reached a road block

so over the past few weeks my health has been all over the place. I have had days or moments where I have felt fine and other points where I have felt so rubbish that I wanted to over dose on my pain relief medication.  Most noticably at its worse this week when on Tuesday night I found it so painful to walk that I basically shuffled back to my hotel slowing down the people I was. A walk which should of taken 5- 10 minutes ended up taking almost 25. Then on wednesday night my ribs felt so painful that I couldn't sleep as that caused more pain due to the beds in the hotel not being that grate. I also had to wait another 10 hours to take my pain meds again despite being on the strongest dose the hospital could give me. Then just over two weeks ago I had a sinus infection along side a case of costochondritis. This was all along side the fact that my muscles easily cramp up and that I get worse when It gets cold. 

The road block I have come too is that if I ring up the gp they keep pairing me with the guy who basically told me he thinks the hospital are misdiagnosing me and that I just have a virus that I can cure myself, leaving me with no help what so ever. Yet If I go up to the hospital they tell me they cant do any thing but give me pain meds till something more substantial than a low white and red blood count comes up.   So I have no idea what to do but Im very fed up of feeling the way I do. I think I have had like 3 or 4 days over the past three weeks where I have felt pretty well and hoped it would last.  I dont know if I should try to speak to another gp or speak the hospital again. I really have no idea and any suggestions would be grate. 

13 Replies

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  • Am sure you'll get some great replies.  For now just want to say am v sorry you're being treated this way.  You aren't alone...this forum includes too many who are treated this way.  Recently, one of us (footygirl) made her big move towards getting improved treatment...she got some great advice and went on to achieve a referral to a uk lupus clinc where, hopefully, more experienced clinicians will not treat her in the way you've described.  I wonder whether you'd find her discussion helpful..I'll add  2 links.  footy has gone on to give us updates re how she handled her GP appt when requesting this move to another rheumatology clinic.  My feeling is that footy's discussions here have provided a kind of 'road map' for how to at least get that far: to a new beginning

    healthunlocked.com/lupusuk/...

    healthunlocked.com/lupusuk/...

    🍀🍀🍀🍀 Coco

  • thank you so much for the reply, Its been helpful especially the links.  The gp have asked me to ring them about my thyroid blood test, so I am going too see if they give me an in house appointment to discuss everything.  

  • Sorry you are in such a terrible situation. You are entitled to a second opinion. Does your GP surgery have a website with GPS listed? Or onljne booking? You can ask to be seen by a specific one or just tell them you would prefer someone else. They likely are pairing you up with the same GP for consistency and are assuming he knows your history so can help you best.  Persistently low blood counts should be a red flag for the GP. Lupus can attack your blood cells. I was referred to hematology (after seeing 4 different GPs at the same surgury) due to having low white blood counts for 6 months along with stomach issues and fatigue and body aches. The haemotoligist ran tests for autoimmune disease among other things and that is how I was finally referred to rheumatology my lupus diagnosis. Needless to say, I stuck with the GP who sent me to haemotology and she ended up to be a great advocate for me when it came to convincing my rheumy I needed stronger meds (he was very reluctant due to do so. He focused on my joints which never swelled but hurt a lot!). Luckily she had experience with a few other lupus patients so was very sympathetic.

  • the reason they keep pairing me with him is because he deals with over the phone telephone consultations. The surgery have this system where they will always offer over the phone first unless your symptoms biased on their criteria requires you to need to be seen by a gp face to face. They do things this way so more people can be seen too. If I say I want an in house appointment they quite often tell me if the gp wants too see me, he will call me in so after the telephone consultation. This will then be with one of the other better gps in the surgery. I need to ring the gp up monday about my thyroid blood test so Im going too see if I can have an in house appointment to discuss everything with the guy who referred me to be seen by a consultant. 

    in terms of blood counts, I was told after my last blood that my white(lymphocytes) was low at 0.5 but not a concern. Then my red im on iron supplements which I take as and when I need it as my levels go down very quickly but also up quickly. When I was first given the meds a few months back my Hb levels where at 81. I'm not currently sure what they are at however I am currently in my period of needing to take them again.  

  • I can see how these telephone consultations can be frustrating! It makes it hard to get a second opinion if you can't get past the initial phone consultation by someone who insists you only have a virus! I had not realized you had already been seen by a rheumatologist. I hope you are able to get an in house appointment soon. If not, it might be time to switch to another surgery, or seek a second opinion from another rheumatologist.

  • yeah been seen by rheumtology three times and been told twice that pain meds is all they will do to help me as I don't have enough blood issues for them to do much more.  Then annoyingly the doctors surgery I am at is the only one with in a 15 minute walk as I don't drive. Though thanks, I'm hopping I get in an in house one too. As I have done a little bit of research and found that the hospital in bath was recently added to the list of top lupus specialist places in the uk. I'm hoping that if I get too see a nice gp they might be able refer me there for a second opinion as its only about an hour by train from me.  

  • Good luck! I hope you get the answers you are looking for soon. Keep us updated on your progress.

  • Hi .seanto

    I'm very sorry that you're having such a hard time achieving diagnosis.  I also am quite light on the blood markers but have been lucky enough to be diagnosed early on.

    A couple of things I could add: there is a very very good lupus clinic in Birmingham led by Prof Gordon.  I was referred there (but live near Taunton) and the travel was well worth it.  They're focussed on a clinical picture rather than Antibodies.  Also, my bloods are constantly very low and I can vouch that taking iron tablets on an intermittent basis is ineffective as the rise you see in your HB will deplete your iron stores and ferritin and your HB will soon start to fall again.  I have just been found to have Pernicious Anemia also - are your levels of B12 good?  This can also affect cell counts and is common in those with thyroid issues.

    Hope some of this helps.  Clare x

  • thanks for the suggestion of Birmingham but as I dont drive, it becomes quite expensive for me to get up there especially as im a full time student without a job. This is why I want to see if I can get referred to bath as its just under £15 for an open return and they have a specialist clinic.  

    As far as I have know my b12 levels are good as a no one has ever mentioned them too me. On the other hand I see endocrinologist to do with my thyroid and vitamin d levels. I also take my vit d supplements as and when I need them as those levels are also very up and down. The annoying part being that I only ever notice my iron levels drop when on the vit d supplements but rheumtology told that it wouldnt be the medication making it drop. So I have no idea why my levels do that. On the other hand they have said I have microcytic hypochromic anemia. 

  • People with rheumatoid arthritis have seronegative bloods and still get diagnosed. Same goes for spondyloarthritis. I would make your way to Bath if you can.  There are over 200 types of arthritis so you need to push hard for a diagnosis. 

    As you probably know - most thyroid problems are autoimmune and autoimmunity often overlaps. Another suggestion - could you ask your endo to refer you to a rheumatologist at Bath perhaps? I can't understand how you are unable to see a GP face to face? If you have all this awful joint pain how can they possibly tell you that they won't see you? They can't touch hot swollen joints over the phone or find out where the tenderness is. And viruses don't usually go on and on! I hope you can get to see a decent GP soon but if not I think I'd be quite firm and even contact the practice manager. 

  • thanks for the reply, I am seeing endo in two weeks so I will see what they can do but in the past they have been adamant of just treating my endo issues. Though I also cant understand why the gp wont see me ether. The last time I had an over the phone appointment, I was told that I had a virus that was going around that was effecting peoples muscles, and that I could cure myself. 

    After speaking with someone today I have decided that I am going to demand that I get see by the doctor who first referred me. If they wont give me one then I will demand too speak to the practice manger as I'm   technically still under his care so there shouldn't be any reason as too why I cant see him. Then when I do see him I'll get him to refere me to bath. 

  • Great stuff - please be very assertive in as charming a way as you can muster! X

  • spoke to the nice gp who referred me today. We had a telephone consultation but it was really helpful. He's had a look back through some of the notes the consultant had sent him. Annoyingly he still dosen't have the notes from the appointment I had two weeks ago. Though what he has said is that he is confused as to what they are doing even when I told him what they had told me. He said thats not helpful if I still don't have a diagnosis which he has said is the point of their job. So he has said he is going to write them a letter to find out whats going on. Hopefully this will mean I will start getting answers and better help from them. If not I will just ask the gp to send me else where. 

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