REPORT ON VISIT TO GP ON 12/01/17

[JGBH]

First of all I gave her a letter from the optician for referral to my ophthalmologist. Saw optician at beginning of week (requested an earlier annual test as am having sudden onset of other problems with vision). In letter it says; patient (Px) came for early eye exam; past 6/12 weeks feels VA (visual acuity) is reduced. Px left VA reduced compared to 12/12 ago. Left IOL (intraocular lens= had cataract op 16 years ago) is slightly hazed but not enough to acount for VA drop. Px also has epiretinal membrane (shimmer over macula). Please can be seen for ophthalmological opinion. Left under top lid on eversion small flat pigmentary spots, Px stated irritation that position past few months. Px also mentioned sx of kaleidoscope effects lasting approx. 15 minutes in BE multiple episodes past 2 years, explained most likely ocular migraine.

So to me this may indicate damage to optic nerve, and could this be caused by microcytic anaemia and B12 & folate deficiencies? Could this be another symptom?

Then I asked her who checked my blood results as I was surprised to be told EVERYTHING was NORMAL when in fact my RBC are above range (as indicated by Lab): 5.24 10* 2/L (3.8 - 4.8) and my MCV: 82.4 fL (83 - 101) and MCHL: 26.7 pg (27 - 32) both of these below range as indicated by Lab. GP defensively told me she had checked results and this was "normal for me considering my health issues" !!!! Obviously not prepared nor caring to help me improve my quality of life and accepting my health will decrease until I drop dead!

Told her I felt I had probably be wrongly diagnosed with vaso vagal syncope a year ago, as I only tested mildly (and most people put through the Tilt Table Test would, as have been told by neurologist and cardiology seen privately), and that my fainting episodes more likely due to the fact my RBC have a poor haemoglobin uptake as shown on blood test results, and a B12 deficiency: B12: 434 ng/L (197 - 771). She said Ferritin levels were ok: 43ug/L (30 - 400) as was Folate: 7.5 ug/L (3.89 - 26.8). I pointed out my levels were very close to the minimum levels of the ranges and that taking into account how ill I have been feeling for past 15/18 months (and really before that) and getting worse I would like the chance of being given B12 injections to see if it made any difference, stating B12 is a water soluble vitamin therefore can not cause any harm... She then said she would consider starting injections for a period of time (3 months) but that she would discuss it with her surgery panel and let me know by letter on Friday.

".... I had a chance to discuss B12 with my colleagues. Concensus was to see if there was a response to B12 by giving you ONE dose and then seeing what happens to your blood work at 2 weeks....".

Obviously this is not going to work and give them the right to say NO need for B12 as no real improvement.... Or am I wrong in thinking so? Can one dose make any difference??

I also said I think I should see an haematologist, to which she replied he would not see me with such results. Could that be true when there is an overproduction of RBC and that they have a low intake of haemoglobin? I am absolutely puzzled... Help PLEASE.

I also mentioned I was feeling stressed and depressed to which she rather quickly said "Ah, you're admitting to mental illness although you don't like to".... as she was obviously very keen to placate me by dishing out antidepressants.... then a label was given and job done, she could tick my problems off! Replied the answer was not in giving antidepressants but in helping me to find an accurate diagnosis because I could not go on like this any more. Told her (not for the 1st time) I was so ill that I was unable to do anything at all, and this for 15/18 months... 70 BUT feeling like an 85 years old woman spending my time on a sofa waiting for death, NO DOUBT I was depressed when I am a doer, I want to go walking with people, want to do activities, am sociable and now feel soill and isolated, life passing me by. I have been unable to attend my tai chi classes for months now, something I enjoyed doing for years!

She was to have referred me to a cardiologist over 6 weeks ago (at my request as having strange symptoms with heart and getting out of breath at slightest effort), and found out on Friday she had not done it and of course she did not tell me... I found this out by phoning the hospital cardio's secretary who said I was not on the waiting list for her consultant but had noticed GP had sent a fax on Thursday to another consultant. This consultant's speciality is TOE (transoesophegeal Echocardiogramme), the consultant she was supposed to have referred me to over 6 weeks ago had a speciality in the heart physioelectrics.

When I went to see her I had many photocopies of guidelines for B12 injections requirements, etc. having highlighted my symptoms etc... she did look at them briefly. But.... nothing is happening. Of course I am not going to accept the ONE b12 injection and will write to her to explain my reason... but need to get b12 treatment so PLEASE any suggestion would be most appreciated.

So would anyone be able to give me once more advice as how I need to proceed PLEASE. Also what should I do regarding microcytic aenemia? Surely can't leave it at that? The cause behind this must be found, it could be a simple fact or more serious... Thank you to anyone who will be willing and able to help me.

Most grateful to this Forum.

Sorry this is very long...

[startagaingirl]

Hi JGBH,

A sorry tale indeed. Could I suggest that you post this in the PA group as they are the real experts in B12 deficiency and treatment,

healthunlocked.com/pasoc

Good luck

Gillian

[JGBH in reply to startagaingirl]

Hi Gillianl,

Thank you. When I was writing this post I wanted to do so on the PA Community posts but when I clicked on "My Communities" the PA community was not showing just Thyroid and Pain... I was able to access PA before today but for some reason am unable to do so now. Any idea why? Thanks if you can elucidate the mystery.

Kind regards

Jo

[startagaingirl in reply to JGBH]

Hi Jo,

There seem to have been a few glitches in the communities recently. Why not search for it and try clicking "follow" again? Otherwise sorry I have no idea.

Good luck,

Gillian xx

[JGBH]

Hi Gillian, Thanks again. Have tried several times... no luck. How do you report glitches??

[Marz in reply to JGBH]

Click onto your name on your last post which will take you to your posts. Second one down is your last post on the PA forum where you had 10 replies .... click and off you go 😊

[Learner1]

Your folate and B12 levels are low. Try sublingual methylB12 first, at 3mg a day. Then add 400mcg 5-MTHF, especially if you start feeling anxious.

You might also consider s Genova Diagnostics NutrEval test. It would help you know if it's not just folate and B12. You need cofactors like magnesium, other Bs, and certain aminos. Not having them could bottleneck pathways. Another good numbervyo check is homocysteine, which ideally should be around 5-9.

Also, look into food allergies, leaky gut.chronic infections. With as MN any symptoms as you have it's likely something systemic is going on with a root cause in one olf these.

[JGBH in reply to Learner1]

HI Learner1,

Thank you for helpful and kind advice. However I feel it's probably best not to take any form of supplement at the moment as these would likely mask true results from tests. What do you think?

Yes, I am now considering private testing, but there are so many companies doing so... a money-making business... that one has to be careful in making a choice. However I understand Genova Diagnostics NutrEval tests are reliable. Have you used them yourself? Will look at their website and contact them.

Sorry but what is MN? Quite agree with you my problem(s) is most likely systemic in origin and it's why I've tried so hard with the GP to make her realise that I need the root cause to be found... she's not helping at all. This has been going on for far too long and yet I keep on pushing but not getting anywhere. She had the arrogance, and for a so-called doctor no compassion, in saying "some people age quicker than others!"... This is truly appalling. An it clearly shows a certain unwillingness to help patients with complex health issues. All she wants is "push pills"... job done, no problem. Very scary indeed as one feels so vulnerable. Perhaps many people can relate to this fact.

Best wishes

[Learner1 in reply to JGBH]

Sorry for for the confusion. MN.... with as many symptoms as you have...

Take the supplements. You are low, you need them. Lack of them can cause a snowball if symptoms, including cancer and dementia.

I have 8 years of annual NutrEval tests for me and multiple family members. Extremely valuable in solving problems, and correlates well with other tests. Have not seen a better test anywhere. They use the methylmalonic acid test which is far more accurate than serum B12.

Best of luck to you...

[JGBH in reply to Learner1]

Thank you, most helpful information.

[MariLiz]

As you are trying to get a diagnosis, supplementing anything yourself will mean future blood testing will not show an accurate reading. The usual treatment is six injections of B12 over two weeks, then a further blood test in six weeks. This is to show how well the body is retaining B12. So to give you only one injection, is hardly a trial.

Have you had a look at the Pernicious Anaemia Society website? Print out one of their symptom lists, and tick all that apply to you. You can take that with you to the doctor. Unfortunately, many GP's have a very poor understanding of low B12. They don't realise that we can have what appears to be a reasonable level in our blood, but only a small amount of that may be reaching our cells.

Good luck with everything.

[JGBH]

Thank you Mariliz. I do not take any supplements at all. Had taken many notes (copies if guidelines, etc) to surgery and shown GP which she looked at BUT got no result! Have the very distinct feeling she's not prepared nor willing to help... not sure what to do now. Have no intention of booking an appointment with nurse as she asked me to do for ONE injection and retesting levels after 2 weeks... Pointless exercise as I will tell her in a letter. What to do next?? It is quite obvious there are several problems going on so have no intention of starting self-injections because if there are other problems along the way (and probably will) she'll blame me for self-injecting. I have other serious health issues so it would be good to be guided by a decent GP... Really despair at such an uncaring and unconcerned attitude and am very worried.

Best wishes.

[Marz]

Have you managed to obtain recent Thyroid Test results with ranges ? - or have I missed them somewhere ??

[JGBH in reply to Marz]

Hi Marz,

I did... and to my surprise I was given only the TSH level... so incomplete (only noticed it once I got home. They were other tests results as well on the printed sheet and that was done in May 2016:

Serum THS level : 1.19 miu/L (0.3 -5.5)

Note: No biochemical evidence of primary thyroid disease. If on T4 the TSH suggests adequate treatment. If patient on antithyroid drugs or there is a suspicion of pituitary disease further tests may be required.

Serum sodium: 141 mmol/L (133-146)

serum potassium: 4.1 mmol/L (3.5 - 5.3_

serum urea: 5.8 mmol/L (2.5 - 7.8)

serum creatine: 71 umol/L (45 - 84)

GFR calculated abbreviated MDRD (What's that? : > 60 mL/min/1.73m2

Note: to interpret eGFR refer to : http:/derby-egfr.co.uk

Bone profile

calcium: 2.37 mmol/L (2.2 - 2.6)

serum adjusted calcium concentration: 2.49 mmol/L (2.2 - 2.6)

Serum C reactive protein: >0.6 mg/L (>5.0)

Liver function tests

serum total bilirubin: 5 umol/L (< 21.0)

serum Alkaline phosphate: 56 iu/L (40 - 129)

serum alanine aminotransferase: 16 iu/L (< 40)

serum gamma-glutamyl transferase: 14 iu/L (7 - 33)

serum total protein: 68 g/L (60 - 80)

serum albumin: 35g/L (35 - 50)

serum globulin: 33 g/L (25 - 41)

So this is all. Will shortly be having some private thyroid tests, including antibodies and will give my results when I get them. Will remember to go early for test and will not take my T4 before test.