Worried am desperate no diagnosis

my daughter is 21 years old. For a year she has had extreme weight loss where she doesn’t look like the same person. She has no appetite eats small amounts odd occasion does eat a meal but like said not often. She is very tired breathless her muscles ache even when brushing her hair and a lot of dizzy spells her fingertips go blue. She hates the way she looks as she is so thin now. She has been diagnosed woth anemia recently and doctor said he would review in a month he called her she said she is worse and he just said I’ll see you in a month she was absolutely deistated as this has been over a year now and not getting anywhere. She had a endoscopy and all shown fine. I called the doctors last week and asked why they have not checked B12 and they booked a appointment for it. How long do we wait do we see her disappear in front of our eyes to get a diagnosis to why. He said stress the only reason she is stressed is because she looks so thin and everyone comments I’ve actually had someone say to me she looks like she is dying and in all honesty she actually looks very very ill. She said her body now reminds her of something she watched as a child a funny looking skeleton. It’s breaking our hearts all around her are confused to what is wrong. I’m at my wits end and so is my daughter as to what is wrong and tbh no one seems to care. 

  • Hi there ...

    If i were you I'd get a second opinion ... no mater what it is she needs help ... the one thing that crossed my mind was could she be anorexic... I've had a couple of nieces with that ... and they ate so little, in the end would eat nothing ... or bring it up if they did eat ... we got them back, and they are doing well now .. 

    As I say I'm no expert but it did sound like what happened to them ... but phone your surgery and get a different Dr.  ... it must be heartbraking watching her ... let us know how you go ... Chrissie x

  • thank you so much for reply it means a lot. . No she definitely isn’t though as she actually doesn’t like being thin she has started to hate herself she had a lovely figure actually was size 12-14 and loved it now a size 6 she hates being thin and desperately wants to eat but her body is saying no when she feels hungry she is like quick I need to eat whilst I can and she has absolute no sickness atall throughout the time. She was full of energy and so so happy and now she is none of them she shakes she is always feeling so so cold she can’t sing without being breathless tries to have a laugh and it exausts her. She goes to work 9-5 and she struggles bad put on makeup to hide her black eyes puts a smile on her face and pretends she said that’s exhausting too. It is heartbreaking totally. Been to the doctors about 15-20 times over the year and they just say we will monitor one doctor actually took notice and said it’s no good you seeing different doctors see me as you come and we start all o we again so we tried that and again a different doctor after giving explanation. Bloods last week and asked nurse to please check weight as she has lost more and she said aww sorry we don’t have scales have you been losing much then and changed the subject. Coming to a point where we don’t know where to turn. If we change our doctor we will still see the same ones as they are all linked doctors move around to 3 different surgery’s in our area part of beacon medical and then we are out of catchment area for anywhere else. Xx

  • Hi there ...

    I'm really stumped ... it makes me so angry, it's like banging your head on a brick wall ... can you afford to see a private G P ... l hope someone reads your thread and can give you better advice then I can ... 

    Ask for a written report copy of her bloods and see what that says ... they have to give you a copy.. I've kept all copies of my tests ... l really hope you find a way of getting that help ... 

    Chrissie x

  • Thankyou so much. Yes I’ll get them on Monday and try and work them out. If it was something serious would it show in the bloods because it will be a big relief if it does then I will be more satisfied with that xx

  • Hello Launa2019

    So sorry you are not getting the answers and attention that would help you both.

    Myst admit when first reading your post was thinking along the same lines as Chriss.  I would like to think the medical/nursing staff would have had the forethought to realise anorexics are usually in denial and, part of the condition is to not like the way they look.  No matter what is causing this drastic weight loss you need some answers.  

    Best advice from Chriss to get written reports and keep them.  Also maybe a day to day diary of food intake, weight (so important) and how she’s feeling.  Did you mention they had no scales?  Either having no scales or not weighing patient with severe weight loss is unacceptable.  Document everything with dates and times, facts only.  

    I am sure your daughter looks beautiful no matter what size - but you do need some answers.  

    xxxxx

  • Hi Launa2019

    So sorry to hear about your daughters health problems, I hope you get to the bottom of them soon. 

    I must admit,when I read your post,anorexia was at the front of my mind and if not that could there be a psychological issue possibly to your daughter not eating food? 

    I imagine this is a very worrying time for you both. I agree with petrgn-keep a food diary-what she has been offered to eat,what she has eaten,how she feels that day etc. Also you could ask the doctor to be referred to a dietician? They could offer advice on high calorific foods so that your daughter can keep her energy levels up whilst eating so little. They can also offer high calorie shakes that have all the nutrients she needs. 

    I do hope you both get some answers and insight soon and that your daughter will be on the road to recovery in no time.

    Take care 

    Marie xxxx

  • Hi Launa

    I am so sorry to read of your plight with your daughter. She is being badly let down by her GP practice. For a nurse to say we have no scales!! shame on them.

    Did the GP say what type of anaemia her bloods have shown. There are several anaemias and she sounds like she has them all if I may say. One is iron deficient anaemia another is folate deficiant anaemia another is B12 deficiant anaemia(linked to pernicious amaemia). When checking B12 in bloods folate must be checked at the same time as low b12 can mask a folate dificiency and this must be corrected before treating with b12. Her weight loss should have alerted Drs to this.

    She is entitled to copies of her bloods lab reports and should ask for them,you can then get advice as to whether she is in need of further tests and treatment.

    Both B12 and folate are water soluble and if her stores are depleted she will be feeling very ill and weak. Her blood will not be well oxegenated hence the blue finger tip & nail beds.

    Has she had her bloods tested for diabetes? If not get this tested too. She needs the full works done!

    I had a niece whom was told she only had exam nerves repeatedly by her GP,she actually had severe crones disease and almost died. Unfortunately some GPs put things down to stress etc. Do you go to Dr appts with your daughter? I know I would. They tend to pay more attention when there is a second person in attendance.

    Take care xx

  • Hello there,

    Sorry to read that your daughter is having such a hard time, no wonder you are worried.

    If the doctor is saying stress is the cause, what are they doing to help her deal with stress? I had a lot of trouble getting a diagnosis for balance problems and vertigo.Won't bore you with details, but several doctors blamed stress, when it was the physical problem and being undiagnosed that caused stress. So I asked for a referral to a health psychologist.

    The psychologist agreed with me. She taught me coping strategies which were a big help. (Eventual diagnosis inner ear nerve damage. No miracle cure, but being able to understand the cause was a massive relief in itself.)

    Do you have any photographs of your daughter before the problem started? Two reasons.1, to see how your daughter reacts to how she used to look. For instance, does she say she looks massive? Or that she looked healthy? It may give a clue as to how she sees herself. 2, to show the next doctor your daughter visits, so they have a visual refference of the changes. 

    I agree with the post regarding seeing a dietician. It's no wonder your daughter has no energy if she's not taking enough calories and nutrition on board. Fortified drinks may help.

    Hope you find some answers soon.

    regards, gamechanger

     

     

  • hello guys thank you for your reply’s. As time went on my beautiful daughter got worse and admitted for bloods. They found she had pancreatitus. MRI week later and await results as no cause has been found she isn’t a drinker and no gallstones. Worry is upmost and anger anger that she was left with this for so so long pain 3-4 stone weight oss now she does look anorexic but it’s the pain and appetitive that has caused this and not being diagnosed correctly. I can only hope that the MRI is a good result as a parent I can’t get out of my head the worst. I hope a she will be ok and will be able to move forward with this. Thank you for reply’s. Xx

  • Have you tried  a walk in centre or taking her to hospital a and e .They would have to do all the checks or phoning an ambulance saying she has pains, the paramedics are marvellous and would checkso many things and advise if your dear daughter needs to be admitted to hospital. I hope you get the attention you so need .

    If not at least change your Doctor. Good luck.