Any immunologists or lymph specialists?!

[Haggisfish]

I am sure I have tender lymph vessels and nodes. They are incredibly sore in very specific spots, coinciding with the lymphatic system. No obviously large lymph glands that can be felt although some are slightly shotty in places. Had a full blood count which was all normal apart from slightly raised thyroid antibodies. Now being tested for auto immune problems, as I noticed the pain almost disappeared when I got a very bad sore throat. My gp is at a loss as to what it might be. Any other ideas? I can't find anything apart from possible lymphoma but my gp assures me it's not this. All ideas gratefully received!

Sorry, bumping for evening crowd! I know there are some immunogists on mn do will bump for a little while.

Sorry, bumping for early crowd! Will stop soon. I'd be so grateful if someone could contribute!

Will bump twice more and then sink without trace!

Bumping for you.

I don't have the answer but can reassure you that lymphoma usually presents with enlarged painless glands, so would agree with your GP there. How long have you had this symptom for? Have you had an infection screen?

I don't think normal blood tests check for immune system problems.

Do you get ill much?

Thank you all for replying! Screened for white cell count, esr and inflammation markers-all were normal. I don't get ill a lot really, no. I do have an odd hard lump in the soft tissue in my lower left calf which appeared about the same time as these odd pains, but I had an ultrasound of that which showed nothing sinister. It hasn't changed since I first noticed it about two months ago, but the pains are getting much, much worse.

So I've been having the pains for about two months as well. It started in my left thigh, and gradually the pains appear in the same place on both sides of my body. I am having another blood test specifically to check for auto immune indicators.

Shall I go for a swift Saturday night bump or wait for a slower Sunday crowd?! Pains getting worse and more numerous. Will be back at gp again on Monday. Can anyone advise on the best scan for seeing if lymph nodes were bigger than normal? I'm more than happy to pay. I'm not sure if an mri or ct would be better.

Haggis - a simple ultrasound is sufficient to evaluate lymph nodes.

Do speak to your GP again.

Thanks. I will do. My gp is being fantastic and is really supportive. I have never felt this rubbish before! Am chugging codeine and they don't really stop the pain but do make me nicely woozy and tired.

Hi Haggisfish sorry you are not feeling too good!

Also sorry not an Immunologist but I am a Nurse.

Have you had a Thyroid Function Test (TFT) done? What was the result, did they tell you the numbers and reference ranges that you could post here?

What type of Thyroid Antibodies were you tested for and which did the results show you have? were the levels very high / above the reference range?

I'm not sure of exact figures-I'll ask for a print out on Monday. Thanks for the sympathy-feeling very sorry for myself. I have let my four year stay up with me as she cheers me up!!

I don't think the numbers could have been very high as gp said they weren't high enough for treatment and that she would retest in three months.

That's ok, post them if you can when you have them - my guess is that it may be your Thyroid Antibodies could be causing your symptoms (sore throat, swollen and painful Lymph Nodes etc.).

There are different types of autoimmune thyroid conditions (Hashimotos, Graves) which can have vague symptoms which overlap, also meaning that your thyroid can be overactive or underactive.

If you do have thyroid antibodies then you need treatment sooner rather than later, as the damage is being done already (pain is telling you something is wrong!) and will potentially gradually get worse, however many GPs do seem reluctant to treat in general and often not until levels are sky high by which time people are really unwell?!

Anyway, I may be wrong and it could be something else entirely but suggest you ask your GP for a referral to Endocrinology for further investigation of your thyroid? Three months is a long time to be in so much pain!

Glad you have some company tonight and hope you feel better soon x

Thank you so much. My pain is increasing quite rapidly now. Can thyroid issues really cause swollen nodes? What's really odd is that the normal lymph glands in my armpits and throat aren't really raised at all. Ho hum. Will post an update on Monday. I would be really interested to know if thyroid can cause such painful nodes. Thank you again.

It is really difficult to say without seeing your blood results if it is your Thyroid, but from what you already said you do have Thyroid Antibodies (which equals Autoimmune Thyroid Disease) and they can cause the symptoms you have. Interestingly, your Doctor said they were not high enough to be treated, not that you did not have enough for a diagnosis What I mean is - let's not forget to also look at your symptoms - (make sure the Dr is aware of how bad your pain is and how many pain killers you are taking, if you haven't already).

Of course, people can often tend to have more than one Autoimmune disease (but not always) and it sounds from what you say that this is what your GP is testing for now. It also sounds as if Cancer and Infection have been ruled out by the other tests you have already had as these can also be a cause of swollen lymph glands (trying to reassure and not worry you!).

Looking forward to your update soon x

Thank you much-you have reassured me! Yes, gp is now testing for auto immune things now and I will post up thyroid results tomorrow.

Sorry - been up with the baby overnight, and early this morning - I meant to add that Autoimmune disease can cause inflammation which causes swollen lymph glands so if not the thyroid it could be a different one (of which there are many!) or even more than one including thyroid.

But as you do have thyroid antibodies it is most likely to be that I would say.

My normal gp is off this week but another one agreed to print off my results for me so I'll post them later. Hope baby didn't keep you up too much last night coconut!

Right I have a tsh of 2.9 (range 0.3-4.2) and thyroid peroxidase antibodies of 185 range (0-34). Irritatingly, t3 and t4 and ferritin weren't done this time. My gp asked for auto immune blood tests, but didn't specify what would be tested. Would it be really cheeky to ask for these bloods to be done as well?

On the results is says if tsh is slightly raised (up to 10) to consider thyroid replacement therapy.

OP- I get swollen lymph glands under my arm because I've got a cysts in my breast. They're so small I can't physically see nor feel them, it was only because I got scanned that they were picked up and linked to the swollen lymph node.

My Dh has awful painful lymph swellings under his arms and in his groin - his is because he's very allergic to wheat (as well as yeast and eggs but not on the same level as wheat).

Baby is currently happy and quiet so quick reply!

Ideally the T4 would have been good, however some Labs will only test if the TSH is out of range and yours is technically in range so that may be why it wasn't tested. (It is difficult to get a T3 result without being a Consultant now too, probably as it is too expensive to test routinely although again this would be useful!).

Anyway based on the results you do have, although your TSH is in range, it is on the higher side of the level at which most people would feel well. Those on treatment (Thyroxine) would ideally keep their TSH below 2.0 and a lot of people prefer below 1.0 to feel well. Also your antibodies indicate you may have Hashimotos and although not sky high (some people have results in the thousands!) your level is already well above the reference range.

Interestingly there is a link between Gluten (Wheat) in the diet and Hashimotos - people often switch to a gluten free diet to improve their symptoms.

I would suggest seeing your usual GP again and asking for further tests (including T4 and testing properly for other autoimmune diseases if they are saying they don't think it is thyroid - have you been tested for B12 too?) and investigations and / or a referral to Endocrinology as your thyroid antibodies are certainly there, even if there is something else as well going on?

I know your GP has said retest in three months, but if you are in so much pain on a daily basis this could be done sooner. It may be that your GP is reluctant to treat this themselves so requesting a referral to Endocrinology sooner rather than later is probably a good idea!

That's great coconut, thank you so much. I think my gp would be amenable to tests that I would like if I can give reasons. Interestingly, one gp was very sure that my symptoms were absolutely not caused by my thyroid even with the antibodies. I spoke to a different gp next time! My thyroid has felt tender today - I will update with any further news later. Thanks again, panda-I feel my thyroid is causing these problems, including my increased anxiety, but I think the problem will be convincing my gp.