Who can I get to help me?

[FlopsyDoodle]

I have some kind of chronic condition that, as yet, I don’t have a diagnosis for. I have recurring stomach ulcers, vomiting blood and anemia. It’s unpleasant, obviously, but normally manageable as I have iron infusions every 4-6 months (I can’t take tablets due to ulcers). I was due to have one in March as I was anemic then. All routine appointments were then suspended due to corona. That was fine, it often takes a few weeks to have an infusion. It’s now July and I’m massively anemic. I’ve been back to my GP but she can only forward my notes as urgent to the hospital and they consider it a routine appointment and flat out won’t do it.

I had an endoscopy last week with my consultant who said I desperately needed one and has referred me for one as part of a cancer pathway (he thinks that’s the best way of being seen quickly despite him not thinking I have cancer) but it can still take around 4 weeks.

I have sole care of my 2 dc’s mon-fri. I can’t walk upstairs to bed as I’m so exhausted. I haven’t done any washing or had a shower in days. I can’t eat anything, I just drink a couple of hot chocolates a day. All I do is sleep and cry. I can’t even carry my kids plates of food from the kitchen as I’m shaking so much.

All the private hospitals round here have been taken over as overflow NHS stuff so can’t go privately. My consultant is adamant that me showing up at A and E won’t result in me getting an iron infusion. Even if I did go to A and E I don’t know what I’d do with my kids as there’s no one that could have them.

I just don’t know what to do.

Presumably do the ulcers mean that you cannot take spatone or floradix either?

Surely you are going to end up collapsing and in A&E if your blood counts continues to worsen?

I don't know if it would help because you seem to be quite deficient already but have you tried spatone- it is just iron water. I have heard a lot of people take it when they can't take iron pills at all. It might not improve your iron levels but will help with your day to day task. It is available on boots.

Yep, can’t take the ‘gentle iron’ like floradix either. I’ve been trying to eat lots of red meat etc but my consultant said that at this stage it will make very little difference. Both GP and consultant were very empathetic but also made it quite clear that they were totally unable to do anything to speed it up.

Sounds awful OP. Do you know what your HB is? Rather than a blood transfusion, could you GP give you an iron injection instead? Not as quick, but certainly beneficial.

I assume you've already modified your diet too? Not having tannins like red wine/tea when you eat an iron rich meal? Having Vit C when you do have an iron rich meal?

Who normally minds your kids when you have an endoscopy or an infusion? I'd rarely say go to A&E, but in this case, get your kids minded and go in.

Where are you? You can get treatment in Harley Street for under £1k, just google iron infusion, Harley St. There’s a Nuffield Clinic in Cambridge that looks as if it’s seeing patients for iron therapy.

I’m so sorry for you, it sounds really hard! Is there no one who can help you with the children? A friend or neighbour with a nice teenager?

At my last blood test, about 3 weeks ago my HB was around 10, I feel a lot worse than that now though. I had a blood test last week but not had the results yet. I can’t drink caffeine or alcohol due to ulcers and I always try to have a Berroca with meals.

From what I can find the HarleyStreet one would be the closest. It’s still about 200 miles away though. Normally dh or my mum look after kids when I have appointments but my mum is staying with my sister as she’s pregnant and dh has just gone back to work after being on furlough and his job is really at risk.

I’ll try calling the Harley Street place tomorrow in case they do weekend appointments.

My HB was 9 at one stage, so I understand how it can feel. Even at that level, I was only advised on diet modification and tablets though- a transfusion was never discussed!

Are your GP and consultant aware of the way you are physically feeling and coping though? 10 is low, but not what might be considered dangerously low to them. We can all cope with differing levels of anaemia. Some get symptoms at a higher level, whereas others can be extremely low before feeling anything.

Could you ask for a repeat HB at your GP's? Ask to see a different GP?

Have you got PALS dept at the hospital, I would call them. Why should you travel 200 miles to go to a private hospital who dont know you or your history. Can you go to a&e tomorrow instead where they have your records, is there a private centre at your hospital. How does your consultant know you wont get treated.

I only have infusions as I can’t physically take iron tablets and the medication I take for my ulcers reduces the amount of iron my body absorbs. I’m also bleeding internally from the ulcers so my iron levels can rapidly drop if I’ve had a large bleed which I’m often unaware of until I feel weak and shaky. GP and consultant know how I’m feeling and i had another blood test last week but don’t have the results yet.

There is a PALS bit at the hospital, I could try them. I’d really rather not have to pay £1k and travel halfway across the country to a private hospital for a completely routine procedure. The consultant was making phone calls to various departments while I was in his office to see if anyone could arrange an infusion. After a lot of deliberating he decided the quickest way would be to refer me through a cancer pathway. I did ask about A and E but he said all they’d do is see that I’m his patient, send me to him or whoever was covering for him and we’d be sat in the same place making the same phone calls.

Sorry, missed that about already having another blood test last week.

Have you asked about an iron injection, rather than an IV infusion? If not done as a Z track injection, it can leave a small mark on the skin apparently, but might be something the practice nurse can give whilst waiting your normal transfusion. Its a muscular injection.

The iron clinic Harley street

Ooh, I’ve not heard of an iron injection. I’ll ask about that, it sounds a lot more straightforward than being hooked up to an IV thing for hours. Thanks

Have you tried the Iron patches , probably too little to really be of benefit but may be worth a try , they sell them on Amazon . How long have you had this issue without a diagnosis ?

Hey op, I have iron infusions too as my body doesn’t absorb iron. I know how u feel it can take ages for it to b arranged. I would try asking your gp again as mine managed to get me in pretty quickly once. Also can you try ringing the department where you have your iron infusions? I have done thus in the past and they were very helpful . And obviously I can’t speak about your consultant but this time my infusion was also put on hold because of covid but my consultant rang me to have more bloods taken, so I went in on a Wednesday and Friday afternoon I had a call from the day case unit asking if I could come in over the weekend so maybe try speaking to the consultant again as well?

floralnomad not heard of iron patches either, thanks I’ve just ordered some. I’ve been ill since dc2 was born 4 years ago. I just keep getting stuck in a routine of having endoscopies and iron infusions but they no one really knows what’s causing it or how to stop the ulcers .

flyingloo I’m normally seen at the little cottage hospital in my town but that’s been taken over by corona patients. Normally I can call them and even if they can’t see me that week they’ll just tell me to call back next week and see me then. Now it’s all being done through the larger hospital where my consultant is based and it all just seems to be chaos.

Are the iron patches recommended by your haematologist . You dont know what you are getting on an Amazon site. They may not be right for you, or be of any benefit.

MP or Newspaper

This is the real tragedy that is happening now.

Fine to flatten the curve. Not fine to carry on refusing to treat 4 months down the line.

Wrong wrong wrong

You poor thing I hope you get help soon you are being let down so badly. Most hospitals are quiet, barely any covid patients and are doing very little else.

Aren’t stomach ulcers dangerous? It seems very worrying that you have then and they’re bleeding.

Surely They. need to get you a diagnosis and stop the bleeding, iron is only symptom control

Ask your GP to refer you as an emergency, sometimes it can work out. Your hospital may be able to give an infusion in emergency admission unit or have a way round it.