Here we are again

here we are again.jpg

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, is 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