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Here we are again

11.08.17

So here we are again, too much time has passed since I last blogged.  A lot has changed since I last posted, and I think it is about time I shared with you one of those things.

You may remember this post, from the beginning of the year, when I explained what had been going on for me health wise.  Well I have some news, and because some of you ask how I am from time to time, and also on the tiny off chance that this could help someone else find out they have the same condition as me, I wanted to give you an update.  I am going to try and explain this as simply as possible, so hopefully it is clear, but I apologise if it all gets a bit too in depth, and drawn out.

After my visit to the delightfully arrogant neurologist mentioned previously, I went back to my GP.  I begged her to do more tests, one of which I had been tested for before; my parathyroid hormone.  Let’s rewind a little so I can explain, two years ago, I was diagnosed with low bone density.  I won’t go in to the whole story, but needless to say, the diagnosis was devastating, I had a two year old daughter and a condition associated with the elderly.  It actually took me a whole month before I could say the words “bordering on osteoporosis” out loud. I was referred to a specialist, who tried to ascertain why my bone density had reduced, he ran a couple of tests, one of which was my parathyroid hormone (PTH).  In a nutshell, you have 4 parathyroid glands and their job is to control the calcium levels in your blood (despite their name they have nothing to do with your thyroid other than they sit anatomically next to it).  My PTH levels were high, so I was referred to a different type of specialist, an endocrinologist.

So what causes high PTH, potentially three different things, low vitamin D, a secondary illness, like liver or kidney disease, or an adenoma (a usually benign tumour), otherwise known as primary hyperparathyroidism.  Anyway, off I trotted to the endocrinologist, who told me my high PTH was caused by low vitamin D.  Strange, my vitamin D was actually at the top of the range.  Back to the doctor I go, and ask to be referred for a second opinion, this time privately..

Endocrinologist number 2 – well, he had no interest in my high PTH whatsoever.  Instead, he banged on about the benefits of HRT for half an hour, particularly surprising, seeing as I’m not actually menopausal!

Despite my symptoms matching primary hyperparathyroidism perfectly, that was the end of that, I figured well if 2 specialists think I’m ok, then I guess they must be right.  So fast forward again, to my post neurologist GP visit earlier this year, and the little niggle in the back of my head, about my previously high PTH.  Well, guess what, when the GP repeated the test, my levels were still high.  I knew it wasn’t my Vitamin D and I didn’t have a secondary condition, so thankfully the GP agreed to a scan.  That scan found an adenoma, or so we thought.  When I got my results, I cried with relief, despite the multiple brush offs, I knew there was something wrong with me.  This proved I wasn’t mad, or a hypochondriac, I had my answer.

Hence, endocrinologist number 3 – given my scan results and the high PTH level, he sent me for two more scans; a contrast CAT scan and a nuclear medicine scan.  Both pretty unpleasant.  He also requested some other tests; my PTH was still high but my calcium was normal.  Now, for primary hyperparathyroidism, the Doctors look for two things, high PTH and high calcium.  But I didn’t fit that criteria, and as one of the scans came back negative, his opinion was I didn’t have primary hyperparathyroidism.  Thankfully he said he would write to the surgeon anyway for a second opinion.

Surgeon’s appointment – he agreed with endocrinologist number 3, he felt the ‘adenoma’ shown in my original scan was in fact residual thyroid tissue (I had a thyroidectomy about 20 years ago), but the only way to be sure was to have a biopsy under ultrasound.  Thankfully the biopsy wasn’t necessary, the surgeon was right, it was residual thyroid tissue, but a bit below that, what did the guy doing the ultrasound spot, a parathyroid adenoma.  A month later, I was in surgery, and had not one but two adenomas removed, yep they found two!

In theory removal of a parathyroid adenoma, is an instant cure.  The surgery completely wiped me out, much more than I was expecting. I felt dizzy and foggy for a good couple of weeks. But a month later, I can see some improvement, I am sleeping better most nights, I no longer wake every hour or two, just once or twice a night, and I think some of my pain has gone,

So, was it the answer I have been searching for – here is where it gets complicated, endocrinologist number 3, felt that there was another factor contributing to most of my symptoms, my thyroid, or rather lack of it.  He believes that, in very simplistic terms, I am not converting my hormones properly.  As a result of this, he changed my medication a few weeks before my op.  As I suspected and a blood test has since confirmed, my dose isn’t right yet and I currently still have symptoms (probably) caused by that, or possibly because it just isn’t the right drug for me.  All this means, that I can’t really tell yet whether the surgery has helped, which is rather frustrating.   I don’t know whether it was the answer.  But, at least I know that the calcium is not being sucked from my bones by a tumour anymore, so for that I am thankful.   There are days when it all gets a bit much, my neurological symptoms still terrify me, but most of the time I feel positive that one day with a healthy lifestyle and persistence, I will feel well.

I know this has been a long post, so If you are still reading, thank you.  I thought about keeping it brief, but I felt that it was important to tell the whole story.  Perhaps neither of these things will be my answer, perhaps I won’t ever really find the cause.  But giving up on finding one, is giving up hope.  It took me 4 years to get to here, 4 difficult years and it isn’t over yet, but one day, it just might be.

Emma x

24 comments on “Here we are again”

  1. Ahhh Emma, what a nightmare you have been through. It’s so so horrible when you know there is something wrong and you keep being brushed off and pushed from pillar to post by doctors who don’t want to help. I’m glad you have finally found someone who can hopefully help you. And I have my fingers crossed that soon your dose will be right and you will start to feel well again. Big hugs xx

  2. Dear Emma! Your fortitude & positivity has alone kept you going & looking for a reason for your illness. You’ve come so far…I am sure you get there! To keep seeking when you you ‘know’ a diagnosis is wrong takes a lot of inner strength, especially when you’re fully aware that commodity is depleted already. Keep going and so many congratulations on coming this far….you’ll get there…don’t give up! So much love…Jackie xs

    1. Hi Jackie

      Thank you so much for your kind words, what you said is very true, it isn’t always easy to find the strength. But I hope that I’m not far off now, and will be able to live my life again normally once more x

  3. Emma what a very shocking read and what a traumatic time you have been living. I am so sorry about it and am sending you so much love virtually. It’s so shocking it’s hard to know what to write just now. You are very much in my thoughts. It must have taken great courage to write all this down. You are brave to do that. I hope the loving support you receive back from friends will bring you some emotional healing if nothing else. Take care. Lots of love. Angela x

    1. Hi Angela

      Thank you for your comment and thoughts and taking the time to read the post. These kind of posts are funny really, in some ways I find them easy to write, it just spills out but the posting it is a lot harder. I do however, think it is important for people to realise that we (bloggers, instagrammers, etc) don’t have perfect lives. Our images might represent that, but reality is different, and it is therefore ok for the people who read/follow me to have imperfect lives too. I think the pressure these days with visual social media is quite overwhelming so reality is good sometimes. Emma x

  4. Dear Emma I am as you know very much rooting for you and I do believe you will feel well as will I! Just further patience and persistence needed, lots of love xxx

  5. Gosh Emma what an ordeal you have been through. Really hope the surgery has helped. Wishing you a speedy recovery xo

  6. Ah bless you Emma. thank you for telling your story. my daughter has lots of complicated endocrine issues following brain tumours and radiotherapy and we see it’s a hugely complicated field of medicine. i really feel for you and all you’ve been through but am so glad to hear that you’ve had some answers and treatment-what a trouper you are! i admire your courage through this journey-hang in there!

    1. Hi Sarah.

      I think you are right, it is a complicated field of medicine, and often misunderstood by those who have not experienced it. The thyroid effects every little part of the body and when it is not working properly the symptoms are many and varied. I hope your daughter is getting the help she needs to be well.

      Emma x

  7. Oh, Emma. I’m so sorry you are going through this. I’m sending hope and healing energy from San Francisco.

    It’s so frustrating when this vehicle that carries us through life let’s us down. Ah! Faith, not fear.

    Warmly,
    Pati Fisher

  8. Dear Emma

    Yes I did read all the way to the end and thank you for sharing!

    The frustrations of knowing there is something wrong and trying to get people to understand and take what you are saying as important is as painful as what you are feeling!! We trust and believe in doctors etc as being the experts and most of us don’t feel we can question them and so just carryon feeling rubbish!! So well done you for keeping going!

    I hope things start to sort themselves out soon….4 years is a long time to be feeling rubbish.

    With much love and hugs
    Hannah (@spurstotty9)

    1. Thank you so much Hannah. Unfortunately I have lost faith in doctors over recent years when it comes to chronic conditions, and not just because of my experience but those of friends and family too. I appreciate that they cannot know everything but there are areas that can be improved, communication being one of them. If specialists communicated with each other, perhaps it would not have taken me this long to get to where I am today. You almost have to become your own doctor these days sadly.

      Thank you for your well wishes.

      Emma x

  9. Hi Emma, what a brave story. Sorry to hear what you’ve been through. I really hope you are finally seeing the light at the end of the tunnel. Take care. X

  10. Dear Emma

    As someone who went through nastiness in that area, (and some breathtakingly patronizing doctor behaviours) I feel for you (especially with the hideous see-saw effect of those medication levels to get stable again with it all).

    6 years on* (for me) – life is transformed.

    *wavingfromlosangeles* (originally from Brighton, myself).

    _sophia

    *https://teamgloria.com/how-to-stay-sane-in-a-crazy-world/

  11. Hello Emma, I am very sorry that you are going through this, but glad you’ve got some answers, albeit after far too long. Well done for being brave and continuing to question and fight for yourself. I really do hope that your health continues to improve and you feel better and stronger soon. I am sending you lots of love, Lucy xxxxx

  12. It really sounds like you’ve been through the ringer, well done for following your instincts and pushing for more tests. I really hope they manage to sort out the right dose for you soon, and you get on a more even keel x

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