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
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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?
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..
“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?
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
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.
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
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.
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.
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
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.
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 ...
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 ...
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...
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.
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.
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.
Not sure if it is relevant to your case but I too was very breathless and fatigued and saw the Doctor and had blood tests. Haemoglobin was 10. My Doctor’s practice only refer below 10 so I was sent away. 10 months later when I was even worse a serum ferritin test was done and it was 4 which is very seriously low so put onto iron and immediately sent for endoscopy and gastroscopy and found to have gastric polyps which I had removed. Did you have a serum ferritin test done?
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 .
Last year my ferritin levels was 15 following many months of prescription iron tabs. My haemoglobin levels is normal. My Rummy agreed with my GP that low ferritin may be impacting my ability to taper pred below 10mg. Following iron infusion last July, my levels increased to 168. I am now down to 8.5mg however my ferritin levels have dropped to 85 and not feeling too good for the last month. Rummy follow up due in a few weeks so I'll stay on 8.5 until then.
I would suggest that you check ferritin levels to see if that may be an issue. My body is not too good at taking up iron from my die.
I can see my results on line via Patient Access app and saves phoning my GP.
Hi, your blood tests are much like my own last year when my GP investigated the cause of my lightheaded ness and fainting. The first blood tests indicated anaemia and further tests identified raised IgG paraproteins. The low level is indicative of MGUS, which you might want to look up. The GP referred me to Haemotology. Significantly like you I have been offered NO treatment, which I can only assume is the correct protocol.
At the same time I had investigations into my acid reflux and gastroscopy showed a condition in my lower stomach which results in poor absorption so I have improved my non meat diet and drink green tea with honey first thing which helped a lot. Recently I was advised to take Vitamin C and this seems to be helping as a general tonic.
The physical symptoms you describe sound very much like PMR for which sadly steroids are the only effective treatment, so I hope your doctor gets to grips with current practice on the identification and treatment of PMR and gives you the answers you and your frustrated husband need.
I can echo the comments about Anaemia and no treatment. After taking a long time to pick up after a very nasty cold in the summer I was suddenly hit with an attack of extreme fatigue . I had an ongoing cough but no breathlessness, dull aches across back of my head and felt like tubes going down into my neck but despite me saying I was feeling like I did. at the start of an autoimmune reaction to a flu jab the previous October, the Dr thought it was post viral fatigue A day or so later she called to say my blood test showed I had Anaemia. I had to give a urine and stool sample and she said she would call me to discuss further. Both test were negative and when I didn’t hear from her I rang to chase up and was made to feel like a time waster as she said the tests were negative. I can’t remember what she said when I asked what about the anaemia but it was rather dismissive. Fortunately I was still on the books of my respiratory consultant from my previous autoimmune illness and had already spoken to her after my visit to the Dr to say I was beginning to experience the same sort of random symptoms I had back in October. She agreed it could be post viral but must have then checked my blood results when they went on the system because a couple of days later she rang to see how I was feeling (worse) She was concerned at high CRP, platelet count etc so asked if I could come in to her clinic that afternoon. More blood .various tests and ultra sound all clear for respiratory issues so she booked a PET scan and said she would also refer me to Rheumatology …. Diagnosis initially GCA but now referred to as LVV. My main symptoms were the fatigue, cough and blurry eyes although I did also have a period of aching jaws. My respiratory consultant and I felt there was a link to my previous autoimmune illness but the Rheumatology one I transferred to wouldn’t even consider the possibility. Apologies this has gone on a bit but I saw some possible similarities given your Anaemia, fatigue, cough and reference to a flu jab (which is now recognised as almost certainly the cause of my first autoimmune illness) My experience might highlight some questions you could raise with your GP if they are drawing a blank. Good luck on getting things sorted
There is ALWAYS a link with previous a/i illness in that once you have one, you are more likely to develop another. However - do you mean the LVV relating to the GCA or have you had an earlier a/i illness?
when in hospital previously the many consultants investigating the cause of my autoimmune syndrome could only tell me what I didn’t have especially when a PET scan failed to show anything to give them a clue. (This included vasculitis) However it was well over a week later when I started to develop infiltrates in my lungs. Strangely although it was significant the level of this didn’t develop to the extent they would have expected considering the severity of my illness and to their amazement cleared very quickly after having IV Pred and Oxygen could be reduced and stopped at quite a rapid rate. (I’ve even wondered if I might have had vasculitis then even though not showing itself at the time of the PET ) . At my first meeting with my new Consultant he was adamant that I had GCA (showed me the PET) and said it was a new illness and nothing to do with anything that had gone before. He got angry when I tried to discuss and accused me of not believing I had GCA although I had told him I did. Before the consultation I had written to clarify some discrepancies and wrong assumptions detailed in a letter confirming my appointment so that we didn’t need to waste time etc ( He said he hadn’t received it so I gave him a copy) It was several weeks later when I got his follow letter which stated I had LVV. Although I don’t have any headaches (or joint/muscle pains) I do often get some feelings in my head which make me wonder if I might have GCA and I don’t know how he came to the conclusion (if he has) that I possibly don’t. He’s not the sort of person I can ask and it doesn’t seem to make any difference to my treatment so I just tend to accept it as LVV. When I researched LVV online most of the info and trials I found mentioned LVV then talked about GCA so I do find it a bit confusing although I do know it was my Aorta and branches that he showed me were inflamed at my first consultation.
They are both now being considered as part of a spectrum of disease which they are mooting should be called GPSD, GCAPMR Spectrum Disease, which will also encompass LVV and Takayasu's arteritis since they are apparently all similar in many aspects.
Personally, I have difficulty with doctors who are so dogmatic about a/i disorders since there have been so many changes in ideas about them in the last 10 years that very little can be said to be fixed in stone. I couldn't stay with a doctor like that - it would drive me demented - even if am not already!!
Have you at any point had a p-ANCA test done? Was just having a quick look - and infiltrates can be caused by a few vasculitides which are difficult to diagnose and not necessarily apparent on PET-CT. I know there are a few overlaps now being discovered. I think someone has suggested that one vasculitis may morph into another - or even happen at the same time - with my view of a/i disease I think it is perfectly possible that someone might have their own particular version, OC syndrome ...
Thanks that’s interesting. No I’ve not had any other tests. I did ask about Aorta scan as I saw that should be part of regular monitoring (he says he will arrange in due course) my Respiratory Consultant, another Doctor ( most at my practice are very good) and I had all used the phrase of my autoimmune illness morphing into another. It is as I’ve learnt more about vasculitis and its different diseases that I’ve wondered if I might have had an illness which fell under that umbrella back in October despite it previously being ruled out. I was super fit and healthy having weened off of Pred by mid May then after catching my husband’s nasty cold driving back from Italy in June it all started up again in early July. At the time I thought perhaps my body was trying to fight my cold and when my immune system kicked in it went into overdrive again or that the ingredients of the flu vaccine may have got reactivated and caused another autoimmune reaction. It seems it’s often a mystery what triggers vasculitis so who knows? If it wasn’t such a nasty thing to have, I’d be really fascinated by all its twists and turns.
It is fascinating and really interesting but so many rheumies either don't realise that or it is too hard for their little brains!!
No hurry with the aorta screening - the PET will have given a size now and Prof Quick said to me recently it is a very slow process developing an aortic aneurysm.
Got a couple of questions.What was your B12 result and was it a Serum or Active test?
Did you have a Folate or Vitamin D test?
Have you been tested for Pernicious Anaemia?
If the answers are No , to the last two questions you need to get to the GP and request these urgently because of your symptoms.
You also need to chase up a referral to Haematology because even if you don't have cancer if you still have abnormal blood results and resistant anaemia ( or high iron) you need more specialised tests to rule out blood related conditions and get treatment advice that your GP does not answer.
An Active B12 test is required if you have Anaemia and your results do not improve after treatment with oral iron and oral vitamin B12 .
You can have normal Serum B12 results but still be B12 Deficient , this can be a sign of Functional B12 Deficiency, which causes the same resistant and recurring Anaemias , abnormal blood cell size and volume, and resistant and recurring Vitamin D deficiency . Eating a good diet doesn't change it because it is caused by malabsorption and metabolism of B12.
This requires treatment with loading doses of B12 via injection , then, without the need for further B12 tests , a three monthly injection for Life.
Folate Deficiency Anaemia is less common than B12 Deficiency Anaemia but causes the same symptoms and needs treatment with infusions if it has not been solved with Folate supplements.
Vitamin D deficiency , and Vitamin D Insufficiency can both cause chronic anaemia which is hard to treat .
Like Anaemia , Vitamin D deficiency can also be caused by B12 or Folate Deficiency or Insufficiency even if you take oral supplements or have a good diet.
Pernicious Anaemia can occur in people more commonly over 60, and you don't absorb B12 in the stomach.
Taking various medications like PPIs , Antacids , Steroids ,
NSAIDs, Statins and various nerve health related medications can also reduce the absorption of B12 and Folate in the stomach.
You need to get the B12 , Folate or Vitamin D blood tests before starting any new supplements.
And you should stop these supplements for four days to a week before the blood tests to ensure the supplements don't give inaccurate blood results.
After the blood tests you and results if you are offered supplements, ask if your GP provides liquid versions or sublingual oral tablets .
Because if you have an issue like malabsorption of vitamins and iron in the stomach because you take long term medications that affect your stomach acid standard oral tablets won't be absorbed properly , and it will take a very long time to reverse the issue , if at all on standard oral vitamins , Folate or Ferrous Iron supplements.
If you have no markers of other Deficiency the type of Iron you take may not be being absorbed well and vitamin Insufficiency occurring at the higher levels in the range.
The NHS , unfortunately, don't prescribe the most active and gently absorbed Iron on prescription m it's only given as infusions in extreme cases at hospital, for some ridiculous reason, like a few pence more cost.
Most people require active Iron , known as Iron Bisglycinate, for better absorption with less side effects.
It's used in other countries for pregnant women , older people and those with Anaemia caused by malabsorption.
It doesn't cause constipation or itching like Ferrous Iron and it stores longer in the body.
I use Solgar Gentle Iron. You can get it from Amazon or some Health shops,
It's important to take iron early in the day after a meal with Folate and Vitamin C.
This creates the same combination that you receive in a iron infusion via IV to help improve iron uptake.
Whilst you have Anaemia that is hard to treat it's better to take these as quality active supplements until the issue is resolved.
Increasing the foods in the diet is also important to help improve the rate that certain pancreatic enzymes are released too which improves how your body reacts and absorbs vitamins and minerals from food.
A Methyl Folate is an active supplement which is a better option ( MTHF -5), if you can't manage acids , you can get liposomal non acidic Vitamin C to add to water.
I use Natroliq non acidic Vitamin C drops.
It's available from Amazon or their own website.
You only need 0.5- 0.75 per day on the dropper , not the high dose they suggest each day ( as the rest would just create very expensive wee) .
Sublingual B12 dissolve in the mouth tablets or spray needs to be taken separately from other B vitamins because it doesn't absorb as well with Vitamin C or Iron.
You could take it after dinner , you can take a Vitamin D spray at that time too.
I use BetterYou sprays for Vitamin B 12 and Vitamin D each evening , between my B12 and Folate treatments.
If you are taking steroids , PPIs or Statins it's worth choosing active , sublingual or liposomal supplements as part of prevention of vitamin deficiency can be helpful when your B 12 , Folate, Vitamin D or Iron results are below mid range in blood tests.
I had resistant Anaemia and abnormal blood markers because of untreated Functional B12 and Folate Deficiencies. It requires long term treatment with injections and infusions.
I also have Pancreatatic Enzyme Insufficiency which is treated with prescribed PE Therapy.
My Vitamin D deficiency and resistant Anaemia did not improve on supplements for years until my B12 and Folate Deficiencies were treated. Within three months of my B12 and Folate treatment being included my blood markers were normal , Anaemia was treated and within six months my Vitamin D was no longer Insufficient.
It needs treating properly as soon as possible because the longer it affects your blood markers the more likely it is that you will begin to have B12 / Iron related joint pain and stiffness and fatigue , long term neuropathies can begin, insulin resistance can increase causing Type2 Diabetes , irregular fat distribution and muscle wastage in the arms and legs also occurs and the amount of your medications you absorb can also be affected.
Although have not had any of your symptoms, except for BREATHLESSNESS! Was getting over a bout of COVID so thought it was related; doctor ordered CHEST X-RAY and discovered some fluid in lungs. After taking the first fluid pill: voila. the huffing and puffing disappeared. So, just a thought for you but know that you have many other things going on. Good luck
Well, I had my face-to-face appointment with a Dr, armed with my list of bullet points and concerns. Took my husband with me... Whilst understandably the Dr didn't say the Nurse who gave me my results and said there was no need for further investigation or new appointments needed... was wrong, she agreed instead with us that something was wrong in the blood tests that needed further investigation .... she has ruled out Cancer as per the Cancer Haematology results if anything it indicates low-risk MGUS which will need 3 months check-ups. She is going to do new blood tests to see the direction of the out-of-range markers and speak to me by phone in two days about the new results... For the Anemia she has done nothing yet ( as not b12, Folate, or Iron deficient, as all are high ) She doesn't think blood infections it wouldn't last 5 months. I mentioned Rheumatoid Arthritis she said lets wait on the blood tests and if acted on would take time ...she hasn't ruled out Polymyalgia altogether even though the Pred had no magic effect when given last time I'm a little more hopeful ... My husband asked could it be possible I could see from now on the same DR each time to keep consistency...she has agreed she would be the contact. As she has been the 5th Dr at different times in 5 months for the same problem..,
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PMR/GCA monitoring and bone supplements 
