Really, Really angry!!

[Anne-M]

Hi folks

You may have read my posts before- hyperthyroid with goitre age around 14 yrs, half gland taken away when 17 or 18, another op and scar to clear up mess of first op, more nodules so full thyroidectomy in 1988 and removal of parathyroids. Lots of health issues since, haemochromatosis, lots of pain, sciatica, depression etc never well, caught everything going and took ages to recover!

Started ndt 7 weeks due to reading posts etc. However had an Endo appointment the 1st of June and I only went along to get my calcium and b12 results. 2.23 and 1236.

Today I received a letter from her saying:

Diagnoses

Completion thyroidectomy for multinodular goitre in 1988 (yes, I know)

Haemochromatosis (yes I know)

Hypoparathyroidism following thyroidectomy NO I DID NOT know this!!

In all my years nobody has mentioned Hypoparathyroidism, nobody has tested my levels, vitd, etc etc they used to prescribe me Sandocal until a couple of yrs ago when I said should you not have vitamin d with that? So ok they gave me

My nails break and my teeth crumble!

Please any advise would help.

I have just messaged the fantastic Lorraine Cleaver who has advised I ask to be tested etc

Sorry for rant but very angry!

Thank you in advance!

[bantam12]

Did you have all 4 parathyroids removed ? if so why as surgeons will always try to leave one at least, if one or part of one was left it can take over the work, if all 4 were removed then you must take calcium supplement, can be tricky to control levels.

[Anne-M]

I think,I have one left but I will check with my GP. I was so young and niave when all this was going on. At the moment I am prescribed adcal d3. Thank you for your reply

[bantam12 in reply to Anne-M]

Your GP might not know if you have one left for not, the diagnosis of hypoparathyroidism was likely made due to low calcium and PTH results. The Adcal you are on is the right treatment but you need to be on the right dose, calcium at 2.23 is possibly ok depends on the range. A parathyroid blood test taken at the same time as calcium might give a bit more info.There is a good website for hypopth, hypopara.org.uk

[Anne-M]

Thank you bantam I will check the website out

[Heloise]

You deserve a rant. This is another reason why any thyroid problems should be addressed outside the thyroid. The gland is not at fault even though that's what they blame and remove. And then leaving you to flounder without basic organs which you cannot live without. Obviously we have to learn to how to take care of ourselves since the professionals refuse to. Disgusting!

[Anne-M]

Thank you Heloise, I thought I was doing that dealing with hypothyroidism n haemochromatosis. I have advised my liver nurse that I want my ferritin to b raised to at least 75 because of thyroid. She nor the other gastro Drs had heard this before! Thank you I am just so angry! X

[Heloise in reply to Anne-M]

Anne, I thought your ferritin would be very high. Mine was over range at 150 and I thought I might have hemochromatosis so I thought yours would be as well. Do you draw off pints of blood once in a while? There is something called IP6 you might look into.

The calcium may be regulated by the one parathyroid hopefully. When you take vitamin D3, it raises your calcium. Would that make a difference in your calcium treatment?

There are lots of helpful people here so at least you have support at your fingertips.

[Anne-M]

Thank you, yes I have had venesections, but when diagnosed they keep you in maintenance at 50 or under. For the last year my ferritin was 25, 25 and now 37 at each 4 monthly check. I emailed the lovely nurse who looks after me advising with the advice learnt on here- ferritin should be around 70-90 for Hypoparathyroid patients. she had never heard of this but would ask the two consultants at their next meeting. They also did not know this but were happy if I wanted it to climb to 70. I also asked the Endo who says she has never heard of this either.

Have you had a genetic test for haemochromatosis? A normal iron blood test is no good! When still unwell after swine flu my gp did a variety of tests n my iron came back a bit high. He then sent off for the genetic test, but meanwhile took another iron test which came back normal, so he concurred I did not have haemochromatosis after all. Then 6 weeks later I got a letter saying I was HH positive. My point is you need the genetic test, ferritin of 150 seems pretty high, but I am no expert!

I am still pretty mad and feeling incredulous at the ineptitude of all these Drs who do not take some sort of holistic approach. Surely when someone has more than one chronic condition they should all get together with the patients notes and decide on the best way forward for the patient taking into account all results etc

Thank you for answering my post I really appreciate it x