For those who have requested their medical records from RE... — The Bump
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For those who have requested their medical records from RE...

pblgepblge
2500 Comments Fifth Anniversary 500 Love Its Photogenic
member
edited March 2014 in Infertility
I just got the file of medical records from my RE (paid $58 bucks for it!) and I'm appalled. First of all, there were some duplicate pages in there. Second of all, it seems like a lot is missing. To wit:
-No patient overview with a history of treatment. They have this, RIGHT?!?!?!
-No copies of things from other docs I had sent to them, like records from the OBGyn (see siggie for why that's important). Also, no records of the HSG I had done.
-No records of any treatment cycles that didn't involve IVF, including cycles that used injectables.

It also came to me in a complete jumble. It was as if they WANTED it to be confusing, or wanted to mask that things were missing. Took me 20 minutes to put it all in order and determine what was duplicated and wasn't. I've got a call in to ask about what's missing.

I did want to hear from others who have requested this. Did you get your own copy to distribute (like I did) or have it sent directly? Did it include these missing things? Is my doc's office bad at records or is this normal?
**********************siggy/ticker warning**********************

***Losses mentioned.*** TTC #1 since May 2012. Me: 37, OH: 41. Ectopic August 2012 => tubal damage. :'(  Stage 1 endo removed June 2013. IVF #1 Oct/Nov 2013: Long Lupron with Gonal-F. 7R, 7M, 7F. 2 [email protected] Nothing frozen.  => M/C @ 8 wks. :'( Selected RPL panel all normal. Very hyper and brittle response to stims. IVF #2 (antagonist protocol) Feb 2014 => Converted to IUI (Perfect conditions). BFN. IVF #2.1 w/ new RE June 2014: Antagonist protocol. 33R, 31M, 30F, 19 blasts to test!!! I made it through without crashing!! :) Hats off to Dr. Fancypants!! ET of one 5AB blast. BFN. 13 10 CCS'ed snowflakes! FET #1 PUPO as of 7/29 Betas: 8/[email protected], 8/[email protected], 8/[email protected] (etc.) Two sacs on 8/15, one seen on 8/18 after a bleed. U/s 8/25 (6+3) "perfect": 5.9 mm + [email protected]! U/s 9/4 (7+6): 15.9 mm + [email protected] bpm! Please, PLEASE stick this time!!!!
http://i955.photobucket.com/albums/ae39/catfreeburg/866da40f5178fed79efe23fc8a4e8a_zps4498a9cc.jpgimageimageimageimage
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Re: For those who have requested their medical records from RE...

  • I just received my records this week and I was also unhappy with what I received. They sent them directly to me, but there was a bunch of stuff missing (HSG, fert report, embryo development report) - pretty much anything that would have been useful or even necessary had I decided to get a second opinion. I'm not sure why this happened because I'm pretty sure that I checked the box saying that I wanted everything.

    Most of my records were like:
    1/25/14
    Patient called and asked about vitamins. Nurse ordered prescription.

    1/27/14
    Patient informed of results. Patient is happy.

    So helpful.

    ******************************************** siggy warning ******************************************

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    Married July 2011 * TTC #1 since 8/12 * Me: 29 DH: 29
    21 Cycles TI: BFNs
    DX: Stage 2 Endo, uterine polyps and paratubal cysts removed
    2/14: IVF #1 Lupron Protocol = 12R/10M/9F, no frosties; transferred one 3BB blast = BFN
    4/14: IVF #2 Antagonist Protocol = 18R/16M/15F/6 frosties; transferred one 4BB blast = BFP!!
    Beta #1 (5/12) = 232 Beta #2 (5/16) = 886 Beta #3 (5/20) = 3168
    EDD 1/18/15 It's a BOY 

    ~~~~~~ All Are Welcome ~~~~~~

    pblge
  • My RE had suggested that we get second opinions, so we made a few appointments.  I had them send my records to the new office directly, but when I asked for them to send the second, they offered to send me my records and then I could distribute them myself. 

    One thing I fould weird was that the secretary said that she wouldn't charge me for my copy even though they had already made a copy for me.  Did they make a copy when they faxed it?  If they did what did they do with it?  Anyway when they sent it to me it was in order.  I didn't go through it, but it looked like everything I needed was there.

    imageimageimageimageimage

     

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    TTC #1 since August 2011

    My Blog

    September 2012: Start IF testing

    DH (32): SA is ok, slightly low morph, normal SCSA  Me (32): Slightly low progesterone, hostile CM, carrier for CF, Moderately high NKC, High TNFa, heterozyogous mutated Factor XIII, and +APA

    October 2012-May 2014: 4 failed IUIs, 3 failed IVFs, and 1 failed FETw/donor embryos

    November 2014: IVF w/ICSI #4 Agonist/Antagonist with EPP and Prednisone, Baby Aspirin, Lovenox, and IVIG for immune issues.  Converted to freeze all due to lining issues.  2 blasts frozen on day 6!

    January 2015: FET #2 Cancelled due to lining issues

    April 2015: FET #2.1


    PAIF/SAIF Welcome!

    pblge
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  • This sounds exactly like what happened with my records. (Picked them up, stuff missing, out of order etc.) I also found out that my RE had not informed me of everything that she had found. (My favourite was finding a note saying that I was on Synthroid due to hypothyroidism, but she had told me that my thyroid was fine? I found out 6 months after note was written that I had Hashimotos, and it was diagnosed via my family doctor.) I was thoroughly unimpressed. It made the decision to switch so much easier!
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    ***EVERYONE WELCOME***
    TTC #2 with assistance since 03/11
    Me: 33, Autoimmune (Hashimotos and FMS/CFS)
    Treated with Synthroid, acupuncture, TCM and supplements
    DH: 33, MFI (very low on all counts, high antibodies, hemochromatosis)
    Many treatments tried, none successful

    IVF/ICSI #1 05/14 - EPP/Antagonist, Gonal-F and Luveris, 18R, 14M, 13F - SET of 1BC, all arrested on day 5 - C/P
    Genetic testing = normal, DNA Frag = excellent
    IVF #2 03/15 - Long protocol with Suprefact, Gonal-F, and possibly Luveris, adding in PICSI
     
    pblge
  • pblgepblge
    2500 Comments Fifth Anniversary 500 Love Its Photogenic
    member
    edited March 2014
    Thanks, ladies. Glad to hear I'm not the only one who's had this problem (or maybe I wish I were!), but this is still disgusting. Haven't heard from records person yet (suspect she wants to avoid me), but I may well report to the board (thanks for that tip @IFinTN !).

    I also just noticed that one of my RPL panel results was higher than normal -- Hexagonal Stage Phospholipid, which is related to Lupus. This MAY be the one the doc said would come back high if it were less than six weeks following a positive beta test, which this was. Anyone know???

    ETA: And did they CHARGE you all for this?
    **********************siggy/ticker warning**********************

    ***Losses mentioned.*** TTC #1 since May 2012. Me: 37, OH: 41. Ectopic August 2012 => tubal damage. :'(  Stage 1 endo removed June 2013. IVF #1 Oct/Nov 2013: Long Lupron with Gonal-F. 7R, 7M, 7F. 2 [email protected] Nothing frozen.  => M/C @ 8 wks. :'( Selected RPL panel all normal. Very hyper and brittle response to stims. IVF #2 (antagonist protocol) Feb 2014 => Converted to IUI (Perfect conditions). BFN. IVF #2.1 w/ new RE June 2014: Antagonist protocol. 33R, 31M, 30F, 19 blasts to test!!! I made it through without crashing!! :) Hats off to Dr. Fancypants!! ET of one 5AB blast. BFN. 13 10 CCS'ed snowflakes! FET #1 PUPO as of 7/29 Betas: 8/[email protected], 8/[email protected], 8/[email protected] (etc.) Two sacs on 8/15, one seen on 8/18 after a bleed. U/s 8/25 (6+3) "perfect": 5.9 mm + [email protected]! U/s 9/4 (7+6): 15.9 mm + [email protected] bpm! Please, PLEASE stick this time!!!!
    http://i955.photobucket.com/albums/ae39/catfreeburg/866da40f5178fed79efe23fc8a4e8a_zps4498a9cc.jpgimageimageimageimage
    image
  • cls78cls78
    2500 Comments 500 Love Its Fourth Anniversary Photogenic
    member
    Mine was a $1 a page, so it came to $66. I noticed that there was a lot of repeat stuff, but my new RE was able to find what he needed.
    TTC since May/June 2012 
    Sept 2013 testing:
    SA #1 Low motility (17%) 
    SA #2 Lower sperm count, but much higher motility
    CD 3 Bloodwork and ultrasound - Normal HSG - Clear tubes 
    Oct/Nov 2013 Cycle 1 with RE 50 mg Clomid + Ovidrel + IUI BFN  
    Nov/Dec 2013 Cycle 2 with RE 50 mg Clomid + Ovidrel + IUI BFN 
    Jan/Feb 2014 Cycle 3 with RE 50 mg Clomid + Ovidrel + IUI BFN 
    2/20/14 Follow up consult RE recommends IVF with ICSI 
    3/10/14 New patient consult with RMA NJ 
    3/11/14 AMH and other Bloodwork to prep for IVF with ICSI at RMA NJ
    3/28/14 Saline Sonogram - All good
    March/April 2014 IVF #1 Antagonist Protocol
    BCP/Bravelle/Menopur/Ganirelix
    4/16/14 ER 26 Retrieved!!!
    4/17/14 Fert Report 22 Mature 21 Fertilized w/ ICSI
    4/22/14 Report #2 15 BLASTS
    5/24/14 FET!!!  (Transferring 2 snowflakes)
    6/2/14 Beta #1 575!!! :)
    6/4/14 Beta #2 2060!!! :)
    6/11/14 1st Ultrasound...Saw 2 Gestational Sacs!!  Beta #3 34,312!!! 
    6/18/14 2nd Ultrasound...Heartbeats!! Baby A 112bpm Baby B 117bmp <3 Beta #4 172,080!!!
    6/25/14 3rd Ultrasound...Heartbeats!! Baby A 150bpm Baby B 158bpm <3 Beta #5 232,134!!! 
    7/3/14 4th Ultrasound...Heartbeats!! Baby A 173bpm Baby B 162bpm <3 Beta #6 269,228!!!
    Graduated from RMA!!  First appt with OB 7/8/14

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    BabyFruit Ticker

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    pblge
  • I would be very upset too.  After all the time and money we have spent, the least they could do is to keep detailed and accurate records. I requested my records and brought them with me to my new RE's office. I have to say that my previous RE kept great records but I have learned to keep as many notes as I can on my own. I constantly ask my doctor and my nurses for my numbers when I am cycling (follicle size, lining, e2, lh, p, etc) and I keep them in a notebook. I am sure they find my slightly annoying (lol) but I don't care! I also write down my feelings (physical) and anything else I can remember. It is very helpful to look back at them when I am doing a brand new cycle for comparison. 

    Me & DH (33), 3 Furbabies, TTC since October 2011
    Day 3 #’s (Dec 2012) FSH 9, AMH .77, LH 2.4, E2 31, AFC 9 

    DX: Me-DOR + No Tubes, DH-Fine

    Ectopic 2007; lost tube/2nd tube removed Dec 2011 (hydro)

    April 2012=IVF#1- EPP Antag+ICSI, 2R,0F (BFN), Now dx’d with DOR.

    June-July 2012=IVF#2- MDL+ICSI&AH, 8R,4M,3F (BFP 9dp3dt) Beta#1 at 11dp3dt=36, Beta#2 at 15dp3dt=156, Beta#3 at 19dp3dt=671, dx'd with SCH, no growth-m/c at 7wks/Lap Dec 2012 to remove small fibroid.

    Feb 2013=IVF#3-MDL, 2/1=baseline, started 10 units mdl, AFC-7, 2/3 start gonal f, self cxld cycle b/c of low e2.

    April 2013=IVF#3.5-(with new RE)AG/ANT Conv + ICSI. 4/10-4/23 bcp's, 4/20-4/27 lupron, 4/28-ganirelix until end of stimming, 5/2-600 gonal f, 5/4-add 1/2 vial menopur, 5/13-ER (9R,1M,1F), 5/17-ET, 1 beautiful 8 cell (please be my sticky baby!!!!) 5/28-BFFN.

    Oct 2013=IVF#4-LLP+ICSI &AH, 10/14 (6R, 2M, 2F), 10/17-ET, 1 seven cell & a six cell, BFP at 9dp3dt, 1st beta=56, 2nd beta=52, CP.

    Jan 2014=IVF #5-LLP, Cxld after 6 days of stims due to fast response and lead follicle. 

    March 2014=IVF 5.5-LLP, Lupron 3/10, BL 3/18, 11 days of stims, Trigger 3/29, ER 3/31. 7R, 2M, 2F. ET 4/3. Txfd one 5 cell & one 9 cell. BFP on hpt from 7dp3dt & on. Praise be to God. Beta #1 at 11dp3dt=106, #2 at 13dp3dt=239. First u/s 4/28, measuring on track & heartbeat seen. 5/5-2nd u/s, measuring on track with strong heartbeat. 5/12- 3rd u/s & released from RE. Grow baby grow, we love you! Baby G&T is a BOY! Born 12/2014 via c/s! 8lbs, 8oz & 21 inches.


     *******Ticker Warning**********

     


    Lilypie First Birthday tickers

     


    "God's Delay is not God's Denial"
    pblge
  • I asked for my records to be sent to my new RE after 3 failed IVF cycles. I inquired about having an extra set of the disc made for me while they were getting the records. The total was $400+ so clearly I didn't get them. I felt bad for the new REs office because she was also on a first name basis with the person in charge of the records at the clinic. I had to call at least 18 times because stuff was missing. And I know the new office called a bunch of times too.

    I also needed my records from my current RE to go to an immunologist. They were very organized. One file with clearly labelled subfiles and titles that made sense.
    ***WARNING***

    TTC Since 12/2008;  DH: 32, Azoospermia     me: 33, DX during IVF #4: Low AMH (Normal FSH) / SER due 
    to IVF Meds (causing failure to fertilize) Recent DX: Hashimoto's, Lupus Anticoagulant, White Blood Cell Disorder 
    High ANA, ATA, & APA, PAI-1 Heterozygous= blood clotting disorder; connective tissue disorder 
    IVF w/ ICSI #1 2/2011     IVF w/ ICSI #2 5/2011    IVF w/ ICSI #3 12/2012   *New RE* IVF w/ ICSI #4  5/2013
    IVF w/ ICSI #5 8/2013 (Natural Cycle- No drugs)- One follicle->one blast. CCS normal. FET 9/10- 6BB blast. m/c @ 5w
    IUI #1 12/23- BFN  IUI #2 Cancelled (ovulated during AF)  Prep:CoQ10 (300 mg); DHEA (25 mg); Melatonin (3 mg), Folgard 2.2, Metformin 500 2x, Levothyroxine 50mcg, Aspirin 81mg w/ calcium, B12,  Vit. D 4000 & Prenate Elite Daily; Cabergoline 1/2 pill 2x week-  Cycling: Estrace Priming; Prednisone 10mg, Lovenox 40mg 2x,  Femera & Menopur   
    IUI #2.1 6/30 & 7/1. 1st Beta: 90 (7/15); 2nd Beta: 226 (7/17); 3rd Beta: 766   EDD: 3/23/2015

       **ALL WELCOME**                                    My Blog 
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    pblge
  • indianaalumindianaalum
    250 Love Its 500 Comments First Anniversary Name Dropper
    member
    edited March 2014
    I know this is only one piece of the missing info, but due to HIPAA laws, they can't forward you stuff from OTHER doctors. If you send them stuff from other doctors, it has to come straight from that doctor. So if Doctor A sends records to Doctor B, doctor B is not allowed to pass that on to anyone else

     Hope that made sense

    p.s. I guess this is why I am glad we use the "portal" system. All my records are online.
    ===siggy warning====
    Me: 40, DH: 42
    Diagnosis: PCOS
    TTC: May 2013
    TX: IUI #1 with Follistim. Canceled due to too many follicles (10 + that were large); BENCHED
    IVF #1 March 6. 14 eggs retrieved, 10 fertilized. 
    March 11, 4 eggs transferred.
    March 21 BFP  :) Beta #1 457, Beta #2 1350, Beta #3 9619. 
    Due Date November 27, 2014
    TEAM BLUE

    pblge
  • I am seeing a new RE in 10 days.  I requested my medical records from two doc: my old OBGYN and old RE.  The RE sent me the records for free in a timely manner.  The OBGYN didn't send them yet,  charge me $25 for them though.

    I have everything send to my house now because I'm not sure if I'll be seeing this new RE.  If I don't' connect with her or something seems sketchy I want to have all of the records at home so I can just make a copy and go to the different doc.

    The records I got are not complete.  Some data is better then other.  There is no clear pregnancy loss record.  I think I had 8 PG's, but i can only see 6 on paper and it's only because I can read the not so clear USG results.

    Also no sign of HSG.  I had it done twice and my new RE wants a copy of it.  I would hate to have to do it again if I don't have to.

    The most disturbing thing was to find out 5 years later that both of viable PG's that ended with MC were 46xy and 46xx.  I understand now why they didn't tell me at the time of loss but I think I would still prefer to know then.

    Why is it so hard to share our information?  We pay so much for everything and we don't event get a copy of what's done to us....it sucks!

    Sorry for the rant............
    TTC since 2007; Unexplained; 8PG: 4CP, 2EP, 2MC w/HB at 8-9 weeks
    Getting ready for DIVF #1 - Transfer 12/16! 
    pblge
  • I paid $15 for my records.  Most of the lab work was missing (I had really wanted the results of my RPL panel for the new RE) and there were some notes that were obviously for another patient that I think were entered into my history in error.  My new RE didn't even read the records even though they requested them from me because "that was a lot of paper"....um yeah I was with the RE for 3 years and the history I received was 167 pages long, but I read them, my new RE should have taken the time as well.  (I'm not in love with the new RE but will try 1 cycle with them because they have good stats and its a pain for me to get a referral)

    Melissa - 36   DH - 42
    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
    PCOS, MTHFR, MFI
    TTC # 1 4+years
    6 months Clomid/Unmonitored TI with GYN
    1st RE visit Jan'11
    7 Clomid IUI's 3/11-3/12 - 4 with DS
    8/11 Clomid/IUI/DS - BFP!  MMC 8 weeks D&C 10/11
    4/12 Moving on to IVF!
    8/12 IVF/ICSI 16R/6M/5F 5DT of 2 blasts, froze 1 BFP! Heart beat at 7wk us! MMC 9 weeks D&C 10/12
    1/13 FET Transferred our 1 frozen blast - BFN
    6/13 IVF/ICSI 27R/17M/7F 3DT 2 embryos, froze 1 hatching blast - BFN  
    11/14 IVF 33R/28M/20F (12/16F DH/ICSI, 8/12F DS/Natural) - 5dt of 2 morulas - BFP! 
                   Beta 1 12dp5dt - 162
                   Beta 2 15dp5dt - 414  
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    pblge
  • My favorite receptionist/financial counselor took care of mine. I requested them on a Monday, and her last day with that clinic was on Friday. I showed up for my WTF appointment on that Friday (her last day) and was completely blown away that she had my records ready to go in a very full envelope. She even managed to get my embryology report from IVF #2, and told me that the embryologist gritched at her that my ER was less than two weeks prior from the request. She hooked us up big time!
    **SIGGY WARNING**

    Me: 32 DH: 35  TTC#1 since March 2012
    Dx: Poor Embryo Quality, Arcuate Uterus, Poor Uterine Blood Flow, Mild Endo, 
           Protein S Deficiency, Sjorgen's Syndrome 

    IUI #1-5: BFN
    Laparoscopy & Hysteroscopy: minimal endo, partial septoplasty
    IVF #1: 10R/6M/6F ~ Day 3 ET = BFN
    IVF #2: 14R/9M/5F ~ transfer canceled ~ all embryos arrested at 1-2 cell stage
    IVF #3: 9R/5M/5F ~ 1 frosty!
    IVF #4 (FET #1): BFN

    IVF #5 (DE IVF #1 with Dr. KK protocol): Currently PREGNANT!!!!!!
    Synthroid + Prednisone + Metformin + Baby Aspirin + Supplements Galore = 15+ pills a day
    Lupron + Lovenox + Delestrogen + IVIG + B/W = 2-5 pokes a day
    19R, 17M, 17F - transferred two Grade A blasts 11/16, four frosties!!!
    Beta #1 11/24 (13dpo/8dp5dt) = 367 ~ Beta #2 11/26 (15dpo/10dp5dt) = 709
    Beta #3 11/29 (18dpo/13dp5dt) = 1,997 ~ Beta #4 12/1 (20dpo/15dp5dt) = 3,403

    imageimageimage

    My Blog: Running and Dreaming for Two ~ All are Welcome!
    pblge
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