NRAS
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Now what?

Hello lovely people. So I went for the emergency appointment at the rheumy clinic today. Lovely rheumy nurse examined my joints and said she could find no evidence of active disease but accepted that they hurt. She was more concerned about the weight loss (now about 12lbs) and the low vitamin b levels in my last bloods for them. I told her I'd seen the GP about the suspected anaemia only to be told to have another set of bloods and 'if you don't hear anything, it's all fine'. I heard nothing and for some unknown reason there are no results on the system. Another set of bloods taken today. I managed to get an appointment with a new GP, who actually listens, for Wednesday so I'll perhaps find out then whether it's a case of over the counter b vitamins or injections for pernicious anaemia. I keep thinking 'what next?'. I'm feeling rather low.

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How frustrating Jan, hope they sort it soon, not surprised you feel low. I seldom have swollen looking joints bar hands n wrists but doesn’t mean they don’t hurt, so surely that’s active ?? heard others say same on here.

Hugs x🤗

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Thank you. I feel unheard and neglected. This isn't the first time the GPs have let me down through - what - being uncaring, neglectful, incompetent?

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I am there same as Kerrna there hands and wrists a little swollen and across the top of toes but doesn’t mean I don’t hurt all the time. You have to keep on with the doctors I also felt neglected and as if they thought I was a hypercondriact. I had referral to rheum and he actually was Going to discharge me but did book me in for an ultra sound on hands as X-ray bloods shown nothing - rare with me also because I had X-ray they noticed a pleural eff as well. I had to go to A&E twice and got told there it was carpal tunnel in my hand because I couldn’t move it , rang GP put on every kind of pain killer and still in pain ??? I went to A&E again well Mum took me because I couldn’t move !!!And it was there they gave me steroids so I could then actually move again and the pain was lessened !!! I have a baby and not being able to change her napppy it pick her up was horrendous I felt useless..

now having diagnosis 4 months later on mtx injection and hydro , steroids reduced and upped all time back and forth as await another scan to check do infection and for pleural effusion .. been several times for a chest drain and I can at least say with steroids I can look after my baby although still painful I’m not crying all the time in pain , frustration etc

Keep on and on don’t let any Gp fob you off I know exactly how you feel there I’m forever chasing everyone and it’s draining and tiring without RA !!

Good luck hope you get sorted soon Gnarli

Ps my markers were through the roof though CCP for infection / inflammation but yet still couldn’t work put what was wrong .. because under rheum the doctors kept passing me off !!!?

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I'm ashamed. I'm dealing with stuff, I know, but you're really up against it. Thank you for replying though. I don't feel so alone

J

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ach gnarli, poor you, too. B12 from h/span gives a hefty dose also chestnut 'shrooms. Hugs xx

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You’re right, it took ages for me to get diagnoses too; even now it’s more about what you look like than how you feel. I seldom have visible inflammation but still really hurts, can’t move affected joint. That’s awful having baby to cope with and this, feel for you x

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Hi Gnarli

Make sure they keep on top of your bloods, if it’s anaemia it’s so horrible and makes you feel absolutely terrible, I lost two & half stone, just didn’t want to eat anything and felt sick all the time, good luck hope they get it sorted soon 🤗xx

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Sounds like me, fellow janny and it's no fun. I don't have the weight to lose

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Oh Gnarli that’s not good, no fun at all, I’m feeling really p***ed off today gonna see if I can get me nails done 💅🏼 need some outside stimulation and some people watching 👀😁, hope your day goes well hugs to you 🤗xx

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That sounds the perfect plan. Having pretty nails makes such a difference.

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It must be catching Gnarli....I'm in the same boat.

I saw my Rheumy.....all going well really ...I just mentioned the fatigue was really getting bad...he then weighed me.....& sent me off to have 7 different blood tests....muttering about B12 deficiency.

Like you I'm nervous about pernicious anaemia.........it's all two steps forward & ten back with this rotten disease isn't it?

Hope you get your results soon & that all is OK

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Oh flip. You too? Set those steps to music and you would have a proper demonic dance. I was first told last August that there was a possibility of anaemia which was when I trotted off to see the GP to no effect. Had three phials of blood taken at the hospital yesterday so I should get the results through by Wednesday. I hope your results come through soon too and it's not too bad

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Thanks Gnarli ....I will be angry if it is anaemia...I always ask about it as my mother had it & was quite poorly with it.

This time I will " get on the case" & make life 'difficult' for people if I don't get answers pronto.

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It's unfortunately the only way to get any action these days it seems. The shy bairn gets nowt. Good luck

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I'm pretty relaxed most of the time...but woe betide if my GP has just been rubber stamping my bloods..I just look at them & bin them.....after 20 years I obviously got too complacent.

Of course I may just be having a rant & there is nothing wrong!

But nothing like a little incident like this to wake you up, is there?

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Unfortunately, I don't get copies of my blood results so this came as a surprise. I could have done without it but it is what it is

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Yep.....but the way I look at it, it's best to know so that something can be done about it sooner rather than too late.

I have emailed my rheumy nurse & asked her to look at the blood results from yesterday's tests next week, & let me know her opinion.

But I expect if any of the results are "off" there will be more tests.

Don't have time for all these medical appointments...do you?

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True. There's been a sort of medical appointment every day this week. Himself and I say that if it wasn't for health appointments we'd have no social life

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I do feel like just walking away....then I remember the alternative!

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Indeed. Onward n upward eh?

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Rooting 4u here in the 'frozen north', and for Gnarli too... life can be a bitch so am off to los abrigos soon for a few days boost. Hope there'll be good news 4u n Gnarli when i get back XOX

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Oh that is so kind. I hope you have an amazing and warm time away, GranAmie x

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Enjoy all those lovely fishy meals in Los Abrigos!

Did you know the huge new hotel is finally opening in San Miguel de Abona next month..might be worth a trot along the coastal walk past San Blas to have a peek.

When I was last there building had started again which is encouraging,but will mean it's more crowded......shame!

I'm not out there until February, but if my infusions go well in December, I might have 10 days there over Christmas.

Have a lovely time,I'm very envious.

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Hi Gnarli

How are you feeling this evening? 🤗

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It's ok, thanks for asking. I've decided to be a happy bunny. It gets me through.

Did you get your nails done?

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Hi Gnarli,

I’m not sure if you got my reply, it doesn’t appear to have sent 🤷‍♀️I’m not getting everybody’s photos either very frustrating🤨anyway hopefully this will send, glad your feeling a bit better, being a happy bunny helps, I find upbeat music helps me 🤗 had my nails done lilac with silver swirls 💅🏼🤗x

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I didn't I'm afraid but, wow, I'll bet your nails look fab x

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I’ll try post a picture 😁x

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Its aa bummer when you feel ... what next ... but you are keeping on top of it, as weary making as that can be, by the appt you have. Really good you will see a gp that listens so a strategy can be put into place that you are ok with if its needed. Completely understand frustration. So often we are not listened to so thats a positive.

Treat yourself this weekend if thats an option.

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Thanks Ruth. That's so kind of you.

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Hi Jan. So sorry you are so low. I felt very much the same as you a few years back and it was found I had a B12 deficiency, so now have an injection every 3 months, a week or two before its due I certainly know it time for it. Having suffered with anaemia for years this injection has been a great help. Look up B12 on the NHS site it shows how important this is. All the very best Jan. X

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Thank you Gigi. I looked it up yesterday and scared my self a bit. Jx

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Just wondering about your diet a bit. Using cast iron helps as iron gets into the food quickly. Also and obviously, beef is good too. Just an old butchers wife here, thinking of ways to improve things a little.

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That is very kind of you. However, i could not lift cast iron pans and eat very little meat. I do however, eat eggs, dairy, cruciferous vegetables, chickpeas, dried apricots etc. I blame methotrexate for killing my appetite and making me dislike meat. Ho hum

J

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Oh, sorry. That’s all true and awful.

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I looked up B12 too & got very depressed when the last "symptom" was noted as Old Age!

Does that mean everybody then? Cos we will all get old!!!

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Flippin' 'eck. Well, if that's a symptom I really don't fancy the treatment to stop it!

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Hi AC I had a look through the NHS site and couldn't specifically see Old Age. I saw 1 in 10 for people over 74. I have a b12 deficiency caused by anaemia as far as I am aware. I was extremely low in mood when I had my bloods tested for b12, I had asked if I could have an iron infusion instead of the usual iron tabs for low ferritin levels and the side effects caused stomach problems and constipation. It was then my doctor decided to test for b12, these were low enough to go on injections . It makes such a difference. I eat meat and have done since being told off for virtually cutting it out of my diet by my doctor. I eat a lot of fish and veg too. I wasn't told I have PA though. I browse the Thyroid site and b12 comes up a lot for people with Hasimoto's which I also have. I am also on lansoprazol, that can also be a problem with converting b12 from the food you eat. I've had anaemia for years, one of the joys of RD I believe. All the best with your tests. X

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Hi Gigi....The symptoms I read were Extreme fatigue,Brain fog, clumsiness,Balance problems,Dizziness,Numbness,Pins & needles, Burning legs & Vertigo + Old Age!

I Just thought when I experienced any of those(except the latter!) it was side effects of the RA.

It also said Shortness of Breath,Tinitus, Mood swings & Constipation..which I don't experiences!

As you say it also mentioned Lansoprazole, plus Rinatadine...which I take somtimes.

In fact all the above could apply to almost everybody at some time or other couldn't they?

But I was (am) hoping some treatment might help with the fatigue, which has become really severe lately.

The blood test results hadn't come through this morning.....so I'll just have to keep phoning...my GP surgery won't phone ....it's strictly DIY.

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Now that was interesting, AC. Apart from burning legs and vertigo, that's me to a tee. I hope your bloods come through soon and give you a clearer picture of the way forward

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The burning is awful!

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It sounds horrible and i'm so sorry you get it. Is there nothing to be done?

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Well I've had Vertigo ever since I had Labrythitis,& I do get burning legs....so if Adding B12 will help even half of the symptoms ...lead me to it.

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Hi AC I maybe looking at something different, my next B12 injection is due next week, already flagging a tad. It states if you have anaemia caused. By a Vit B12 deficiency you may have, a pale yellow tinge to your skin, a sore and red tongue (glossitis) mouth ulcers, pins and needles, changes in the way you walk and move around, disturbed vision, irritability, depression, dementia. I really don't think the GP's take it seriously enough. I always thought my GP was pro active and I think should have tested me years before. I had a first Respiratory appointment today with a consultant and one of the reasons I have a chronic cough is my HH and needing to add Gaviscon to my PPI, I asked him regarding absorption of b12 from foods and he replied I shouldn't worry if I am on b12 injections. My bloods are on the hospital screen, so I didn't have to have another BT as kidneys fine. Booked for a CT scan as checking up on my lung scarring. It goes on. Hope you get some answers soon. X

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Well my blood results were not with my GP practice yesterday, so I'm no further forward.

I don't think I have a yellow tinge to my skin butb I have a fading suntan & can't really tell, no sore tongue or mouth ulcers, but I do know I am achinglyy tired, have lots of neurological symptoms as mentioned & no appetite. Of course that could just be RA side effects& my Rheumatologist did suggest B12 deficiency. I don't have any other conditions.

I know most of the GP's at my surgery won't take it seriously, but a couple will - so even though I will have to wait 2+ weeks I will try to see one of them.

I know I'm no Spring chicken & I obviously can't expect to be able to carry on as if I were even 10 years younger, but I'm sure this feeling of utter exhaustion when I have been up & about for a couple of hours could quite possibly be some sort of deficiency ,& if it can be alleviated by pills or injections - I want the chance to try them.

But getting this through to young GP's who are under orders not to spend money (probably especially on those over X years) takes a lot of "working at"........but despite wanting to sleep all the time I will keep at it.

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All this waiting is nerve racking and I feel for you. Like you I was blaming the RD, fading tan, MTX, in fact anything for the symptoms I was getting. I hope you get some help soon.

Funnily enough I received a letter from the GP surgery today telling me to get a blood test and make an appointment with a GP or nurse practitioner. Spooky!

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Letter from GP....how civilised..... I have never had a letter from my present GP except to ask me to sign a form if I want to register on line. Which I did...& can never access anything I need! Over last weekend there was one appointment available(there are 8 GP's) with a GP I would rather self medicate than see!

I'm now trying to find out if the FLUAD Adjuvanted flu jab is OK if you're on RTX...I'm due to have mine 36 days before my infusion...& I don't want that cancelled because of an adverse reaction ...but all I get is blank stares.

The pharmacist who did myScrip review didn't know, & I forgot to ask my rheumatologist- brain fog...I have emailed the manufacturer, but don't have high hopes of a reply. I think I might pop into the unit where I have my infusions & ask the Biologics nurses.

I've decided No answer No jab, unless they will give me the under 65 one.

I'm beginning to understand why 70+ don't bother going to their GP. All they get is a metaphorical pat on head & a runaround!

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Just got email from Rheumy's secretary with letter he dictated....panic over....the blood tests came back all,OK...but he has three more he wants to do.

So can stop worrying now...guess my tiredness is just (!) RA.

I think maybe my week down in London was more tiring than I realised & I am just catching up on lost sleep!

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Thank goodness for that! It must be such a relief for you. Sleep tight

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Hi AC what are the other 3 he wants to do for. X

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I know, it did me at the time, but properly addressed and treated you will feel so much better for it. We tend to think it's all RD, but you have to deal with each problem as it comes along. I also have Hasimoto's and it's very common with that, I was also deficient in folic acid as well. I also find my GP surgery not as on the ball as they where. I can see on my online records a blood test was due but haven't been contacted, this was a month ago. I have blood tests for my rheumy hospital, but unfortunately not the same health authority so they aren't sent automatically to my GP. My GP dispenses my mtx so they have to contact the lab for an update. When I do have a blood test for my doctor, they are usually high or low in something and he writes up ' To be expected' all the best, and chase them. X

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Thanks Gigi. Wise words as always

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I hope you get some sense from this GP and some good care. Sounds like you need it. Sending fattening, strengthening thoughts.

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Thank you. I have high hopes. All my life it's been a struggle to stay slim and now, how ironic, I have the opposite problem. Pass the croissants

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Hello Jan, I feel for you. I know the feeling and it's not very pleasant. When I am at that point, I think back to what I was like in the first year after diagnosis and now. That makes me stand back and think. I can do this, I am strong, I have been through far worse. I am in that moment right now for various reasons, so let's hope we all get through it well. All the very best.

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Thank you for your kind and considered response. I'm sorry you've got the horrible merry-go-round that is our NHS ahead of you too. I'll find my backbone again and get on with it

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Hi lovely .my bloods are up and down .and only because i have read from all these lovely people here .since late june i.ve been asking for copies of my bloods .as i.ve been feeling so tired.white cells red cells haemoglobin haematocrit neutrophil all low. And in july my alt was 47 high but not too bad .haemoglobin 110 red cells 3.56.

Haematocrit. 0.34

Neatrophil 1.4

I started on b12 weekly .now 12 weekly.

Not feelin 100%.

Because i ask for copies i asked the question why is my blood still low .my doc and my rhuemy nurse both say different things .

But i am hoping to feel abit better soon next jab november.

Keep asking questions .they don.t like it..and ask for copies .

Hope you feel better soon Jan .

Big hugs kathy xx

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Many sympathies for you, Kathy. Yet another rotten lousy thing to put on the list. I do ask but obviously not the right people and I'm not sure how to read them anyway. You've got to be some sort of genius to manage our condition. I hope you feel better soon too. Big hugs back Jan

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Keep smiling lovely xx

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Painted the grin on this aft xxx

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Best wishes . I hope things work out .

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Thank you. It'll be ok I'm sure.

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