I have Lupus, RA, underactive thyroid, Sjorgens, Hemolytic anaemia, Raynauds etc
Like most of us I have general fatigue and have flares. It has been described as chronic fatigue but is affected by thyroid problems and anaemia. Each, as you are aware, take on a slightly different form. For the last four years I have had very low ferritin whilst my Hb is between 9-10.Low B12, low white counts across the board, low vit D. I have had anaemia symptoms including fainting, dizziness, exhaustion, ringing in the ears, palpitations, and so cold.
I have been lucky enough in the past to have BUPA cover. The neurologist, as I had restless leg, low ferritin and migraine suggested an infusion, 3 years ago. My GP said that I didn't fit NICE guidelines. As I have now been passed into the nhs I have restarted all the tests again. I saw the new consultant for the first time in October and the next appointment wont be until April. My muscle hurt constantly now, I have asked my GP for gabapentin instead for Tramadol, but I think its anaemia. Since October ,my periods have changed, since having two 10 days apart in November I went 4 months without and then bled for two weeks recently. I am now so low.
I cannot get a GP appointment until next Wednesday. A Gynae appointment for January was put off until the end of March and I am still waiting for the Rheumy followup. All I feel I need is someones blood!!!!!!!
Any offers.
Sorry for the rant just wondered if anyone had similar experiences.
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johare
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Oh Jo, sorry you're feeling so low. As you know I have always been nhs and yes, they are slow but I do believe they are thorough. I find the waiting between appointments seems to go on forever. My appointment at The Royal London has been cancelled twice now which is infuriating as I can't see the consultant again till all tests are done. Not being able to get a dr appointment till next week does seem a bit harsh though. Can you not plead? Maybe your periods are just on the way out. Blame the menopause. I started mine over 10 yrs ago and I still blame it for everything lol
Yep not moaning about the NHS, just how so many doctors can say I need an infusion but no one does it. I just want to try it to see if it makes a difference and if so for how long. I just sometimes feel that because fatigue isn't life threatening it doesn't matter that you haven't got the energy to enjoy anything.
I agree I think it is the menopause, the heavy periods just adds to the problem.
That's just what my new person said to me last week. It made it seem like it wasn't an issue then....she said they can get all the bloods back to normal and pain under control etc but the patient would still report fatigue and they didn't know why. Somehow I was made to feel like it was OUR fault!! 😃
This is awful! Your symptoms sound quite severe and they are putting you off, you can ask for an emergency appointment but again that my not be soon enough..
I would love to offer my blood but I can't give it due to having a blood transfusion..
For now do look after yourself, take lots of rest and be careful! 111 my be able to help?
I'm a bit weird, I don't have anemia but I have a blood condition called thalsemia beta trait which on tests makes me come up as anemic. I had the transfusion during my flair up as my HB levels were very low!
The blood going in is cold and feels really weird! My arm got stiff because you have to keep it straight and the blood takes about three to four hours to complete. After though I felt very energised and a lot healthier
I've had to have a transfusion, and I did feel pretty amazing afterwards, I'm rather shocked it's taking so long for them to find a resolution for you. Anaemia really isn't a joke or something they can just put off and hope will take care of itself. Can they give you a reason for ignoring your anaemia?!
The private doc referred me back to the gp as insurance wouldn't cover it. Gp referred me to new consultant. They have started again. Due to NICE guidelines I have to be under a certain Hb to qualified despite ferritin being 4. I have taken suppliments for a long time and due to bowel problems they are not absorbed. Also I have liver haemangiomas and the liver specialist said I should not take them long term. I as an ex nurse understand the need for guidelines however, if you fall slightly short and it is not life threatening, it seems to be over looked.
The new guy seems to be more interested in confirming lupus yet again after three positive ANA.
But there you go we have discussed this before. Thankyou
I have heamalytic Anemia, it took to the point of me having a heamaglobin level of 2 before they gave me a transfusion. Took months and months of going to see the GP and begging them to do something. They told me it was all in my head and that I had post natal depression. Eventually it got so bad that a family member rushed me to A and E and thats when I was finally given a transfusion and then high dose steroids. Steroids are the only thing that keep it under control for me now.
Having post natal depression and anaemia that low must have been tough as they would blame one on the other. But bloods don't lie they always say.
My haemolytic anaemia is a new diagnosis for me and they had to cancel out all other bleeds first. The menopause just adds to it (don't get old). So I will have to go and beg to the GP next Wednesday, maybe I will tell him about having my arm down an Ikea toilet on Monday after fainting. It was meant to be a quick trip to look at a new mattress with my daughter, Didn't get the mattress, just a wet arm and a walk of shame.
Gosh that is awful! You definitely need something sorting. If you are fainting surely they have to do something about it. I know it's so frustrating when you feel like no one is listening to you!
Hi Jo, I can relate only too well to how you feel in yourself, thankfully not to your frustration with the whole anaemia thing. I had a hemi colectomy twenty five years ago and have needed regular injections ever since
I also have anaemia, and am unable to tolerate oral supplements as they affect my Crohns and my colitis (the two are different for me) so have regular blood tests every three months and about twice a year an infusion, currently they're using Ferrinject. I've never had a problem getting this however every time I have changed GP I have to go thru the rigmarole of explaining why. The infusions are pretty amazing, even with all my other health issues, I now know my body well enough to detect the small significant differences that mean I'm getting low.
Persevere Jo, anaemia of any kind is not a ' nothing' illness, it is still a killer in some instances and no one least of all your gp should be ignoring it. Do you take oral iron? Can you? Good luck my friend xxx
So sorry to here about your bowel problems. They leave you with the ongoing problem of making up for the lack of absorption. Thankyou, for your input. I just needed to know that the thing that I was hanging on to would be worth while. I agree that we know our own bodies after so many years of these conditions, and sometimes not enough notice is taken. I have taken oral iron for three years but I have IBS and it is not absorbed, it usually just gives me constipation.
The oral iron that I took for years caused me such a severe problem that eventually I had to have my lower colon restructured, I now proudly tell people that I've had BOTOX fillers in my cheeks............dont actually specify which cheeks tho.....
Before I was diagnosed with lupus I saw a consultant for chronic fatigue who gave me B12 injections. That was stopped when I transferred to the rheumy for lupus.
Get them checked again, I used to take a B12 supplement from Holland n Barrett, Not the one with loads of other n bits, just pure B12, I tolerated it and it helped stretch out the time between injections
Sorry you are so poorly. I was seeing NHS local hospital for years and it was hopeless. When I ran into so much trouble that I thought I might have to stop work I saw a lupus specialist privately. He then put me on his NHS list (sadly he has just moved on but he has been brill) and he prescribed vitamin d for me as he said it was really important to immune health...so maybe your GP can help with that? When my ferritin was 4 and I was low on Hb too and I couldn't tolerate iron supplements they gave me an iron infusion. Maybe if you could get your iron stores up your hb might improve?? Your GP should be able to organise that too if they think it wise. Also have you tried pain patches.....butrans or similar ....I have found them good but nothing as good at killing pain and keeping me going than co-proxamol. I can't forgive the medical community for taking that away from us all.....
But I digress......
If we hear of any loose vampires we'll know where to look😃 hang on in there ...If you have a friend who makes you laugh get them round as they might give you a boost.
Yep especially if they look like Spike from the Buffy show (my kids watched it) . Sorry should have said, take vit D/C and calcium as low also to help boost and absorb iron levels. My sticking point is still the infusion as I don't meet the criteria despite doing everything else they have asked plus other things I have suggested. I will ask next week for a pain review, but I feel that many muscle aches will be relieved if my iron levels increase. Many thanks for your support and friendly vampires.
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A lifetime…and still no diagnosis.
I still dont understand lupus
Still totally confused
ANA now negative but still ill
