Yet another half hearted GP appointment at my practice though with a new GP. The idea being a joint decision with my old GP to have a new mind to look at me. I did my bit for speaking up about B12 and lack of treatment and moves afoot by PAS re recent events and and told her about Dr Chandy and his meticulous research. She knew diddly squat about B12 so I carried on telling her about it. I told her I'm self medicating with injections - shock horror on her face. How, why, where did I get my stuff from. So I told all as I don't really care any more what they think. I said I want some quality of life back after years of it quietly dwindling away to zilch. I assured her it was all legit and legal. I could tell she was curious, though couldn't or wouldn't admit it. Her only comment was there's no known data on it's consequences. I assured her there was.
I really needed to let her know I was as capable as her of doing research and understanding things that they only think they can do! She was quite a nice person but limited so I'm probably going nowhere again. However doing some basic bloods again so see how it goes.
It's gone on my med records though about self injecting.
Also had poor endo appointment since I last posted. She was a locum and not who I was meant to be seeing. She was only interested in my Osteoporosis which wasn't what I was referred for, which was the awful never ending fatigue for the last 15 years. She knew nothing about B12 either and wasn't interested or rather said it wasn't her field! All bloods 'normal' but no checking of cortisol levels done there so I'm probably going to have to go private for that as per Dr C's advice.
I despair at their apathy and indifference. So still looking for my Doc Martin!!
CT scan tomorrow re digestive problems and another eye scan in Feb for my deteriorating sight in left eye. Yet another thing no one can diagnose. It's not macular or glaucoma. Surely I can't be that weird - can I? But I feel as if I'm imagining all this somethimes or I'm in a really bad dream and hope I will wake up and it will all be gone and I'll be me again.
Thank you for letting me vent otherwise I can feel very lonely lately.
Time for bed and warmth.
Sallyb
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Sallybones
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I say ' well done ' to you for telling your GP that you SI. I told mine too . Yes - shock -horror as well !
I also had terrible gut problems too . Tummy ache , terrible bloating and burping! This was cured by a course of probiotic SYMPROVE . Gastroenterologist told me that PA patients have no or low stomach acid (Achlorhydria or Hypochlorhydria) This upsets the stomach flora and bad bacteria takes over . Probiotics help this . Homemade organic sauerkraut is very good too . There is no NHS treatment . Dear sallybones , don't feel lonely . You have friends here . Hope that you feel a bit better now you are in bed . Best wishes to you .Sleep well 😴
Hi wedgewood lovely reply. I've been too tired to come back on site since I posted as many things going on to sort out apart from health, which are also very draining. I can just get by when nothing else demands attention but everything happens at once. No health, no money but the worst is my 15 year old Jack Russell, Billy, is quite poorly and I think this will be his last year. I shall keep him going as long as he seems happy enough and we have a great vet. He's been with me through thick and thin and 'diagnosed' my cancer in his own way in 2012. So he was my life saver.
I do make my own kefir but all my routines fell by the wayside lately. I shall have to get back to that. I will have a go at making sauerkraut again too. I made some last year but for some reason I daren't try eating it! Silly me! I've got some Betaine HCL so may be I should persevere with those again. When I feel poorly I really struggle to eat anything or take anything as I don't want to feel worse. Usually have to wait until my whole system clears.
No results from my Gastro scan yet. I expect it will say 'normal'. Which is good in one respect as it rules something else out and narrows things down. They had lost my scan referral though (since November) so good job I rang up about it.
I hope that you are managing to stay optimistic . I was sorry to hear about Billy , but bear in mind that you have given him a lovely life . When the time comes you will make the best decision for him .
I also have some Betaine HCL , but since I've been on probiotics and sauerkraut etc , I haven't needed to use it .
Yes, it's awful when you aren't feeling too good health wise , that life throws all sorts of extra nastiness about . It gets toooo much .
I was nearly dead 45 years ago until I got diagnosed with P.A. and this was 13 years after the removal of two thirds of my stomach due to a perforated peptic ulcer so I'm glad I didn't have your doctor else I would not be "clivealive" today.
As to your retinopathy - I too have the same thing which was only "discovered" after I was diagnosed with Type 2 Diabetes in 2015 and was given the routine annual retinography test as retinopathy is known to be associated with diabetes. But going back now to 1972 I remember my then doctor telling me that "my eyes would be checked regularly" because P.A. could cause damage to the retina. They never were and when I asked the nurses giving my injections down through the years whether they were going to "look into my eyes" they never did. So I'm wondering if the damage that is now being "put down" to the diabetes is in fact long term P.A. damage.
Hi clivealive your replies always give me hope & make me chuckle. You've travelled a long road with your health ups and downs.
Well according to previous blood tests of which I've had quite a lot over the years, I'm 'normal' but the clinical signs say I'm not of course. I don't have diabetes or cholesterol problems, blood pressure is perfect as is my weight, BMI is fine. I don't drink or smoke. I have a lot of chemical intolerances which is why I don't drink. I did used to enjoy a glass of wine but it's so long ago now. These things play havoc with any social life.
I'm thinking too that perhaps many if not most of my health problems have been down to PA even going back to childhood. I'll never get a diagnosis now so no point in trying any longer but I will assume I have it and treat it as though myself. As I hopefully progress I shall tell my GP and whoever else what changes have occurred. A big one is no more muscle cramps when I stretch out.
The eye problem worries me though, so interesting to know about yours. I shall question the opthalmologist when I go for scan on 9th Feb. It's all scans at the mo.
I too plan to tell my GP that I SI, have made an appointment on the 1st Feb. Personally, I feel she should be grateful that I'm taking responsibility for my own health, especially when so many doctors are out of their depth when treating patients with B12 deficiency.
I was not prepared to sit an home, health deteriorating, whilst counting the days until my next injection.
Like others on this forum I also suffer from gastric bloating and a reduced appetite. I take lime juice to counteract the reduced stomach acidity & will also try a probiotic as suggested.
You're not alone. Well done for setting the record straight with your GP.
Hi HonorElizabeth I do hope you post your GP's reaction whether supportive or not. Good for you. I did get slightly grilled by my GP when I told her. ie where did I get my supply from and what was it and where did i get my needles and what dosage was I taking. She cast me a wary look and said but your levels were 'normal' - that overused word again. I replied no they weren't they were low, if just within their range.
Shall see what her demeanour is when I see her again in Feb!
I will post the outcome of the visit Sallybones. Ii shall go prepared with the box from the ampoules and details of the supplier etc. I have enjoyed a good relationship with this particular GP, hopefully it will continue, either way I believe honesty is the best policy. It not as if I'm doing anything wrong and my health is improving!!
We would all like it known that we want Wedgewood's gastroenterologist. Along with doc Martin in Holby hospital! That way we might actually get somewhere! Lol
Hope the si on your notes doesnt rear up and bite you on the backside- but lets face it, its only a minor unworthy, harmless vitamin according to 'them'. Who knows maybe your new gp will be able to take some time out of her busy schedule and read some info on PA/b12d so she can actually help you.
Hi Lisahelen well I did wonder and still do whether it will rear up and bite me on the proverbial - we shall see but I'd got to the point where I didn't care anymore.
I always hope somebody I see along the way will be curious about what I say and read up about it.
Well done for taking control in the face of apathy and indifference, Sally!
I have PA since surgery years ago and now regularly get SIBO: small intestine bacterial overgrowth . I make my own sauerkraut that I eat raw little and often, and take other probiotics when it flares, which really helps.
I self inject and always know when I need a shot. You have got me thinking because one of the symptoms I get when My B12 is low is a pulsing pain in my left eye and the vision in that eye deteriorates faster than the other one.
I hope you start to feel a bit better soon, there are some lovely people on here and you will find loads of support and understanding. Big hugs,
thank you swimminthrutreacle (lovely name). I had severe migraines from mid 30s till about 55 always on left side of head and particlularly that eye and that is the eye that is now causing me vision problems. The migraines changed in the last 5 years to more like continuous tenderness in both the eye itself but above it too, tightness, loss of muscle control. All worse when I'm tired but it's always there.
I'm still playing around with my B12 dosage so not there yet.
Good on you for plugging away, Sallybones. I'm sorry to say I gave up years ago, after a very long fight which got me nowhere. Now I do most things for myself. The medical indifference you refer to can be soul-destroying, and I worry for the people who are ill but can't afford to do what I do, and self-treat my PA and hypothyroidism. I've had to make sacrifices to be to afford it, but the treatment is cheap in NHS terms, and according to NHS founding principles none of us should be forced into this position.
Hi Hillwoman I'm plugging away but getting to the point perhaps where I think I know where I stand within our health (dis)service. There are one or two more things I want to follow up with them then I shall follow my own path and treat myself where I can.
It is soul destroying, you are definitely right, but I'm getting the measure of their unwillingness and apathy and trying to use what I can to my advantage. The eye problem I have to go with them on as that is something I can't do myself.
The other thing is I need my GPs support for ESA claims which they have always helped with. The thing is they don't deny I have long term multiple complex health problems - but yet wouldn't even consider trialing me with B12 injections. That attitude told me everything about their limited thinking and ability.
I see your problem, and I quite agree that vision problems and benefit claims require expert assistance.
I have problems with my sight which are only partly alleviated by frequent large shots of B12 (at least 3000 mcg on alternate days). I can't get any help with definitive diagnosis, as neither the GPs nor the optician can grasp the nature of the problem. I have a family history of glaucoma, and the optician blithely announced I had holes in the wider visual fields. She claimed they didn't mean anything, "They're just you". As you can imagine, I wasn't impressed! Good luck with your opthalmology appointment, which you've mentioned below.
Hi sorry to jump in but curious having read your post re sight. Have you had a OTR scan? Just had mine done and retinoschisis diagnosis - retina layers coming apart & caused a scotoma or blind spot/ sight loss due to damaged retina. I have family glaucoma history but not got it yet & Hashimoto's. Just thought I'd mention it as something to check.
Hello Nickinoo1 thanks for jumping in your post is very interesting. There's no history of eye disease in any of my immediate family. Neither of my parents who lived to a good age had any problems and neither of my sisters or their children do. Don't know about grandparents. Being the youngest I seem to be the one who got everything going though I've jogged along till now.
Yes I had that scan done at my opticians and was then referred on to NHS Opthalmology Sept last year, who told me it's what I had when I was referred on in 2008 by Specsavers optician!! They told me nothing was wrong at that time!! My eyesight was'nt a problem then though I'd always worn glasses for distance.
NHS are going to do own scan next week so I shall push for a diagnosis and treatment if there is any.
Apart from PA or B12 deficiency I do think something is underlying all these things. Not necessarily fatal I hope but definitely very life limiting.
Hi Sallybones - just received an Alert that you are now Following me So have been reading through your posts/replies. You seem to be coping with a great deal.
A couple of members have mentioned Thyroid and Hashimotos - but I didn't notice a response from you. Perhaps you have been tested and told all is *normal* - it would be good to know if you have any results with ranges. So often Low Thyroid and Low B12 go hand in hand - with many symptoms that could be either/or !
The FULL Thyroid Profile is rarely done and so it is missed. The tests needed are :- TSH - FT4 - FT3 and the Anti-bodies TPO and Tg. The anti-bodies need testing to rule out Hashimotos. Mostly just the TSH is tested and if you are really lucky also the FT4. The most important test is the FT3.
The link below will take you to a list of Signs and Symptoms and you can tick the relevant boxes ....
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So have been reading through your posts/replies. You seem to be coping with a great deal.
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