In need of a GP referral

Blood results can change even when there is nothing actually wrong with you...... the immune system can just do this.

As is said before in all my 25+ years I have never had a blood test that raised a Lymphoma Red Flag saying "you have Lymphoma"!!!

Even when I was going through treatment...... my blood results would go 'off' due to the effects of the treatment........ then recover and be like any other health person.

Sorry to hear your sister in law is unwell. Early last year I was feeling generally unwell and blood tests came back very abnormal, extremely high ESR, Platelets, red blood cells, white blood cells, neutrophils. All off the chart high. I also had a pea sized lump in my groin. Within a month though, that pea sized lump had grown into multiple large lumps. I also had lots of other symptoms including extreme itching on my legs. So everything was pointing towards lymphoma. I was very quickly referred for an ultrasound of my groin, which showed something was very wrong, and I was referred for a biopsy. Lymphoma can only be diagnosed with a biopsy and some kind of imaging, in my case a PET scan. It turned out to be Hodgkins Lymphoma and I started chemo the week after diagnosis. If she is still unwell I can only encourage her to go back to the gp and press for further investigation. Lymphoma cannot be diagnosed through blood tests, but they are usually an indication that something is wrong. I hope she gets some answers soon

Hi - I completely empathize with you, very frustrating and annoying experience. 

I suffered from periodic fevers in the Summer of 2023, fevers were not bad, about 37.5 C max and lasted 3-4 days, then they would go away for 2 weeks. I was like these for 6 months (except for a period of 5 weeks when I didn't have anything), in the meantime courses of antibiotics and blood tests but never got to the bottom of it. The fevers started to get worse with time and during the fever periods I would be super tired. But then during the 'fever free' days I would be cycling or running consecutive days and not feel any fatigue. 

I didn't have drenching sweats as such, but whenever I took ibuprufen or paracetamol to lower my fever I would sweat a lot as my body decreased the temperature - this was uncommon, any time in my life I had fever my temperature would drop after taking a pill but I wouldn't sweat as much as I did. Also with the fevers I was shaking, which was also unusual for me, never had this with flu or covid or nothing. 

My reactive protein C and my ESR were very high (VERY) but the GP was just saying it would be underlying infection... in december 2023 I was referred to infectious diseases with no priority (= average waiting time 2 months). The rest of the blood profile was 'normal', the white cells and haemoglobin was lower than previous years but it wasn't below the target range so the GP was not concerned... 

So, I wasn't ticking the three boxes which are needed for a referal. I had fevers, I was tired, but I wasn't losing weight and I wasn't having massive sweats, no itches, no lumps (although I had 8 telephone appointments and no option to do F2F with the GP). Another GP sent me to A&E for a CT scan but consultants didn't deem scan neccesary and instead took blood and urine samples (although I had fevers for 5 months). 

At the time I went through redundancy at work and took a couple of months to find next job, so I didn't have private insurance to go and get a 2nd opinion or just ask for tests. I went to Spain (I am Spanish) and just paid 120€ for a private doctor who I convinced to prescribe a CT scan, for which I then paid 300€. I don't know how much it would be to do this without insurance in the UK. 

CT scan showed loads of swollen lymph nodes, but in the groin area and inguinal chain, so not really visible or obvious to the touch. I gave the report to my GP and I was finally referred to haema with a 2 week fast track referral, then went on to do biopsy, diagnosed with Hodgkin's, did PET scan... all in all started with symptoms in June 2023 and started chemo end of March 2024. 

I had Stage IV B, had cancer cells in a lot of places. Treatment worked for me and so far I am still in remission although it has only been 8 months since treatment finished. Because it has worked, I have sort of forgotten / forgiven all the issues I had, but deep down I am very angry with the way my case was handled.

My advice, push and push and try to get a CT scan. I didn't push as much as I should and I trusted my GP at the time, only to realize how clueless they were (lack of awareness than lymphoma can happen to someone who is 30 year old). I had a lot of arguments with my girlfriend because she is very pushy and I am very patient, so I can understand your situation. If she has private insurance, push a private GP to prescribe a CT. Blood tests are not a guarantee unless you have previous data to compare to.

At the time I was told there's 90% chance that is something else, not cancer. And I still believe this, but tests have to be done to find out the diagnosis. And a basic blood test is not a guarantee. Imaging is not either, but much higher chance of seeing something if there is smth wrong. A CT will only not show if lymph nodes are swollen but also if there is any internal swelling or abscess etc if it was to be some inflammatory issue.

Just to add as I re-read your initial post... It is mad that the GP can make a comment like "could be Hodgkin's" and then go on to say cannot be referred. This is crazy. I understand you have the right to get a second opinion from somebody else.

I just wanted to add to what is the general theme here . Maybe mention that you have researched on reputable sites that lymphoma is diagnosed from imaging not blood tests and be insisting on the GP referring ask to speak to the senior partner maybe . Time is the enemy of many illnesses including lymphoma . Will be hoping you get some better news . 

Thank you so so much for your replies. We’re at our wits end as my sister in law trusts her GP and isn’t pushing for a referral. She’s poorly again and my brother is very worried but feels he can’t say anything to her (I guess she’s getting annoyed). I wish the GP had just referred her! How can a GP say Hodgkin’s and then leave it?!

I am at a loss as to the GP issue…… my only suggestion that she gets a second opinion from another GP…. specifically the senior partner at the surgery but she has to realise she needs to get proactive.

That fact that she is poorly again she needs to get checked out….. the unfortunate bottom line in all this - putting the Hodgkins reference aside….. if she leaves this longer…… what ever the problem is…… this could be getting progressively worse and indeed could be difficult to turn the tide in treating her

If she is in any pain or discomfort she could present at A&E…… over the years I have talked with many people who were getting nowhere with their GP and due to the developing pain etc went to A&E and this started the ball rolling ((hugs))

I can only agree with the above. Your sister is the one that needs to push for further investigations. It might not be lymphoma, but clearly something is wrong. As mentioned above, encourage her to see a different doc at the surgery. Is she in a position to pay for a private scan? That would give her some answers, and quickly. I find it really sad, especially as my own experience was so different. I couldn't fault the NHS in anyway. Mind you, my symptoms were so clear, that the haematologist said he was almost certain it was lymphoma, just needed the biopsy and scan to find out which kind. Turned out to be stage 4, with areas in my groin, spleen, chest and bone marrow. She needs to see a haematologist who will take a full history, he is the one that will likely recommend a scan. Best of luck 

Thank you so much everyone. Found out some more info today and turns out her repeat bloods were still abnormal (some liver count and one that can indicate infection). The GP wants to repeat bloods again and she doesn’t have an appointment for another couple of weeks. I am utterly shocked that they are not referring her and at a loss as of what to do because she hasn’t told us any of this (found out from my brother) and she won’t push for anything. I cannot understand it. She has nothing to lose by being referred but everything to lose by not be. I’m so angry with the GP.x

Not in a position to go private unfortunately. She has such clear symptoms (in my opinion) that could indicate lymphoma. Unexplained fevers, repeat infections, itching, night sweats, tiredness, unable to eat much without feeling full. I’m wondering if she hasn’t told the GP everything.