Parathyroidectomy and thyroidectomy.

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I had Graves Disease.  When sent to an endocrinologist, he noticed my raised blood calcium and realized I also had a parathyroid adenoma.  Because I reacted to the 2 meds that can control Graves Disease, my thyroid had to be either removed or destroyed by radiation...so they did an op removing both my thyroid and my parathyroid.  It was easy for them to see, since the affected parathyroid was an inch in size, instead of like a grain of rice.

Post op I was on meds to slow my heart rate to prevent thyroid storm and on huge amounts of calcium to deal with the parathyroid.  Unfortunately the hospital pharmacy was out of Vit D, so I wasn't getting any...it was a long weekend and no more Vit D would be in till Tuesday, I was operated on on a Friday.

On the 3rd day post op I began to feel as if I was shaking all over, a very rapid tremor that was not visible.  My scalp felt like I had things crawling in my hair.  I was running to the loo every few minutes, feeling like I had a urine infection...but testing showed my urine was normal.  Gradually my face began to feel stiff, then later on I felt like there was a toilet roll shoved up inside my vagina...weird feeling.  I was telling the nurses...but although the dr came to see me, he didn't have any experience with my condition.  When I felt the stiffness vaginally, I hit the buzzer again and insisted I was getting worse.  He took a blood sample which showed my calcium levels were dropping rapidly.  I had tetany.

The hospital found another patient who was getting Vit D and took some of that patient's meds and gave them to me with more calcium and my symptoms rapidly disappeared.

It has now been years.  I did not have excessive hunger or weight gain.  My main symptoms have been a tendency to cramp now and again.  I know I had had raised blood calcium for 7 years prior to diagnosis, so I believe my other parathyroids sometimes are slow to work.  I just take a handful of calcium tablets when I cramp and that tends to deal with it.

But my mind is affected.

I can no longer concentrate when I am really tired, or sick or stressed.  I lose information, which comes back later.

The most dramatic example of this was when I was working on a cattle station in remote Western Australia (I live in Australia).  Once a week I would drive around checking windmills were working, that tanks were full and that troughs were not leaking.  This was a 2 day job, one day I would do 130km around half of the station, the next day about the same distance the other half.

One day I arrived at one of the windmills, one I had always found easily and knew my way from well.  I had been there 10 weeks in a row and it was easy to find with a good road. (Some areas the tracks would disappear, so not all were so easy).  Anyway, I arrived at 88 (all the windmills are named) and could not think of where the track to the next windmill was.  I looked around and there was a track leading off, but I was sure it was not the one.  Eventually I tried it, since it was the only one I could see, but it took me back to a windmill I had already checked.  I returned to 88 (30km round trip) and this time tried a track that branched off the one I had tried.  But that took me back to the same windmill that I had already checked.  Returning to 88, I ran out of daylight and had to unroll my swag and sleep there that night.  The next morning I woke up, thought "You idiot!  You backtrack here!"  went back along the track I came in on and found the track to the next mill I needed to check.

This was the most dramatic example, but many times I simply lose info and it is not available till after I have slept or relaxed for quite a while.

I had to give up my job as a school finance officer because I would forget how to do things I normally did regularly.  Or make other dumb mistakes.

That is how I came to be going bush and working on cattle stations.

I am curious to know if anyone else has similar problems.

I don't know whether it is the thyroidectomy, or the parathyroidectomy, or neither that have caused my weird inability to think at times.  I joke about it, say I am going blonde rather than grey, since I get ditzier as I get older....but I do wonder.

I have also finished my change of life, before the ops.

Looking forward to hearing from people who have experienced the same sorts of surgeries.

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7 Replies

  • Posted

    Hi anne..I had a thyroid lobe ectomy last august..had my blood tests which showed my level had dropped..was given levothyroxine...after 3 weeks on them i just started to swell up especially lower legs face ankles..had this like shivery feeling all over me seemed inside the body..so i stopped them then i had another blood still down so tried levothyronine..same thing happened...also thought had urine infection just awful feeling in that area...so stopped them..went to health store bought some nutural remedy that didnt work so need to make another appointment for more bloods but i feel like im not going to get on with the drugs still have this shivery feeling up arms legs...maybe i could do with some calcium....
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    • Posted

      My need for calcium seems to be related to my parathyroid being missing and the other 3 not always working well, Lesley.  Your shivery feeling sounds a bit like me when I am a bit low on my thyroid meds.  At the moment I have just had blood tests, waiting on the results, but I am cold, tired and a bit grumpy.

      I am on thyroxine sodium (Eutroxsig) 125mcg, but I tend to be a bit unstable and possibly need the dose put up again.  I have been feeling a bit like I have a virus...cold even when I have the heater going and go to bed and rug up.  It is late autumn here, but the coldest it has been in the house is 13 degrees celcius, not cold enough to account for how cold I am.  But it is most likely that I am not taking enough thyroxine.

      I think you should perhaps ask your doctor for a different form of thyroxine, but definitely should have blood tests to check your levels.  I haven't had the swelling you had though, so can't really say what that is likely to be.

      Good luck!

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  • Posted

    This is a very supporting group you can join to discuss your symptoms. You will find people from the west of Australia. I was operated of a huge parathyroid adenoma and it took me 2 years to balance the calcium ad I am still taking calcium every day so I am OK and much better than preop. I was loosing my memory and had brain fog before. Tanakan (ginkgo biloba)  was very good against it So I could keep my work. I hope you will find ideas to improve your health

     

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  • Posted

    HyperparathyroidismUKActionforChange is a very supportive group I wrote you an answer but I think it will be deleted by the moderator because I put an adress. I was operated of a parathyroid adenoma ad I am still taking calcium two years after. For brain fog and memory losses I take Tanakan (ginkgo biloba) very impressive to improve my brain. Good luck

     

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    • Posted

      Hi Tana, 

      Your first reply says it is still being moderated.  

      So, you got "ditzy" after your op too?  It isn't just me?  Because of my ops being done together, I have never been sure which problem caused my symptoms, but having lots of people in my family with thyroid issues, I thought it could be the parathyroid.  

      Have you ever, prior to the ginkgo biloba, had complete forgetfulness like mine?  I have chosen to just joke about it, telling people it happens so that they are aware it isn't put on at all, but just accepted it as the new me.

      I really appreciate your answer.  I will join the hyperparathyroidism group.

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    • Posted

      Hi Anne I fully understand your text  I had memory losses before the op I could forget my husband train, my daughters at school, my iron at home,where I put my car ... Tanakan had saved me for years even if I know it is not working for every body. I am much better post op but it took me 2 years to balance the calcium The group is very clever about magnesium and calcium management. I hope you will find your answer
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    • Posted

      Thanks Tana.  I have applied to go on the relevant facebook page for Australia, so am very excited to finally have a place to go for comparing notes.  With me having had the 2 ops in one, plus being the only one I knew who had the parathyroidectomy, it has been awkward finding out what is now normal etc.
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