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My sister's thyroid problem

Discussion in 'Female Health & HRT' started by Sargovar, Apr 29, 2010.

  1. Sargovar

    Sargovar New Member

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    Hello everyone! It's been a while again. I have some questions that I'm hoping you fine, knowledgeable gentlemen could answer. It's about my sister: as some of you may remember, she has a background in body fitness which lead to a terrible bout of overtraining almost 2 years ago. Her body went ballistic on her; sky high cortisol, thyroid problems etc, and her psyche crashed in the wake of these endocrine problems. Good thing we managed to save her with the help of Hardasnails, her great therapist and a bunch of supplements. She was put on armour thyroid by her endocrinologist, and she's been on it and later a similar medication, "Thyroid" for a total of 1.5 years now. For the first year it all worked well and she made a tremendous recovery, even though she still had problems keeping the weight off. But for the last 6 months or so, things have been going downhill alarmingly fast.

    Maybe the Thyroid she's taking isn't on par with the old armour (which hasn't been available), but there must be more to it than that. She's been suffering from the following symptoms (it's as if her medication stopped working altogether):

    - Massive water retention.
    - Frequent infections, poor immune system.
    - Muscle weakness, loss of strength. Hardly enough strength and energy to exercise. Sometimes difficult to even walk.
    - Body temperature swings, from extreme cold to extreme heat.
    - Heart palpitations.
    - Weight gain, cellulite.
    - Lower back stiffness and pain (typical adrenal fatigue symptom?)
    - Pain in the soles of her feet.
    - Decreased quality of sleep, waking up in the early A.M.
    - Hard to get out of bed in the morning, general tiredness. Feels better towards the evening.
    - Easily out of breath, "air hunger".
    - Paleness. No longer tans like she used to.
    - Exercise causes headaches, sometimes even migraines.
    - Poor stress tolerance.
    - Amplified PMS-symptoms.
    - Decreased tolerance of temperature extremes.
    - Brain fog, sometimes difficult to focus gaze. Trouble concentrating.
    - Clumsiness, dropping things, dizziness.
    - Appetite swings (either nausea & no appetite or hard to stop eating).

    She is currently on 4 grains of Thyroid, and her latest thyroid labs, taken last december, are:
    Free T4 - 17-18 (11-21)
    Free T3 - 8.7 (4.0 - 6.0)
    TSH - immeasurably low (goes without saying)

    With those numbers it's clear to me that the medication stopped working and that the thyroid hormones aren't getting to her cells (when you consider all of her symptoms). Sadly her endocrinologist seems to have "stopped working" as well; his answer was along the lines of "these symptoms represent your body's personal characteristic and there's nothing I can do about them".
    She also ordered an adrenal saliva test kit recently and will do it soon.

    Her diet is relatively low carb & very low grain. Sources of fat include coconut oil, olive oil, dark cocoa, butter, eggs etc. Carbs come from fruit, berries and vegetables mainly. She also gets enough protein from different sources.

    How do we get her up and running again? She is nearly dysfunctional in her present state so something has to be done. Any help would be most welcome!
     
  2. CubbieBlue

    CubbieBlue New Member

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    Palpitations, weakness, above the range t3, and and a TSH so low you can't measure it?

    Major, major hyperthyroid symptoms. Back down the armour dosage.
     
  3. Sargovar

    Sargovar New Member

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    I agree that there are definite hyperthyroid symptoms in there, but a multitude of hypo ones, too. Note the massive water retention, weight gain, brain fog etc. It seems clear to me that the meds aren't getting through; or perhaps are being dumped into her cells at odd intervals, causing episodes of both hypo AND hyper symptoms - though the hypo ones dominate. Also, have to clarify that she's no longer on armour (since it hasn't been available) but on a similar med called Thyroid.
     
  4. Stalwart

    Stalwart New Member

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    Hello everyone! I'm Sargovar's sister. I have to add that I reduced my Thyroid dose from 4.5 G down to 4 G after those labs and all went even worse. Even more water retention, sleep disruptions, being out of breath, pain in the lower back and soles of the feet. I'm no better able to exercise or function normally. It has become increasingly difficult to get up in the morning and I often feel nauseous. I used to sleep quite well on 4.5 grains.

    TSH isn't worth mentioning when on dessicated thyroid, even my endocrinologist knows it. Free T3 is worth considering though, but be it over the range or in the range, I'm not feeling well at all. But the fact is that I used to feel quite alright on dessicated thyroid alone insipte of what the blood work said.

    I had so much water retention before and during the menstrual period that I couldn't recognize my own face. I couldn't walk either, my legs were so stiff and swollen.

    Now I feel cold and depressed most of the time. I go to work and school but sometimes the brain fog is so immense that I'm not being very productive.

    By the way, I take 5000 IU vitamin D, 500 mg magnesium, 2-3 g vitamin C, and usually 50-100 mg zinc every day and have been doing that for quite a while already. It has no effect on my susceptibility to infections.

    I'm almost 100 % sure this either adrenal fatigue or rT3 syndrome. Or what else can it be? I'm really tired of this state I'm in now. It's exactly what the doctors said - hyperthyroidism. But as we see, lowering the dose only made things worse... Well, hopefully someone has some better ideas than hyperthyroidism. If I lower my dose some more, I'm going to be in the mental hospital very soon!:sifone:That's how bad it gets :angry:

    Well, I stopepd exercising (besides walking) altogether for now. I'm taking it easy but it doesn't help very much.
     
  5. CubbieBlue

    CubbieBlue New Member

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    I think you should seek a second endocrinologist opinion.
     
  6. hardasnails1973

    hardasnails1973 Banned

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    She probably has exhausted her adrenals and can not keep up with the demand of the metabolism from thyroid so body is going into stall mood. Plus is she still in medical school it could be taken a toll on her. What is her current lifestyle and sleep patterns, workout schedule, and nutrition like. may be she may need to go back on sam-e for a little bit and back down on the thyroid meds which may be taxing adrenals
     
  7. Sargovar

    Sargovar New Member

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    An update on my sister's condition: it is catastrophic to say the least. She backed down on the thyroid (down to 2 grains), but the extreme fatigue, headache, nausea and bloating persisted. She traveled to Tansania as a part of her med school studies. The stressors of traveling aggravated her condition: immense muscle weakness, "floppiness" and nausea. She was diagnosed with severe hyponatreamia, 109 (135-155). This level would normally be lethal but doctors thought it had slowly developed, forcing her body to grow acclimated to the slowly worsening condition. At that point her thyroid function tests were within the range. Morning serum cortisol was measured twice; 116 and 93, with a range of 54-387. Such low figures indicate obvious adrenal exhaustion in a situation where a stressed body would normally respond by elevating cortisol levels.

    She started on hydrocortisone (10 mg in the morning) but after 4 hours she found out that her hypocortisol symptoms returned worse than before. She dosed every 4 hours and tried to maintain 30 mg per day. She had several adrenal crisis episodes with extreme nausea, shakiness, confusion, cold peripheral areas and low blood pressure (100/60) and she had to stress dose quite frequently. After a few days on hydrocortisone her sodium levels were back to normal.

    I'll write a more recent update in another message..
     
  8. Sargovar

    Sargovar New Member

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    Upon flying overseas and returning home from Africa, she had an infection and had to stress dose the HC for a few days, up to 40-60 mg. Over the weeks she increased her thyroid to 3 grains because her body temperatures were rather low. She is trying to taper off the higher stress doses and is currently down to 30 mgs of HC. Nausea, the shakes and dizziness return within a few hours. She doses 4-5 times a day (every 3-4 hours) as she suspects she is a fast metabolizer of HC. Could she benefit from Medrol for a more sustained release, and at what point should it be introduced? Her appetite is poor but she tries to eat small, balanced meals 5 times a day. Her hands and feet are often cold and sweaty. After starting hydrocortisone, she had a high random blood glucose measured twice: 12.5 and 10.9. Fasting blood glucose was always normal (4.8) and no further high random values were detected.

    She is also very pale and doesn't tan easily. Over the past year she had a lot of fluid retention and gained 50 lbs of weight (in her hips, thighs and face in particular). She had to quit exercising altogether because she can't walk 500 yards without coming to within an inch of crashing. During the past few months she has required a lot more sleep and her period has been irregular (usually quite sparse).

    She is currently taking 3 grams of vitamin C spread throughout the day, 2000 IU vitamin D (reduced from 5000 IU because of marginally elevated calcium), 500 mgs of magnesium, 50 mgs of zinc at bedtime and B-complex and probiotics. She tried to use HCL because she suspected the hydrocortisone wasn't being absorbed by her stomach. She has benefited from SAM-e before and has ordered some more.

    - She will measure her E2 and progesterone soon. If her progesterone is low, at what point should it be introduced and at what dose?
    - Prolactin was normal.
    - 2 months ago her ferritin was 71 (5-90) but she constantly presents with below range MCV. Haemoglobin was normal, 140 (115-160).
    - Furthermore, it seems she has developed thyroid antibodies (TPO above range).
    - She feels light-headed upon standing up, she craves salt and urinates quite frequently. Could this mean she might need florinef? However, after stress dosing for symptoms of adrenal crisis she has had blood pressure readings of 130/80.

    Any help would be much appreciated. She is not functional in her current state and local doctors are useless. :sad:
     
  9. Picton

    Picton Super Moderator Staff Member Super Moderator

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    Has anyone thought about excluding more classic possibilities of illness.... being in an African country for a period makes me think about conditions such as Malaria or other parasitic conditions which are notorious for vague long-term illness symptoms?

    UK celeb Cheryl Cole has recently been diagnosed with Malaria contracted in Africa... so it does happen, and there are many more conditions to choose from! :-(
     
  10. Stalwart

    Stalwart New Member

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    This is me Sargovar's sister. I have had these symptoms far before going to Africa. I took anti-malarials regularly before and during the trip and continued after coming back home. While I was in the hospital in Tanzania for 5 days, my malaria test and full blood picture was run many times a day just before leaving the country and it was always negative. The symptoms didn't really change after that. I had to go to the emergency room here at home too and they did cultures for infections and ran the blood picture again and no signs of viral, bacterial or parasitic infections. Only sign of infection I had as I came back was respiratory. It felt like I had a common cold and it was without fever. And now it has been subsiding.

    Just a moment ago I almost vomited again. My muscles are constantly very weak and I still get occasional fasciculations. I feel like I'm hit in the head with a hammer. I'm down to 30 mg HC now and trying to keep it at that for a while if possible. I don't know if I should spread the Thyroid out to have 3 doses instead of 2 or something. I am taking 3 G now. This situation is helpless. My neck feels swollen and stiff quite often. I am somewhat afraid of hypercortisolism due to the quite high dose of HC and also afraid of adrenal supression.

    I should be going back to school in 4 weeks and I highly doubt I will be ok by that time :( I'm taking one month off from work and everything now. I was able to remain calm in the most stressful times I experienced being alone in a developing country fighting against the insurance company and fighting my way to the hospital with the symptoms of my body totally failing. But now I'm all out of options what to do next. Everything has burned out and the optimism and fearlessness that have kept me going until now are disappearing little by little. It's like a rollercoaster and I don't feel like I'm in charge anymore. I'm afraid too many things were done too fast, but there was no other choice but to start the HC when constantly having deathly low sodium and no other explanation could be found by doctors and endocrinologists. I have survived a terrible burnout and overtraining syndrome before and I'm sure I will survive this if I get help. Alone, however, I am nothing and I will deteriorate. I don't know how long I will be able to stand this anymore... But somewhere has to be a solution no matter how complex and time-consuming it is.
     
    Last edited: Jul 31, 2010
  11. diesiel

    diesiel Active Member

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    Have you been bit by ticks? Any bullseye rashes?


    Huge red flags i see:

    Painfull soles of feet

    Stiff/swollen neck.


    These 2 are very common in lyme disease sufferers

    lots of 'unspecific symptoms' that aren't being abated by Thyroid/hydrocortisone.


    This sort of points to Lyme Disease with possiblity of co-infection. Please absolutely go to a good lyme expert doctor and rule this out, it's on the rise and becoming an epidemic.
     
  12. Stalwart

    Stalwart New Member

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    Hey, thanks for the advice. Everybody is talking about lymes here too. Lyme's is not endemic in Tanzania I think but in the coastal areas of Finland where I live there are a lot of cases. So in the presence of these symptoms if borrelia antibodies are detected one might have to reconsider this whole picture. I doubt it, but I will make sure I get tested at some point.

    I started taking Sam-e again today at 200 mg to begin with. The neck swelling, by the way, started to occur only after starting HC and after meddling with thyroid replacement doses. And the depression under the cartilage where the thyroid is located is hurting and sensitive to touch. But I don't know, I'm now just trying to bring the HC down to a more physiological dose to reasses what is going on. One change I made was divide the 3 grains into three doses. Today I took 1.5 grains upon waking, 1 grain at noon and I will take 1/2 grain in the early evening. The morning nausea I've been experiencing was a litlle less. Also, I don't know if it was the Sam-e or the lower Thyroid dose, but I was able to keep 4 hours between the first two HC doses of the day.

    The soles of my feet are not painful anymore, neither is the lower back. But I still get the muscle weakness and burning sensation during some times of the day, not 24/7 though. My hands and feet are cold and sweaty. And now I have a difficulties falling asleep, which I did not have before. I don't wake up during the night though.
     
  13. Stalwart

    Stalwart New Member

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    Things are quite bad now... :( I lowered HC down to 25 mg and first day was tolerable but today things are worse. My muscles are really weak and stiff and twitching and I suffer from constant headache. I don't get shakes and there is not a lot of nausea anymore, only in the midmorning. Symptoms always worsen aftern breakfast. Last night I slept quite ok. My face is bloated and my feet are cold. I don't know if I should've cut back on Thyroid while lowering HC. If nothing else comes to mind, I will go down to 2.75 G first and hold that for a while together with 25 mg HC. This is terrible and things don't seem to get any better... I'm clueless and can't see what will come out of this. I will get my results of progesterone, E2, dhea and electrolytes in one week... I hope I get more answers then.
     
  14. diesiel

    diesiel Active Member

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    This is very strange, i think if you really had the thyroid and cortisol issues they should have been fixed with thyroid+cortisol supplementation that you have already taken. I think it's almost time to start looking to 'less likely' causes of your problems... Any other 'strange' symptoms or findings?
     
  15. Stalwart

    Stalwart New Member

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    Well, one more thing to investigate again would probably be the blood sugar, which has always appeared normal in the fasting state but was twice elevated after meals when measured some weeks ago.

    Last night I had tremendous total body muscle weakness and terrible headache and it felt awful to go to sleep and I had to take a sleeping pill again. My mom told me later that my breath smelled funny! I asked her whether it smelled like acetone and she told me that yes, it smelled a bit fruity. Today she has not noticed that despite I had a lot of muscle weakness during the day. In the evening I've been feeling better and more active, but still not ok. I will ask for an oral glucose tolerance test. How nice would that be to have insulin resistance on top of everything :( *sigh*

    I also noticed I usually feel a bit worse after eating. At least after breakfast. I was thinking also to rule out glutein intolerance. Though my diet is already low on glutein for the majority of meals.

    Well, some of my symptoms do indicate some sort of cellular resistance to thyroid hormones which is probably one thing in this picture and I know there is more to cellular resistance than just thyroid hormones and cortisol. I still have dry skin, a toad-like hypothyroid face and many other symptoms which could also be due to this issue.

    By the way, does anyone here know about Ebsten Barr Virus getting chronic or being reactivated? I'm just thinking about all possible links and connections. I had a quite bad manifestation of mononucleosis some years ago.

    I'm holding HC at 25 mg and Thyroid at 2.5 grains until my next labs. Some of the odd symptoms also include on and off pain deep on both sides of the spine in the middle of the back. Like where the kidneys are located. I was also thinking of a possible subclinical urinary tract infection that could have spread to the upper parts of the urinary system, but it seems unlikely that I would have such an infection.

    Last but not least, I'm not seeing my period, they are late again. But it's impossible that I would be pregnant. I will probable be done the brain MRI at some point to rule out pituitary adenomas and other abnormalities. But the hyponaetremia was such a serious marker that the doctors have to do some further workup on those things too. By the way, I did Dr.Wilson's extensive adrenal fatigue questionnaire some time ago and scored 138 points (over 130 for women indicated severe AF)
     
  16. JanSz

    JanSz Well-Known Member

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    Is it possible for you to get more detailed testing.
    So far I have seen very few tests and a lots of guessing.

    One place to start would be to get my long list of tests.
    But that would only be a beginning of testing.

    You father is a doctor,
    considering that you are in rather bad shape
    he should drop any objections of why ordering tests
    that he may not be familiar with
    could hurt his medical honor and good standing among his peers.

    good luck.

    1 --------- Comprehensive Metabolic Panel w/EGFR
    2 --------- CBC w/ diff/PLT
    3 --------- VAP TM Cholesterol Test
    4 --------- Selenium, Whole Blood
    5 --------- Copper, serum
    6 --------- Zinc
    7 --------- Magnesium, serum
    8 --------- Magnesium, RBC
    9 --------- Potassium, RBC
    10 --------- C-Reactive Protein (CRP), Highly Sensitive, CSF
    11 --------- Fibrinogen
    12 --------- Homocysteine, cardio
    13 --------- Lipoprotein (A) Lp(A)
    14 --------- Iron and Iron Binding Capacity
    15 --------- Iron, Total
    16 --------- Ferritin
    17 --------- Transferrin
    18 --------- Folate, RBC & Hematocrit
    19 --------- Hemoglobin A1c
    20 --------- Hemoglobin, Plasma
    21 --------- VITAMIN A, E, B3, B12
    22 --------- Vitamin D, 25-Hydroxy
    23 --------- T3, Total
    24 --------- T4, Total
    25 --------- T3, Free
    26 --------- T4,Free
    27 --------- T3, Reverse
    28 --------- Ultrasensitive TSH
    29 --------- Thyroid Peroxidase and Thyroglobulin Antibodies
    30 --------- Thyroglobulin
    31 --------- Thyroxine-binding globulin
    32 --------- Prealbumin/Transthyretin
    33 --------- Insulin, serum
    34 --------- IGF Binding protein-3
    35 --------- IGF-1
    36 --------- DHEA Sulfate
    37 --------- Aldosterone
    38 --------- Renin Activity, Plasma
    39 --------- ACTH, Plasma
    40 --------- Cortisol Binding Globulin (Transcortin)
    41 --------- 7:30AM/12PM/3:30PM---Cortisol, Free and Total
    42 --------- Prolactin
    43 --------- Progesterone
    44 --------- Pregnenolone
    45 --------- Androstenedione
    46 --------- Estradiol, sensitive
    47 --------- Estrone, Serum
    48 --------- Total Testosterone
    49 --------- SHBG
    50 --------- Albumin
    51 --------- Dihydrotestosterone
    52 --------- 3a-Androstanediol Glucuronide
    53 --------- Ceruloplasmin
    54 --------- Coenzyme Q10


    .
    I do not monitor this board, PM me if you have direct question to me.
    You would get more people looking at your story if you would transfer to a
    All Things Male
    board.

    Do not worry that you are (beautiful) girl, it is just a place where the action is.

    ...
     
    Last edited: Aug 9, 2010
  17. Stalwart

    Stalwart New Member

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    Hey Janz,

    Thanks a lot for helping. I will try to transfer (or ask for this thread to be transfered) to the other part of the forum. My dad is improving, he is now willing to order some tests that he would not have ordered before:thumbup:

    The below mentioned I have tested or I am about to test and I don't know all results yet, but some of them turned out "normal" already. But a lot remains to be done.

    2 --------- CBC w/ diff/PLT Normal (but low MCV)
    3 --------- VAP TM Cholesterol Test Normal
    10 --------- C-Reactive Protein (CRP) Normal
    43 --------- Progesterone
    42 --------- Prolactin 240 (102-496)
    36 --------- DHEA Sulfate
    23 --------- T3, Total
    24 --------- T4, Total
    25 --------- T3, Free
    26 --------- T4,Free
    27 --------- T3, Reverse
    28 --------- Ultrasensitive TSH
    29 --------- Thyroid Peroxidase Elevated 43 (0-34)
    -------------and Thyroglobulin Antibodies
    50 --------- Albumin Elevated 58
    16 --------- Ferritin 71 (5-90)
    39 --------- ACTH, Plasma

    I know guessing is no good but it feels quite helpless... I suppose I will miss one more year of school. But if I want to live and get out of this misery, something has to be done. There is little left of beauty by the way, I am no more athletic and pretty but overweight, bloated and pale :/

    The past few days were terrible. A lot of muscle aching and twitching, headache, nausea, palpitations, total misery! I'm pushing my doctors to try to do a better job with this nightmare I'm going thru. One more thing that I noticed. I get lower abdominal cramps like my period would be starting but there is no discharge. Weird...
     
  18. JanSz

    JanSz Well-Known Member

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    #1,
    Please go to this page:
    http://allthingsmale.com/forum/forumdisplay.php?f=2

    and start new thread.

    In a title of thread identify that you are female.

    Sofia's story

    or similar name.
    -
    let this thread die.
    Do not post anything anymore on this thread.
    If someone post here and you want to answer,
    do that on that new thread, plus include a link to the post that you are answering.

    On the other board, stay only on that one thread,
    unless you want to discuss something more general that is not specific to your case.

    =====================================================

    Post all tests, blood and otherwise, that you have done in last 5 years.
    Most likely you do not have those reports with you.
    You have to visit each and every doctor and or hospital and collect clean, easy to read copies of those reports.

    Scan each and every page of every report including any title or end pages.
    You may want to cover or whiteout or edit out your name and DOB.

    Each page, as separate page, can be posted here, 4 pictures at the time.
    Use this service to create URL.

    http://imageshack.us/

    so the picture is displayed post it as
    [​IMG]

    ----------------------------------------------------------
    So far I see
    overuse of thyroid hormones
    thyroid hormones antibody
    low progesterone

    You are into sports, have you had head injury or been hit in the nose bridge (where eyglasses rest)?

    I plan on concentrating on
    pituitary
    thyroid

    unless
    malaria
    lyme
    or similar is at play.

    Last I know of you were using 3Grains of natural thyroid
    and
    30mg-HC/day

    and you got very high FreeT3 & FreeT4

    Unless you have previous tests showing
    high TSH
    and
    low FreeT3
    specially low FreeT3

    you should not be using thyroid hormones.
    How did you figure out that you need thyroid hormones?

    Unless you have tested and know that you have low cortisol
    you should not be taking HC.

    How did you figured out that you need HC?

    ----------------
    Post you

    temperature, pulse and blood pressure

    at present time
    and
    when you were considered your self healthy

    your weight and height
    at present time
    and
    when you were considered your self healthy
    ------------------

    Do not use contraceptives (hormonal type).
    Are you able to corelate your problems with use or changing brand of contraceptives?
    ------------------


    Good luck

    ..
     
    Last edited: Aug 11, 2010
  19. joyee

    joyee Guest

    Its very true, this is exactly one and only which I was searching for, so Its my pleasure to have this thread. I really got mine desired information.
    Thanks man.
     

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