Anemia Real concern need some advice

[Dedikodu]

I am breathless and fatigued and diagnosed with Anemia, but Iron/b12 levels are normal/high not lifestyle or food-related.

I also had a stiff neck and all-over pain on rising in the morning so they first thought it was Polmalgia and put me on steroids but it didn't get the reaction expected from Polymalgia so was tapered off steroids

I had been having blood tests and when one came back showing my Serum Immunoglobulin M rate was 3... I was told they were putting me on the 2-week urgent Cancer haematologist appointment .... but it didn't reach that far, and I was put on triage and got a phone call to say on looking at past blood tests no trace of cancer phew....

So back to square one and the breathlessness and fatigue is a little worse from the initial stage from someone who could easily do 10,000 steps I am now down to less than 4000 steps and need to rest after ...

I am concerned as this Anemia is untreated with no suggestions of medication or treatment for more than 4 months. And know word from the Dr if further investigation ..which worries me and never had an actual face-to-face meeting but done by phone mainly on my instigation ... I also think there may be some personality cognitive change but that could be down to anxiety and lack of sleep with worry ...

any help or advice gratefully received thank you

My last blood tests showed .. this below but have been worse ...but these are out of range ...

Haematocrit 0.335

Haemoglobin 106

Neutrophils 8.29

Platelet Count 498

RDW 15.3

White Cell Count 10*9/L

Serum Alanine transaminase 9

[SnazzyD]

Could you say what your Pred taking Plan was, as in time on each dose? Did you get any relief at all? The dose is crucial to getting the desired result. Sometimes too low a dose is given or for not long enough and it is decided it isn’t PMR. Not everyone gets the miracle relief in a few days, especially if the dose isn’t enough.

Immunoglobulin M can be thrown off by autoimmune conditions as well as cancer. The same for anaemia. Have they stopped looking for causes then, not even gut based? Are they treating the anaemia at all?

[Dedikodu in reply to SnazzyD]

Thank you Snazzy the dosage was four tablets x 5mg total 20 ... was on this for 3 weeks till new blood test ... On seeing them The DR said they didn't meet the expected results for PM. So tapered me off them . They have ruled out Cancer... and my Husband as you suggested it could be an autoimmune condition. I was told by telephone by the surgeries clinical nurse, of the cancer triage the result, ruling out cancer and wasn't going to say anymore. I had to ask her is there going to be an ongoing investigation as had no treatment for anemia ... she said she would phone me back that day or today after speaking to the DR .... didn't phone that day this is now the next still waiting..

[SnazzyD in reply to Dedikodu]

“Didn’t meet the expected results for PM”? What did they mean by that? Did you get any relief at all?

Was it just the Neutrophil count that was raised out of all your white cell types? The total count is made up of more than just the Neutrophils as well which would have been on the report. If they are all deranged then that says different things to just the one being out of whack. Pred can raise the Neutrophil count but it is temporary so when was that taken in relation to the Pred?

[Dedikodu in reply to SnazzyD]

I was not on Pred with the last Neutrophil count was taken and raised I don't know all the white blood cell types so show what in part was said in this report not the blood test checking on cancer ...

Basophils 0.06 10*9/L no change in range

Eosinophils 0.09 10*9/L 0.02 decrease in range

Haematocrit 0.335 +0.005 increase out of range

Haemoglobin 106 g/L +4 increase out of range

Lymphocytes 2.73 10*9/L -0.32 decrease in range

MCH 27.2 pg +0.9 increase in range

Mean Cell Volume 86.1 fl +1 increase in range

Monocytes 0.78 10*9/L -0.06 decrease in range

Neutrophils 25 F 8.29 10*9/L +1.09 increase out of range

Nucleated RBC 0 10*9/L no change in range

Platelet Count 498 10*9/L -3 decrease out of range

RDW 15.3 % -0.1 decrease out of range

Red Cell Count 3.89 10*12/L +0.01 increase in range

Serum Albumin 40 g/L -2 decrease in range

Serum Total Protein 76 g/L +5 increase in range

White Cell Count 11.95 10*9/L +0.69 increase out of range

[SnazzyD in reply to Dedikodu]

Did you get any relief at all from the steroids?

[piglette]

I assume as you have been diagnosed with anaemia that your doctor is aware. My doctor said to me at one point ‘do you know your are anaemic?’ I replied ‘No’ and that was it. I just went on my way. Having said that when I had my hip ops I did need a couple of blood transfusions.

[Dedikodu in reply to piglette]

Yes, diagnosed with Anemia but the concern was more on the other things in the blood test the white blood cell count the high inflammation, the Serum Immunoglobulin M rate being 3... etc ... so no treatment was advised for the anaemia which i believe is making me fatigued and breathless

[SnazzyD in reply to Dedikodu]

It is bizarre you have been left. I would demand a face to face appointment because you are no better and you need a plan.

[PMRpro Ambassador in reply to SnazzyD]

I think all that fits with anaemia of chronic disease - but the way to manage that is not take more iron but treat the underlying disease. Like you I find it utterly bizarre they aren't concerned.

[piglette in reply to Dedikodu]

I would go back and ask your GP about it and tell them about the fatigue and breathlessness.

[PMRpro Ambassador]

I think your conversation with SnazzyD has covered all I would have asked - and like her, what are your GPs messing about at? You don't tell a patient they are on the Cancer Pathway without explaining what is happening at all stages. My suspicion is that they haven't a clue!!

Do you happen to know what the IgG and IgA levels were? IgM rises and falls again in response to an infection. It isn't immediately a sign of cancer. That said - there is obviously SOMETHING wrong that is outside their skill set so they need to refer you urgently.

[Dedikodu in reply to PMRpro]

I know the IgA was 1.62 within range and the IgG said not assayed look to paraprotein but test not completed. I have since finally got a telephone call from the clinical nurse passing on a message from the surgery DR saying the Cancer Haematology said no sign of cancer so no further need for an appointment to see a DR needed. I said but have had no treatment for the Anemia and she said since it is at 10 it has to be at 8 before treatment is needed just take more Iron and a healthy diet ( when already told before was not Iron deficient or lifestyle related ) ... At this point, my husband got angry and said he wanted a face to face appointment, she resisted saying no need ... but my Husband insisted saying he might take it to the ombudsman she said she would speak to the DR and get back to him, he said today ... we then got a phonecall from the receptionist offering a face to face next week but not with the Dr that is meant to be my DR who I have never met. I don't know if my Husband has helped or hindered as he was angry. I can't understand why they don't want to investigate further for autoimmune as my ERS inflammation is at 120. And I am breathless and fatigued .. I don't know how we should approach this new Dr ... we will have to think this through any suggestions welcome

[PMRpro Ambassador in reply to Dedikodu]

I think it is indisputable that you have SOMETHING and it has been ignored.

It is quite possible that the anaemia is what is called "the anaemia of chronic disease" - it certainly fulfils at least some of the criteria. The treatment for that is to treat the disease that is causing it. Not tell the patient to take more iron - that is wrong and could cause problems. The nurse was also wrong - in my opinion at least - to say there was no need to see a doctor. She is a nurse, they can be absolutely wonderful but she didn't go to medical school to identify whether there is medical need or not. You disbelieved her and I suspect she felt slighted and got defensive.

I think you should set out your concerns in a bullet list, with a copy for the doctor and for each of you. Don't get angry, you have your day in court now, use it well and don't upset the apple cart just as the wheels start turning. Bear in mind that it is said that on average it takes 10+ years to diagnose autoimmune disease - the presentation can be very vague, the symptoms overlap and in general it is WAY beyond the average GP to recognise them. They are Generalists and need to know a bit about a lot of things. AI disorders are mainly rare, and may not present like the textbook suggested when they did their rheumatology module - in fact, I'd say they almost NEVER present like the textbook describes them!!! You need to see a specialist - not entirely clear WHICH but I'd say start with a rheumatologist.

Your practice recognised one or two of the jigsaw pieces and asked the expert who had the picture the bits obviously belonged to - but that was only one corner. Someone needs to take a bigger overview.

msdmanuals.com/professional...

[Dedikodu in reply to PMRpro]

I think the nurse just didn't like us questioning the message she was asked to relay from the DR expecting us to be compliant and touch the forelock ...and was the gatekeeper not wanting to give out appointments let alone face to face one. My husband like you said we should commit bullet points down to paper ready for our visit but I think it may upset the DR trying to tell him his job...or being a Google Patient .. My worry is finding someone that will take the bigger picture and as you say overview . I think at least I need another blood test to see what direction the markers are going. I thank you for the Link and hope for the best ...

[PMRpro Ambassador in reply to Dedikodu]

You aren't telling him his job - though the practice does appear to not be totally clear about their duties!!! The bullet points are YOUR concerns and how they haven't been addressed, that isn't the same thing at all.

Don't say you got stuff from Dr G, you got it via the PMRGCAuk charity! I get stuff via Dr G - but it is the same medical and scientific literature that is available to them using PubMed. And I do have an appropriate degree ...

[SnazzyD in reply to Dedikodu]

Where did you go on holiday? Were you ill at all while you were there?

[Dedikodu in reply to SnazzyD]

We were in Istanbul ... and it was when we came back I made my initial appointment with a Dr because whilst there I found in the morning I found it hard to get out of bed due to overall pain which eased off as the day went on ... also found it hard to turn my head backwards or sideways and couldn't lift my arms over my head... We first put it down to the mattress and pillows not like at home but hard .... When I came home made an appointment and the Locum suggested it to be polymyalgia and took bloods ... We are not anti-Covid inoculations but even considered it being the cause as we had just had both the Flu and COVID jab just days before leaving for holiday...

[PMRpro Ambassador in reply to Dedikodu]

Not the cause as such - but the trigger that set off an existing predisposition to develop PMR. It can be the vaccine - or the illness the vaccine is to protect you against, or a whole range of other things which upset the immune system - and eventually one is the straw that breaks the camel's back and the immune system goes haywire, can no longer recognise your body as self and turns on it and causes inflammation, We call the symptoms PMR.

[Dedikodu in reply to PMRpro]

True and we agree as said considered as to much of a coincidence we thought but unfortunately in the past, and I am sure my GP wouldn't either admit or can do anything about it.

[PMRpro Ambassador in reply to Dedikodu]

But the point is, if it hadn't been the jabs that week it would have been something else that tipped the scales - PMR existed long before Covid and Covid jabs, many cases of Long Covid are very similar to PMR or other autoimmune illnesses. Even protracted stress will do it.

[HeronNS]

I don't understand all the readings and because I'm on phone find it difficult to search, but just want to clarify that your ferritin level was checked when the anemia diagnosis was made? As stated in the thread there is a condition where a person may seem anemic from haemoglobin readings but ferritin may actually be quite high, in which case iron supplementation does more harm than good. Certainly your medical people should be communicating in much more detail .

[Dedikodu in reply to HeronNS]

My Ferritin Level was 441 ug/L out of range. I agree they should be doing more...