Antibodies, Nodules, swollen Thyroid, and all lymph nodes up and enlarged is this normal for underactive thyroid?

Am an underactive thyroid with full horrendous symptons. Was diagnosed in 1995 but that was missed until 2007 when I queried some symptons as my daughter started to get the same symptons I got(back in 1996. My GP then tested me and low and behold I had an underactive thyroid. Since then my stats bounce around and to say I feel like the living dead is an insult to the living dead. I feel and look terrible. Im on 75mg/100 thyroxine, levo something or other, taken 75mgs on one day, next day 100mgs etc..

I found a, what I thought, small lump to the leftside of my neck, above the thyroid. My GP arranged an ultrascan. What it revealed was nodules on the thyroid, and the lump was the lymph node. All the lymph nodes were up across my neck. Worse was the right side a juge lymph node was sititng just under my jaw and basically filled the right side.Bloodtest revealed I had antibodies.

On the scan it looked like the cartoid veins were being affected. I do suffer headaches and dizzy, light headed spells. Bit complicated as my neck vertbra ( got bony claws growths) are crushing the central nerves and veins, including the cartoids.

Since then, my GP sent me to see a Consultant whose expertise is diabetes but complex weird ones like me he loves. He just says thats fine, levels within normal range (at the bottom) his words as you are not experincing any issues its all fine.

Consultant said oh yes yo have Hashimotos, which I took to mean underactive, which I knew anyway.

When I say I am suffering horrendous medical problems and start to list them he just , yes see you in 6 months, heres the blood test have it at 5 months and thats it. When I've queried the nodules and lymph nodes, he pokes my neck and says its fine. Dismisses the lymphs he wont even check them. Ive gone to the GP and she just says I'll bring it up in the meeting and let you know.

How can it be fine, when I can feel the lymph nodes and boy do they hurt, some feel like bolts of lightening running through the whole lymph node line. The thyroid I can feel pushing back into my throat and makes swalowing and breathing problematic. I now can only describe as do a large loud snore which wakes me up gasping for air.

Since this has occured, lymphs etc Ive developed an extra heart beat. Which hurts. Now the lymph nodes are all up over me. Indluding armpit(didnt know there was anythere) across shouder/chests etc. All ache and this bolt of lightening, is about as close as I can to describe it, shoots all the way through the lymph system. So I know now where they all are from the pain.

The sides of my neck, over jaw is swollen. You can feel the righ lymph gland and see a ridge over my jaw bone(hinge) The goitre area does not look swollen out form the front but it feels its more back into my throat. these have been up for a year or so now, my tonsils have been up for 3 years.

Any ideas?

12 Replies

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  • Hi I cannot say or you what you should do as you need an expert. however I have a very enlarged thyroid and nodules, They are causing me a lot of problems but I am unable to have them removed, as too ill for any surgery or biopsies.Normally when these are found a Biopsy is the considered really important ( just in case) Also,you definitely should have a nuclear scan of the Parathyroid ( PTH), if this has a cyst etc.,it is usually to have surgery. If it was me I would insist on seeing a surgeon who is very experienced in this ( Large hospital). These days a surgeon will only operate if they think they need to. For example none of mine will even do a biopsy etc Although I need a lot of life saving serious surgery..I do think ,if you feel like this ,you are the best joint and "nice" is not always best. I would not wait.Indication of PTH probelms is 3 blood tests am, PTH ( parathyroid) , calcium and vit D, it must be am and all 3.

    I hope this is some help to you. Bes wishes,

    Jackie

  • I have never had any of that tested before. Looks like Im going in armed with a shopping list for blood tests etc.

    Likewise Im banned form having operations or as they put it. one only andmake it a good one. I wont survive it as tooill. Strange how we're ill but never ill enough to be diagnosed properly.

    Thanks will check it all out.

  • I asked almost the same question a few weeks ago. If you look on the sttm website symptoms it says some people experienced swollen lymph glands. My gp was concerned about the lymph nodes and has checked me for HIV hep b c and hpv-all clear. She is going to leave the endo to look into it more. But maybe our lymph nodes do think they need to protect us when our bodies think we're being invaded with something. S

  • Will check it out thank you and Thank you Shaws too

  • If you look at Thyroiduk.org's main site and under About the Thyroid (left hand side) and cursor down to autoimmune thyroid disease and click on Hashimotos.

    thyroiduk.org.uk/tuk/index....

  • Hi there.

    May I tell you the process I have been through? (sorry those who have heard this before!)

    An Xray found I had extra neck ribs (cervical ribs) - sent for an MRI to check vascular compression of the brachial plexus & neck. (Nerve compression doesn't show up, or on nerve conduction tests for me either, not compressed - but stretched).

    They found a thyroid lump. A while later I had a fine needle aspiration (FNA), the nodule was suspicious and I had half thyroid removed. (luckily benign, the feeling of a lump in my throat disappeared as well as most 'anxiety' symptoms). I also have raised TPO anitbodies.

    I have been supplementing with Vitamin D for nearly a year now and my carpal tunnel. cubital tunnel symptoms have gone, numbness, pins & needles which they thought were from the compromised radial nerve -(I can still get this at night 'tho, shoulder drops forward).

    I can't comment on lymph nodes, but get them checked...and

    You need to see an ENT doc, have an ultrasound scan and get an FNA to make sure all is OK, especially if you are having breathing problems - (although some folks do report that goitre can lessen with the correct medication).

    You also need to see a Vascular doc (I saw an orthopaedic consultant - but he was more concerned about the effect on my arms).

    You must insist to see the correct specialists, if you GP won't refer you, change your GP - even having inflamed tonsils for 3 years indicates problems.

    You can look up consultants & their speciality in your area on drfosterhealth.co.uk/consul...

    With best wishes, Jane :D

  • Ohh you sound identical to me. I cant have surgery, I wont survive it, I'm too ill. Which is strange as the Drs wont treat these too ills. Odd that.

    My neck bones have been scanned, xray and MRI. Xray shows the claws as I call them, bony growths, the MRI showed the severe pincing of the central nerves + main veins -cartoid veins, Leftside worse than right. Both are affected.

    Orginally all the neck bones had claws, some have broke off on their own but he main ones are still in situ causing havoc.

    Im on physio for that side, my physios tried out acupuncture. I dont know if my body has had enough chemicals thrown at it or what but the acupunctures working.Being a sceptic it makes me boggle. Im not knocking it, I had 15% neck movement before acupuncture and now got 75%. The gravel sound I got has stopped. Very weird but I feel ok on that side so sticking with it.

    Thanks will re read and check out the link. xx

  • having probs with lyph nodes and sore neck, for over a year, had ultrasound, no pathology only goitre, watch and wait. feels like someone putting finger in the pit near your thyroid. The bolts of lighting me to, think mine is to much cortisol. However i could rant all day, I had enough and I am paying for mri on the neck and nodes.

    bear in mind I have been reassured that everythings ok, but my neck and jaw bones muscles, cause me much stress.

    I am gutted I am paying for my care, money that could be used elsewhere.

    just wanted you to no, that I have similiar issues.

    xxx

  • That is so wrong Merrissa to be paying for it. An ultrasound can and does show up the thyroid and lymphs. So that should perhaps be used as a cheaper alternative to MRI.

    MRI, on me rarily works and the best images have always been Ultrasound.

    Thanks for the cortisol mention. I had that diagnosed many moons agao and forgot about it. Time to recheck it I think.

    Good luck with yours,

  • This is exactly me! I just got back from an ultrasound today and I have nodules in my lymph nodes under my jaw like you. They are screen it for cancer. I have Hashimotos too

  • OMG...this sounds a lot like what I've been dealing with for 3 years now! I've had borderline thyroid issues, so the doctor isn't even treating it. However, my lymph system randomly swells so severely that it cuts off circulation to my extremities at times, leaving me swollen to the point where I appear like a 36 wk pregnant woman with toxemia of pregnancy. I am so incredibly frustrated with my medical providers at this point. I'm an RN, and I KNOW this is NOT normal. Yet, none of them will lift a finger to do further testing, and ALL of them seem to know very little about the lymphatic system and how it affects everything else!

  • All these forums ppl go quitet what happening guys? Any joy with understanding what's going on/ FYI the same symptoms. My personal opionin is that its a autoimmune disease thats yet to be identified. From what I understand even autoimmune diseases in general are not greatly understood.

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