Hi, took our daughter Sinitta to St Barts on Tues - Behçet's UK

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Hi, took our daughter Sinitta to St Barts on Tues

tamirra profile image

after being quite ill, they had her blood results on the screen from August and asked her if she was taking iron supplements, we both looked puzzled as to why, and was then told that she was very very anemic and her g.p should have contacted her in Aug to start the iron, they didn`t contact her, and her iron levels should be i think between 18-30 her`s was 1, the prof was so shocked her mouth fell open as she couldn`t understand how my daughter was still walking about and trying to function in a "normal" way, all hell was let loose once i told my husband he got straight on the phone to the doctor and as per usual it was pass the buck and nobody would take the blame, typical! i`m calmer today than i was yesterday, i couldn`t stop crying as this is now the 2nd time there has been a major cock up and she has been seriously ill and we nearly lost her, pure negligence in my eyes. The problem now being is she is due to have an operation on the 12th Nov and i`m not sure if this is still possible with her iron being so low, she is on 210 mg iron pills 3 times daily, does anyone know if this would still be able to go ahead. Thank you

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Oh my goodness, that is absolutely appalling and totaly inexcusable. You probably have far too much going on right now to sort out how it happened, but I think it's something you should look into in the future. Perhaps contacting PALS would be a good way forward.

I don't know how your daughter has carried on either. When my HB gets below 11 I have a blood transfusion, as 11 is considered too low to function normally by my GP practise. 13 - 15 is what they consider to be acceptable.

The only people who will be able to tell you if the operation can go ahead will be the people who intend to do the operation. If they do not know what has happened then I suggest you contact them, let them know and ask their advice.

I am surprised your daughter has been given iron pills, there are much quicker and more effective ways of treating this - injections or transfusions for example. I guess the docs know what they are doing but it seems this something that is always worth checking, as your case shows.

Yes Tigerfeet there`s definatley no excuse for it, the prof had never in all the years she has been doing this job ever seen a number so low, my son thinks we should take it further, but my daughter says no and i can not go against her word.

No, Tamirra, surgery cannot go ahead with iron levels as low as this. The reason being that if she was to bleed - and it wouldn't need too much blood loss in this instance - she wouldn't have the iron reserves to carry her through. Where I worked the iron level had to be a minimum of 10 gdl before surgery could take place, If it wasn't at that level, a blood transfusion was given.

I have never heard of a iron level as low as 1 - she shouldn't be able to even stand up at this level. This is appalling and the treatment she is receiving - i.e. 'double iron' to my mind isn't enough to bring her iron levels up rapidly. If a transfusion isn't given, then injections are (they are called Jectofer),

Having said that - there are no guidelines in place (so far as I am aware) of what level of iron deficiency should trigger treatment. The iron level for a normal woman is defined as being between 10.5 and 11.0 gdl. The level mentioned by Tig above are the correct levels for men and women combined but the female level is calculated to take into account the monthly loss of blood.

I would advise you to contact the surgical team urgently to tell them what has happened.

Sinitta is on the phone to the ENT as i write this, will let you know what is said. x

I know devon this is why the hospital couldnt believe what she was seeing, it totally shocked her that she was even up at the hospital and running around looking after her young 5 year old daughter. x

I dont know Sarah i really dont, on the screen at st Barts it was in Red, as was the inflamation as this was through the roof, and not a word was said from any hosp or our doctors surgery.

The ENT at William Harvery where she is having her op have said that she is to have a blood test done again in the morning, and another one on the 1st Nov at the pre assessment and they will then know how her bloods are with both results and they will take it from there, i just hope they read the resuts right! x

andreafm profile image
andreafm in reply to tamirra

Hi tamirra

Gosh that is maddning, I do hope she gets some treatment for it soon and start to feel better. Sinnita is probably feeling too low and rough to contemplate complaining, which wouldn't be suprising.

I get copies of the blood test results myself from the G.P and question anything abnormal. I might be a bit of a paranoid pain to the doctors but I just don't trust them to always contact me if things are abnormal. I was having high esr and crp rates for 5 or 6 years which weren't being taken notice of. In fact Doctors were saying my bloods were fine. It wasn't until I asked for a summary of all abnormal results that this came to light......can you believe this ?

You can ask the G.P to print of a history summary of certain one's i.e iron, esr etc.

I hand these copies to the different hospitals I visit as each hospital doesn't have access to the other hospitals results.

That way each hospital has the same information which is both helpful and also protective about this type of problem happening.

Take care of yourselves


Hi Everyone

Am reading the above and am totally amazed!

I used to work in biochemistry and the odd result would slip though (I'm talking 25 years ago) - however, where is the follow up that should have happened here ?

In one way I agree with Sinitta it is probably best not to say too much - you don't want defensive people covering themselves who are supposed to be looking after your health.

When I was finally diagnosed I was asked by the Professor did I want to pursue any complaints (and perhaps sue for maltreatment) but I had already decided not to. He heaved a sigh of relief and I can't fault the care I have received since (I think they were grateful).

I believe the people concerned will be disciplined quietly by their peers (even themselves if they have any moral fibre).

Somewhere on the American Behcets Association website I read of someone putting in a complaint and regretting it because they weren't treated the same afterwards by any of the doctors.

Just my 'two bobs' worth (very Australian saying).

PS I'm feeling much better and will put something up on my blog tomorrow.

Thinking of you all, especially Sinitta


Thank you all for your kind thoughts and concerns, she is having another blood test done today lets hope she gets the right results or results atall, but Andrea i will ask for a copy of her blood results, and Lesley i can understand where she is coming from about not complaining incase her care does get abused, but i would personally think that was be the last thing they would think of doing and putting their jobs on the line, but who knows. x x

Do you know if it was Hb ( haemaglobin) result or Ferritin result?

Hb is the functioning iron in the circulating blood, and Ferritin are the iron stores. Ferritin can get depleted by the blood 'topping' itself up for what ever reason and can get very low, but can be treated by replacing the iron slowly - long term tablets ( 6 months ish ). Although its not an acute anaemia, it can still make you feel very run down, lacking in energy, acutely tired and breathless at times.

Acute anaemia is were the Hb has dropped significantly, and this can be life threatening as is reduces the oxygen carried around the body. Protocols vary a little depending on individual circumstances and physician, but tend to be if the Hb is 8 or below then a transfusion is warranted. Anything above 8 will probably be treated by tablets. As I say this is dependant on the treating physician, and also the cause of the anaemia.

Surgery would be dependant on the nature and urgency of the procedure, and would be down to the surgeon to decide. As DD said, contact the surgeon via the secretary and see whats said.

There is no excuse for the GP not to have initiated treatment when it is so obviously indicated and this does need rectifying. You could make an appointment and speak to the Practice Manager and voice your concerns. Its not 'rocking the boat'.

Keeping an eye on your own blood results is a good idea, its something I have always done, and I find it also gives you a degree of control ( if thats the right word).

Hoping all goes well x

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After my knee jerk reaction yesterday (I am still shocked!) I have re-read my post and had a look at the excellent comments above.

One thing mentioned which I missed was WHY is it so low? ie, what is the cause. There are various possible reasons for anemia and this could be a significant factor in treatment and decision re surgery. I had many investigations to find the cause of mine.

I also get copies of my bloods and give them to other docs, along with clinic letters and any other relevant info. We should never have to keep on top of all of this ourselves but I think we are our own best physicians when it comes to information.

Regarding doing something about it, and my suggestion about contacting PALS, I didn't mean to sue or complain, although if that is something you do want to do they can help with you with it, but to ask their advice. They may be able to help to have it investigated/noted and ensure it doesn't happen again, to your family or anyone elses. I had to do this once and it was resolved amicably and with no negative repercussions but I appreciate that sadly it doesn't mean it has been or will be the case for others - I just know it SHOULD be. I expect you have enough to cope with at the moment, I was suggesting it as a possible future option that may give you some peace of mind.

Do keep us up to date with how she is doing - and how you are coping. You sound like a brilliant mum, thank goodness your daughter has you to help her :-)

andreafm profile image
andreafm in reply to Hidden

Some medications can cause aniemia. Such as methotrexate being one of them and prednisolone.

I am not saying it is this, just that the Doctors don't check these and I don't think they necesarily know. It is on the medication fact sheets though and I must admit I do tend to read them closely. These medications are not to be underestimated particularly having been on them for a long time.


Thank you all, you are all so caring and understanding, we found out today that her haemaglobin is 12 which they say is above normal, is it? its her iron that is 1. She takes Cellcept would this be the cause of the iron levels depleting? Sinitta just dosnt want to do anything about it, she didnt even when the doctor over dosed her medication before she was even diagnosed with Behcet`s, she had then what we thought was tonsilitis and they had tried 8 lots of different antibiotics and before she had even finished a course they took her off and started her on another lot, and one particular time her prescribed an antibiotic and put the dosage down wrong and she had a terrible reaction o it, i was on the phone to him in absolute sheer desperation for help and he immediatly called the ambulance and was at our house in the middle if him seeing patients telling my daughter that she is fine and it is nothing he has done, he is no longer a practicing doctor after so many other complaints, he has now been struck off, so you can understand why im so worried when something like this goes wrong, but Sinitta just wont have anything said or done about it. x x

andreafm profile image
andreafm in reply to tamirra

As I said before it sounds as if she really has had enough of it all and wants to move on past it. I have done this many of times in the past over mistakes, as the amount of energy needed outweighs any response you may get from it. Particularly when you are managing to get Doctors on board now at Barts and she has surgery ahead of her, that is maybe enough in itself.

But in saying that, it doesn't have to be a major complaint. It is about bringing it to light so that the doctors responsible are aware of her iron problem and that way not have to worry about mistrusting doctors.

This is easier said than done but can work very well for the relationship with that doctor who may have to have with sinnitta in the future.

I guess if it were me I would have to respect her wishes.


Me again, ive just found this little piece, can anyone tell me if i`m tomtake note of it as we wasn`t told about it......

Mycophenolate mofetil (CellCept)

Iron might decrease how much mycophenolate mofetil (CellCept) the body absorbs. Taking iron along with mycophenolate mofetil (CellCept) might decrease the effectiveness of mycophenolate mofetil (CellCept). To avoid this interaction take iron at least two hours after mycophenolate mofetil (CellCept).

andreafm profile image
andreafm in reply to tamirra

It is worth discussing with them about it, but Doctors will weigh up in the end what is more important in her healthcare. It doesn't say you cannot take it with cellcept but to not take it at the same time.

This also goes for other medications such as those for indigestion, which happens frequently with many different medications as it stops them from being absorbed properly.

Hope this helps


Tamirra, this is the relevant bit:

To avoid this interaction take iron at least two hours after mycophenolate mofetil (CellCept).

As Andrea has said, some drugs interact each other or reduce the absorption of one or the other. Equally, for some medications to be absorbed they should be taken alongside something else - for instance Vitamin D is not well absorbed by the body unless you take it with Calcium.

So what they're saying above is the taking iron alongside the Cellcept will reduce how much of the Cellcept Sinnitta absorbs.

As for her not wanting to take it further, I know it's difficult to understand but I have been in a very similar situation with number two son.

Number two son was imprisoned three years ago for something he didn't do and the police knew he hadn't done it. He served almost two years of a three year sentence and, I don't know about other prisons around the country but Exeter prison is not a soft touch. There were no such things a video games and the like except on 'association' and television was an earned privilege. He earned his by good behaviour but step out of line by his cellmate means he lost that earned privilege. He was eventually moved to another cell and got his telly back. But I'm digressing.

My OH and me were not only devastated at the turn of events, were were incandescent with rage at the unfairness of it all. We wanted to take it through the prison complaints procedure - you of all people know what it's like when you need to protect your baby! My boy would hear nothing of it - he just wanted it all over and done with and when he came out he wanted to be out and that was that - no reminders. And,despite not agreeing with him, we didn't push it any further. Now I think that was the right thing to do.

As an aside to all of this - what happened to my boy was the best thing ever although we couldn't know that at the time! He has Asperger's Syndrome and the problems relating to the world that comes with it. Prison and having to fend for himself within a brutal regime (and it is brutal) helped, plus they gave him coping strategies too. My boy is now the person who I knew he always was, the problem was only I knew who was locked away inside, even his father couldn't see it. Now everybody can see it.

Out of the darkest hours, sunshine can come. Keep your chin up my darling.

Thank you Andrea, we will discuss at our next visit.

Thank you so very much Devon, and also everyone, i do try to put on a stong exterior, but sometimes it just gets too much, my husband is a difficult one to talk too when it comes to her illness as he blames himself, and he would rather bury his head in the sand and hope it will all go away, we had words last night about her over dinner, but he just wont accept the fact that she is ill and there is no cure. So i thank you all from the bottom of my heart as i know if i have worries i can turn to you all. x x

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It's so hard when someone has their head in the sand. If it's the patient AND the caregiver they are sometimes on different beaches!

We don't have all the answers, we may not have experienced the exact same thing, but we can offer one another empathy and support and share our own experiences and that, I think, can be a lifeline. xx

Yes Tigerfeet anything helps in a crisis. x x

Once again I'm reading this saga (I mean saga in a positive way - I looked up the dictionary) with avid interest.

I've got heaps to tell but am trying to catch up on a bit of work (before going on a cyclophoshamide infusion next Wednesday).

Actually I think my story will be a bit lame compared to this one.

As Tamirra said above anything helps in a crisis and this little group - special thank you for messages from Di and a phone call from Moya - got me through my crisis last week.

It is amazing how things change with technology, to think we can all help each other, especially in a crisis no matter how far away we are is amazing. I felt like it was having someone right there.

Thinking of you all.


Update, Sinitta has decided to ring the solicitor today, she cant get her head around what happened, so i`ve told her if its going to make her feel better then try to get a free consultation and to lay all the cards on the table and to tell them also about her illness and see if they think it will be worth the stress and maybe making herself ill with the emotional stress to maybe come out the end at a loss, not sure if i`ve advised her right or not, but she is a very strong willed person and she will do what she wants too at the end of the day.

Just support her in whatever decision she makes - it's all you can do because she's a grown up. I find that really difficult with my boys - remembering they are grown up and can deal with life on their own terms. That's the nature of being a mum I s'pose.

Hugs to you both

Yes devon i find that really difficult, even more so now she is ill, ive seem to have tried to take over her life and she stresses out at me lol, cant help it but ive always been the same, even when she was a teenager i would give her a time to be in and if she was a minute late lol, yes a minute late i was at the door fuming, my mum always told told me not to be so ott but i couldn`t help it, dunno why, but i wasnt like it with my son. x

Tamirra, The most useful practical thing for us has been to keep a full Medical Record in a file and make a Summary Sheet (for daughter age 15). We take this to every consultation. I get copies of all the consultant clinic letters (request from consultant's secretary or copy from GP) and all the test results and scans including imaging (request direct from clinic or laboratory). Eg blood test result printouts show normal levels and we can then ask a doc what they mean if they're outside normal. If there was integrated IT in the NHS we wouldn't have to do this. But there isn't. Maybe Sinitta would let you do this for her to save time and worry?

We've had misdiagnosis and lost results and negligent GPs. I accept human error but there have to be systems to keep people safe. We are same as everyone above: no.1 is not upsetting yourself, no.2 is making sure docs know what's gone wrong (GP Practice Manager and PALS for example), no.3 is working with docs in mutual respect.

Docs like and use the complete medical history in our file and we put stickers in to remember to ask the questions in the consultation. It's better than their records, which normally has a lot missing because we are with different hospitals and PCTs.

It's been a diplomatic way of pointing up failures in the system or misdiagnoses. If we speak gently but fairly and do not hold back from asking difficult questions, they realise our motive is purely to make progress on the illness and reduce stress, and the docs have responded well and helped us. And we also find out the extent of their knowledge this way, particulary with GPs, who very often haven't read up about managing the conditions. And specialised doctors who don't recognise symptoms in other parts of the body.

Have you considered training for counselling skills, Tamirra?


The NHS website is so good if you can find your way around it, search 'access to medical records'.

We have requested to see the PCT and individual hospital Medical Records, and had copies made for some, mainly to make sure the information was passed to hospitals in other PCTs. A few useful letters between clinics turned up which I wouldn't normally see but most of it was clinical observation.

But been refused access to medical records in a Spire private hospital where we went for second opinion - and I only wanted to check whether her drug allergies were listed.

Thank you so much littlemermaid, its knowing how far back to go with the obtaining of the medical notes, her 1st symptoms showed when she was 17, she is now 25 and was diagnosed 3 years ago, so they wouldnt go back that far would they?, x

We all have medical records from before we are born! It's a question of finding them. The GP has a copy of all consultant letters. Each NHS region has centralised notes - some of ours were in store after 2y but they got them out. You would start by listing which consultants she has been with, then speaking to Medical Records for the individual hospital about where the notes are now.

But I would start at the present and build a file working backwards, filling in the gaps, if you like this idea. I go back to first diagnosis but then have my own notes on the Summary Sheet about childhood illnesses that may/may not be related. This saves the junior and admissions docs a massive amount of time when they have to take the history - we got a lot of relief and thanks for this.

It might help you both get more control and information. The hospital notes for my daughter's admissions were not useful to copy - way too much paper - but good to read through because they hadn't sent me some of the clinic letters. You and your daughter can read the notes at the hospital if you request it.

The main thing is to make progress and feel more in control without driving yourself to more stress x (Don't mention the solicitor!)

Just as an example. We finally got a local Paediatrician appointment at 15yo after being in tertiary referral national hospital for 4y. I knew the local PCT had no notes. I requested the GP print off the entire file for the Paed Consultant to get the complete notes into the PCT. No way would they have done this otherwise (my goodness, they moaned about the computer ink but it is their decision not to have linked IT with the local hospital).

The GP is supposed to hold the centralised notes (all consultant letters), manage referrals, first line for triage, even 'manage' Clinical Commissioning Group budget now (Lord, help us all). We have to make sure we do not fall in the communication gap between hospital consultant and GP especially on drug prescriptions and monitoring and test results x

Paed Consultant refused to manage the case, by the way, so no one think we are better off for coordination paediatric. They said these complex cases in different PCTs should be managed by Clinical Lead Consultant in tertiary referral. So Sinitta should have a Lead Consultant to manage all this - maybe it's the Prof?

Thank you so much for the useful info much appreciated. x

Big hug from us mothers. She is so young and you are being very brave and strong. As Sunset says we are all growing from dealing with this x


Here's some information about the new national Spine for medical records and patient access to records, all on its way - hope this takes the pressure off a bit x

Hi Tamara,

How dreadful for your Daughter. I take Methotrexate and my bloods are checked every 3 months, FBC's (full blood count) LFT's (liver function) and blood stickiness (pro collagen assay) does your daughter have regular bloods done?

I hope she starts to get the treatment she deserves. Xx

Hi twins, yes every month she has them done but nobody bothered to let her know the results.

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