Well and truly gutted :-(

Hi folks,

I posted on here last week. I have symptoms of a Hyper, Hypo and HyperPTH. Today I had my long awaited Endocrinology appointment only to be told I'm normal and get checked again in 3 months. The Specialist was so rude I cried all the way home! She put my Palpitations and Ectopic Beats down to anxiety, which really infuriated me. My Calcium levels are elevated but apparently not elevated enough to be worried which I think is absolute rubbish. She LOOKED at my neck, not felt it, looked and said it looks full in the thyroid area which may be a sign of Graves and her exact words were "you don't look like you have Graves, no rashes or bulbous eyes so get your Antibodies tested when you're back in the UK" (currently in Sydney until end of Jan) how is that acceptable! She basically said all my symptoms I'm having don't relate to anything thyroid/parathyroid related as my ranges are "normal" do test them again in 3 months. I was livid and so upset. I took all my research notes as I planned to go through every single symptom I have with her but she had no interest in me. I asked about the tingling I get in my fingers and arm and she said, if it was Graves it would be your whole body tingling!

I've listed my ranges below, the Australian Lab Ranges, although they've never been out of range they fluctuate all over the show, if anyone has any advice, it's appreciated.

Sep:

TSH 0.77 (Lab Range 0.400-3.50 mIU/L)

Nov:

TSH: 1.29 (Lab Range above)

FT4: 13.6 (Lab Range 9.0-19.0 pmol/L)

FT3: 4.2 (Lab Range 2.6-6.0 pmol/L)

Calcium: 2.66 (Lab Range 2.10-2.55 mmol/L)

Calcium Corrected: 2.54 (Lab Range 2.10-2.55 mmol/L) still high end of "normal"

Dec

TSH: 0.520 (Lab Range 0.400-3.50 mIU/L)

FT4: 16.9 (Lab Range 9.0-19.0 pmol/L)

PTH: 32.2 (Lab Range 15.0-68.0 ng/L)

Calcium: 2.56 (Lab Range 2.10-2.55 mmol/L

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7 Replies

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  • Hi

    I have hyperparathyroidism and am waiting for surgery but along the way I have had a zillion tests done ! It has taken 6 months for a diagnosis for me but many people wait years as the correct biochemistry results are vital for a diagnosis.

    Your results don't point to hpth as your calcium although high normal is not enough for them to worry about, it would still be considered normal and your pth level is well in range and right where it should be for your calcium level. Corrected calcium is normal.

    For it to be hpth your calcium would need to be well over the range alongside a high pth level. You would also need a high calcium urine clearance + abnormal albumin and phosphate levels and low Vit D, it's also common to have elevated liver enzymes as well. So looking at your ranges I would not expect any doctor to take notice unless your calcium was above say 2.65 and pth in the high 60's or above.

    I can tell you for sure over here you would not be considered to have any parathyroid problem with those results which is good as it's a serious condition and a cure is in no way guaranteed.

  • Hi Essex21

    If it's any consolation, your symptoms sound similar to mine, palpitations, tingling in my fingers and left arm. My tsh, /FT3 and FT4 were within the normal ranges, however, after further persistence, I was found to have a nodule in my thyroid gland following an ultrasound scan. I have now been referred to an endocrinologist for further investigation.

    Although I am new to this thyroid thingy, I would suggest having an ultrasound scan of your thyroid gland to see whether there is an abnormality.

    Best wishes, Vivien

  • Hi Vivien

    I had a Thyroid Ultrasound about a month ago which showed a small Colloid Cyst, I asked about it yesterday but was told it's too small to worry about at the moment and that a Cyst doesn't affect the function of the Thyroid regarding my levels. Unfortunately unless you're off the TSH chart ranges, nobody wants to know which means we have to suffer feeling like rubbish.

  • I was also told that there couldn't possibly be a thing wrong with my Thyroid because I had no trouble conceiving my 2 children nearly 5 years ago. My Mum is Hyperthyroid and she had 3 children with no issues, it was only later in life her hormones went crazy!

  • Hi Essex 21,

    Just like some of the people on this site, I have been back and forth to my GP in the last one year with so much symptoms, but I was just fobbed off with the so called normal results, until I decided to have an ultrasound scan done privately which showed there was a nodule present in my thyroid gland............... Even when I was having the scan done, the radiologist said the nodule was small (2cm) and it wouldn't cause me any symptoms, wrong! it has caused me so many symptoms that I am debilitated by them....................... Your colloid cyst may be responsible for your symptoms...........

    Is it possible for you to see another doctor in Australia to test for antibodies in the meantime, to see whether you have Graves and then when you are back in the UK in the New Year, you can go and see your GP to do a full thyroid panel?

    Vivien

  • There's so many contradictions isn't there, what do you believe, gut instinct is becoming my attitude. When I had the Thyroid Ultrasound in Oct, the colloid cyst was 4x2x4mm which is tiny but I personally think a fine need biopsy should be done on it but it's too small for anyone to care. I could ask my GP for the Antibodies test and go from there, do you know which particular antibodies tests I should request?

  • At the time i had my ultrasound scan i was advised i would need to have a fine needle aspiration (FNA) to rule out any abnormality. The antibodies most often talked about are Thyroid Peroxidase antibodies (TPOab) and Thyroglobulin antibodies. I hope this helps.

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