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1 year post surgery update

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1 year post surgery update

Post by pilipala on Mon Nov 14, 2016 11:41 am

Dear All,

Sorry for my absence in recent months. I has been for good reasons though. I am now working two part-time jobs which as many know can add up to more than full-time. The last time I worked full-time was in 2011 and I was absolutely exhausted by it, so the is a good indication of how good my health has been post-op.

A brief summary of my HPT - 
In my early 30s, I didn't realised anything was wrong I just had a gradual decline of energy over years and just thought I was lazy/preferred a quiet night in. My health which had never been a problem just wasn't the same. I had weird bouts of constipation (despite eating the same high-plant based diet as usual) I also had intermenstrual bleeding at times. I then developed pain in my hip which was intermittent, got worse if I rested it, also got worse if I did activity outside. It improved when I gave up dairy(!?) and did lots of physio. After a (unrelated) tummy bug I got put on iron tablets. I checked my diet - I ate enough iron. it didn't make sense. I was getting weird fluttering stomach feelings when lying down and had a few months where I couldn't stop crying and i couldn't focus or hold a thought in my head. I had unexplained weight loss so got referred to gastro who tried hard to label me as having IBS (a diagnosis I still refute) but the one good thing to come out of it was my vitamin D was checked and found to be low. This coupled with the dairy-related hip pain led me to believe it was HPT, however it took me another 2 years of having various endos be extremely rude, the lab messing up their PTH tests for 6 months, me paying for private tests etc for me to be accepted for surgery in Florida. I should point out that it was the third time I approached Dr N. the first two times he said no, I didn't have it. So, the lesson I learned is never give up. When I was ill I couldn't imagine not being ill, it seemed so impossible to get it sorted, but eventually I did and I'm now on the other side.

So, what's it like post-op? I wasn't expecting that much. My levels were always borderline and I mainly did the op to stop further bone decline. There wasn't a huge difference immediately since the effect of the anaesthetic (and jet lag) meant I was tired anyway. However, after sleeping most of the afternoon and night I had a nice day out visiting the Florida swamps. I flew home the next day and had a few quiet days. Then I was back at work and very busy working away from home. Unlike before when I had to push myself constantly to do this and then have a week off to recover, I realised I was able to enjoy it and when I flew back home bounced back without needing any time off. I would describe it as being bouncy. This may well have been the effect of the post op vitamin D that I was on and finally body body had stopped metabolising it so quickly so my levels were rising. Florida put you on a very high Ca+vit D dose post-op to prevent your Ca levels crashing and it certainly worked for me. 

Everyone who knew me kept telling me how amazing I looked (great for the ego - though it may just be a reflection on how bad I looked for years). The post-surgery advice from Florida was very accurate - they said it would be up and down. I did have moments where I was worried maybe things were getting worse (gastro, hormonal, joints) but these things do fluctuate and you need to look at the overall trends. Unfortunately I don't have up-to-date bloods since my last consultant appt in the summer was cancelled and the GPs refused to give me my results (since it was the consultant that requested them) and since I feel ok I can't be bothered to fight.

The doctors here are rubbish as ever. I discovered why I haven't had the bone scan that the consultant has twice told me she has referred me for and upon which results she will discharge me. I phoned medical physics and they said even though she's put it in my notes, she hasn't filled out the necessary form and unless she does I won't ever get the scan. I'm saving this little nugget since I ideally need a scan two years post-op so I'm not pointing it out just yet. At this rate of cancelled appointments I should be on track for that.

I'm still taking one Calcitriol Max plus vit D tablet daily. I did stop a few months after the op but didn't feel great so went back to one a day. With one remaining parathyroid I don't want to stress it. I wouldn't say I'm like I was before I had symptoms but I can say I'm now in a position where health doesn't limit my life. Put it this way - I'm 1000% better than a year ago.

When I was ill I liked hearing from people post-op because it gave me hope. Often when facing deteriorating health, hope is all you have and you need it to keep yourself going through all the setbacks, confusing test results and appts with endiots.

Wishing you all hope and success in your own personal battles,

Much love



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Re: 1 year post surgery update

Post by Tigerlily on Mon Nov 14, 2016 12:19 pm

Great to hear your update, Dee - especially as you and I had appear to have had the same problem - 3 enlarged and abnormal glands removed.

 I have read that some experts regard primary parathyroid hyperplasia as the first stage in the formation of adenoma, so I believe my 3 abnormal glands would have progressed to more obvious adenoma if they had not been removed - and that would have meant all that PTH misery continuing for the next however long and ruining my sunset years (I'm 64, for those reading who don't know this). I am so glad that I persevered to find a knowledgeable and expert surgeon (FP) who was able to diagnose the problem and relieve me of the offending glands.

It's interesting too that you seem to have had the same post-surgery problems as I in that those who were unable to diagnose pHPT originally now refuse to see you. It happened to me, too! At two local hospitals! So I ended up with no-one monitoring my thyroid issues either, and my GP told me to find a new endo because she herself couldn't manage someone taking T3 only for Hashi's/hypothyroidism.

So I contacted the endo department of Ipswich hospital in the hope of being seen there for the thyroid issues - and by sheer serendipity ended up seeing endo Dr Sanjeev Sharma there who understood all about primary HPT and turned out to be a colleague of my PTH surgeon!! Of all the black clouds I had encountered along the way, this one sure had a silver lining!

I feel enormously better now since surgery in Dec 2014, but have been left with various bone and muscle problems that I am dealing with that I am sure stem from the PTH episode, as I believe I had the problem for at least 10 years prior to surgery. Maybe only in a mild form during that 10 years, but it is acknowledged (by those who know the subject) that even mild primary hyperparthyroidism can cause uncomfortable symptoms. In fact, if you look at the NHS Choices pages on HypOparathyroidism, they end with a section on HypERparathyroidism which states this fact. Ye gods! Even NHS Choices is putting out some of the right information at last!

So All Power To You, Dee. It's so good to hear that you are doing so well and have seen so much improvement since the surgery! I'm sure the new members here will be encouraged by your comments, too.

Don't be a stranger here, though - do pop back when you can, as I am trying to do as well.

Much Love from Tigerlily xxxx


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