Advise required - doctors won’t

[RebeccaD1231]

My Lymph glands have been up for 9 months in my neck and throat Previously had Graves’ disease doctor taken my bloods (which checked my white cells, thyroid and liver etc.. bloods results where ok. I’ve had a ultrasound in December, my nodes are 7mm and thyroid is a little inlarged but not concerned. I get stiff and painful joints if I don’t do my yoga.. I can be in quite a lot of discomfort on a morning my spine feels stiff and aches I’m starting to get mouth ulcers and headaches, some days I feel weak and drained, my hair has always been quite thin. Some days the light bothers my eyes. My mam has fibromyalgia I have more glands popping up on my neck, the doctors doesn’t want to do anything else, they say I’m fine to keep an eye on things, any changes call back. I feel like I’m going a bit insane I keep worrying, I’m 34 and have a 2 year old and I just want to feel well and not worry. I’m looking at maybe getting a private test done.. any advise is welcomed.

[Hidden]

If they gave you an ultrasound in December then this seems quite reassuring at least.

However I’m not wanting to worry you but if you have Graves plus Fibro type symptoms - then you could also have Sjögren’s - which carries a significantly increased risk of people getting lymphoma compared to other autoimmune diseases. It is usually very treatable but best rule it out ASAP.

So I’d gather some evidence on Sjogren’s, Lupus and others and request an antibody panel is run for all rheumatic autoimmune diseases.

I know it’s a horrible feeling worrying that something is being missed. So prepare yourself to be quite forceful because it can take a long time to get diagnosed with rheumatic diseases. Things aren’t black and white as they mostly are in endocrinology - so it takes people average 4.5-7 years to get a diagnosis I believe.

Best of luck. S7🌻

[RebeccaD1231 in reply to Hidden]

Thank you for your reply, everyone’s comments have been really helpful.

[miccika1]

I also suggest antibody panel just so you eliminate autoimmune diseases. And if you do have one then you can get treated. Hope it's just something simple...

[MissusTee]

Blood tests to ask for: ANA, ENA, ESR, CRP, Rheumatoid factor.

[RebeccaD1231 in reply to MissusTee]

Thank you, I’m looking into medicheck to see if they do all of them. I know they do ANA

[Tykle]

Hi Rebecca, swollen glands sounds very familiar. I have Sjogren's and always have some swollen glands at any one time as part of that. When it started, about 30 years ago, no one knew what it was but it was picked up years later by a lupus specialist. They did a biopsy of one node to check it wasn't something more sinister but concluded it was due to Sjogren's. I don't know if that will be the case with you but, if it is, you do get used to living with it.

[RebeccaD1231 in reply to Tykle]

Thanks for sharing your experience Tykle. I’m going to look into getting some private bloods done.. I dont think my doctor will refer me for anything, I don’t think they see the fact my lymph nodes have been up in my neck for 8/9 months an issues

[weathervane]

I had the same experience as Tykle , all my glands became enlarged and i had a biopsy and a body scan , i was referred to rheumatology and diagnosed with Sjögrens. I receive rituximab infusion and things have improved, though i still get some enlargement in lymph nodes under my arm . I hope you can get further bloods to help with diagnosis.

Best wishes and keep well 🌸

[RebeccaD1231 in reply to weathervane]

Thank you for your reply.. It’s making me feel a lot better knowing that people have been in the same shoes. I feel like my doctor doesn’t believe me

[weathervane in reply to RebeccaD1231]

Unfortunately it can take years to get a firm diagnosis as you can get passed around. Have you been seen by rheumatology?

[RebeccaD1231 in reply to weathervane]

No all I’ve had is an ultrasound in December and bloods done then and recently, they where going to give me another ultrasound last month but it was rejected. They didn’t see the point in doing it again with my nodes been 7mm.. even though more have popped up since December. I’m hoping if I get some bloods done privately and something shows then I can go back to the NHS and asked to be referred.

[weathervane in reply to RebeccaD1231]

I saw rheumy privately, she then took me on as nhs patient as my treatment not available privately

[RebeccaD1231]

Thank you for all your comments and advise. I’m going to look into maybe getting a private blood tests done.

[MEGS53 in reply to RebeccaD1231]

Hi. I had an ultrasound scan and then a biopsy of my enlarged and atypical underarm lymph nodes. Previously, a biopsy of salivary glands in my lip was negative, indicating I don't have Sjogrens syndrome (I'm also negative for Sjogrens antibodies in the blood). I'm waiting for Pathologists to decide what this means for me, but oncologists say they often see atypical/enlarged glands in patients with chronic rheumatic disorders. Thankfully, the biopsy was negative for cancer. It's all very confusing and I hope you get some answers soon.

[RebeccaD1231]

I’m glad to hear your ok.. I hope I can get some answers soon it’s driving me up the wall x

[MEGS53 in reply to RebeccaD1231]

I totally understand your confusion! I'm still without a definitive dx and my journey has been a very long and bumpy one. Please feel free to post here and we'll do all we can to support you. xxx

[RebeccaD1231 in reply to MEGS53]

Thank you so much. I hope you get sorted. X

[RebeccaD1231]

Update: I decided to go back to my Doctors they told me they done a basic autoimmune test in December and that came back fine. But that wasn't a full one and the doctor has requested I get a full auto immune blood test next Tuesday, hopefully it’s a move in the right direction. Thank you all for your comments and support, I didn’t want to go back to the doctors but speaking to you all made me think sod it! I will find out on Tuesday what bloods are getting taken and keep you updated on my results.

[RebeccaD1231]

Hi guys,

So I’ve had my bloods back and everything is ok, my kidney and liver came back boarder line so I have to have another test in 6 weeks.

My mouth is still sore, my hips still ache and my lymph nodes are still up, so I’m at a bit of a loss on what my next move it now. Least it’s ruled out I don’t have an autoimmune disease.