It's been one thing after another after finding a lump in the side of my neck!

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Hi everyone, I'm just looking for some advice really or to speak to anyone who has been in a similar situation as me! I'm a 20 year old female student and this is my two months of hell!!

?A couple of months ago I saw a nurse at my surgery about a lump that's been in the side of my neck for well over a year, maybe even two or more! It was something I never really thought much about, I always just put it down to my glands being up and I was coming down with something. But I started thinking about it more and more and realised I should probably get it checked ouy for peace of mind. I was sent for blood tests and got a phone cool a couple of days later telling me a few things had come up as abnormal, this included the full blood count, liver function test and vit D. I saw a doctor the following week who diagnosed me with Hyperthyroidism. I didn't really know what to think of this, I didn't even know what it was until that day but I was put on carbimazole, sent for more blood tests and given vit D supplements and that was that. I read through the leaflets till I knew them by heart and just assumed that was that, life would go on!

?Of course I was wrong... Ever since then it's been one thing after another, it started with a random sore throat one weekend and within hours I had no voice and felt very poorly. I saw a doctor a couple of days later as a sore throat is a red flag for the medication I was on and I was sent for more blood tests and put on antibiotics for a chest infection, this whole thing struck me as odd as I had never had anything like this before, I was always one to be constantly full of cold but have only ever been on antibiotics a handful of times in my life. I had to come off my mediccation and have the blood test, but everything came back fine! I was told to go back on my meds and finish the antibiotics and once again that was that.

Another week goes by and although my chest had sorted itself out the sore throat stuck around for a long time, ever since then I just haven't really ever felt better. A couple of weeks after that I get my first ever UTI, this once again struck me as odd as it's another thing I have never had! The blood thing stuck around for 4 weeks and I was in agony! I felt ill all the time, had a temperature, pain killers weren't even taking the edge off and I had two lots of different antibiotics before the thing finally got lost! It was bloody awful! Once again I was so confused, I've never really been a healthy eater or a fitness freak but ever since my diagnosis I have been making an extra effort to eat really healthily and drink plenty of water etc. I should be healthier than I have ever been but instead I just seem to keep getting ill! I feel crappy all the time, I'm always tired and this is coming from someone who a few months ago struggled with awful insomnia and would manage a week without a couple of hours sleep! Now I find myself sleeping all the time, I do work a lot but it's getting stupid, whenever I have free time I'm napping, I'm always trying to organise lie ins and I'm still exhausted all the time! I can do a three hour shift at work and it just exhausts me!

Then I saw a specialist in the endocrinology department at my local hospital, I had been on the waiting list for a few weeks and was looking forward to getting some answers. On top of all of this I am supposed to be going to Greece in four weeks to work abroad for a month, something I'm extremely excited for and it's supposed to be the time of my life but at this moment I had no idea if I was going to be going!

?The specialist confirmed it was my lymphnodes that were swollen and my thyroid was enlarged, he referred me for and urgent CT scan so we could find out more! Had the scan a couple of weeks ago and have been waiting until now, driving myself insane, wondering what the hell is going on! So my mum got fed up and rang the sec of the endo department earlier and she confirmed that they had the CT results but due to the fact my specialist was leaving this week and my notes were moving onto a new specialist everything got delayed. But she was able to confirm that the scan showed my lymphnodes are up and so is one side of my thyroid gland. I've been referred to a thyroid uptake scan which I'm on a waiting list for. But more importantly I have now been referred for an ultrasound scan that I'm having next friday and the specialist has noted that if the ultrascan shows abnormalities or somehting like that then I need a fine needle aspiration. I was told I will meet the new specialist in mid July but everything just kind of ends there. I have been having monthly blood tests so I know now that the carbimazole is working and my thyroid levels are going down so the hyperthyroidism isn't really a concern of mine, my obvious concern now is my lymph nodes.

?I have fully accepted I won't be going on my trip now due to all these tests that I am waiting for, as gutted as I am I know that one day I will get to do it and I'll be in a better way and that's what is important. But of course now I'm terrified! Can anyone tell me if they've had a similar situation and what the outcome was, don't be scared to tell me how it is as there is nothing that hasn't crossed my mind. I also want to know what this ultrasound scan is because surely it can't tell us anything that hasn't already been seen on the CT scan? I was sure people had the ultrasound scan first and then the CT scan? I'm so confused and worried and just sick of hearing this isn't my department or it's not my area so I can't tell you anything. I just need some form of answers or I'm actually gonna drive myself insane!!!

?Thanks for reading guys, I appreciate you taking the time smile

1 like, 4 replies


4 Replies

  • Posted

    Hi Lydia. What you're worried about is whether you have lymphoma. This doesn't show up on blood tests, just other problems that can be caused by lymphoma. If you've had the lump for one to two years with no other symptoms I would guess that it's not cancer - but I'm not a doctor. The only sure way to find out is to have the lymph node surgically removed for biopsy. Fine needle aspiration sometimes misses some of the cancer cells. I had a biopsy and was diagnosed with Diffuse Large B Cell Lymphoma 2 years ago. It is totally treatable, I'm here to prove it! As for the scans, different scans reveal different problems so stick with it and chase your doctor up. I've had every scan going lol! Let me know how you get on.

  • Posted

    Husband had lymphoma. .some of the other symptoms are night sweats, loss of weight . . I'm glad you're finally getting some decent tests done which should help to prove one way or another what is going on. In my husband's case it was finally a pet scan which showed up the active lymphoma where other scans had missed it. . .He does now have thyroid problems, but caused by the chemotherapy, so not relevant to you really.  Whatever it is, better to know and get the proper treatment as they seem to have been messing you areound a bit! If it's lymphoma, the treatment is not as bad as films make it out to be!  And the prognosis these days is excellent, with the new treatments.  If it should be cancer of the thyroid, that also is one of the easiest to treat, and hopefully the tests are going to show that it is neig=ther of these rather extreme possibilities, and that they just need to get your thyroid medication sorted out, which is not easy to begin with.  I hope you soon have some answers. the waiting is horrible isn't it! so sorry your Greece trip has had to be put off. . but you are young and hopefully there will be lots more opportunities.  health comes first!


  • Posted

    hi Lydia

    I have just posted and although I'm not sure our symptoms are entirely the same, I just wanted to say how I understand how you are feeling. I am driving myself crazy and have convinced myself it is cancer.

    I hope you have had good news since you last posted?

  • Posted

    Hello! I've been going through craziness for a little over 2 months now I think. I'm 22 and so worried. I've got this persistent swollen lymph node in my neck. At first it was a little tender and now it's not. It's a decent size. Not outwardly noticeable. I got scans on my chest and neck a month or so ago and the doctor said my chest was clear and my neck had a couple swollen nodes. He didn't think it was anything to worry about. My tsh was high so I went to an endo but my tests came back fine. My doctor thinks my thyroid could be sputtering because at the time of my blood tests I felt good. I seem to have flare ups.. I was feeling better about it and more confident that I have fibro with hypothyroid. But now I'm terrified because a few days ago my chest started hurting and I'm slightly short of breath. I have an ENT appointment in three days and it can't come faster. I think I'm going to just demand a biopsy. I can't take the worrying anymore. I have strange symptoms like chest pain, chest tender to touch, rib pain with ribs tender to touch, neck aches, I get bad pains in my thighs and sometimes armpits. I've felt around in my armpits and can't find any swollen lymph nodes. I know I have one or two in my groin that seem to shrink and grow with flare ups because when I feel good they don't ache. But when I feel bad they do ache. In the beginning of this I was having tingling in my extremities. I also have TMJ so I've been getting migraines which isn't too uncommon for me. I'm just worried because these lymph nodes don't hurt to touch and the chest pains are freaking me out. Also, I'm just constantly wondering because all of my symptoms consist with so many different things.


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