As you know, I am always trying to help others in how to deal with their GPs when they prove to be less than we should expect in their care of us.
Well this is a case of ‘physician heal yourself’!
I don’t want to bore you all with the numerous details but let’s just say that for several years I have had all of the symptoms of anaemia.
Every time they have run the usual blood tests they come back ‘normal’ although many of them within one or two points of abnormal.
There is always a presumption that I am tired and thin because I live with bronch, AF and dilated cardiomyopathy. On my annual visit to my heart man my heart was no worse, my bronch is stable. I am dragging myself around and very breathless. My heartman noticed that for 5 years my alkaline phosphate has been raised considerably. He wrote to the GP pointing this out and asked for other tests which are not usually done by GPs but can show anaemia from a different aspect.
Results came back. Abnormally low HCMC and 2 others. Both of the docs I usually see ( and who have insisted all is normal up to now) are on holiday.
Yesterday I saw another doc in the practice. Although the HCMC is 10 points below normal she declared it normal and the same with the other tests. As for the high alkaline phosphatase her response was - well it has been high for 5 years - not ‘we have failed to investigate this for 5 years’
She had no suggestion for further investigations or treatment but suggested that I take a multivitamin!
At 69 this is insulting as I would have thought that she would have realised that I have been down that route many times.
So I am treating myself with Vit B12, iron and multivitamin sprays.
Meanwhile I am deciding whether to brave the gauntlet of ridicule in the doctor’s surgery again or start a conversation with the practice manager.They take the tick boxes on the computer as the answer and completely ignore my symptoms.
I will not say again what I think of GPs as you all know it but here, in my own case, is the proof
How unbelievably maddening. Sooo frustrating. You are always encouraging us to insist on referral to consultants. How about insisting on seeing a haematologist? This is obviously complex, unusual and needs specialist involvement.
Agree with your comments littlepom, this is very common practice although now, with patients being able to see results of any tests it becomes easier to query results, but not necessarily easier to get the required investigations and treatment. Hopefully your self treatments will improve the problem.
Oh dear not good Littlepom! If you can't get through to your doctors then I don't know who can as like you said you have been there done that etc.
The NHS only treats according to their tests and guidelines and many of these are out of date. They don't treat for optimum health. For example I have a very borderline underactive thyroid so the doctor gave me a very low dose of thyroxine. Now they say my levels are normal but I asked my doctor why I still have all the symptoms. Her answer? They don't do comprehensive tests on the NHS but only a limited few. No wonder people go private! x
I know so many people in your position and there was an article in one of the newspapers yesterday about the dire state of thyroid problem diagnosis and treatment. Not pursuing an issue to the point of helping the patient feel better is worse than doing nothing.
Yes I have heard a lot about this on the thyroid site and some there are forced to go private to get the full range of tests done. I think the NHS is slowly becoming just a safety net for many conditions which might not kill you but make life miserable. x
Ugh! 😤 Infuriating. I think Kate is right. You need a specialist. My lung doctor found I was a bit anaemic and said " this problem is common in women of a certain age" . This is probably true though. But he didn't say I needed any extra iron or vitamin supplements. I just eat more spinach , chicken and eggs. Sending love to you and Twinkle. xx 🐾🐕🙋
Yes I was told I was low in foliate and just given folic acid pills. This can lead to anemia too. All I got was a phone call from the doctor with no mention of dietry ways of improving this such as eating more greens. x
I stopped taking them coz I am on too many meds as it is. I am eating a lot more greens and have found a wonderful way. Iceland do a frozen packet of 4 separate greens which you just shove in the microwave for 3 minutes. It is kale, spinach, seaweed etc. all ground down very small. They are quite tasty. x
Being on my own I eat too many ready meals so I just add greens to them now. I even eat salad leaves which I don't like but hey you do what you have to do don't you? x
I’m going to look for that ..... have to look for an Iceland first though .
The trouble with being very good at what you do is that there’s nobody better to help you when you need it. I think practice what you preach is relevant here. 😉😘
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Thanks Don! Maybe I will either be feeling better from my self medication or more able to start a fight when I come back from my holiday.
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I hope you have a great holiday and the sun shines for you. Nothing like a bit of sun for recharging the batteries 🙂💪
It seems different doctors vary in their normal. My rheumatologist notified my gp regarding low haemoglobin, but no action was taken until I collapsed and was taken to A & E. Eight months later taking 3 iron tablets a day, still tired, and BP very low, but just a lot of oohs and ahs., and come back in 8 weeks. Not much help to you I'm afraid, but your not alone lol. Jane
I’m sorry that you had to get to the point of collapse and that they still haven’t got to the bottom of it. My problem with the GPs failure to investigate the reason for these levels is, it seems, a common problem.
LP,I feel the need for a conversation with the practice manager with reference to the fact that the local clinical commissioning group might well be interested in your dilemma,i was going to add good luck but i reckon your fortitude and resolve will be all that is required.
Wow what a ridiculous response from your G.P. However, a G.P.knows a little about everything but does a hospital consultant, who is a specialist not have precedence over their views? They have made a written request, the results show further investigations or treatments are necessary but you are no further forward! Why not is the question. You must ask your doctor again and not be fobbed off.
You have such a wealth of knowledge, and no one knows your body better than yourself so would you consider seeing another doctor in your practise and hopefully get a positive outcome and have a follow up?ALternatively, get in touch with your heart specialist and report your G.P's refusal to action further and see what happens then.
You have enough to contend with without hitting this brick wall so good luck. I think the bottom line though is definitely to do with budget cuts and why so many people are now going down the private route.
Thanks Titian8 for your helpful and wise words. The doctor I saw is not the head of the practice, who is my doc. But away on holiday. My heart man is his friend and to be honest he did order the tests as soon he got the letter. I shall have to try again with him after my holiday. A daunting prospect because he is quite fierce and has no time for me because I refuse to take anti coagulants as they made my bronch lungs bleed.
Thankyou for the support as usual sassy. It seems that as long as they aren’t required to think outside the box or start a process that is going to drain their budget some of our GPs can be quite cooperative, mine included. It took me two years and a private visit to a cardiologist to pursuade them that my heart was failing. Now they happily dole out the drugs. I am glad that your GPs are so good with Pete and hope that nothing raises it’s head that they find difficult to cope with. xx
I too had been going to my doctor when I was 65 saying I was getting so tired and it was put down to my age !! Eventually I was sent for a blood test which showed I was aenemic and was told I would have injections for life as I could not absorb from food - my doctor did apologise for not sending me for blood tests earlier - I have been having them every 11 weeks since - and I am now 84 - I know when I am getting low - all the old symptoms reappear - and I was told to have them when I feel the need !
Ah the good old vit B12 injections. They keep telling me that this test comes back normal but didn’t even test for it this time. I’m glad that you got sorted.
How frustrating for you Littlepom. I wanted to send some solidarity as you have been so helpful and encouraging to myself and others new to this battle ground!
Thankyou so much Dibola. Sometime, in some way I will get this sorted. Right now it is down to self medication, which after all, is what I do mostly with my bronch.
Well maybe not helping here but I've been so depressed about the way I've been treated I got up this morning and thought I have to find some way to fight back. Dont know how yet but will do something. Us copd people I feel get the worst treatment from gp. Sorry if I'm not helping just venting my feelings. You take care of you littlepom. Maz
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Hi maz, vent away - we really have to do it and we all understand the frustrations. It is no better with bronch, which I have. Doctors are just not trained or prepared to deal with other complications which living with these conditions bring on. On a forum like this, with a concentrated sample, they become very obvious and so do the docs failure to investigate and help. So it seems that it is down to self medication with supplements which so many are already doing.
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Yes your are so right littlepom. I see what everyone means here no help unless you push for yourself. Its soul destroying for people who feel unwell to have to keep fighting Surgeries and Doctors. 5 Lung infections and a wheezy cough since January and God knows how many courses of antibiotics and still tell me that I dont need an inhalor yet and wont send me for ct as dont need to see specialist. I'm saving to try and pay for appointment. I've started today having a look on line at other surgeries in are what I'll do, well dont know yet. Anyway hope you are well tonight and take care Maz
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Should have said I've got ventolin inhaler
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Oh dear your GP is way out their depth. Keep pushing to see a consultant who can give you a ct scan to find out why all the infections are happening.
Sorry to hear this LP - whata bummer. I have found since the lovelly locum who treated in a holistic way, I am back with the faffing about which I believe they do when we are complex and present with something else which needs detective work. It is so very frustrating. I hope you have the fighting spirit still and can get this sorted out. Sooo frustrating.
I know you will come to the right decision. Let us know how you get on.
I couldn’t agree more with your analysis. I’m sorry that you are having such an awful time at the moment. Never having had any more than a venflon for IV I am now very dubious about letting them put a line in.
They seem to think that I will cope well with administering two drugs so I am sure that you will. It’s just an idea for your to throw at your consultant if the meropenem doesn’t do the job on its own. I hope that you are feeling better soon.
Please dont get concerned about having a midline put in. My veins are shy and absolute rubbish, so please don’t be influenced by my experience. I will say I wouldn’t hesitate to have a midline put in again on another occasion. The pluses far outweigh any minuses. Being at home is far better and you can do your IVs on time in your jamas, with just one visit mid IVs (which I have just done) and one at the end.
I understand your concern but I am sure you will cope brilliantly doing your own IVs. Please remember they will not let you do it until both you and they are confident whilst doing them. You would also have your first 2 doses at the hospital. You are more than capable.
Not sure just how effective the Mero has been this time. My FEV1 usually goes up at end by 10% but it has not budged half way through treatment and I feel quite ruttly on right and breathless (may be the asthma), although paler yellow and not much of it. Will see next Wednesday.
You would be fine - although it is a pain washing you hair and having a shower. I cover area with clingfilm!
Thanks so much for your encouragement. I am guessing that I will be lucky if I get through next winter without resorting to the opat team. I will let you know how I get on with two abs when I do have to do it. I’m not worried about doing it at home. I did it into a venflon or bolus as they like to call it now in 1998 and kept one going and infection free for two weeks. That was ceftazidime which is rarely used as it is difficult to source but is good. Flying by wire to the US for two weeks with just saline, ventolin and cipro. All fingers crossed.
I hope that this session does knock it on the head for you. Otherwise maybe a change of ab might be in order. You may be ok with colomycin or ceftazidime into your veins as it is definitely the reaction of my tired and sensitive lungs to the drugs being forced into them which renders me breathless.
Do let me know how you get on. Although we are going to places where the Americans consider that they are camping and roughing it there still appears to be wifi. So I am hoping that I shall be sending pics of elks and bears.
Your holiday sounds wonderful. Look forward to seeing some pics.
Cephtazidime IVs were very difficult for me to tolerate last time I had them. Had to stay in 5* because of the side effects. Hope to have more clarity on Wednesday at my end IV session.
What a nightmare LP. I think Katinka is right and a referral to the haematologist is the right path to go down. I am sure that you have the resolve to tackle this latest, but wanted to let you know we are all behind you, you have been so supportive to many of us on here x
Dreadful Lp, I agree about the GPs which is why I don't see them very often and use natural methods of controlling my bronchiectasis. We could get all the nutrients we need from our food if our digestion can absorb it, a cocktail of prescription meds, gaviscon, antibiotics etc will hinder the absorption, I don't take any of it now, only abs for a severe infection if it happens. You are right, it should have been investigated long ago and it's really not fair on you, keep strong and get them all on it. best wishes, Su
Your approach to your bronch sounds similar to mine. Learning to deal with it from childhood and three wonderful consultants mean that the ‘less is more’ approach to medication has worked for me. I have cerainly fought to avoid IV and have only had to succumb three times in my 69 years. Self physio and management is so very important.
My big problem is that I cannot absorb from my food. My very clever consultant thinks that bronch is on the cystic fibrosis spectrum which would explain it. Unfortunately the science hasn’t caught up with the speculation. Every time they discover a new cf gene she tests me but no luck so far. I’m glad that you are staying well and thanks for your support.
Well done Lp, my bronch also has many cf similarities, can't digest fats, skin was very salty as child, low salt levels in blood now and interestingly constant slight anaemia. I sunbath every day, make raw green juices and now think I will start eating liver, don't like it but how about a good savoury liver pate on thin crisp toast ! not strictly good food combining but it will have to do, do you eat it?
Apparantly you have to eat liver raw to get the benefit. My great uncle had pernicious anaemia in the days before miracle drugs and B12 and had to do it yuk.
My skin tastes salty even now even though the famous salt test was negative. Interesting
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I quite like liver,bacon and onions but only if I cook it myself.
Aaaahh no! not raw.. oh no. Do you remember the little pot of deep red raw tasting yuk liquid we were given in hospital in the early 50s?that must have been the raw liver..
Oh horrors! I never had that but remember virol when I was hospitalsed for a bronchogram in 1953. I kept throwing it up and they kept forcing it down me.
Even in the 50s they knew that we need extra iron! Something that had completely gone from the training now.
so true Lp, I couldn't get on with virol either, now they say the best supliment is Floradix liquid because your body can absorb it, I had forgotten about it till now, will get some again, anything to feel less tired.
So sorry to hear about that Littlepom I know how hard it is with these gp’s. I would just keep on at them, as you say all your other problems are stable and you shouldn't be dragging yourself around. You know how you should feel and you are not feeling as you should. X
Elevated serum alkaline phosphatase (ALP) level is an essential marker for the diagnosis of vitamin D deficiency (1). Some cases of vitamin D deficiency are diagnosed accidentally on the basis of elevated ALP levels. Therefore, cases without high ALP may be excluded from a diagnosis of vitamin D deficiency.
Thanks for the thought kflatt and yes vitD deficiency can be a cause of raised alkeline phosphatase. The joke is that my vit D level is 111 because I have been taking 1600 iu per day since 2015 when I persuaded them to test and it was 23. Having ruled that out they should be looking for another explanation though.
Hi from the experience of my wife I give you this example. My wife's ferritin as always been on the very low side of normal . To which her GP did nothing. However due to other problems she needed to see a specialist who stated that her ferritin was lower than normal and this could affect her condition. I explained the situation with the GP. She said do not worry I will write a letter. The letter advised the GP to do regular bloods her ferritin amongst others must be kept at a higher level which she set. The GP acted and supplements started. Perhaps getting your cardiologist to write a similar could help?
Thanks Badbessie. My ferratin is showing as normal according to them. I will print off the results and take them to my bronch con in August and see what she says. It makes a lot of sense. If she tells them they will have to listen.
I share your feelings about GPs - I was diagnosed with Stage IV COPD 7 seven years ago but despite repeated requests, it took 5 years to be referred to a specialist and then it was only done when the NPs at my practice became able to refer, as my NP referred me. However, when I had seen the specialist, he “missed” two lung lesions on a CT for three months and was generally unhelpful. I steeled myself to ask him for the third time if I could have a 6 minute walk test, my heart checked and a low dose beta blocker for my AF (GP had refused that) and when I went in, I saw a young registrar instead who immediately agreed to all my requests! My 6 minute walk showed I was desaturating to 80% on exertion (funnily enough the figure I got with my oximeter 3 years ago - at the time my GP said “well what do you expect with COPD?”, the next time I raised it I was told “you can’t be desaturating to 80% - you’d be blue!”) and I’ve finally been referred for an ambulatory oxygen assessment. I feel we often need to fight for the most basic things and it’s exhausting. Sorry to vent! 😊
Oh what can I say! It is tantamount to abuse that those of us who are already struggling have to find the energy and motivation to take on these lazy, ignorant overpaid people whose wages we pay. Please keep venting.
I sympathize with you, you are right in many ways, just 3 weeks ago I had to go and see my GP about a bad red painful area on both of my lower legs, she diagnosed it as Cellulitis but as I was there about my COPD, she could only deal with the COPD issue and that I would have to make another appointment for my leg issues, for this I had to wait for 2 weeks for the next appt. Now when I arrived she prescribed a topical cream which turned out to be an emollient and moisturizer according to the formulation it is specifically for eczema and dermatitis, of which I do not suffer for neither condition.
Now we all know that Cellulitis is a bacterial infection (nothing to do cellulite) so during the time that had elapsed since my first visit, the condition did not improve, other that for the bacteria infection to travel up into my lungs, so the result being that I am now going through an exacerbation and having to use my Rescue Pack. Now, whether the antibiotic from that pack will help the cellulitis I have no idea, but after googling the remedies, it does state that it can be used for cellulitis amongst a few others.
So we shall see what happens over the next 2 weeks in my dealing with both conditions at home with what I have available before getting back to my GP.
Oh I am sorry to hear about your health problems,again I think we know our bodies well and as you always are supportive of everyone else’s problems that I hope you pursue this issue with your health provider ,good luck x
My tuppence worth. Do you take proton pump inhibitors e.g. omeprazole? A friend (68) who had used this long-term was constantly tired and weak and quite thin, GP suggested taking things easy and eating more! When she went to donate blood, as she had done for 50 years, they wouldn’t take it because she was found to be very anaemic. No immediately obvious explanation but with some research she found that the stomach pills can cause this. GP then prescribed heavy duty iron pills (with all their concomitant side effects). Why weren’t some simple blood tests done months before? They seem to need a catalyst (a sharp stick?) to do anything.
Oh Littlepom, how frustrating and infuriating. You are such a star on this forum and deserve so much better than this idiot doctor. Have a wonderful holiday. I'm sure you'll be back fired up ready to take them all on again - and we'll be right behind you!
Thanks annienell. As I am now treating myself with iron, vit B and multi vit sprays by the time I feel able to fight the fight the tests results will have changed🤣
Just a thought, there is a form of anaemia linked to long term inflammatory conditions. I don't think iron tablets work to fix it. And veggies, like me, seem to be problematic if on PPI's as the veggie source of iron needs stomach acid to make it available! Sounds like a blood specialist is a good way forward. Best wishes.
So sorry that your condition has been overlooked for so long. I hope that you can manage your condition with your self treatment.
Thanks to your advice I am off to the QE in Birmingham this afternoon for my second appointment with the lovely bronchiectatsis consultant now that she has all of my results from the tests she ordered for me.
I would still be plodding along with my GP and chest infection after chest infection if it wasn't for you and all of the other lovely people in this group and your words of wisdom.
I hope that she comes up with a good plan for you ongoing now. I guess that I shall be taking my GP troubles to her when I see her at the end of August. X
Our local private doctor charged £25 per injection and showed how to self inject B12. This after I was refused injections on the NHS. I now have a good quality of life.
I have had private blood tests. All come back within normal levels. Nobody will listen to me that taking folic acid masks vit B12 deficiency. Sick of the lot of them .I'm pleased for you that you finally got the treatment you need.
First of all I find it unacceptable you were refused necessary B12 injections on the NHS. My aunt, who had pernicious anemia received them once a month, and towards the end of each month was really needing them! So in your position I would do exactly the same at that reasonable cost, in order to remain in good health.
I paid £29 for a Vitamin D test at an NHS lab in Birmingham, which was recommended on this forum, as it was not available from my GP.
However, a private consultation from £150-£200 and then hospital treatment and all it entails is the part where big money is involved. Recently know of elderly gentleman in much pain could have the surgery immediately for £13,000 or wait 18 months on NHS list.
We had fought quite hard with our local NHS Doctor to no avail. I was fed up with getting nowhere. Because I had no quality of life we had to go private.
Now I can go shopping and go to Tai Chi and chair Pilates. It is easy to get B12 capsules on the web.
I hope more people do what I had to do. It’s lovely to feel so much better!
No I did not have blood tests. I requested B12 shots and got them. what do tests prove - you know your own body. i also have iron pills but from the NHS.
It’s interesting that they agreed to give you the shots without proving by testing ferratin and vit B12 levels to prove the need. I haven’t been able to find anyone willing to do this but as you say I know my own body. Thanks for the support.
Thanks I had aunt, great aunt, great uncle and grandmother with pernicious anaemia. This is why I am frustrated with GP, hospital clinic and private blood tests which all state my B12 within normal limits. Luckily my GP put me on high dose vit D3 in 2016 and that has been very beneficial.
I hear you Hidden the GP docs are infuriating, mine had the commonsense of a billygoat in response to my thyroid condition, cause she refused to refill my medication that is needed daily for LIFE. So, over a month later, my THS and Free T4 levels came back abnormal, and I was inflamed with anger. I told them that I wanted a new doctor because if she doesn't understand how to treat me properly with just that medication and condition, how on earth can I trust her to know how to treat me properly with anything else? We, as society, tend to put too much faith and trust in our doctors, and I personally believe that we would do well to hit the medical books and journals ourselves to have a better understanding of our conditions, as opposed to just trusting everything our doctors and specialists tell us about our conditions.
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I wonder - Do I need Oxygen.
Changed my consultant
Regular seasonal flare-ups
What can I do about air pollution
Undiagnosed condition
