Surgery 7 months ago and Tingling Today

I had my surgery 7 months ago and have been struggling for the past three months with tingling fingers and feet, ringing in the ears and numbness in my back.  My calcium and vit d levels are normal.  I believe that I have a low ionized calcium level which has not been checked to date.  I have been searching and found many people have these problems.  Anyone here have these problems.

After surgery I did feel 100 times better.  The surgery itself was very easy...I have had dental work that hurt more than that!  I had one nodule removed.  My levels went down immediately.  My calcium prior was around 11, vitamin D was 6 raised to 12 before surgery and my pth was 378...something like that. 

Since that time I have noticed my knees which were killing have improved.  I have still have foot pain when I walk. 

Thank God the brain fog has improved 80%.  I have more energy but it does no good if you can't really walk well.  I have gained weight but I don't exercise. 

I wish the Dr Norman site would address recovery.  Since he has done a million surgeries and some of those patients must have experienced some problems it would be nice to know maybe some of these things are common and to be expected. 

Oh and I did lose a lot of hair around the third month and it lasted around 2 months.  I did not like that!

If anyone has any questions about the surgery ect. I would be happy to answer.

If anyone can share their recovery I would be happy to read anything.

Thanks

Hi Susan

Sorry to hear you are not so good just now, as you have probably read both Brigitte and I had surgery last month and neither of us have had the miraculous cure that is so talked about. It is good to hear that you did feel so much better after your op, we like to have some positive posts

There seems to be a common problem for many that although post op calcium and pth are normal they still have symptoms of low calcium eg tingling and so on. The theory is that our bodies are so used to running with high levels it has a hard job coping with the normal levels. It is also said that those with higher pre op levels may have a harder recovery time post op.

My surgeon warned me that hypoparathyroid problems can occur days, weeks and months after surgery so something to be aware of.

When were your calcium and pth last tested ? have you tried taking some calcium when you are tingling to see if it has any effect, if it does then that may be the answer, you may just need a higher calcium level than you currently have, after all we don't actually know what level our bodies are comfortable at so being at a set point in the range may not be right for some of us, you might need a higher normal calcium than I do, if you see what I mean

It is unfortunate that all the reviews on Dr N's site are "miracle cures" as this is clearly not the case for many and dare I say probably a vast number of people, but of course they don't want to show those cases on the site. Of course some do have very good outcomes as you initially did and we have another member who is 100% better so there is always hope for people heading into surgery.

After my op, which took several hours and was very difficult, my calcium and pth hit the floor, I was put on Vitd and calcium and I felt dreadful for several weeks. My levels returned to normal and are still ok except my Vitd is very low again. Recovery is going slowly and I don't feel great, although bloods look ok I really feel no different than before my op, I get mild tingling sometimes along with some lingering pre op symptoms.

I believe for many of us this is going to be an ongoing problem with lingering symptoms and possibly the return of unstable, although in range calcium levels. The endocrine system is very complicated and it appears once things have gone wrong it is almost impossible to totally correct it.

So you are not alone in having post op problems and there are many similar stories on the internet, it is just difficult to find the answer. 

Have you had any helpful suggestions from your doctor ? maybe get some more bloods done if they aren't recent and keep track of levels, try some calcium when you are tingling to see if it helps, I think they suggest Tums but I read somewhere that they are the wrong type of calcium though I guess better than nothing.

Hopefully some of the others will be along to add their thoughts. Keep us posted as all info good and bad is useful to know.

Nelly

Hi Susan

Just wondering if you have had your Thyroid levels checked post-op.
Hair loss and weight gain can be symptoms of hypothyroirism.

Edwin

Actually tingling hands and feet can be thyroid related as well, not usually on the symptom list but it seems many suffer from it.

Hello...  I take synthyroid.  I had Graves disease when I was in my 20's.  I am 58 now.  My thyroid levels are normal.

Thanks to those who are posting.  Recovery from this disease is slower than I thought it would be.  What can be expected though after having our bodies being so totally on calcium overload. 

I pretty much diagnosed myself with this disease.  My doc did not have a clue though he was good about doing the other tests to confirm.  When I was referred to the endo he seemed to be a little more knowledgeable but really he did not tell me anything I did not already know.  And when I went back for the three month check up and brought up the tingling he said it "might" be related to calcium. 

I do believe my problems are calcium related.  I am just afraid to take calcium since I know the effects of too much. 

My last calcium level was 9.  I have been reading a lot about the calcium and there are two levels that are tested but they are combined.  It seems that the ionized calcium level is not something that is tested alone very often but again it is included in a overall calcium test.  I read somewhere (more than one place) if you are experiencing the symptoms I have that you should request an ionized calcium level.  I am going to do that.

Hi again Susan

I also had Graves in my teens and again in my 40's. The big question is what is "normal". Being in range is according to Drs normal but it depends where in range and what your personal normal level is. I assume you are now on thyroxine or similar. 

Having the pth op has thrown my levels off course, I had been stable on thyroxine for a good while but post op my tsh has gone from 0.35 to 1.39 and T3 has dropped below the range which is causing me problems.

If your thyroid levels are stable that is one thing to tick off 

Nelly

I think most of us self diagnosed, my GP had no clue and wouldn't have done anything, I found the Endo and chose my surgeon which luckily worked out well.

i don’t think you would run into trouble just trying a calcium tablet to see if it helped or if you are worried you could try drinking some milk or eating a yoghurt, it may just be enough to show if it is calcium related.

We don't use ionized calcium measurement over here, we use adjusted and on my last test my adjusted came out a lot lower than my serum so you probably do need to get that ionized one done.

Take care 

Nelly

I just did a post and it got lost...dang. 

I was just saying that I do believe that this disease is a lot more complicated than they know and recovery is not just a piece a cake for everyone.  I believe the longer you lived with the high or messed up levels and malfunctioning system the longer it will take to get better.

I also know that no matter what the test says...if I don't feel good something is not right.  (And I am not a hypochondriac...at least I have not been diagnosed as one yet) haha!   

I believe this disease can be compared to other diseases.  Like the diabetic whose uncontrolled blood sugar damages the body so does hyperparathyroidism.  How could it not do that?  If we are lucky our bodies are able to repair.  And the process is not instant.

I am going to keep looking for answers.

I have avoidance issues with calcium!  I am afraid of it!  I wonder why?!!!

And I am going to take calcium.  I took a 600 mg. +D around 10 and I am going to take another one soon.  I can't drink milk or eat yogurt.  I will take another one later tonight. 

I did double the dose yesterday and did feel some relief.

Oh yes I can understand your calcium fear, I was put on 3000mg a day and was told to take more if I needed it seemed to me to be a very high dose. Anyway it didn't agree with my stomach so after a week or so I stopped it altogether.

Like you I have had thyroid disease most of my life and of course with Graves we will always have it as the antibodies never go away and they can leap into action at any time so that alone can cause problems, add in hypothyroidism along with hyperparathyroidism and our bodies must be well messed up, no wonder we are struggling

Good luck with the calcium  

Nelly

Hi Susan

I'm sorry you're having some problems post op. I'm 6 weeks post op now and I have so far had a bit of a rough ride    I don't have any thyroid problems, but my epilepsy which has been quietly sleeping for 22 years has been causing hassle since the day after surgery. I'm still awaiting the day when I feel great, but it hasn't happened yet. 

I also think that the body must take some time to relearn how to cope after the high calcium has gone. I was not prescribed any calcium at all post surgery but got dreadful tingles and twitches. My calcium was tested normal several times but when I requested the actual figures, I wasn't surprised to discover that it was always a low normal, especially considering that it had gone so high before surgery. I dosed myself with extra calcium for a while and put myself on a high calcium diet to deal with the tingles the doctors didn't concern themselves with. If I get tingling now, I generally feel better after a glass of milk or a yogurt. It must be a bit of a pain if you can't do that, but I hope the added calcium and Vit D help your symptoms. I do find it better to spread the extra calcium out through the day, in about 4 doses as it were, so you don't end up with an empty spot and keep the calcium in the system. 

Best of luck with the calcium and do let us know how you're getting on. 

Brigitte

Bridgette...wow that is just plain awful for you to have to deal with epilepsy too.  How was it sleeping?  It was diagnosed and treated successfully up to now? 

My doc said to take calcium with D for around three months and then to stop.  But I am going to take everyones advice and take it.  I have muscle spasms/cramps in my legs too...hopefully this gets addressed with more calcium.

Yes, the epilepsy is tied in with another disease and it's been treated by me taking anti-convulsants all this time. Not any more apparently! I'm not sure whether it was having pHPT or having the surgery that messed things up but it does seem that having had pHPT can play havoc with your system and throw up problems with any other health issue you may have, according to all sorts of information I've read. 

Hope the calcium helps and maybe you should get your levels checked in the not too distant future. 

Brigitte

Hi Susan,

So sorry to hear you're having such a rough time.   Yes, I too think it would be a good idea for Dr. Norman to include those of us who did not experience miraculous, instant, recoveries on his site.    We all just expect our world is going to be a beautiful, happy place with beautiful flowers, and pretty, little singing birds, and many times it simply just isn't!!   It wasn't that way for me either.  I am 5 days away from celebrating my 1-year parathyroid surgery anniversary.  

My bone pain took a couple of months to resolve after surgery, but it finally did.   I believe Dr. Norman says on his site that bone pain is usually the first symptom to resolve, and that almost always happens immediately after surgery.    I always like to be different.        
My IBS improved greatly immediately after surgery.  I was very grateful for that.   I still have a bit of trouble with that from time to time, but most of the time it's not an issue at all.  

My hair started growing back immediately after surgery, even though a lot of it continued to fall out for a few months afterward.  I know that doesn't make much sense, but that is what happened.   I had lost a lot of hair in the front of my head, on the sides toward the top.  About 2 months post-op I noticed a LOT of little inch-long hairs in those little patches growing back, but while they were growing back, still more continued to fall out.    That all stopped for several months and then a few months ago it started again.   This time the hair does not seem to be concentrated in any specific areas, and it's not as bad as it was before surgery.    

My head no longer hurts every day, as it did for a few years.    

And I am FINALLY sleeping better!!     For 3 years before surgery I was only able to get 2-3 hours of sleep a night.   Sometimes now I can sleep for 6 or even 7 hours.  I still have to get up to use the bathroom, but I can fall back to sleep.     My hips and knees no longer ache terribly when I'm trying to sleep.  That is nice too.

However, many symptoms that I was blaming on the HPT did not resolve, and at this point, I have no idea if they actually are symptoms of HPT or something else, since I am also hypothyroid, and I also have some adrenal issues now.    

I am still cramping terribly in my neck, shoulders, upper back, and upper arms.   These areas have not stopped cramping now for 3 straight years.   It truly is hell!   Imagine the type of cramp you might sometimes get in your calves.  Now imagine having that in your neck, shoulders, and upper back for 3 straight years nonstop.   Sometimes I just don't think I can get through another day of this.  

I still have quite a bit of pain in my heels and the bottoms of my feet, but at least now I can walk without crutches!    I had to use them for months before and after my surgery.   Sometimes it feels like I'm walking on golf balls.    Even though I can walk now without a whole lot of pain in my heels, standing is still TERRIBLY rough to do!    For some reason my heels and feet hurt terribly when I stand still.   Very strange!

My little toe joints started aching and burning several months ago.   This hurts badly too!    

My eyes still try to cross a lot, causing double vision.  This happens mostly toward evening when I'm most tired.    My left eye is still very dry quite often in the morning when I awake.  This lasts for about 20 minutes, and then it's fine for the rest of the day.

I also started twitching badly after surgery.   This started at 4 months post-op for me.   I had a lot of trouble with nonstop, twitching eyelids for a few years before surgery.   After surgery this stopped for a few months.  Then 4 months post-op I started twitching nonstop not only in my eyelids (uppers and lowers), but also in my forehead, cheeks, chin, upper arms, thighs, around my knees, and in my lower legs (sides and calves).    In my case, I know it is not being caused from low calcium.   My calcium has never gone below 9.7 since surgery.    I am still having some trouble with this twitching, but it is now much more infrequent.   I still feel some twitching somewhere every day, but it's not in all locations at once, not as intense, and it is no longer constant.    I remember someone else saying they started twitching several months after surgery.  They said they were 1-year post-op at the time of their post, and they said they were barely twitching at all at that time.   I guess maybe this is just the way some of our bodies deal with adjusting to a new calcium level.  

I also started tingling in my hands, forearms, lower legs, and feet.   The hands were the most noticeable.   I haven't noticed any in my forearms, lower legs, or feet for a couple of months now.    The only things that remain tingling are my hands, and I noticed over the past week or so that they are not tingling as intensely.  Sometimes I don't even notice it.    I don't think this either has been caused from low calcium, since, as mentioned above, it has never gone below 9.7 since surgery.

No, some of us do not recover quickly from parathyroid surgery!!

Eight months ago I became very weak and shaky, and my blood pressure plummeted.   Turns out I now have adrenal issues as well.   Yippee!!    I am being treated for that, and am feeling MUCH better.    My blood pressure now stays pretty normal also.  

Five months ago I started having a terrible problem with edema.  I was pitting all over my body.    Diuretics don't seem to be helping much at all!    My PA, my endocrinologist, my neurologist, nor my urologist have any idea why I am so full of water.   My neprhologist feels it is the edema that is causing the kidneys to stop producing renin.  Since renin triggers aldosterone production, he feels this is why my aldosterone is low, causing the weakness, shaking, and low blood pressure.   He feels if we could get rid of the edema, the kidneys would start producing renin, the adrenal glands would start producing aldosterone again, and my blood pressure would normalize on its own, so I might not need adrenal medication.   Problem is, we can't get rid of the darned water!!!      I'm still thinking this is all from the thyroid problem.    

I just switched from Armour to Synthroid, when I read that Armour can cause extremely cramped, stiff neck, upper arm, and thigh muscles.   I have kept a post-surgery diary since the day of my parathyroid surgery.   Every day I have typed that my neck, upper arms, and thighs are very cramped, stiff, and painful!    So I got off of the Armour and started on the Synthroid.    It's only been about 10 days, but there has been no improvement yet.    If I could get rid of this neck pain, I would be in heaven!!       Since it is hard to get the dosage right when making the switch from natural thyroid hormones to synthetic, I am not sure at this time if my dosage is where it needs to be.   This will take some time.    I am wondering if maybe I'm taking too much or too little.   I'm wondering if maybe that is why my muscles have been cramping so badly for so long.   I sure hope in time we can get this figured out!

I too diagnosed myself.   I did so about 2-1/2 years before any doctor would diagnose me.    They all told me my levels weren't high enough.    After having 2 tumors removed, I proved them all wrong.

Nelly and Brigitte, I'm sorry you are both having so much trouble with recovery too.    Yes, it seems to take some of us quite a while to recover.      Nobody ever talks about how rough it might be, but it seems like a lot of us have or are struggling pretty badly!    Better days are ahead!!!

Audrey

Hi Audrey
You have had such an awful time, like me you expected to feel much better after surgery only to be knocked sideways by finding out that something else is preventing you from getting back to full health.
I suffer with the neck/shoulder/head aches/cramps and its hell.
I just hope they can get to the bottom of what is causing your edema and fast.
Keep on your fight, you deserve to get your health back you have had to put up with so much and you still keep your humour.
Love Amanda xxxx

Thank you for the kinds words, Amanda, and you too have suffered WAY more than your share!! You poor thing. It is so sad to think so many people are suffering so badly. I continue to pray for us all. There HAS to be a better life awaiting us all. There just HAS to be!

Audrey

Oh I do hope so but I'm rather afraid that I'm going to be left with all the symptoms because my calcium is always going to be high.
Love Amanda xxxx

Oh Amanda, I hope that doesn't have to be so   You need a different approach and you should get one once you finally get referred to Genetics. Big, huge hugs  

Audrey, you have to be right. There just has to be a better life awaiting us. You, Amanda and Jasmine in particular need a major advance on the good health stakes, with Nelly and I and Susan as well, plodding on behind. I won't let go of the fact that better solutions are there for all of us! Somewhere... 

Love and hugs 

Brigitte xxxx

I agree, Brigitte. There has to be help out there somewhere for us all. Nobody should be suffering as we all are. I do feel as medicine advances, there will be solutions to all of our problems. It's just a shame we have to wait so long for this to happen. Hopefully, it won't be much longer!

Audrey

Brigitte & Audrey
You are both such troopers you have so much crap going on yet you still have time to consider how others feel, I think I can learn a lot from both of you and many other wonderful people on this forum.
Big hugs to you love Amanda xxxx
P.S my TV blew up last night, I've just spent a small car in currys buying a new one that can't be delivered until Wed. Thank goodness we have another one otherwise I'd have to sit and look at Mr Amanda instead.    
Xxxx

What a sweet thing to say, Amanda. It is very kind of YOU to think of others considering all the crap YOU are going through too! My goodness!

Sorry to hear about the TV. Isn't it funny how much we depend on our TVs to get us through the day and night? I would be lost without mine too! I need it to help me smile and laugh throughout the day! Well, my sweet, little cats help too, but I do enjoy the TV. I'm glad you have the spare to get you through this tragedy!

Audrey