Come here to winge : Apologies don't mean to bring... - NRAS

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Come here to winge

Marionfromhappydays
Marionfromhappydays

Apologies don't mean to bring anyone down, just wanted to shoot the breeze with people who will understand.

So my migraine situation continues, this has been 8 days although gladly today it's downgrading to headache so feel like a winner today. I've not taken my methotrexate as instructed as from now on i obey the rules and not going rogue 😜

I had my fortnightly bloods done yesterday and 8am this morning get a text from GP saying I've been booked into have a blood test Friday 🤷‍♀️

OK so I'm guessing my bloods from yesterday are abnormal, so I phone GP and ask receptionist were any of my blood results abnormal why am I having a repeat test; She laughs says I'm booked in for Friday... yes I know that thats not what I asked (I didn't say it like this to her but come on lady im anxious here) all she can tell me is what's on the screen and GP requested repeat. I'm frustrated.

Now my mind is escalating things up, I use to work in the lab and the fact they got the result back so quick (gp asked yesterday same day blood was taken for repeat) means they flagged it as urgent and it needed action.

Sometimes a little knowledge is worse than none at all; I swear my brain is sending me pictures of me in A&E being attended to by George Clooney in ER 😁

Last Friday my migraine was so bad I wanted to bang my head against the wall to get some relief, I have been asking my GP for help and was prescribed sumatriptan but it didn't work, I phoned again Monday and they prescribed amitriptyline but I felt there was an underlying cause and they just wanted to give me pills. Then I start doubting myself as I didnt listen to medical staff before (haven't taken the amitriptyline though) and I should do as they suggest.

Now after my blood test I am wondering if this might be the reason for my bad head. I'm overthinking things aren't I? Since having RA I've gotten so much more anxious and I don't like it.

Thanks for being here for the brain dump, hugs x

43 Replies
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Hi - it is frustrating and so easy not to become anxious - all I would say if it was an absolute emergency they would be telling you to go the hospital - you don't know until you know right.... Don't stress it out wait until you hear from them or go back and look for the reassurance if possible.

Right now I feel drained and wheezy, the injection spilt on Monday and I blame it all on my RA 😬.

Take care, rant here if you need too.

Sorry to hear you aren't feeling 100% today, hope you feel better as the week continues.

I'm just cheesed off as I wanted to know exactly what was wrong with my bloods but think I just need to chill out and as you said anything terrible and I would have got a call in x

Take care

Thank you, you too 😊

Hi Marion. I'm really sorry to hear that you're still suffering, I used to get really bad headaches but not as bad as yours from the sound of it.

Yes, maybe you should take the Amitriptyline, it can only help your headaches and hopefully make you feel better - it could also help with anxiety as you seem to be getting yourself stressed out, but there's no way you're going to know about your blood tests yet until the GP is ready to share. I understand that you're worried because you have to have repeat bloods, but is there some way one of those results could have been spoiled in the lab and that's maybe why you have to have a repeat - you would know whether that can happen as you used to work in a lab? I suppose it could be a possibility. I hope that you'll be feeling better soon and that your new bloods are all fine and you can then relax. 🤞 xx

Thank you x

Yeah i am getting myself stressed, I need to chill out. I can find out more on Friday, I was never very patient 😁

Patience is a difficult thing to have when you've got all that going on, I understand how you're feeling, just hope it will all settle for you soon. xx

Don’t stress.. it could be for any number of reasons. Thus has happened to me 3 times. First time blood was contaminated in lab. Second time my blood test showed I was in kidney failure . The third my blood results were high for my liver . Each time I was asked for a repeat test and not told the reason why until repeat tests. Why they scare the bejeezus out of us I’ll never know. If it was a really important you would be A&E by now. Deep breaths.

You can winge anytime 😉x

You've been through it 😲

There was nothing wrong with my blood tests in the end. 🙄 they should just tell us an over active imagination is a stressful thing. X

Flippin eck, they totally put you through it.

I have been emailing my rhemy nurse this week so emailed about the test so hoping they can look it up and tell me. Tad fed up with it all at the moment x

That makes 2 of us x

Hi M - my God I can sympathise. The head thing is the worst. However, I am surprised that they would prescribe amitryptiline as you are certain that the migraines are caused by mtx. I've been down the amit. route in years gone by and it was great until one day it wasn't, just like all the others. Actually as far as the migraines are concerned I don't know what to suggest. I had me neurology phone appointment and the consultant said the total opposite of what the migraine specialist said and the suggestion that I take Topiramate has made decide that I am going to give up trying to get onto a good preventative medication. I asked the GP why I have never been offered the new calcium channel blockers and he said it's all to do with the consultant and what he/she knows about migraines, latest research etc. I'm being offered a second opinion but I'm not holding my breath. I have accepted that I will never be free of cluster headaches and that all I can do is treat them as they arise. I'll never work again, planning anything like holidays, weddings, christenings etc will always be a problem. I'm lucky that I have an amazingly supportive husband who does everything when I'm out of action.

Have you researched if headaches are a symptom of mtx and if so do they clear up after a while? The info on sulfasalazine was quite blunt that a lot of people can't tolerate it because of migraine side effects. It never mentioned that they can go away once adjusted as is sometimes the case with other unwanted effects.

Let us know the outcome of the blood test. Take care x

I have so much sympathy for you, you must be strong within yourself to keep battling on.

The GP wasn't really interested (they are never the same GP so I speak to different ones and some listen more than others !) So its not so bad today so I'm not going to take it.

Yes migraines can be a side effect if mtx but don't think its common, I know headaches are common. I rang tha NRAS phone line and the lady was fantastic and she said she had spoken to someone with migraines on mtx too just that day so they are a thing.

Thanks for your reply x

Hi, was the sumatriptan in pill form or did you inject? I inject so it’s straight into the bloodstream. Pills didn’t work for me either.

Pills, first one worked but after that the others didn't 🙄

What a shame. Migraines are so debilitating aren’t they. Hope it eases soon. They have been a blight in my life for so many years. 🤗

You have to take medication at the first hint otherwise they often don't work. It's taken me years to accept it! I have absolutely no idea why. I lie there thinking 'oh, it'll go away ' when it never, ever has done!

My attacks are very dramatic: I used to throw up and wet myself. So when registering at a new surgery they would say I had to come in before they would re prescribe injections, I got sick of it and took them at their word. Got my husband to take me in. They weren't happy. That got them to take notice though.

In the last three years the attacks have got worse and changed into cluster headaches. No more puking but days of on and off extreme pain where all I can do is get on all fours and gently bang my forehead on the cold bathroom tiles. When, at the beginning of lockdown the surgery refused to prescribe more than 2 sumatriptan injections at a time, I ended up at A&E, three times, (curled around the chairs, pushing my head against the cold tubes and moaning) to get oxygen and intravenous painkillers, but the staff were furious with the surgery for not managing my condition. That formed the basis of my formal complaint and I received an apology and now have several boxes of injections in my bedside cupboard. ...which reminds me, need more Zomig!

The point I'm trying to make is that the GPs don't take it seriously and most people in general don't understand it. I've lost count of the times friends have said, 'oh yes, I've got a migraine today...' while they're on phone to me, doing the housework or just generally getting on with things: I can't speak or see properly when I have a bad head let alone make dinner.

It sucks, I'm at a stage where I really don't know what to do. Still, I have my second opinion option which the sympathetic but clueless GP is arranging.

You need to keep going back to keep the dialogue going and don't be afraid of telling it like it is however dramatic it sounds. X

I really hope you get some questions answered as to why you are having these migraines; It must zap all your energy fighting them x

No chance of getting a call back from your doctor to at least tell you why he wants more bloods done? Tell them it is stressing you out and that’s not helping your headache.

Could be something as simple as someone has dropped your sample on the floor or maybe it haemolysed.

I had to go for more thyroid tests once because the label hadn’t come out of the printer properly so the sample couldn’t be sent.

They have done all my others tests on the sample and the Dr specifically said just to repeat u&e on Friday specifically so think there is an issue with my electrolytes.

Just wish they would tell me why, all seems a bit cloak and dagger.

I knew my results were abnormal but had to wait 10 days to speak to GP to know what she wanted to do about it. The phone consultation was 1 hour later than booked!! My anxiety was through the roof, BP high when I had hoped to reduce or stop my BP drugs. It was OK in the end but I felt I was telling her what to do as she had obviously not prepared for the consult! This is a surgery with an outstanding ofsted!!!! Goodness knows what other surgeries are like. Just about calmed down now.

10 days, that must have been so hard to wait that long. Glad it was ok in the end x

One thing is sure if it was a bad problem then you'd get a report to A&E main desk as we have a bed booked for you phone call. Or at least thats what happened to me and I did have kidney failure.

Sorry that happened to you xx

No it's not really a huge problem really. It was but function has gone up to GFR26 and that means a lot of fatigue but it doesn't hurt. But I think even in these turbulent times if it's an emergency they still act quickly so try not to worry. When the doctors panic to get you in hospital thats when panic really sets in or they say don't worry we'll look after you. I wasn't bothered too much until that was said. lol x

Pretty much the same for my Graves. Saw doctor on Wednesday, bloods takeN on Thursday and by Friday I had a prescription for carbimazole, an appointment with an endo - albeit three months in advance and instructions to go back for another blood test in four weeks time.

After that blood test I got a letter from m endo telling me to double my dose of carb. So if things aren’t good they can act quickly - you hope!

Oh wow they can move when they want to then 😄

Xx

They can indeed. Must say I was very surprised to take a phone message from the doctor when I got home telling me she had left a prescription for carbimazole at reception for me plus the rest.

Well I knew I wasn’t well, hadn’t been for ages either and had been fobbed off - only a month or so before that one bright spark GP had looked at me like I was some sort of weird specimen and told me I was ‘needing my holiday’.

Has the sample been lost/leaked/clotted? Could just be that (I have all three and just been told I need the test repeated).

They've done the LFTs and CRP on the sample and you only need a few ul to do the u&e so I'm presuming its a repeat because its abnormal but I am only presuming .

I will ask today as its playing on my mind. Thanks for your reply x

I don't know why GPs do this, why not just say why you need another blood sample taken ?

I've been there too and it scared the life out of me too, turned out my WCC was a bit low.

I'm really hoping it's something borderline , my mind has been churning this over all night and its not doing me any favours.

I will contact the surgery again today and find out what's going on. You would have thought they would know people worry 🙄

Let us know how you get on ?

I sent them a message this morning and just got a reply saying my electrolytes are a little raised and need a repeat, Dr will ring me next week to discuss 🙄

I really wanted some more specifics but hey ho !

I had bloods taken a few months ago, my GP seemingly requested them and I don’t know why. The results came in the next morning, I had a call from receptionist saying they want to repeat them in four weeks. I asked the nurse what was wrong with them, she thought my white blood count was low. This happened for three months, I still don’t know why. I had a call from my haematologist yesterday and she noticed that I had them done, she didn’t request them but told me they were fine, all my worries were for nothing. Looks like I’m not getting a f2f anytime soon, she has put me in for a call in six months time but wants me to go to the hospital the week before she calls me to check my bloods. I have lymphoma and I have just got to check myself now but she did say if I’m worried just to call her, I’m on watch and wait. Think this is the new way forward, or is it backwards .?...

So glad they were ok, like you said all the worry that ensues when you think something is abnormal but they won't tell you !

I guess you're going to have to be extra vigilant, get on the blower ASAP about anything you notice x

Take care

I really feel for you, I had the Rhuemy pharmacist call me to tell me to get repeat bloods 3 weeks ago and not to inject my biologic until I had heard from them, of course I haven’t heard 🙄

Hopefully it’s just a glitch in the lab,wish you better with the headache soon xx

Thats such a pain, I guess you are going to have to chase your results?

Take care x

If I can remember to 😄

Hope everything is okay with you and it’s just a lab glitch 😊xx

Oh you just don't need all that extra anxiety now. There is enough if that about already. A few months ago, I had a blood test and got called by the GP the following day saying to get someone to take me to A & E as my potassium levels were so high that I might have a heart attack. So, I drove myself to A & E and was seen immediately, ECG etc. They repeated blood test and potassium levels OK. Thought the phlebotomist who took first blood test had caused the problem by asking me to make a fist! So, I know how anxious you feel but fingers crossed when bloods repeated you will get a normal result. My thoughts are with you.

I bet you put the phone down after that call and thought flippin eck !

Good that is was a false alarm, my rhemy nurse told me my results today so thats stopped me worrying x

Take care

Oh dear been there done that and got the t-shirt unfortunately. I was sent to A&E by GP coz of abnormal results four days after they’d got the results so they were covering their arse, turned out they weren’t my bloods at all the nurse had mixed them up with another patient. I was furious had to spend 8 hours in A&E just for them to check them again and then again had to go back the next day too but they were absolutely fine. I did feel so sorry for the poor devil who’s bloods they were though because they never found out I suppose. Added to that I have zero immune system working and had to sit next to a guy in A&E with suspected TB in the end I told them if I had to wait any longer for results I was going to discharge myself coz being in the middle of a massive flare at the time it did me no favours whatsoever. It doesn’t help when you have knowledge of blood results etc as I worked in path lab for 10 years too so kind of knew what was going on. I’m sure it’s not as bad as you’re expecting just protocol I’m sure and really hope the next results are ok because dealing with a migraine and stress really doesn’t help. Feel better soon and moan or vent all you want.

Gawd bet you were stressed ! Poor person whose blood it really was , hope they found them and they got treatment.

Migraine gone today *touch wood* 😀

Thanks for your reply x

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