Newbie unsure how to get a diagnosis

I'd like some advise please. I'm not yet diagnosed but I do think it's a possibility. I am 41 but to be honest feel more like 81 😣. My bones & joints ache all the time & I'm also tired all the time. I could lye in bed all day if I didn't push myself to get up. I did my knee in back in 2009 & it used to only hurt after I'd done too much or sat down to long. Now it hurts most days & evenings & I have to sleep with a pillow between my knees. I also unfortunately suffered a bad (displaced) fracture of my 5th metatarsal last year in July. It took a very long time to heal & it was discovered I had osteopenia & low vit d/calcium so I now take supplements. My vit d level is quite good now but I have had 2 blood tests in the last 2 months with my inflammation markers (ESR & CRP) both raised & getting higher. I also have a very high b12 count - more than double. My GP isn't doing anything about it stating I probably am just fighting an infection & she would only be concerned with a low b12 test not a high one. This concerns me as everything I have read says a high b12 shouldn't be ignored. My consultant last year when I broke my foot thought that I may have rheumatoid arthritis but typical NHS didn't do anything about it. I am fortunate to have private health care cover now so want to press my GP for a referral to a rheumatologist but don't know who to go to. I also have/had endometriosis & I know from personal experience that skill level amongst endometriosis specialists vary. It took me 20 years to realise this & seek out the best treatment available to me. I finally found an accredited endo specialist last year & underwent almost 7 hours of surgery to thoroughly remove my endo. I really don't want to wait 20 years to receive the best treatment available to me if similar issues exist within rheumatology treatment. Therefore could anyone please recommend a good rheumatologist? I live in Northamptonshire (East Midlands) but am willing to travel to most places within the UK except London if I can help it as I'm not too good on trains! I travelled 3 hours north to see my endo specialist so driving further afield for good treatment does not phase me. Any help/advice would be very much appreciated. Thanks.

13 Replies

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  • Are there other GP's in your practice. Sometimes a second GP opinion can help and they may be willing to refer you NHS but it could still take a few months to get an appointment. There are some on the forum who saw their local consultant privately first and he then saw them under the NHS after as this is an ongoing condition and appointments are often either 3 or 6 monthly. Farm

  • Thanks for a quick response. Yes there is another GP in my practice but appointments with him are like gold dust - everyone likes him! Similarly in the endometriosis world many women end up paying for a one off private consultation with an endo specialist and transferring onto their NHS waiting lists afterwards as it's often a nightmare getting to see a specialist with diagnosis on average taking 7.5years. Many women are told the pain they are experiencing is normal or made to feel like they are a hypochondriac with some even being referred to mental health specialists as it's clearly all in their head! I lost 20 years of my life really to endo enduring 4 inadequate surgeries, medications & induced menopause with horrendous side effects before finally seeing an accredited endo specialist. My GP didn't even know that accredited specialists existed until I told her despite it being clear in the NICE guidelines that women, particularly with severe endo, should be referred to one of these specialists! So I must admit I'm worried that it may be the same within rheumatology & would really like to cut to the chase this time & see the right person from the outset. Do you know if skill levels amongst rheumatologists vary or are they all trained to the same standard so it doesn't matter who I'm referred to? Unfortunately experience & knowledge of endo does vary amongst gynaecologists with some not able to even recognise endo as it presents in different shapes, colours & size. In fact my first exploratory surgery with a non endo specialist didn't find endo but it was there! I really want to avoid losing another 20 years of my life to a horrid disease before finally receiving the right treatment 😣.

  • Do ask directly what your practice guidelines are for referral to rheumatology, as you may well find that the GP wasn't really on the ball. Normally high inflammation markers, morning stiffness and tender/swollen joints over 3 months should be enough. So be a bit assertive.

    Also if your GP knows that you want a referral to go privately then they might be more willing. And then ask your medical insurance for their list of rheumatologists, as they often do provide lists of people they work with regularly.

  • Thanks for a quick response. Yes there is another GP in my practice but appointments with him are like gold dust - everyone likes him! Similarly in the endometriosis world many women end up paying for a one off private consultation with an endo specialist and transferring onto their NHS waiting lists afterwards as it's often a nightmare getting to see a specialist with diagnosis on average taking 7.5years. Many women are told the pain they are experiencing is normal or made to feel like they are a hypochondriac with some even being referred to mental health specialists as it's clearly all in their head! I lost 20 years of my life really to endo enduring 4 inadequate surgeries, medications & induced menopause with horrendous side effects before finally seeing an accredited endo specialist. My GP didn't even know that accredited specialists existed until I told her despite it being clear in the NICE guidelines that women, particularly with severe endo, should be referred to one of these specialists! So I must admit I'm worried that it may be the same within rheumatology & would really like to cut to the chase this time & see the right person from the outset. Do you know if skill levels amongst rheumatologists vary or are they all trained to the same standard so it doesn't matter who I'm referred to? Unfortunately experience & knowledge of endo does vary amongst gynaecologists with some not able to even recognise endo as it presents in different shapes, colours & size. In fact my first exploratory surgery with a non endo specialist didn't find endo but it was there! I really want to avoid losing another 20 years of my life to a horrid disease before finally receiving the right treatment 😣.

  • Firstly welcome, secondly I've been exactly where you were 're finding an endo specialist & subsequent fertility team. I initially went private for both in spite of not having private medical insurance. Fortunately the one I saw continued my treatment on the NHS as my body determined so only needed to pay for the initial consultation & MIS laparoscopy.

    Regarding Rheumy specialists I think helix's advice is the better option, if you choose to go private for investigations & diagnosis often GP's are in a better position to arrange initial diagnostic appointments more speedily, as a rule there's less waiting time than on the NHS but do ensure whoever you choose can transfer you to be seen in their NHS clinic.

    Your medical insurance company should have lists of associated recommended specialists but if anyone here is also able to recommend one I'm sure they'll reply, word of mouth is generally the more successful way of securing the 'better' ones.

    I would also persevere to get an appointment with the popular GP, if only to prescribe appropriate medication, NSAIDs &/or pain relief in the interim. You could also take the opportunity to ask his advice 're Rheumy's & whether it's necessary to go private or not. He will (or should) have an up to date list of approximate waiting times for each speciality at each hospital within your local NHS Foundation Trust to help make an informed decision & if it is indeed necessary to go private.

    Good luck & keep us updated.

  • Hi confusedandworried

    Rheumatologist are all equal, just that some are more equal than others. 😉

    My own experience of referrals etc is as follows:

    I too had private cover when I first became ill. However I had zero experience of how the system works.

    After months of (allegedly) incompetent locum GPs I was referred on for investigation. It wasn't clear at this point what was wrong so I was initially referred to a gastroenterologist 😀 and, long story short ended up seeing a rheumy privately.

    Eventually the insurance company pulled the plug, as they do with chronic conditions, and I was transferred to his NHS list.

    He was a good rheumy, no complaints, but based 30 miles from me (long story), so I decided to find one closer to home.

    I was lucky enough to have some contacts who did a bit of investigation for me and came back with the name of a Professor in the city I live. It turned out he didn't do clinical work. The next name that came back was his 'right hand man', who did do clinics.

    I have never seen him privately so have no idea if he does private work, but I can't praise him highly enough and I have always been more than pleased with him.

    Unfortunately as with most of the NHS these days there is obviously an increasing pressure on the department he works in. For the first time in over 10 years I saw his registrar about a year ago, although I have seen him since.

    As well as rheumatology I have been lucky 😬 enough to need several other referrals over the last 17 years and now know a bit more about the system.

    I would say I have a pretty good relationship with my GPs (living next door to one of them helps, I would consider her a friend), but even before this my experience has always been the same. If I need a referral I find out from the insurance company if I'm covered. I then find out exactly who I want to be referred to (and check they are on the insurer's list - they usually are IME) and go to my GP requesting a private referral letter.

    I then phone the consultant's secretary and make a private appointment.

    I have always seen the consultant I wanted to (orthopaedic, knee, hip, spine).

    I am based in the West Midlands and would happily share my rheumatologist' name with you, I can't tell you if he does private work though.

    Hope that helps.

    Ade

  • Thanks Ade, yes if you could let me know the name & location of your rheumatologist that would be very much appreciated. At least then I can do some research to see if he also sees private patients & get the ball rolling with trying to get an appointment with my GP to request the referral. The GP appointment alone could take upto 3 weeks but I daren't try booking it until I know who I want to be referred to. It would be Sod's law that it would be the only time I get an immediate appointment I don't have the information I need! Thinking back I should have got the balling rolling & pressed for a referral when the consultant I saw regarding my broken foot mentioned rheumatoid arthritis. But last year was one big blur now as I spent most of it in pain & confined to the house 😏. Hopefully we are allowed to mention consultant names on here? If not could you please PM me? Many thanks. Best wishes, Jo

  • Hi Jo

    As far as I know. 😀

    His name is Dr Caruthers and he's based a the City hospital in Birmingham. I'm not gonna lie, the hospital itself has it's fair share of issues, the last and only time I ever have surgery in an NHS hospital was there!

    I won't go into details here, but suffice to say I've always invoked my insurance since.

    However, the medical staff (doctors, surgeons, consultants, radiographers etc) I have never had one problem with in over 10 years.

    I have been on biologics since around 2008 (so they fund that) and the surgery side of my inpatient stay has never given me any problems at all (hip resurfacing).

    Good luck with whatever you decide to do.

    Ade

  • Hi Jo

    I saw Dr Carruthers at Christmas. I was referred to a prof in Birmingham in 2013 and during those 2 years of trekking to and from Somerset, I saw a different Dr at every appointment. Dr Carruthers stepped in to help the overloaded clinic and I thought he was absolutely lovely. He was easy to talk to, thorough and very accepting of and open minded to those cases (like me) that do not fit into diagnostic tick boxes. Hope this helps x

  • Hi

    I think the prof (Professor Bacon maybe?) is the chap at the top of the 'rheumatology umbrella' in Birmingham and surrounding areas.

    My understanding is Dr C is his second in command type of thing.

    I totally agree with your statements regarding him, he is one of the most approachable medical people I have dealt with, and is at the top of his game also.

    He does what needs to be done to ensure the best treatment is given to his patients, regardless of whether they tick particular boxes (I'm thinking funding of meds etc).

    Top man.

    Ade

  • Hello. I am still in the process of being diagnosed I had all the same symptoms as you. I live in Northampton and I am seeing dr Taylor at three shires who seems very good. He has referred me to another specialist as my liver count has gone up and want to get a second opinion before prescribing medication to be on the safe side. I am the same as you but just want to feel well

  • Hi. Great comments from others. I don't think I can add to that but wish you all the best.

  • No recomendations im afraid, but you need to pursue this as early intervention has been shown to be critical, if your private medical cover has a helpline i would call them and try and move things forward directly. Very best of luck to you.

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