CSN Login
Members Online: 3

Question please

deb deb
Posts: 8
Joined: May 2011

I recently had my entire thyroid removed, due to cancer.. i have been having problems with numbness I can't feel my fingers and they cramp up. Also, my toes cramp and tingle. almost as if they have been asleep for days and just awoken. I get extremely tired and forgetful, the worst part is that cobra insurance ended just a week after surgery, I did get my stiches out, and was put on synthroid, but nothing else was done.. I asked for my surgery reports and found out that 3 parathyroids showed up in the pathology reports, The doctor never mentioned this to me.. I have read that its pretty important to save these, but shouldnt the doctor have told me? or ordered tests?? Since i'm uninsured right now, i have no doctor, another thing is this RAI stuff, it also was never mentioned, actually the surgeon told me i didnt even have to see my reg doctor for a few months, and for me not to worry that no-one ever died of thyroid cancer. Im feeling pretty foolish and naive, but i just dont have the energy to do anything, I am wondering if low calcium is reason??? Anyone have any ideas??? please any info would be great! deb

alapah's picture
alapah
Posts: 259
Joined: Oct 2009

If you have limb numbness after a thyroidectomy you likely have problems with your parathyroids - tingling, cramps and numbness such as you describe can be a sign that they are not working and that your body is not processing calcium properly. My understanding is that malfunction of the parathyroids can be quite serious - if your calcium level gets too low.

After my TT, the surgeon suggested that I take high doses of calcium for a while while my parathyroids recovered (two or three of mine were saved). He also told me that if I had numbness is my hands and/or feet I needed to get to him or my GP. You state that 3 parathyroids showed up in pathology - I believe we only have four normally, so that means you now have only one! The remaining one may be stunned and not functioning properly. They should have told you about this after your surgery and they should have checked your calcium levels before discharging you - did they?

deb deb
Posts: 8
Joined: May 2011

Thank you for your help, I should have spoken up along time ago, and maybe i wouldnt be feeling so crappy right now.. No, there were no blood work done to me after either surgeries, it was pretty much in and out for both . The second one was scary, I felt like something had gone wrong and i was paying for it.. I woke up and could not breathe, like someone was choking me, the doc looked sccared, said something about a blood clot and that they were gonna have to go back in, and they needed me to give permission for anesthesia, i did and when i woke up again they told me that the problem had resolved itself so they spent most of the time giving me a very time consuming but perfect closure. Whatever.. it got scary when i saw that id been in surgery for close to 8 hours, they put me in a room, only to move me out of the surgery ward to another floor, where they gave me a potty chair took off the blow-up leggings, and never checked on me till discharge. I am having serious mind fog problems now, and feel like im forgetting everything. so before i forget, again thank you for your help! deb

3boys_mom
Posts: 47
Joined: Jun 2011

If you are not insured, take your pathology reports and get to the ER, ASAP. They can check your calcium levels. I also think something about this whole thing smells very fishy!!!!

I'm not trying to terrify you, but calcium is very important. Having one parathyroid removed can cause problems--have three removed??? I can't believe they didn't say anything!!!!!

Sarah

csequera05's picture
csequera05
Posts: 6
Joined: May 2011

it definitely sounds like its your calcium levels, i also just had a total thyroid ectomy, during surgery one of my parathyroids were removed however the surgeon saved it, well how he explained to me was basically he grind-ed it up and injected it back in my arm, and it should start working for me in a few weeks, in the mean while yes i have experienced numbness, in my fingers and toes... i take 2 tums in the am and 2 tums at night ... honestly havent really had the numbness feeling.... i hope you feel better -----take care

deb deb
Posts: 8
Joined: May 2011

Thank you for your help, I think i had a not too "up-to-date" surgeon. Did your surgeon tell you about parathyroid risks before surgery? How long was your procedure? and how long were you in the hospital? Did you have cancer? sorry for all the questions...but i'm not feeling all warm and fuzzy about myself, or my doctor. deb

deb deb
Posts: 8
Joined: May 2011

Thank you for help also! Please read my reply to the Calcium levels... no, not only has no one said anything to me, I was never told about this risk, I had a friend go with me to all my appts and the word parathyroid was never mentioned at all. I have gathered my pathology reports and i am going to ER. How sick can this low calcium make you??? Do you know if it would have anything to do with my hands becoming so twisted and cramped that they lock up! i cant do my buttons, bra, shoelaces.... i sometimes think that i am dying. All this mental confusion, fatique, numbness, tingling, cramping and friggen pain, can all this be low calcium??? deb

alapah's picture
alapah
Posts: 259
Joined: Oct 2009

My original subject header for my first reply was "get to an emergency room" but I didn't want to alarm you too much. I cannot understand why no one discussed parathyroid function with you - that seems to be such an incredible oversight. I believe that foggy brain can be the result of ill functioning parathyroids as well. I'm glad you're going to the ER. I hope you get to ask the docs there all of your questions - is a friend going with you? Let us know how it goes Deb. best to you.
eileen

nasher
Posts: 507
Joined: Apr 2010

most people have 4 parathryoids and you only need 1 to have normal levels but if you are not normal or if the remaining parathyroid is not up to the job then you are probably haveing major medical issues.

if you have not yet yes you probably do need to go to an ER or at least get labs taken to see how your parathyroid is functioning and what the levels of calcium are

ok trying not to get to scarry here but I am going to do some cut and paste about parathyroid deficencies and it will get scarry.

---- from wikipedia ---
hypoparathyroidism

*****
*****
Severe hypocalcemia, a potentially life-threatening condition, is treated as soon as possible with intravenous calcium (e.g. as calcium gluconate). Generally, a central venous catheter is recommended, as the calcium can irritate peripheral veins and cause phlebitis.

Long-term treatment of hypoparathyroidism is with calcium and vitamin D3 supplementation (D1 is ineffective in the absence of renal conversion).

In the event of a life-threatening attack of low calcium levels or tetany (prolonged muscle contractions), calcium is administered by intravenous (IV) infusion. Precautions are taken to prevent seizures or larynx spasms. The heart is monitored for abnormal rhythms until the person is stable. When the life-threatening attack has been controlled, treatment continues with medicine taken by mouth as often as four times a day.

*****
*****

Signs and symptoms
Tingling lips, fingers, and toes
Muscle cramps
Pain in the face, legs, and feet
Abdominal pain
Dry hair
Brittle nails
Dry, scaly skin
Cataracts
Weakened tooth enamel (in children)
Muscle spasms called tetany (can lead to spasms of the larynx, causing breathing difficulties)
Convulsions (seizures)
Tetanic contractions
Additional symptoms that may be associated with this disease include:

Painful menstruation
Hand or foot spasms
Decreased consciousness
Delayed or absent tooth formation
Calcification of the basal ganglia due to increased phosphorus levels driving calcium into the brain tissue.

Possible Complications
Tetany can lead to a blocked airway, requiring a tracheotomy.

Stunted growth, malformed teeth, and slow mental development can occur if hypoparathyroidism develops in childhood.

Overtreatment with vitamin D and calcium can cause hypercalcemia (high blood calcium) and sometimes interfere with kidney function.

There is an increased risk of pernicious anemia, Addison's disease, cataract development, and Parkinson's disease.

--- end cut and paste 1---
ok when they removed my thyroid i had 2 of my parathryoids takeing out as well I was on IV calcium for a day and then on vitimin d and calcium supplements for the rest of my life along with yearly (or more frequent) checks on my calcium and vitimin d levels.

--- cut and paste from http://parathyroid.com/low-calcium.htm ---

How Hypoparathyroidism Affects Patient's Lives

Calcium and Vitamin D Requirements.

Patients who have had all of their parathyroid glands removed or destroyed will require high doses of calcium and Vitamin D every day for the rest of their lives. Almost all patients in our study are required to take 4 or more calcium pills per day. Two-thirds (67%) have to take 5 or more calcium pills per day, and 25% have to take 8 or more calcium pills per day. Almost all patients take at least 2 Vitamin D pills per day, with 1/3 taking 3 or more per day. Thus, most patients who have hypoparathyroidism must take 8 or more pills per day in order to carry on the daily functions of life.

Despite taking these pills, 45% of patients say they still get symptoms of low calcium at least once per day. The most common symptoms reported by these patients are: fatigue (77%), hand cramps (68%), mental confusion (43%), and anxiety/fear (36%). One third of patients state that they get these symptoms once or twice per week, while only 5% say they rarely or never get these symptoms.

Work and Employment
Having hypoparathyroidism often makes people feel bad frequently enough that nearly 25% say they cannot work and have become unemployed. Of those still working, 72% said they had to change jobs because of concentration abilities or other issues related to symptoms (can’t teach school, can’t drive a truck, etc). 65% of patients say they miss 2 weeks or more of work per year more than they ever did before. One third stated that their employer doesn’t understand their issues and why they are sick on a frequent basis.

Personal Interactions
A minority of patients say their family “understands” how they feel and their family has been great. However, 78% say their family and/or friends “simply don’t get it”. Just over 40% have been put on antidepressants. Two thirds say that hypoparathyroidism and the symptoms it causes have put significant stress on their relationship, with 8% saying this ailment is directly responsible for the breakup of their marriage. Clearly, patients with hypoparathyroidism feel poorly and this puts significant stress on their interactions with others.

Seeing Doctors for Ongoing Care
Less than 10% of all patients with hypoparathyroidism say their disease is managed well enough that they never have to go to the emergency room to receive IV calcium. Almost half of patients make one ER visit per year, while 25% make 3 or more ER visits per year.

Having hypoparathyroidism is associated with a dramatic increase in the number of doctor visits per year. Only 20% said they were not referred to a new doctor to help manage the problem, while 30% said they have 3 or more NEW doctors that they have seen to help manage this problem. Importantly, 61% said that even their endocrinologist doesn’t understand their symptoms fully, and state that their doctor is often more interested in their lab (calcium) values instead of how they actually feel. One third of patients with hypoparathyroidism are now required to see an endocrinologist every 1-2 months, one third see their doctor every 3-5 months, and one third see their doctor every 6-12 months. Two thirds of patients have to get their blood calcium checked every 4 months or less; one third gets their blood tested every month.
--- end cut and pasted 2 ---

so yes you could have a life threatneing condition or debilitating condition.

when you do to the ER be sure to tell them the date of your thyroid surgery and that they took 3 of your parathyroids. along with your symptoms.

so yes go to the ER. especialy if you are haveing as you said "Do you know if it would have anything to do with my hands becoming so twisted and cramped that they lock up!"

Yes it sounds like a major medical issue.

i am posting this without spellchecking it so it gets to you ASAP. thats how important I think it is

Craig

deb deb
Posts: 8
Joined: May 2011

wow... ER said my calcium levels were a little low 8.0 (range 8.2-10.2)but not low enough to require any calcium iv's. My TSH was 17.82 (range 0.34-4.82) said maybe my meds needed to be uped.. and gave me a name of a clinic that is open every other sat. I am a little upset, due to not having insurance and not knowing whats going on with me, i felt like i was not good enough to be seen by a real doctor, They put an IV in me, but never started it, when i spoke up about it, i was told that it was ok, i was a a little dehydraded, but if i went home and started drinking water i should be fine, and the urine labs although high, would work themselves out with more intake of fluids on my part. And, yes there is something going on inside you, but we dont know what it is, you need to find an endco doctor to help you with that CRP 21.3 (range 0.0-9.0). Has anyone ever heard of this test CPR???? Please tell me im not crazy, and this is not the way ER visits are for uninsured???
I was there for 3 hours and there were only two of us in the ER. Yet no one noticed that the iv was never started, heck i didnt even know, although i had one in, it wasnt hooked up. Thanks for all your support! deb

nasher
Posts: 507
Joined: Apr 2010

unfortunatly yes ER visits for uninsured are VERY VERY bad experiances. even people on disability have very bad visits

ok CRP test...
---- WEB MD ----
A C-reactive protein (CRP) test is a blood test that measures the amount of a protein called C-reactive protein in your blood. C-reactive protein measures general levels of inflammation in your body.

High levels of CRP are caused by infections and many long-term diseases. But a CRP test cannot show where the inflammation is located or what is causing it. Other tests are needed to find the cause and location of the inflammation.

Why It Is Done
A C-reactive protein (CRP) test is done to:

Check for infection after surgery. CRP levels normally rise within 2 to 6 hours of surgery and then go down by the third day after surgery. If CRP levels stay elevated 3 days after surgery, an infection may be present.
Identify and keep track of infections and diseases that cause inflammation, such as:
Cancer of the lymph nodes (lymphoma).
Diseases of the immune system, such as lupus.
Painful swelling of the blood vessels in the head and neck (giant cell arteritis).
Painful swelling of the tissues that line the joints (rheumatoid arthritis).
Swelling and bleeding of the intestines (inflammatory bowel disease).
Infection of a bone (osteomyelitis).
Check to see how well treatment is working, such as treatment for cancer or for an infection. CRP levels go up quickly and then become normal quickly if you are responding to treatment measures.
A special type of CRP test, the high-sensitivity CRP test (hs-CRP), may be done to find out if you have an increased chance of having a sudden heart problem, such as a heart attack. Inflammation can damage the inner lining of the arteries and make having a heart attack more likely. But the connection between high CRP levels and heart attack risk is not very well-understood.
----

they checked calcium but did they check vitimin D? (yea i am sure they didn't)

---- http://www.niams.nih.gov/Health_Info/Bone/Bone_Health/Nutrition/ ---
Vitamin D
The body needs vitamin D to absorb calcium. Without enough vitamin D, one can’t form enough of the hormone calcitriol (known as the “active vitamin D”). This in turn leads to insufficient calcium absorption from the diet. In this situation, the body must take calcium from its stores in the skeleton, which weakens existing bone and prevents the formation of strong, new bone.

You can get vitamin D in three ways: through the skin, from the diet, and from supplements. Experts recommend a daily intake of 600 IU (International Units) of vitamin D up to age 70. Men and women over age 70 should increase their uptake to 800 IU daily, which also can be obtained from supplements or vitamin D-rich foods such as egg yolks, sal****er fish, liver, and fortified milk. The Institute of Medicine recommends no more than 4,000 IU per day for adults. However, sometimes doctors prescribe higher doses for people who are deficient in vitamin D.

-----
myself I am on Vitamin D3 4000 ui/day suppliment and that barley keeps me in range.

how much thyroir replacement are you on and is it generic or name brand ... and since they last adjusted your meds have you gained/lost more than 5% of your body weight. I am expecting they never got your relpacement levels right to start with.

just looked at your original post if you see that doctor again... "actually the surgeon told me i didnt even have to see my reg doctor for a few months, and for me not to worry that no-one ever died of thyroid cancer. "

--- from http://www.cancer.org/acs/groups/content/@epidemiologysurveilance/documents/document/acspc-029771.pdf---
on page 3

estimate for 2011 1,740 estimated deaths from thyroid cancer. with 760 men and 980 women

----
curious what was your fT4 level (should have been tested when they tested TSH)

hopefully Somewere on theses posts in the past i have explained labs better but I do not currently have time to check through my posts or repost info on that at the moment... work calls.

please ask any questions you can think of we will try to help guide you so when you have a chance to see a doctor you can maximize the care from the visit.

Craig

deb deb
Posts: 8
Joined: May 2011

they didnt check vit d at all, and TSH was the only thyroid test done, they were not concerned with my low calcium at all, they thought that all my numbess and tingling of hands and legs are due to my thyroid meds not at right dossage, which is currently Levothyroxine 0.125mg. The doc said it probably needed to be higher, and he would call in a rx for 0.175, but if i started feeling heart papitations, i better back off. I picked up my rx and low and behold it was for Levothyroxine 0.125mg... the SAME, guess i dont have to worry about heart papitations now, The whole thing was a waste of time and money. So i guess i grin and bear it... meakes me furious that they really didnt pay attention to me, didnt want to see my reports showing that 3 parathythroids had been removed, and not giving me treatment! I was in the ER right after surgery for same thing and my level was the exact same and they were all over it... of course i had insurance then. When i spoke up and said well what about last time?? He said different doctors have different views and opinions, and he really didnt think i needed anything. I NEED INSURANCE BAD! thanks for checking on me though... down in the dumps, deb

alapah's picture
alapah
Posts: 259
Joined: Oct 2009

Hi Deb,
I just wanted to note that I myself only recently learned that your body can only absorb about 500mg of calcium at a time so if you need to take large daily doses you should split them up and take them throughout the day. Also, don't take calcium within about four hours of your synthroid as it interferes with the absorption of the synthroid.

Jules47's picture
Jules47
Posts: 15
Joined: Jul 2011

Hi Deb.. I'm sorry I'm kind of behind the ball on this and I hope you're calcium levels are getting better. But I wanted to comment on your 8.0 calcium level. ER doctors can tend to be a pain in the you know what when it comes to "normal levels". I don't know if your endo ever told you this, but every body is different when it comes to TSH levels, Calcium levels, etc. Just because you're reading the "normal range"does not mean your body can function on it. I'm not sure if it's possible financially for you to go back.. but if you're still having your hands cramp up and lock up it's very serious for you to get back to that ER and DEMAND a calcium IV. My calcium level was 7.5 one time when I went to the ER to get an IV and the doctor was a complete jerk and made us wait for like 3 hours and wasn't even going to give me the IV because he said I was close to normal. What the HECK does that even mean!?!? lol then he brought in a saline (sugar water) bag and I flipped. Doctors try to take the easy way out sometimes and think their patients are morons and in all actuality we probably know more about our medical problems than they ever will. They wouldn't give me the calcium until I told them my Cleveland Clinic endo was the one who forced me into the emergency room in the first place and I told (well actually I was screaming hysterically because I was so mad and in so much pain, because I too could not move my hands at this point) the ER doc to call my endo if he didn't believe me.

Moral of the story like everyone said.. it's really important to get an calcium IV asap. All the muscles of your body run on calcium. In fact, they can't move without it. And yes that includes the most important muscle, your heart. If you calcium gets too low your heart can just stop. Cardiac arrest. doesn't matter how old you are. I really don't mean to scare you, but maybe you need to just march in that ER and demand to be treated like a human being. It's disgusting to me how you were treated and I'm praying you figure all this out.

As for if you cannot make it to the ER. Tums don't work for me, but you could try those. Or I take calcium supplements (it's all over the counter) so if you wanted you could maybe pick up a bottle of those while you're waiting to get insurance. It would probably help with some of your symptoms. I currently take only 2 pills a day plus vit D. Just be careful because too much calcium can be bad too. It can lead to kidney problems.

deb deb
Posts: 8
Joined: May 2011

Thank you Jules for your help and advise! I think im going to try the county hospital nearby, I have a friend who found out they had skin cancer and i heard they treated him very well, even without insurance. It kills me to read all about this RAI stuff and the gene mutation, even checking out the lymhp nodes, and myself having no knowledge of these treatments, maybe my cancer wasnt bad enough to need further tratment, but then again, this is the doctor who removed parathyroids and never told me... this is what my pathology report said.. papillary carcinoma on right side, and papillary carcinoma, follicular variant on the other.. how do know if u need RAI?? I take it goes by age and size? and one more question... what does this mean " There is Hurthle cell metaplasia in the epithelium??? thanks deb

nasher
Posts: 507
Joined: Apr 2010

I would like to thank

Alapah
3boys_mom
csequera05

for being so quick on the response here

I am hopeing that deb deb made it to the ER safely and I am praying that everything is ok.

that is one thing I love about this site is that if there is an emergency someone normaly quickly responds and gets the problem answered.

Subscribe with RSS
About Cancer Society

The content on this site is for informational purposes only. It is not a substitute for professional medical advice. Do not use this information to diagnose or treat a health problem or disease without consulting with a qualified healthcare provider. Please consult your healthcare provider with any questions or concerns you may have regarding your condition. Use of this online service is subject to the disclaimer and the terms and conditions.

Copyright 2000-2014 © Cancer Survivors Network