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Hyperparathyroidism and HypoT

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.
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Avatar universal
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
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Avatar universal
A related discussion, Myxedema Coma was started.
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A related discussion, Myxedema Coma was started.
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A related discussion, Myxedema Coma was started.
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A related discussion, Myxedema Coma was started.
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696393 tn?1254429207
A related discussion, This Dr. Norman in Florida for parathyroid disease was started.
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Avatar universal
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!
Helpful - 0
Avatar universal
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
Helpful - 0
Avatar universal
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
Helpful - 0
Avatar universal
I always understood that ionized calcium was key.  You know you can get your own tests at www.****.com ?
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Avatar universal
Have you considered just going to see him.  He will do the proper scan and tests.
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Avatar universal
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
Helpful - 0
Avatar universal
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.
Helpful - 0
Avatar universal
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
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Avatar universal
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.
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Avatar universal
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
Helpful - 0
Avatar universal
Your next step should be a sestimibi scan.
Helpful - 0
Avatar universal
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.
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Avatar universal
In my experience, high blood calcium makes you feel awful, just awful.
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Avatar universal
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
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Avatar universal
My calcium came back for years, right at the top of the range or just a little over.
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Avatar universal
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.  
Helpful - 0
Avatar universal
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.
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Avatar universal
I ask because my BP became uncontrollable prior to parathyroid surgery.
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