Worried about my diagnosis

Hi

I'm brand new to this and hoping for some real advice rather than Google terrifying the life out of me!

In August 2014 I began feeling extremely tired, dizzy, loss of weight, loss of hair and had a lump in my neck. I went to my gp who did a series of blood tests including thyroid function tests and they all came back normal.

The lump grew bigger and my gp referred me to the thyroid clinic. After more tests (all normal levels) I persuaded them to do an ultrasound. They discovered a very large lump in my thyroid but was benign.

In Feb this year I underwent a partial thyroidectomy where they discovered my left side of my thyroid had grown under my collarbone and down into my chest.

Following surgery my symptoms persisted. I now have an enlarged right side of my thyroid. The surgeon said he noticed it was enlarged during surgery but did not want to remove it unless absolutely necessary.

I now have an even bigger lump, fatigue, headaches, dizzyNess, hair loss and really itchy skin all over (mainly at night).

I've read about lymphoma and am worried my symptoms have been misdiagnosed....

Any advice????

Thanks xx

15 Replies

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  • Hi Tillymint, are you on thyroid medication? Your symptoms sound like hypothyroidism, which is to be expected if you've had part of your thyroid removed. Do you have any recent thyroid blood tests?

  • Hi

    Thanks for replying. I'm not on any Meds apart from citalopram and they keep putting my symptoms down to either depression and anxiety or chronic fatigue. I don't have much to Base it on but I don't think it's either and because my bloods show no problems with my levels they keep fobbing me off :(

  • As Clutter says, the best thing to do would be to contact your GP and get a copy of your thyroid blood test results, then post them here. Members will then be able to advise you properly. Try to be reassured that your symptoms do sound like hypothyroidism, and should be relieved with thyroid medication.

  • Welcome to the forum, Tillymint.

    Your symptoms sound more like low thyroid. 'Normal' is a very broad range and many people are very symptomatic within range. Can you get hold of your thyroid results and post them in a new question with the lab ref ranges (the figures in brackets after your results).

    I Googled Lymphoma and the symptoms listed in the link below are different to those you describe.

    lymphomas.org.uk/about-lymp...

  • Thanks for your reply :)

    I am at the clinic on Thursday so I will ask for copies then but they just keep telling my my thyroid is functionin fine. I disagree, I know something isn't right but I can't argue with the results :(

  • Well, you know your body better than they do. But they are so very unwilling to ever admit that anybody could possibly have a problem with their thyroid. As you have found out, they put it down to depression, stress, health-anxiety, fibro, CFS, age, menopause... anything rather than what it is!

    It is your legal right to have copies of your blood tests, and it's always a good idea to get one after any blood test. That way you can take control and stop them fobbing you off. :)

  • Tilly, 'Normal' is an opinion. It isn't a result. Make sure you mention the lump is larger and ask them to check it out. The usual reason for a thyroid gland or half to enlarge is because it's trying to produce more thyroxine in response to TSH stimulation.

  • So I managed to get a copy of my bloods....

    Basophils 0.0

    Eosinophils 0.3

    Haematocrit 0.435

    HB 148

    Lymphocytes 2.3

    Mean cell volume 84.00

    Monocyte 0.3

    Neutrophils 3.0

    Platelets 272

    WBC 6.0

    RBC 4.

    Albumin 46

    Total prot 68

    Globulin 22

    Alk phos 97

    Adj calcium 2.30

    Inorganic phosphate 1.13

    Free T4 15.4

    TSH 2.5

    No idea what any of it means......

  • Tilly, what is the FT4 ref range (the figures in brackets after your results) ?

  • 10.0 - 22.0

  • Tilly, TSH 2.5 indicates your thyroid isn't working optimally and FT4 is just under half way through range but I don't think you will get treatment until TSH is >5 or 6 or FT4 drops below 10.

    NutriThyroid is an over the counter supplement which may help support your thyroid and supplementing 200mcg selenium will help too.

  • That's great thanks for your advice!

    I've had more tests this week and they're testing for hashimotos and FT3 and hormone levels so I'm hoping they can pinpoint the problem

  • all brilliant advice here, always go armed to gp with notebook and pen and write everything down, your results will be gone through carefully here, it's a brilliantly supportive forum... x

  • Have you been tested for Hashimotos? Do you have thyroid antibodies? This could cause your thyroid to swell, but thyroid meds will take this swelling down.

  • Thank you! This is a real possibility! I will mention it to my consultant tomorrow :)

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