Morning all. So, went to see GP Practice Nurse yesterday for monthly MXT bloods. Mentioned the exhaustion to her and she was concerned but said she couldn't test iron, vit D or B12 without GP or Rheumatology request. She advised me to ring Rheumatology helpline which I did. A specialist nurse rang me back - she said that they don't do vit D tests 'because everyone in UK is low due to weather' and if I supplement I'll be ok. With vit B12 she again said if I take a general vit B supplement it will be ok. Other advice, to pace myself and rest between jobs. I tried to explain I do all that but literally can't move off the sofa and she said fatigue could flare just as joints can... so I think I just have to accept it's part of RA and get through it.
It's really frustrating though isn't it!!
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Dobcross1
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Hi Dobcross. I recommend you go to your GP. I have been feeling extremely tired since Christmas when I had a nasty virus. My Blood tests have shown many out of range although they go to my Rhuemy no response from them. My GP surgery often request them so they can issue my Mtx. One of the doctors requested I pick up a form for ferritin B12 and folic acid to be tested. I am on b12 and folic acid anyway. My ferritin levels are low unfortunately the other two were spoiled by the lab. I have been put on ferrous sulphate and will be retested next month. I have suffered with this many times over the years although going on B12 injections a few years back has helped greatly. My doctor has agreed I can have them every 2 months instead of 3 monthly.
I have updated my iPad and now can’t get comers so apology’s.
Thank you, I just didn't know what to do after yesterday but will go to my GP and ask - hopefully they will be more proactive!! Thanks again and hope you feel better soon.
Thank you. Have to say taking iron tabs are a real pain, they upset my stomach so much, but I read taking them every other day helps and fortunately my doctor agreed. Have upped my iron rich foods also. I have a good diet anyway. I have been prescribed Calceos for years now, as tested low for vit D/calcium, also have OP. I hope your doctor will agree to giving you the extra blood tests, fatigue is so debilitating on top of every thing else. All best wishes. X
Have changed my keyboard and now have punctuations !!!
Hi AC. Do you think when the fatigue is particularly bad it's the same as having a flare with pain and that it points to increased RA activity and therefore damage?
I really don’t know. I am lucky in that I don’t work & don’t have children to look after .....I only have myself to organise.... so I don’t have the stress of feeling I should be doing something when the bone aching fatigue hits..I can just cope until it passes.....whether it’s a week or a month. I’m sure not having that stress on top of the fatigue must help.
I’ve had RA for a long time & luckily have very little joint damage as all those years ago there seemed to be more Rheumatologists around & treatment was started after my first consultation ....which I think helped.
It was complete opposite with my mum. Long gone now but diagnosed with RA and OA around 25 to 30 years ago. She was just left. Hard to believe now but she was given a wax bath but other than that told there was nothing they could do. In Scotland. Dreadful. Poor mum 😪
I lived in London when diagnosed & most of the big hospitals had good rheumatology departments.....I was started in Mtx early on & luckily it seemed to work well for me.
I don’t know how I would have coped without it as I was on crutches or 2 sticks within a year of diagnosis.
Thankfully I am plodding on quite well now...but this disease has so many twists & turns...you never know what tomorrow will bring,
Yes you must live in and enjoy the moment (as long as it's not a painful one)! Although that's probably a good motto for everyone 🙂 Mum was housebound for many years and then eventually chairbound. Like you say. So so sad. Although, God love her, she was a strong stubborn woman who wouldn't accept help. Anyway, that's another story. Glad you are able to enjoy your life and hope you're having a good weekend 🙂
Sumdy, I'm so sorry about your mum. I was diagnosed 25 years ago, in Scotland, and have had the best of treatment from day one. I have a great team at the hospital, which is 35 miles away, and my own GP is also very supportive. I have seen the same consultant for 25 years! Everyone has a different story to tell, I know, but I have to say my experience has been excellent. It's such a shame your mum's treatment wasn't so good.
Well it was on Lewis in the Outer Hebrides but the NHS should be the NHS regardless. I'm glad your experience was very different. I was surprised when I was diagnosed myself and discovered when DMARDS were first used. Mum's treatment could and should have been very different. Have a good day LadyinGrey 🙂
I just wanted to drop a wee line to say, firstly that it is horrendous how badly your Mum was treated. I think on the Islands the NHS was 'limited' up until the new hospital was built. I'm being quite generous with the 'limited' :-).
However, I'm living on Lewis and I think I'm probably in one of the best places for treatment for my RA that I could be in for treatment within the NHS. We have a dedicated Specialist Rheumy nurse (Alison) who literally is only a phone call away. If I need to see her I've never had to wait longer than two weeks for an appointment. She will come in from her holidays if somebody is really bad and she doesn't just treat you as a number, she actually cares about the other stuff that come withs RA, the depression, the effects on relationships, etc.. We have weekly access to a small team of extremely dedicated and proactive RA Consultants, who fly up from the mainland for a weekly clinic. I had major issues (3 years) with MX and finding the right combo of treatment, but with the understanding and support of the RA team I can say that I'm actually able to have a bit of a life. As well as all of that I am fortunate to be living in one of the least stressful and happiest locations, there are stats somewhere that support that rather grand statement. What is concerning though is the tremendously high percentage of RA in what is a very small population? and it seems to be growing? A thought for discussion, does the number of GP referrals to RA clinics increase once there is a local comprehensive and dedicated service available for the treatment of RA?
Thank you for that WickedWeaver. An apt name considering where you are 🙂 I'm very glad that you are so pleased with your care. I too am pleased with mine so far on the Scottish Mainland. I consider myself extremely lucky compared to some. However, both mum and dad were shockingly let down by the NHS on Lewis. Dad repeatedly saw his GP for years with symptoms of bowel cancer which were put down to side effects of medication.....Another story not for today. I still have family on the islands so have a vested interest in hoping that things have improved throughout the NHS and not just in rheumatology. Although I suspect good or bad treatment will probably come down to seeing individuals who are good at their job or not so good. Something which will apply in all NHS authorities. Indeed in all aspects of life. It's the luck of the draw.....Wishing you well 🙂 And yes it's a beautiful place to live but depression and suicide are rife and have been for many years. Why? As for referring more patients with RA if you have a good service for them to access...surely not! 🤔
I had extreme fatigue for months myGP tested my B12 and vitamin D . My VD was low even though I take a supplement have since found out you need VK2 for proper absorption . This has made a difference.
Actually I think that is a pretty feeble answer. Yes it is true that most of UK population is low in Vit D in winter, and many have low iron and B12 too. And in those sorts of cases an over the counter supplement will probably sort it.
However, you have RA. And people with RA can struggle to absorb/retain vitamins, so it is only right and proper that you should be checked every now and then to see whether you are abnormally low. I get tested once a year, usually early autumn. In general I can manage to get to a normal level of Vit D in summer, but then it plummets and I need supplements. And not OTC ones but full strength.
Thanks HH, I will definitely ask my GP for the tests as I probably can put up with it if I know it's not solvable, ie levels are OK, but if I can do something to help this I will do. Sometimes you get fed up of just soldiering on!! Thanks again for your informative and encouraging reply.
One really good thing about France. Had my D3 level checked after taking 5000unit’s for years. and lying for years in the Provence sun.Surprise surprise! My level way below what I had expected, The doc gave me a dose of 600,000 units and said RA pas should get one 3x a year. What a difference it made.
Don't supplement until you've seen GP. B12 could be Pernicous Aememia which is a specialist test most GP's I'd have thought would do this test. OTC B12 would not really do anything if you have PA and has he done Thyroid as that also causes fatigue.
Hi, just wanted to add that if you get nowhere with the GP (as I didn’t!) then you could consider buying a private test online - there are a few different providers out there, who will send kits to your home which you then send back to be analysed in their labs. Obviously, there is a cost, but if your fatigue is overwhelming it may be worth considering to rule something in/out?
Thank you! My husband joked earlier that it's a shame you cant buy your own test kits - we didn't realise that you could! I will definitely do that if the GP won't help. Thanks so much that's incredibly helpful.
Went Friday to Drs for annual prescription review. While there asked about my recent blood result ,said I'm not anemic but as been a year since B12 tested wants me to have this and a fasting glucose one done . Having this done next month along with all the regular ones I have done each month. Asked about taking vitamins but said prob be a waste of my money.
Had a bit d test and very low. Rheumatology at hospital have a standard system for low bit d. Very high dose for 2 weeks then a daily maintenance dose. My GP said it is just a fad but had to prescribe tabs when hospital letter arrived. I am a lot less depressed in winter now. Over the counter tabs are a lot lower dose than even the maintenance dose
My rheumatologist, who is generally adverse to supplements, put me on Vitamin D3, a Vitamin B compound, and magnesium (as well as the usual folic acid to counteract mtx side effects). It's her protocol for all RA/PsA patients.
I had fatigue and aches and the rheumo nurse said this could be Vit D deficiency. My GP organised a blood test, the nurse was right, I was given a super high dose Vit D for a week to get my levels up and then prescribed a daily dose. I take an oil capsule, as the chewy Bit D and Calcium tablets have me terrible indigestion. It did the trick and the aches, pains and fatigue improved in a matter of weeks. Good luck.
Yes Dobcross very frustrating. So are you already taking B12 or general vit B supplement? Also do you supplement vit D? My GP did check my vitD which was low in my case. Put on a 3 month course to build up the levels.
So if you 're concerned about that your GP maybe able to help.
The fatigue is dreadful, have a couple of reasonable days then hit by an infection, or flare, or MXT injection symptoms, and wham exhausted.
I had reflexology today and half way through could feel the fatigue lift.
Thank you, yes I take a complete vit B and a vit D supplement - both over the counter. What I hate is the unpredictability of the fatigue - one minute fine then wow want to lie on the floor, so tired! I hadn't thought of reflexology though I've had it in the past so I will give it a go. Anything that helps to be honest! Thanks again.
I have been prescribed Vit D for several years now as not only, being white, does it get low but my medication doesn't help, I take 2x500mg daily. Have to be careful as I have osteopenia, verging onto osteoporosis which is not as common in a man.
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