Mixed results from the latest blood tests with platelets showing a rise neutrophils also abnormal but good news is the white blood cell count is still heading down and inflammation levels showing normal.
Even so this blood test thing with it’s abnormal showings does worry me.
Is it to with the steroids and can I hope that they will settle as tapering continues?
Thanks for any support on here it’s always much appreciated.
Gill
How abnormal were the results? Do you have the figures and would you put them up?
Have you had any injuries or other problems prior to the blood tests that might have caused a temporary blip in the figures?
Are the doctors worried? If they aren't there is no point you worrying. Both platelets and neutrophils rise with pred.
Doctor has messaged for me to make a "routine appointment" to discuss, so I am presuming that means there is no cause for alarm. Trouble is everything you see that is abnormal on Patient Access tends to stress me out. I am half beginning to wish I didn't have it and stayed in the unknown. I know my GP surgery is pretty good and thorough.
It's partly why doctors are so anti-Dr Google. It always suggests the worse case scenario, and while sometimes that is the case, mostly it isn't. It's the same with lab results - lots come with a red flag because the computer marks them as outside range but it could be only like speeding at 1mph over the limit which is within measurement error.
I have ridiculously high ESR and CRP readings, which I find worrying. The GP just writes SATISFACTORY. If your GP is worried they will tell you.
I often wonder whether "satisfactory" is code for " She did not explode when she entered the room so she's fine".😆😆😆I had a Neurology video consult this morning .
I did my BP cuff reading before it after lying down for 15 minutes , BP was low but my heart rate was 138.
When I told her , she shrugged and said "oh , with your issues that's alright for you "
Er! No ( especially as on the back of that she has approved me for the Migraine Biologic Therapy, which is great , except the main side effect is rapid heart rate).
I so agree. Being told ‘it is just you’ always strikes me as a bit worrying. My brother thinks I am on the wrong planet as I have very low temperature and blood pressure, now very high CRP and ESR. Perhaps he is right. I have to hide my prehensile tail as it is!!
😆😆😆😆Yes. My Third head is getting too big to tuck under my arm now too!
I can't quite imagine ANYONE over the age of 2 for whom 138 sustained heart rate is normal without some investigation as to WHY!
Perhaps they were basing my age on my behaviour instead of my day of birth😆😆😆
A possibility - act your age, not your shoe size ...
Is heart rate the same as pulse rate? Mine is usually 60 something.....I do wonder if I'm still alive and kicking at times!!
Yes - same thing. Mine is consistently 60, it is the bottom end of the normal range but probably partly due to medication - I have a pacemaker to make sure it doesn't go too low, I did have pauses of up to 7 seconds with no heart beat which is a bit long for safety! But lots of heart medications slow the pulse, I don't think mine rises in response to exercise these days though.
That's nice and normal , the only time mine drops near that level is when I'm asleep , when it averages about 69. Except for moments that it wakes me up with a Bradycardia dip down to the low 40's twice a night . It's probably the main reason for my insomnia , my heart doesn't slow down enough to help me get to sleep no matter how tired my body is and my brain wants to go to sleep.You can't take the heart rate meds for 4 hours before bed or lie down for an hour after a dose in case they cause supine hypertension.
Although in my case I have intermittent Hypotension so I do wonder whether I could chance taken them a little later in the day.
You would be thoroughly investigate with that sort of variation here - and would almost certainly get a pacemaker with regaular bradys like that
Not being considered as an option yet because of the type of heart problem I have and the complications of any sort of treatment I get because of my EDS. They are even unsure about going forward with the ablation because they aren't confident that it will be successful unless they can activate the symptoms in the right way to activate the electrical fault in the sinus node at the time of the procedure.I'm an awkward one , it would be so much simpler if I didn't have so many different conditions at once making it hard to treat one without making the other worse.
Hmmm 138, think I'd want a bit more input if mine was that high. As a matter of interest did you think to do another cuff reading after the appointment, might have been interesting to see if it was different.
I have Sinus Node Reentrant Tachycardia , it's a form Cardiac type of Chronic Dysautonomia, plus AF with Arrhythmia. Unfortunately I also have Vitamin B 12 Deficiency and when my level drops too low before my injection it triggers my cardiac and neuro symptoms despite the meds.Yesterday was particularly high, I've got about 5days to my next injection so I'm just trying to take it slow until then.
It's really annoying because I can only get B12 injections on the NHS every 8eeeks ( I'm lucky. most people only get them every 3) but my blood level becomes too low after 6weeks. We are waiting to see if a consultant can convince the Trust to make the change but if not I will be forced to do as others and either go to a beauty salon and get them at £40 a go pretending it's for "skin" or order the vials from Germany and self inject. Neither is an ideal but I am past the point that I can be like this for two weeks in every 8.
You can't overdose on B 12 but unfortunately the NICE are still relying on one study linking B12 rise before Cardiac events which specifically didn't include any one with B12 Deficiency, and has also been explained by other studies to the fact that the body releases extra B12 ( among other nutrients) before a heart event to try and prevent the problem rather than causing the issue to occur.
If I'd done another cuff during the appointment it would have been higher because I was sitting up, my condition gets worse depending on the position I am in , at the moment I'm only getting up for the bare essentials . I did one later to check if I needed to go to ER , it was HR 152 , BP 109/83, again not the worst it's been. I can't sit up or stand too long without tremors. One tiny B12 injection and within 24 hours my symptoms are back under the control of my medication again! It's all very annoying.
Thanks for asking , Bee
Why don't you try sublingual formulations? They are absorbed much the same as from injections - even work in PA
Not quite, unfortunately , the injection goes directly into the blood ; the supplement still needs to pass the gut/blood barrier, they can help with certain types of B12Def but aren't usually that effective in PA. I am also prescribed high sublingual B12 liquid to take daily to " get me through" it makes little difference as the amount in my bloodstream passes a certain level.I get the same for Folate , a three monthly infusion and high active oral supplements. This is better controlled.
I also have prescribed pancreatic enzyme oral therapy (PET) now.
If you have an absorption problem which is not just linked to intrinsic factor , or stomach acid, or diet and age. and is linked to connective tissue causing a problem with the pathway of nutrients across the gut/ blood barrier, or metabolic/ enzyme problems, even the most active form of sublingual Methylcobalamine B12 is still too hard to absorb ( although much better than any other type I would recommend them for anyone else ) .
Most people absorb between 50-70% of an oral supplement , this can be about 10%higher with an active or sublingual form, but not the 100% dose stated on the label of any nutrient, that's why they are in doses so much higher than the Daily requirements.
People with B12 Deficiency, Folate Deficiency or PA without other metabolic issues might only manage between 24-46% absorption of an oral supplement based on past research. This can also effect how much people absorb of other nutrients and their medications as well because of the effect that these Deficiencies have on metabolising nutrients and drugs in general.
People whom also have additional digestive metabolic , enzyme or connective tissue conditions can absorb as little as 10-17% of an oral supplement up to a maximum of 36% , and much the same between 17-36% of the nutrients from food and formulas depending on the actual nutrients they have issues absorbing.
It's a double whammy. The Deficiency causes a decrease in good cardiac function , but it also causes a decrease in how well we absorb the medication that can control the symptoms of any cardiac symptoms that occur.
There have been studies that showed they are similar in effect, some concluded sublingual was superior to IM.
pubmed.ncbi.nlm.nih.gov/306...
concluded "This is the largest study that documents therapy with SL preparations of VB12 sufficient and even superior to the IM route. The SL overcomes the challenges of IM injections and should be the first line option for patients with VB12d"
This another more recent one
pubmed.ncbi.nlm.nih.gov/330...
Medications taken sublingually are absorbed directly into the blood stream - that is why they use TNG spray for angina, But it must be sublingual.
I don't suggest things without checking my facts first - it would be worth a trial at least.
Yes , I read that and will look at those studies again , but as I say it does depend on the root cause of the PA , B12 or Folate Deficiency not just having the conditions as to whether the sublingual oral supplement is as good or potentially superior. If I remember the reviews of these studies or their list of limitations, they do point out that certain causes for the Deficiency can exclude them as benefitting from orals than in standard cases.
The GTN spray is absorbed in a quicker ,better way much like my migraine spray. because of the way they get administered and the work that has gone into how these sprays are carried . Most sublingual supplements aren't administered as efficiently as a GTN spray and uptake of the oral sprays for Supplements can still be low ; although usually a lot higher than any liquid or tablet form.
There are many people whom , in my opinion, would benefit as much from sublingual oral supplements as injections , especially if part of the reason for their Deficency is also linked to diet or lack of consistency in use of therapies ; or at least by using them in-between standard injection intervals.
In the same way active or sublingual Folates and Iron could improve the uptake of treatment of patients with these and improve the symptoms without further intervention.
Unfortunately, many won't try it and I don't understand why.
I know there is a lot of frustration caused by the symptoms and often people don't feel listened to but often people whom choose to self inject don't also have the neurological or cardiac symptoms , and do so too quickly ; and too often, without really giving the oral route or combined therapy a chance.
Unfortunately, this is often encouraged by some very strong voiced supporters and alternative health practitioners with big followings.
Of course , one problem we have in the NHS is that most GPs no little about Nutrient Deficiency so don't understand about the difference in types of supplement and that they are always limited to prescribing basic supplements .
You don't get offered sublingual B 12 on the NHS at surgery level and without the guidance to get their own most patients still come up short and then assume no supplement will work . They only get the option to prescribe sublingual on the NHS for certain severe illnesses , when in reality they'd be better giving it to people straight away.
For example , I asked my GP about Active Iron. It's standard in other countries like the Netherlands because Ferrous irons cause people so many problems which stops them taking them.
They don't even have an Active oral iron supplement available to prescribe at GP level on the NHS at all .
You can only get it prescribed at hospital level as an infusion with certain liver issues, severe Anaemia or during dialysis and cancer treatment.
Most of us would prefer to solve the problems before our symptoms send us to the ER.
My GP and Nurse noted what I take and put the info on their notice boards so that they can advice others to buy the same even though they can't prescribe it.
The cost difference between types is nominal , it probably costs them more to prescribe two or three types of other supplements that don't work and go in the bin , and much more if you add in the extra blood tests they need to do it's a farce.
I've been doing all I can to make it possible to cope on the two monthly injections by using the high dose sublinguals . I've been tracking the issue over the last six months which is why the GP is now applying to get me six weekly injections based on the evidence.
Most people with these Deficiencies don't get the severe Neurological symptoms which could exclude them trying the sublingual route first but they often don't want to test this out after needing initial loading doses
I can understand that , Most people don't want to go through yet another year of Fatigue and Pain jumping through the hoops to sort this out , but I don't think jumping straight into injecting at home without supervision is the answer either.
If for no other reason than I don't like the idea of having to hide what I'm doing from a GP and I'm not happy with the idea of having to get things like medication delivered from overseas with the possible effect posting could have on the product.
And by doing that they could accidentally be masking the fact that they have another health problem causing the symptoms not just the B12 problem.
You can't overdose on B 12 but I don't think it's good to keep the levels artificially too high either , by not jumping into self injecting I know that six weekly doses would work for me , rather than instantly starting monthly or even weekly injections with no supervision like many home injectors do.
I know that the sublingual alone will not be sufficient for my individual needs, which is in line with the best clinical practice research on B12 Deficiency with my health conditions, but at least I tried,
Much like with PMR it's going to take time for hospital care and GPs to catch up with what would be a better route to better treatment for people with PA and B12 issues.
I know you don't advice things lightly and research them well and thank you a lot for this , I've relied on looking at your links and posts over the years to help me in the right direction, hugs , Bee
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