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Post Parathyroid Surgery

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Post by Jane321 Mon May 12, 2014 5:47 pm

hi

Please can someone give me some advice as my doctors aren't helping at all.  So I had my parathyroid surgery about 1 year ago and 1 tumour was removed, as you all know it took a few years before they found out.  The surgery went well but for a few weeks afterwards my calcium was very low and I feel quite bad anyhow I gradually improved but i few months ago got bad again.  I have seen just about every doctor at my surgery, without much luck but had to push them for blood tests which they did, results were as follow:

TSH: 0.97
B!2:  495
Folate:  5.7
PTH:  32.4
Vitamin D:  38
Ferritin:  7
Free T3:  4.66
Haemoglobin:  124
White Cell Count:  4.3
Red Cell Count:  4.19
GFR:  88

The doctor didn't think there was anything wrong so they brushed me off, however out of the blue I got a letter from the hospital asking to go in a for an urgent Colonoscopy and a Gastroscopy.  I was abit surprised by the urgency but I went and my results were normal, which i was very pleased about, anyhow I received a letter saying they cannot find a surgical reason for my low ferritin so are going to refer me to the Anemic Clinic.  I didnt think i was anemic and my doctor never mentioned it.

I feel awful everyday and am suffering from the same symptoms as before my surgery, i.e. exhaustion going to be at 7pm, constipation or diahhorea, pains down my side or in my tummy, feeling sick, feeling very cold but hot at night.

Any advice would be a great help as I am feeling quite depressed at the minute

Kind Regards
Jane

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Post by Johnny1967 Mon May 12, 2014 5:52 pm

Was calcium tested in that batch?

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Join date : 2014-03-30

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Post by Jane321 Mon May 12, 2014 6:22 pm

Yes it is 2.50 and my corrected calcium is 2.38

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Post by Amanda Lynne Mon May 12, 2014 7:55 pm

Hi Jane your ferritin is very low and that will give you horrible symptoms. I suffer from continuing low iron and get these symptoms, mine goes as low as 3, I have iron infusions every 6 mths, they have never found out why I have this.
Amanda xxxx
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Post by Guest Tue May 13, 2014 8:43 am

Hello Jane
Ferritin is a protein produced in the liver and it can rise and fall for reasons other than low or high iron stores. Ferritin is just an indication of stored iron levels in your body. Your haemoglobin is good enough at 12.4 thus your low ferritin may not be due to lack of iron. Your red cell count is normal for a woman who has periods.
In a case where you are loosing iron through bleeding (from your gut) then your ferritin would possibly become low first before the haemoglobin thus I can see why the docs wanted to look for a bleeding source by carrying out a colonoscopy and a gastroscopy. However before putting you through such unpleasant invasive investigations was perhaps premature. I think other things should have been tested for first.
I would say at the very least you also need routine liver function blood test and kidney function blood test. Has this been done?
Have you been tested for coeliac disease which is when your body cannot tolerate gluten and actually produces antibodies against it. Coeliac can result in malabsorption and can result in low iron levels etc. You can feel pretty rough with coeliac. This definitely needs excluding.
Ferritin can be low or high because of infection however your white cell count is well within normal range but you could still have an infection somewhere.
Perhaps your doc needs to do some further blood testing and other testing.
If you are having diarrhoea and sickness I suggest a stool culture to check for infection in your gut and also a urine culture. Felling cold and hot may indicate an infection. Do you have a fever? Check your temperature.
Are you on any medications that could be giving you side effects?
There are many factors that need excluding as well as keeping an eye out for your parathyroid stuff. I suspect you need to go to a different doctor and ask for further assessment.
I hope you feel better soon
Maggie2 x

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Post by Guest Tue May 13, 2014 8:59 am

Just as an addition. I've just had a thought. Are you taking oral iron supplements? Quite often oral iron can give you gut problems of diarrhoea and cramps, sometimes constipation too. If you are taking iron then stop taking it. You are not anaemic you just have a low ferritin.
maggie2 x

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