto's and still have normal blood levels - but usually this does not last and requires monitoring.  

It is possible to have goitre and still have normal blood levels.  

Whether a goitre with normal labs can cause symptoms is debatable.  Doctors will probably tell you NO - but many thyroid patients will swear black and blue YES.  Sorry don't mean to offend anyone by saying that.

Does anyone else in your extended family (on either side) have thyroid problems of any sort?  If so this may help the doctor decide to test antibodies.

In future ask the receptionist for a photocopy of your lab results - after all "I just can't remember what he said"

It's great they tested iron - even better that they said it was normal.  
There is a urine test for iodine levels but it is not very popular with most doctors.  Do you eat much fish or seafood?  Make sure the table salt you use at home and in your cooking is iodised.  Sea salt may contain traces of iodine but is not considered iodised unless iodine has been added.  

Still consider taking a vitamin B supplement even just to help with your symptoms.  It can't hurt you and it is natural (you just pee out any excess that your body can't absorb which is why your pee goes bright yellow when you take it.  All those energy drinks on the market which are filled with caffiene and guarana also often have B vitamins in them too.

Cheers!
~Jen
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215461_tn?1331866365
Thanks Jen,

My grandma has hypothyroidism and my mom and sister both have rheumatoid arthritis.  I'm not sure about my dad's side, but they were unhealthy so its not out of the question ha.  My neck was more swollen on the right side, and I can see it, but it is swollen everywhere.  I just know I have these symptoms.  Hopefully the ultrasound will lead them to testing my antibodies.  I'm just scared about what is in my neck as well.  I get this strange feeling my doc thinks I'm making up these symptoms, but I'm not.  My neck seems to get worse on some days.  Does this sound more like nodules or a goitre?  Also, as it gets bigger, I seem to feel worse.  One day it seemed to be not as swollen and I felt the best that I had in weeks.  

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173351_tn?1201217657

You probably know that some thyroid disorders run in families - particularly the autoimmune types like Graves disease and Hashimoto's.  You also probably know that Rheumatoid arthritis is also an autoimmune condition.  

Have you made your doctor aware of these facts and pointed out the possibility of an autoimmune connection?  Given that there are autoimmune problems in your family you really should have the tests for Pernicious Anaemia if thyroid antibodies are positive - as throid antibodies have also been assoicated with gastric parietal cell antibodies found in individuals with pernicious anaemia.

How quickly has the swelling come up?  Has it happened gradually over months to years?  Have a look back in photos - you might be surprised.  Probably goitre.

If it has come up in a shorter period of time such as weeks to months - the swelling could be caused by inflammation (thyroiditis) potentially caused by a viral or bacterial infection.  Thyroiditis usually resolves itself within 12 months and does not require treatment.  But it is more likely to be goitre.

As said before a goitre may (heterogenous) or may not (homogenous) contain nodules - the only sure way to tell is by ultrasound.  Keep an ear out for those two words as they do the scan.  

The strange feelings you are having in your neck are common with goitre - as the enlarged gland is causing compression and pressure on other structures in your neck.

Goitre is not usually treated - only observed until it causes compresion symptoms such as dizzyness, changes in voice, compression (strangulation) or deviation of structures such as your esophagus or trachea.  Then surgical intervention is required.  Been there done that.  Not especially fun.  And taking hormones for the rest of your life doesn't fix everything either.

So even though you may have a goitre - remember your symptoms could even still have some other cause.  Even if they gave you thyroid hormone it wouldn't do you much good if your symptoms were caused by something else would it?  But they won't give you thyroid hormone unless you are hypothyroid or unless you have a thyroidectomy.

Hope that makes sense.
Cheers
~Jen
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215461_tn?1331866365
Yes it does very much so.  Thanks for all the info, I really appreciate it.  I did tell my doc about the history in my family so she is pretty much testing me for EVERYTHING.  After the ultrasound I have an appointment with her so I will go from there.  I never even noticed my neck until I went to the doc for my symptoms.  She told me it was swollen.  This was about a month ago.  Since then, it has been getting bigger.  I'm not sure if this has been here for a long time or just now.  I will note that all these symptoms came about after having my son and while breastfeeding, so I'm not sure if this added to something or not.  I guess I just have to be patient.  HMM that will suck if my neck has to stay like this because it really is getting very uncomfortable.  I will wait though, and at least that will give me an idea of where to go.  While breastfeeding I started having the heart palpitations.  I did lose some hair, but it stopped.  It recently started again, but this time worse than ever.  This is right around the time that my neck was noticed so I'm not sure.  I did look in pics before my docs appointment and it was swollen.  It seems right before then I did notice something odd in that area, but never pin-pointed it.  Ha sad to say I didn't know the thyroid was there so I never thought about checking.  I really do appreciate your help.  It's nice to hear from people who know about it, and have went through it.  May God Bless us all!!
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215461_tn?1331866365
Thanks guys, I will.  My doc is testing me for rheumatoid arthritis too since I have such a strong history of it.  I'm going to get this ultrasound and then make her send me to an endocrinologist. I just KNOW whatever is there is making me feel this way.  I guess its hard to prove, but I KNOW it is.  I have to trust my instincts on this.  Some lady on another post is basically calling me nuts, and saying that I'm not sick, and that 3.74 is a great level for tsh.  Actually, I've read about many endocrinologists that will treat you for hypo at that level.  That is my next thought.  Although "normal' at my docs, my levels weren't not very good.  Some were borderline.  That again makes me suspect my thyroid isn't doing what it should.  I know it is this.  I just have to get more tests to prove it.  
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197575_tn?1215536224
Sorry I don't have your complete name but by the time I go and post, I forget!  I have a friend that has Hashi's and had a partial thyroidectomy.  After all of that, she was found to have a few other autoimmune diseases such as lupus and rheumatiod arthritis.  Her rheumalogist found everything.  Maybe try another specialist?  Just a thought.
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Avatar_f_tn
Hi Daniel,
I have a TSH of 3.71, (.98 - 5.74) and a T4 of .98 (.58 - 1.74), and I feel like ****! I have unrelenting fatigue, hair falling out, I got the middle part of my eyebrows with lots of hair and the outside sparsely populated with hair and the inner part stripped of all hair (I don't have to pluck my eyebrows any more -haha), weight gain, fluid gain, muscle cramps, aches and pains in my hands, wrists, feet, headaches, postmenopausal bleeding, high blood pressure, moody, feelings of sadness, very dry skin which is starting to spread all over and looking like alligator skin, hair is rough and coarse and dry and brittle and breaks off (And I thought falling out was bad until it starting breaking off too -UGH! My husband says I shed more than the dog!), forgetful, hard to concentrate, tinnitus - tired of hearing that sound in my ears), tics on my eyelids and eyes, shortness of breath, tightness in chest, yawn a lot, sensitive to light, dry and gritty eyes IN SPITE of regularly washing my eyelids which is supposed to decrease that, strange feelings in neck, lightheadedness, severe menstrual cramps when I am postmenopausal (I was tested and I am POSTmenopausal.), puffiness and swelling around eyes and face and spreading throughout my body (heard this makes drawing blood difficult and that is what's happening. 2 different very good phlebotomists couldn't draw my blood in the regular places because of it), restless, run down, sluggish, lethargic or someone said feeling like a slug -- fits me well, exhausted, have had temperature go down to 95.8 - 96.2 and stay there for hours at a time (Doctor asked  if I had any stress - duh! that's stressful. The room temperature was 75 and I was under an electric blanket turned to maxiumum and I had shaking chills.) and more.

This is not in your head. You are not crazy!

Go with your gut feeling. Trust yourself. You know what is normal and what isn't.

BTW, there is a disease called Postpartum Thyroiditis. You can start with hyper T while pregnant and then develop hypo T after giving birth. Usually this can be resolved by taking correct dose of thyroid until the thyroid starts functioning again. Sometimes it becomes a permanent condition. However, your thyroid needs to be checked yearly if you are diagnosed with this particular disease because sometimes it comes back.

Do a search on the internet for it. A lot more info on the web then I explained here.


Back to what I said above, you know what is right and wrong with your body. Find someone who'll do some investigation to discover and treat your condition(s).
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215461_tn?1331866365
Thanks, your post sounded JUST LIKE ME.  I have ALL those symptoms.  IT's horrible to have all that, and a borderline level.  I did wonder if this was caused from pregnancy.  My heart palpitations started while I was breastfeeding.  It has gotten much worse since then.  My hair is FREAKING me out.  I lose about 400 hairs a day.  Some days I lose more.  It has gotten to the point where I just hide it in a ponytail and do not touch it.  I can barely find the energy to MOVE.  Seriously.. I feel like I can't breathe if i walk from one room to the next.  I yawn for air all the time.  I too am constantly freezing.  My hands turn blue.  It was 90 today and I had on long sleeves and pants.  I am so tired I want to sleep all day.   I actually think I could.  I am puffed up and retaining so much water.  When i was pregnant, my OB had never see someoen puff up as much as me.  I looked like the purple girl from charlie and the choc factory.  My skin is dry and peeling, and I have a weird rash.  Recently I have been getting HORRIBLE pains in my legs.  My neck is so enlarged that I can't hold it right and it bothers me.  I know this isn't normal, I'm just so scared that it could be something BAD in my neck.  This could have been there for a long time and I wouldn't even have known =(.  Did you get treated yet, or are you still suffering?

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Avatar_n_tn
...have you had any results ?..you need to get a saliva test for a real look at how your endocrine system is functioning...& go from there...you are really feeling awful girl...but you are young & should bounce back...please update.
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Avatar_n_tn
you've got great support and information from lots of people here.

pointing out two items:

#1. if your antibodies tests are off, other tests are not necessarily reliable.

antibody tests  are also known as: thyroid autoantibodies, antithyroid antibodies, antimicrosomal antibody, thyroid microsomal antibody, thyroperoxidase antibody, tpoab, anti-tpo, tbII, antithyroglobulin antibody, tgab, tsh receptor antibody, trab, thyroid stimulating immunoglobulin, tsi.

formal name: thyroid peroxidase antibody (tpoab), thyroglobulin antibody (tgab), and thyroid stimulating hormone receptor antibody (trab)

related tests: t3, t4, tsh, thyroglobulin

do a web search for the above group of tests and you will find what you need.


#2. if you are not satisfied with your physician, find a new one.

i made appointments with  four different docs. one quit with no notice; one insisted i came to office to be treated for something i didn't (perhaps my file got mixed up with someone else's???); and two are booking 6 months out.

my case is medically complicated. i found a new and trusted physician who is looking at my file. i hope to be getting some new endocrinologist names soon.

big city hospital docs might be of some help.

but, watch out! insurance companies have gotten sneaky. fees are based on diagnosis, service code and *location* of office. if the office is considered a branch of a hospital – even though located nowhere near a hospital – you may be subject to outpatient billing and a huge deductible. check with both billing office and insurance. Sometimes the “watch-out word” is listed as *ambulatory services.*

in the meanwhile, check online concerning any possible doctor’s reputation, education, experience, and legal happenings.

i am appalled that you have been through so much and your doc has not ordered an antibody test - tpo and tgab. my gyn - also a repro endocrinologist - suggested that i talk to my pcp about getting those two tests ordered. it was a good call.

good health to you…real soon.

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Avatar_f_tn
My situation is so very similar to many of the postings I have read.  My biggest pet peeve is when the MD's attribute all my problems to depression!  At this point, after seeing a psychiatrist and having been fired from my job as a pharmacist for being "sluggish" I admitted being depressed just to appease everyone.  I started with hyperthyroidism in 2004 (with 2 years of trying to convince multiple MD's that thyroid issues were in my family history); got too much radioactive iodine...dipped into a myxedema coma..and have not been normal since 2002.  I went from 120lb. to 150lb., feel sick ,fatigued, swollen lymph nodes, am constantly vomiting, vertigo on a daily basis..the list goes on and on.  Now that I lost another job (pharmacy of all professions..they are no more empatheic of a person's illness than other professions) I have no income, no health insurance....a single mother of three with a mortgage and college costs....going to a gun shop seems most desirable!
Doesn't anyone care?
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1895396_tn?1321308669
My mom had her thyroid removed, she had hashimoto's, and her test results seemed fine.  But, all the while, her thyroid was dying!  The doctor she was seeing thought my mom was just crazy.  She also has lupus and R.H. I have depression, but latley I've been feeling extra crazy and very irritable.  I have horrible fatuige too.  My thyroid test always seem fine, I think my doctor thinks I'm carzy.  I read about what you all have gone through and it gave me hope.  It makes me feel a little less crazy to know that other people know what I'm going through.  Why in the hell would people make this **** up?!  I need help from my doctor and he thinks I'm crazy, that's great, that's exactly what I need.  I want a life, I want to not feel like **** everyday, is that so much to ask for.  I can't get in to see an endo dr. till the end of January.  I hope he finds something.  That's my biggest fear, I'll go in to see the specialist and he'll end up telling me my thyroid is fine.  My neck hurts, I get constant headachs in the back of my scull and on the sides of my neck.  I get heart palpitations, I sweat like I'm sitting on the sun, I have horrible fatuige, and I have irritability that makes me fear I'm going to kill someone.  But, like I said it helps to know that others out there understand.  Thanks everyone, I wish you all luck.
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Avatar_m_tn
In your position I would not wait until end of January to see a doctor.  What you need is a good thyroid doctor.  Endos frequently don't fit that classification.  Many specialize in diabetes, not thyroid.  Many others have th "Immaculate TSH Belief" by which they think they can diagnose and medicate a hypo patient by TSH.  Wrong.  Others only use "Reference range Endocrinology", by which they will tell you that a thyroid test that falls anywhere within the reference range is adequate for you.  Wrong again.  The ranges are far too broad.  Many of our members, myself included, report that symptom relief for them required that Free T3 was adjusted into the upper part of its range and Free T4 adjusted to around the midpoint of its range.If you will tell us where you are located, perhaps some member can recommend a good thyroid doctor, based on personal experience.

Lacking that you should at least get your current doctor to do some additional testing, in prep for whichever doctor you go and see.  You should request testing for the biologically active thyroid hormones, Free T3 and Free T4 (not the same as Total T3 and Total T4), along with TSH.  Also, it would be a good idea to be tested for Vitamin D, B12, iron/ferritin, and RBC magnesium.  If the doctor resists and makes excuses as to why it is not necessary just insist on it and don't take no for an answer.

When results are available, please get a copy of the lab report and post results and their reference ranges shown on the lab report and members will be glad to help interpret and advise further.  
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Avatar_m_tn
could i aske for help if someone would reply .. my exgirlfriend was thyroid never took the meds at 14 her parents said she became evil .. at 21 we found out she was pregnant over the moon now we booked into docs for blood test and she was told to get on the thyroid tablets two weeks after taken the tablets she changedjust for record i never cheated or hit her only loved her  i would say to the point of nasty she was the most lovin girl before then two weeks after the nasty talk from her she left me cut all contact didnt want me at scan called me a stalker tried to be there for her and our baby but she wouldnt let me .. could the thyroid meds and hormoms do this ?
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