Hyperparathyroidism and HypoT

[sophie50]

I have positive TPO and TGab.  I take Synthroid 62.5 and Cytomel 5mcg daily.  My latest TSH was 0.02 but my FT4 fell to .84 (.58-1.64) and my FT3 is 3.5 (2.3-4.2).  I still feel SO tired and my moods are awful.  My Endo has already tweaked my Synthroid down due to the low TSH even though I am taking Cytomel (which I THOUGHT?? negated the TSH reading).  My PTH is normal at 27 but my serum calcium has been in the 10-10.2 range and my ionized calcium came back high at 1.35 (1.17-1.32).  My Vitamin D is also low between 20-35.  I do not take any Calcium supplements. I am really suffering from hip and thigh bone/muscle pain and feel old before my time.    Any idea what could be causing this?  Thank you.

[Mark Lupo, M.D.]

This looks like hyperparathyroidism - would consider repeating the PTH/Calcium levels to confirm as a PTH of 27 is tough to interpret as it is a little lower than typically seen with "inappropriately normal" PTH.  A low 25-OH-Vit D is seen in primary hyperparathyroidism and often leads to diagnostic confusion.  

A low TSH is still important - even on T3 treatment - either the T4 or the T3 dose needs to be lowered given a TSH this suppressed.

[sophie50]

I was given Vitamin D 50,000IU to take once a week in the hopes of raising the Vitamin D.  I have not taken it because I do not want to raise the calcium level any higher.  Will the Vitamin D supplement raise the calcium level? Does a high calcium level cause bone and/or muscle pain?  What would possibly cause high ionized calcium with normal PTH but low Vitamin D?  Something is just not adding up.  PLEASE would you let me know if I should pursue any of this?  THANK YOU!

[sophie50]

I AM A PEST AND I KNOW IT!

I will see my Endo tomorrow and I hope he doesn't make light of my symptoms!  I have 11 of the 16 symptoms of hyperparathyroidism.  Oh after all these years, I hope and pray to get some answers!

I really would appreciate your input on this, Dr. Lupo

[sophie50]

I had the Serum Calcium repeated.  It came back higher at 10.3.  This is the cut off for normal.  My doc says he will not even consider hyperparathyroidism because the PTH and serum calcium are normal.  All other tests were normal. He also said ionized calcium is unreliable.

He lowered the Synthroid.  I guess I have hit a roadblock unless the calcium goes higher.  Is there anything I can watch for other than this bone pain I have now to allow further investigation? Thank you.

[Mark Lupo, M.D.]

At this point - just watching the calcium.  Vitamin D may help the bone pain, but could increase the calcium -- this is a tough place as the diagnosis is not clear.

[val1198]

I had calcium at the top of the range or just slightly over.  PTH was within normal range.  Endos have a chart where they can graph your calcium and PTH.

I spent 14 years in parathyroid hell (diagnosed and treated for ankylosing spondylitis).  I had bone pain, weakness, anxiety, lack of concentration, etc.  By the time of diagnosis, I had significant bone loss.  Finally, a sestimbi scan showed the parathyroid adenoma.

Had it surgically removed and life was significantly improved.

Suggestions:
1) Have your endo graph your PTH and calcium on the chart he/she should have.
2) Get a DEXA bone scan
3) Get a sestimibi scan.

Don't let this go on so long that you have bone loss.

Val

[sophie50]

I will work on that.  It is VERY difficult to ask for tests when the Endo is adamant that there is no parathyroid disease.  I also have bone pain, muscle pain, weakness, anxiety, lack of concentration, irritability, wake up at night....just feel lousy!  I don't want to leave this Endo as he was the one that started me on HypoT treatment because he found positive TPO and TGab.  I really want to develop a relationship with ONE doctor!  My previous GP put me on antidepressants and said nothing else was wrong!  Maybe I will ask my new GP (who referred me to this Endo) about the Dexa Scan.  I had a drug store wrist test which showed osteopenia but I don't know how reliable they are.  Years ago I had a Dexa Scan which was normal but I cannot get hold of the records and, at that time, I was not knowledgeable to obtain copies of everything as I do now.

Thank you for your support!  Sophie

[sophie50]

I have such bad pain in my hips and there is NO ONE who is listening!  What can I do?  I cannot believe that I am supposed to wait around for another two months to have my calcium levels checked again!  This is ludicrous!  MRI showed NOTHING! What could possibly be causing this (and NO...It is not in my head....I am walking like the wounded!)

[sophie50]

OK So sorry for the "pity party"!  What was I thinking?  I will take the Vitamin D (but no Calcium supplements)  in the hopes of diminishing the bone pain and I noticed my Endo requested a chem profile right before my next visit in 2 months.  Is that timing ok or should I ask the calcium to be checked sooner? How long would it take to develop kidney stones?  ALSO, do you consider ionized calcium to be an unreliable test? Thank you!  Sophie

I also have a lot of bone loss in my jaw.  Could this be from the lack of Vitamin D or possibly an early indicator of osteoporosis?

[val1198]

You need to ask for a DEXA and sestimibi.  Only YOU can advocate for yourself.

I had bone loss in my jaw 14, high calcium, bone pain for 14 years before diagnosis.  I'd been treated for ankylosing spondylitis (never had it).  An astute rheumy picked up the HPT.  By then, I had osteoporosis.

I think it usually takes many years of high calcium before developing kidney stones (unless you are prone to them).

Don't let them rob you of quality of life and freedom from pain.

Don't let them throw anti-depressants at you.

Val

[sophie50]

My doctor agreed that the calcium should be checked and watched.

I had a repeat calcium test done last week and the result came back at 5.3 (8.5-10.2).  They couldn't believe it so had it repeated.  Same result. PTH @ 20.6 (12-65).  Had to go for STAT EKG.  Have since had levels checked again and result was 9.7 (8.5-10.2).  I will have another blood draw tomorrow morning along with cortisol test.  If calcium is high, they will do PTH.  I'm not sure what is going on but something is not right.  Potassium was also low 3.3 (3.5-5.2).  Where should I go from here?

[val1198]

How is your blood pressure?

[sophie50]

Well when I got to the ER it was 172/97.  After I laid there for 6 hours it ws 129/79.  It was always low for years....always 105/65 or around there but my last couple of doctor visits it seems to be creeping up 135/85...around there.  They say it is anxiety and that is what the ER said as well.  Why do you ask that?  I thought maybe it is because I am 50 now.  Thanks Val, Sophie

[val1198]

I ask because my BP became uncontrollable prior to parathyroid surgery.

[val1198]

If you BP continues to elevate, especially with low potassium, you should get your aldosterone and renin checked (blood test).  High BP and low potassium can be indicative of primary aldosteronism.  Additionally, I read a study on Pubmed that excess aldosterone can suppress the calcium test results.  It took 14 years for me to get the HPT diagnosis.

I've had both.  I had HPT surgery and now have PA.

[sophie50]

My calcium came back again last week at 10.3 (8.5-10.3).  Since this was in the "NORMAL" range, they didn't bother to test the PTH!  

My 8am cortisol came back at 22.1 (4.3-22.4).  It seems at the high end to me but again normal.

I'm just not sure where to turn next other than I KNOW there is an issue that needs to be addressed.  

[val1198]

My calcium came back for years, right at the top of the range or just a little over.

[sophie50]

I had the doctor chart the levels of calcium and PTH.  They are just slightly out of the normal are but not in the hPTH level!  Basically in no man's land!   I got the doctor to agree to a DEXA scan which I had yesterday.  If it comes back normal, I will have a better feeling that the cause of my bone pain and anxiety is not hPTH.  If it comes back with either osteopenia or osteoporosis, I guess I will have more ammunition for my case.  I am seeing a doctor who specializes in hPTH next week.  I hope I don't just get brushed off. My GP agreed to refer me even though she now believes I am dwelling too much on the issue. I feel crappy, therefore I am anxious about it all! I wish there was some way to just be able to forget about it all for a while. Easier said than done.  Thanks for your help.  S

[val1198]

In my experience, high blood calcium makes you feel awful, just awful.

[sophie50]

Well the calcium is still at 10.3.  I had the DXA scan done and all is normal in the hips and even the spine. T score -0.5  I will see this week what the parathyroid doctor has to say although I will probably hit a dead end.

Since my doctor says a lot of people live quite happily with their calcium level in the 10's and not to believe everything I read about humans being happier in the 9's (parathyroid.com).  Would you, Dr. Lupo, be able to tell me approx. what percentage of people have a high calcium level and feel great?  I would leave this alone but I just feel awful and can't find a reason for it...........Thank you.

[val1198]

Your next step should be a sestimibi scan.

[sophie50]

I saw the specialist.  My calcium and PTH were checked again.  Calcium 9.9 and PTH 27.  Since they are normal, I was told a sestimibi scan could not be done at this time.  The doctor agreed that since levels fluctuate, they would be tested again....but not for 2 months.  So like I thought, a dead end again.  Just live with whatever it is!  Thank you for all your help! Sophie

[val1198]

Sounds like what I went through - for 14 years, and 14 years lost with my young children.  I am very angry about what hapened to me.

[sophie50]

Val, Can you tell me where your calcium and PTH levels were?  My highest calcium is 10.3 (a few times) but PTH only 27.  I wish I could find the literature saying PTH should be down below 10? when calcium is high.  Any info you could give me, to help my cause, would be great!  I know there is a problem....I am just having such a hard time trying to identify it!

Also the massive amounts of ibuprofen I am taking for the hip pain are not helping.  There is nothing showing on the MRI or xrays so I don't have much of an argument to try and ask for some stronger pain relief!  I am just at a loss and so tired of being tired!  I am just not sure which way to turn anymore.  I am always waiting from one month to the next it seems!  And now to wait two more months until the calcium/PTH is tested again just means two more months of misery for me (and my family).  As much as I try to ignore it, it just won't go away!  Sophie

[val1198]

Sophie, I understand you're juat about out of your mind with this.  I suggest you go to www.pharathyroid.com and send a message to Dr. Norman.  I was going to go to him for the surgery but in the end, they had fooled around with me so much that I was too weak to travel.  Good luck.

[sophie50]

I have already sent a message and he said "we humans do not, in general,  like living with calcium in the 10's. You need PTH checked SEVERAL more times as well as serum calcium and ionized calcium.   GET MORE LABS.  You may not have Hpth but it is NOT a certainty at this time".

He also said ionized calcium is absolutely THE MOST IMPORTANT lab test.  My ionized calcium was high. 1.35 (1.23-1.32) but I had asked the receptionist to add this and the Endo said no more as it is unreliable. At least I managed one!

Sophie

[val1198]

Have you considered just going to see him.  He will do the proper scan and tests.

[val1198]

I always understood that ionized calcium was key.  You know you can get your own tests at www.****.com ?

[sophie50]

Hi Val,  I must say that I really do appreciate your responses!  

I do not want to make the trek to see Dr. N because this MAY not be the problem BUT IF this IS the problem, I need to know that for sure first.  I just could not afford to get there and be turned down (both physically and emotionally).

Yes, I have already paid for quite a few blood tests on my own.  It is what started the whole ball rolling and what clinched the deal for finding and dealing with the HypoT and the Hashimotos. I was seeing a different GP whom I stopped going to because he just kept upping my antidepressant.  It is a shame, a darn shame, because I have great insurance and when I KNOW there is a problem and I keep being put off....then it is me that ends up paying for tests.  When I am right, I still cannot get reimbursement or even an "I'm sorry, we should have checked that".  Instead I am looked at as a hypochondriac.

I have had other issues like this in the past.  Three different times already in my life when I knew there was a problem only to be put off numerous times.  Each time I have had to fight and be persistant and...each time I was correct.  That is a HORRIBLE thing to be proud of!  I guess I just don't know how to address things properly at the doctor's office! I wonder how many men get offered anti depressants!!

I will go to my GP this week.  I really need something to help with the bone pain and the tight muscles!  Ibuprofen is not working for me.  The more I try to stretch and exercise, the worse it is getting!  I am sleeping all afternoon and my family is just not happy!  I am just so tired!  Every time I go to the doctor, I have gained a couple more pounds!

I WAS under the impression that ionized calcium is important.  Apparently numerous things can alter the result?  So they are just testing calcium and PTH.  Since my PTH is 27, they are not at all concerned.  They did say that levels do fluctuate with both PTH and Ca.  So they will wait 2 months and test again.

I am just tired.  Tired of trying to get help and/or figure this out.  Sometimes I feel like just slinking down into a corner and giving up!  Then I get mad.  It's a vicious circle.   I am, unfortunately, at the ready to give up stage again. Thank you for caring and sorry for such a long winded post!  I really do appreciate you writing to me and if anything comes of my appointment, I will let you know. Maybe the doctor will just up the antidepressants once again!  Sophie

[sophie50]

PLEASE would you tell me where you would expect to see PTH when calcium is 10.3 (8.5-10.2).  I know the range is 12-88 but I have "heard" that PTH should be almost non existant.  I am 50. What kind of a ball park range is "non existant"?  

Also have you EVER heard of a parathyroid adenoma at the carotid bifurcation?  

Thank you, in advance, for taking the time to reply.

Sophie

[sophie50]

PLEASE would you let me know where you would want the PTH level to sit with a high calcium level (my post from Apr. 29).

Also I have one small hypoechoic nodule measuring 4x4x6mm.  What is the time frame for rechecking this and what is the meaning of "hypoechoic?  I saw in another post that you suggested FNA for a .7cm nodule and I was told nothing under 1cm is checked???

Thank you!

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