Refused referral to Specialist

[rosserk]

Hi all, any advice would be appreciated.

I have Hashimoto’s, Ehlers-danlos and Sjögren’s all of which have connective tissue connection.

I’m currently under a Rheumatologist who unfortunately doesn’t have much knowledge of Sjogrens. In fact there’s no one at my local hospital who specialises in Sjogrens. I asked for a referral to a Specialist in Sjogrens and was refused. I’ve looked on line and from what I’ve read I can request a referral but the Doctor can refuse. I think this is wrong particularly when my symptoms aren’t being well managed under the current treatment plan.

I’d be grateful for any advice, if anyone has any knowledge. I’m really desperate my symptoms indicate I’m having problems with internal organs affecting my liver and kidneys and lungs.

[Sekka]

Hi...there does seem to be a problem with managing Sjogrens and I think one of the reasons is the overlapping symptoms with other autoimmune disorders. Some people seem to respond to treatment which some others don't. We need a rheumatologist who understands the whole condition. Find a rheumatologist in private practice (where in the world are you located?)

and just keep pushing.

Watch your diet. Fodmaps is a good place to start.

I have Sjogrens and Hashimoto, multi nodular goitre, Reynaud's and rheumatoid arthritis plus an unrelated neurological disorder called orthostatic tremor. Heaps to look after but don't let it overwhelm you. Just do what you can.

[rosserk in reply to Sekka]

I’m really struggling with diet at the moment. Most days I barely eat but still can’t seem to shift any weight I’ve gained as a result of Hashimotos. I wasn’t too worried to start with because everyone says that weight loss is almost impossible until you’re correctly medicated and I think I’m almost there as far as my thyroid is concerned. I will start taking diet a bit more serious now. 😊

[25clai]

Hi,

My first question is are you in the UK? If so there is fortunately a way to get a second opinion via your gp. Your experience of a rheumatologist who doesn’t know much re Sjorgens reminded me of where I was at 4 years ago. It sounds like you have at least been effectively diagnosed , albeit with 3 difficult connective tissue disorders , which must be very difficult for you to manage. I only have 1 autoimmune disease, sjorgens and find that’s enough....!

From my experience, I was initially referred to a rheumatologist to diagnose me following abnormal results from immunological blood tests, via the hospital who did the tests. The rheumatologist I saw dismissed my blood tests, told me I have fibromyalgia, go home , rest and do some yoga. At this point I investigated more about sjorgens diagnosis and treatment. I was in such a mess I didn’t feel the diagnosis was correct. I had kidney function problems, I could barely walk any distance due to pain in my joints, the list was endless.. I looked at advice for medical referrals for sjorgens , researched hospitals which good connective tissue expertise, and wrote a lengthy letter to my gp, justifying why I should be entitled to a second opinion. I suggested a few hospitals, I then followed it up with an appointment to discuss it further. Fortunately, I have a great gp who knew my symptoms well, due to helping me manage over a period of time, and he agreed. He suggested a different hospital where he knew some consultants and found me a very good rheumatologist.

You say your gp refused your request. Doesn’t sound reasonable at all. If he/ she won’t budge, I would be tempted to go to a different gp, explain the clinical support you need and the severity of the symptons you are trying to manage. Talk about how your everyday life is affected and tell them the problems you are currently having with the lack of specialist knowledge with your current rheumatologist . Be prepared to lay it on thick to get what you want. I hope you get referred to get the treatment you should be having. It made an enormous difference to my recovery and also long term, the rheumatologist I now have , has helped me through a whole host of tricky symptoms/ tests/ treatment which has developed over time.

[rosserk in reply to 25clai]

Hi thanks for taking the time to reply. I’m definitely going to write something down and hand it to the doctor but mainly because I’m so confused all the time. I can’t explain what’s wrong with me when I’m sitting in front of the doctors my mind goes completely blank!

I’m glad you’ve found someone to help you. If I don’t manage to get a referral on the NHS then I’m going to go private to Elizabeth Price in Swindon. She’s got excellent reviews and seems really caring. I have an appointment on Thursday with a rheumatologist I’m confident won’t have a clue because I’ve seen him before so I’m going to ask him for the referral. So fingers crossed !

[Echoblue in reply to rosserk]

Hi rosserk, I agree with 25clai, I have a rheumatologist appointment on Tuesday and have written down in bullet points all the weird and wacky symptoms as I know I could miss out the one key element that could give her the clue as to what is going on! I have also printed off photographs of visible symptoms that I have taken during flare ups as no guarantee all will be visible or obvious on the day. Doesn’t guarantee answers but at least I don’t need to worry about coming away afterwards and kick myself for forgetting to mention something!

I do hope you get answers very soon. X

[rosserk in reply to Echoblue]

Yes it’s a good idea to go prepared. I hope you get appropriate help. Good luck on Tuesday! X

[25clai in reply to rosserk]

Hi rosserk, I’m glad you’re thinking of some positive options to get help. If you can afford private and its not too far away, it could cut out the waiting around that goes on in the nhs. I advise tackling the GP in any case, as patients should be listened to who have symptoms not addressed by the original referral. Writing a list helps me enormously with my gp . Even now, I write everything down, as I have a number of health issues and need to get a lot covered off in the time allocated. I usually tell him upfront, I have xxx amount of queries, so even if he goes off on a tangeant, I can get my queries/ concerns addressed. I have a pretty good relationship with him now, as he has helped me through a lot, diagnosed stuff that other gps have missed etc. Good luck!!

[maggielee in reply to rosserk]

Dr. Price chaired the medical group to write the guidelines for primary sjogrens look under british rheumatology...she is very good & she involved with the british sjogrens association.... If you do see her privately she may take you on through the nhs. Provide copies of any recent tests, bloods, summary of meds, diagnosis, meds.... Wishing you well.ml

[Patatie50]

You must live in the state of Maine. Health care there is atrocious. I was referred to a doctor who had no clue about my symptoms. Primary Care doc sent me to a neurologist because he didn't want to continue treating me for a prior stroke, because he is a "mechanic" ("his" description for himself). The neurologist insisted I must have 'atrial fribulation, which, of course he found I do NOT have. Took me off warfarin and darn near killed me. The PC is even worse. Rheumatologist refused to treat my symptoms unlike her previous partner who DID treat me. Healed/treated me for all my ailments with Connective Tissue disease, Raynaud's, hypertension, clotting disorders. I think that ANYONE who goes to TUFTS UNIVERSITY for a MEDICAL DEGREE must have been turned down at better schools. I've had 4 doctors who graduated from that institution: One misdiagnosed me, causing a two year long health battle and finally corrected after I referred MYSELF to another specialist (at great expense). The neurologist should be stripped of his license to practice medicine. He was unable to diagnose me because I DIDN'T have Atrial Fribullation, and then walked out of the followup visit, stating that he didn't know what was wrong with me. He said my Primary Care doc would need to send me to another type of specialist but that there probably wasn't anyone in the state of Maine who would be able to determine what was causing ulcerations of fingers, swelling of extremities, etc. My health issues go on and on with NO help forthcoming. I'm quite sick most of the time. When symptoms aren't correctly treated, or ignored, it leads the body to start attacking itself. There is no help for me though I continued to keep trying until recently. I'm just tired...of trying to find someone to help me. So, I get what you are going through. I've been dealing with all my symptoms for 24 years. Moved to another state but can't afford the health insurance coverage which is 'Consierge' coverage here. My insurance won't cover that kind of upper-crust coverage. I wish you all the best. It is a terrible thing to realize that no one knows how to help me, especially in this day and age of medicine.

[rosserk in reply to Patatie50]

Hi thanks for the reply. I actually live in the UK. I’m really sorry you’re having such a hard time. Do you think you have Sjögren’s?

[Patatie50 in reply to rosserk]

I think I might but have no way to prove it.

[SusieW2 in reply to Patatie50]

So sorry you're getting such poor care! This should not happen.

Actually I think we may find that Sjogren's Syndrome is a process of the body attacking itself. And the cure will be a way to turn it down.

Meantime, may I suggest doing an elimination diet to see if you can't control some symptoms yourself. I have eliminated my eczema (ulcerations, had them on lips and in mouth) and a lot of swelling through limiting my high acid foods, eliminating gluten and limiting gluten free grains. Dairy and alcohol, specifically beer and wine, may be other things to monitor. You can get a list of foods online that are inflammatory as well as ones that aren't so much.

Good luck!

[Patatie50 in reply to SusieW2]

Thanks, yes, I have eliminated problematic foods, cleaning materials, etc. I have many allergies (from birth) and have received allergy injections since 5-years- of-age. Stopped the injections at age 62 because Allergist said they no longer work. Dairy allergies, Gluten allergies, environmental and chemical allergies. I'm careful to not bring in allergies (flowers, etc),have mattress, boxspring, pillows in allergy proof encasings. No perfumes, tobacco products. I do the best I can. Have all sorts of stuff going on. Thanks for listening.I do appreciate it very much.