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[Dorothy]

I went to the GP in the summer for very painful and stiff joints (been referred to rheumatology with suspected psoriatic arthritis, but am still on the waiting list for my first appointment there) and had some blood tests to rule out other stuff.  Bloods came back normal apart from being 'very anemic'.  He put me on a course of iron tablets (3 a day) which have just finished. 

I didn't have any symptoms of anemia when I started the course, but I do now - breathless, giddy, out of breath after walking upstairs, arms ache if I try to brush my hair...  I've rung up the surgery and have an appointment for another blood test in a couple of weeks and then a GP apppointment in a month's time, but I'm starting to panic.  GP said if it didn't improve while on iron tablets then it could be 'very serious'.

Meanwhile, I'm trying to do a physical job (gardening) when I barely have the energy to stand up.  While worrying about what 'very serious' might look like.  I know you can't provide a solution - just really need to offload. 

[Kathleen]

Hello Dorothy

I am not medically qualified in any way but I was diagnosed with Ulcerative Colitis, an auto immune disease ten years ago plus I have been treated for anaemia so you might benefit from what I've learned.

If you do have psoriatic arthritis which is another type of auto immune disease this could be impacting your iron levels in spite of the tablets. There is a condition called anaemia of chronic disease where, due to constant inflammation the body actually prevents iron circulating in the blood to stop it from feeding the supposed infection and instead stores it away as ferritin. In these circumstances blood tests  will show low haemoglobin but high serum ferritin and you still have symptoms of low iron. The good news is that when your auto immune disease is treated and inflammation levels come down the body realises that the threat has passed and will allow iron to circulate in the blood. In the meantime anything you can do to lower inflammation will help and  you may want to look at eating a more plant based diet as this is proven to have an anti inflammatory effect.

As I said I'm not a doctor and I encourage you to do your own research but hopefully I have been of some help.

Take care.

K.

[Dorothy]

Thank you so much for your reply.  It's a relief to know that it might not be anything too serious.  It's just the waiting that is so hard.

The receptionist has booked me in with a different GP so that I didn't have to wait so long - my usual GP didn't have a free appointment for two months.  I'm hoping this GP might be a bit more helpful.  The last two times I've seen my usual GP, he's muttered about possible bowel/stomach cancer causing the anemia, yet he hasn't done any tests (probably because I don't have any symptoms other than the anemia).  Just wish doctors wouldn't talk about possible causes of symptoms if they're not going to test for those causes!

[CLKD]

VitD levels OK?

Hopefully you will get some answers, maybe take a list to the appt.?

[Dorothy]

Yes, all my other levels are ok.  Just taking months to get anything resolved, and all the time I'm aware that if there is anything serious going on, it's almost certainly going to be getting a lot worse during all this waiting!

[Taz2]

Hi Dorothy. Have you been told not to take the tablets within an hour before or after eating food or drinking tea or milk? These three things stop absorption.  Also taking them with a drink of orange juice or other vitamin c drink will help the iron get into your system.

Taz x

[Sparrow]

Dorothy try taking extra B12.  Even if your level registers as OK a higher dose may help in iron absorbsion.

[CLKD]

Dorothy it's appalling that any GP should mutter rather than discuss and 'do'.  If you get on with this particular GP next appt I would switch if possible. 

Let us know!  If you don't feel OK after this appt. maybe have a chat with a Pharmacist, they have private rooms these days.  Is there a leaflet in the box?

[Dorothy]

Thanks for your support everyone - it helps not to feel so alone!

@Taz2, I wasn't given any instructions by the GP other than taking 3 times a day, but the box said an hour before food or drink and no dairy, caffeine or eggs.  I stuck to that rigidly, although swallowing them on an empty tum did give me tummy pain.

@Shadyglade, thanks for your advice, I'll look out a Vit B12 supplement asap. 

@CLKD I'm hoping this GP will be better than the last one - can hardly be worse!  He is the one who booked me in for one lot of blood tests and then told me to come back in a month for a second lot.  When I went to see him after the second lot, he commented that the iron supplements hadn't made any difference.  When I asked 'what iron supplements' he said 'oh, I meant to prescribe you some to take after the first blood test.  Did I forget?'  I HATE blood tests, they make me really stressed and anxious, so I was hopping mad that I'd had a totally unnecessary one!

I have tried the pharmacist, but just get 'you need to speak to your GP'.   

[CLKD]

 . that is dreadful !  Obviously no bed side manner there then!  I get referred back to the GP 'cos I'm on so much already but I have found one that will look at MIMMS sensibly as well as contacting drug manufacturers for advice.

[yellowflower]

My mother had bowel cancer and it was her "anemic" status that set alarms bells ringing. Within a day of having that blood test done, she was in hospital having a colonoscopy and this led to a diagnosis of early bowel cancer. Mum is 88 and that was about 6 years ago. She is doing great and is cancer free. It was the receptionist at the medical centre that thought mum looked too pale when she took my father in for his appointment. This led to the doctor doing a full blood count on mum. The receptionist effectively saved mum's life!

[Dorothy]

Hi everyone, just checking back in with an update.

I've now seen 4 GPs, had numerous blood tests and my iron levels are 'constantly improving' - according to them.

I, on the other hand, am feeling worse and worse.  Breathless and achy all the time, but no one seems interested.  I've just stopped the iron tablets, as they were giving me constant stomach pain and diarrhea and none of the GPs were remotely bothered by this, just said 'some people are more sensitive to side effects than others'. 

I've bought myself some ferroglobin liquid in the hope that this might keep the iron levels up without giving me the chronic digestive troubles I've had on the tablets.  Had the first dose with no tummy pain - we'll see what it does to the 'other end' shortly!  But I am really worried about why I am feeling so ill - can't help feeling that if it's anything really nasty, by the time they find out what it is, it will be too late to fix.

Oh, and the joint pain that started all this?  Still getting worse & worse, the rheumatologist (on the basis of looking at my hands and feet) said he doesn't think it's arthritis and now no one wants to know.  Constant pain in one hip now, which is keeping me awake at night, but 'we all get these aches and pains as we get older' (I'm 44!!!) 

[bear]

Hi Dorothy,

Sorry to hear you're still struggling. Did they tell you what sort of anaemia do you have? There are different causes and iron deficiency is just one of them. Have you been tested for ferritin, transferrin and TIBC (total iron binding capacity)?

BeaR.

[Kathleen]

Hello again Dorothy.

I'm sorry to learn that you are still feeling unwell. I think a few of us have been told by our GPs that things are going well but somehow this doesn't translate to actually feeling better.

One of the best iron supplements is an otc product called Spatone. It is iron rich water which is easy on the digestive system. To further improve absorption I was advised to drink one sachet with orange juice every other day.

I wonder if your hip pain is a form of arthritis linked to your psoriasis? I think your only option is to go back to your GP and ask for more help. It can't be right that you are still suffering and it is your doctors job to arrange the correct treatment.

Take care and sending hugs.

K.

[Dorothy]

@BeaR I was told they'd tested for everything and it was iron deficiency anemia.

@Kathleen, thanks for the suggestion of Spatone - the liquid I've bought will only last a couple of weeks, so I'll look out for Spatone next time. 

Yes, I'm sure the hip pain is a form of arthritis - I have all the symptoms, but because I'm not exhibiting any signs in my hands or feet, the rheumatologist didn't want to know!  I'm at my wits end with this lot.  I have another appointment with a different GP at the beginning of April (doesn't help that there is an 8 week wait for appointments, so it takes ages to get anything done) so I am hoping this one will actually a) listen and b) do something helpful!