parathyroid failure after 3 years post TT?

[LLV123]

Hi, I had TT 3 years ago, had 1 para removed accidentally, 1 re implanted, 2 were "fine" Had low Ca post TT for a few months, then ok. 3 years later, had low ionized Ca had infusions for 3 days of IV CA. Serum was ok, not high but low 8's. My endo put me on Calcitriol and said para's are failing. NO WAY!! I showed blood work "pre"  TT and Ca was 8.4 so run lowish. Took Calcitriol for 3 days, asked endo if I could try OTC to raise it, didn't like the Calciriol...he let me try. Ca levels now last 3 weeks, 9.1, 8.5, 8.8. This is on 3,000 oscal, and 2,000 D. he agreed doing good.
Now, my question....IF I had HPT, would I be able to keep my Ca levels in this normal range by myself with OTC Ca and D? OR IF I had HPT, my levels would go down and not stay stable? OR is is "artificially raised" due to so much CA? I am looking for some reassurance here, that I DO NOT have HPT, and that IF I did, my levels would not be this good....so I don't have it.
I just don't get all of this....am I way off base here? I am hoping for answer that my para's seem to be working, of course!!
Thank you for your time,
Sincerely,
Lori

[redheadaussie]

Hi Lori, You are very welcome!
I am now down to 1800mgs a day. This seems to be the ideal at the moment. I have gone back to eating cheese, which seems to help too.
I stay on 2,000iu of VitD3 even though the doc says to drop it to 1,000. I did so and noticed my calcium dropped significantly, so went back up. I am in the upper range of normal, and get tested fairly regularly so to keep an eye on it.

Even though I live in Australia, it is amazing how many of us are low in VitD!

Cheers!
Maria

[LLV123]

Thanks for your input. My D levels have been low, too. Hopefully the 2,000D daily will help that. I did have the PTH test in the hospital, but it was while I was on IV calcium and fluids, so I don't know if that interefered or not, actually I hope it did, because the level of PTH was low at 16.ugh. About 9 months ago, when it was checked, it was 25, that was better!! How much calcium do you take a day? I have been on 3,000mg, but starting today. get to go down to 2,500. Hopefully I do ok on that dose, Do not want to end up back in the hospital!!
Thanks again for your advice!!
Hope you keep on improving!!
Lori

[redheadaussie]

I too, am at the (nearly) 3 year mark and still have issues with my parathyroid glands. They say they weren't damaged yet they can't see them on an ultrasound I had recently!
My Vit D levels were always off anyway. So started taking Vit D3. BIG change! Also my calcium levels were always low, even hogging two tubs of yoghurt, a ton of cheese and drinking milk! I think my paras were a little sick before the TT and you might find yours were too.
Also it is important to take Calcium Citrate, not Calcium Carbonate. Most OTC are carbonate. There is a huge difference in how the body deals with each of them!

It could well be that your paras are now going into a kind of 'shock' It does take a long time for them to recover and the same can be said for you, since you had one replanted.
The only way to tell is to ask for a parathyroid hormone test. Mine was totally low for two years and after 3 years of taking the VitD3 and the CC, have only just recently started to come back to the land of the living. I am able to drop down one calcium capsule a day and still have just over the lower limit of corrected calcium levels in the blood.

A good site to get the info you require is parathyroid.com     It is a fantastic site and one I re-read often.

Cheers!

[LLV123]

Thanks for the advice. Don't ever want a huge kidney stone again, took 3 procedures and a month to pass it.....ouch. I have not had constipation issues.....ok so far. My doc would only let me lower it by 500mg daily, hopefully eventually I will be able to get more Ca from my diet....more naturally. I also do use Tums for one of the doses of 1,000mg. per day, I didn't know they absorbed better, maybe I should use 2,000 per day of the Tums. I have been taking 3,000mg per day of oscal . Do you supplement by diet only? That would be great. Do you take Calcitriol? I was on it for 4 days and hated it. Drier eyes and drier mouth {already had RA-I damage} flushed, and nauseated.. That's what scares me...your last comment,"then the hell began" This is ridiculous how complicated it all is, I hate it. Confusing because I was fine for three years, now all the calcium issues three years later, doesn't make sense to me!!
I hope you are doing better,
take care,
Lori

[logansrun]

Hello, If you want to keep your calcium levels up on your own, you should be getting it through your diet. Foods that are Calcium rich. A lot of dairy, cheese,milk, yogurt (watch out for the carbs they make you fatter). But the tricky part is (without getting fat) getting your body to absorb it. Do it through diet cut back your calcium supplements. If this doesn't work you will know by the numbness and tingling in your body ( i assume you have felt the effects of low calcium before).
Watch out for the calcium pills....they calcify in your body because we take so much....kidney stones....are you not constipated all the time for the supplements??? ******** out rocks every day is not fun, stool softenters, laxatives..
And eat Tums EX more, they absorb better into your system and quicker and they don't do as much damage as supplements.

Just my opinion on what worked for me. They damaged my Parathyroids after the surgery (total thyroidectomy).. I too had the para hormone showing up, but then it fish tailed and they were dead...and the hell began!!!
Suzanne

[stella5349]

...... are you sure you don't have MORE issues with the other parathyroids? Like a tumor there?

[stella5349]

Lori - I saw a similiar post that you made and commented on that. Also Medicmommy has something on parathyroid today up on the top of the board with the Vit D information w/ parathyroid - that I also commented on too.

Take a look at the effects of the Vit D research lately out there.

I also feel the same way Laura does on now after 3 years they are whacking out. Calcium is an immediate response especially after surgery so if you had permanent damage done - it wouldn't take 3 years to come to a head!

[LLV123]

Thank you, Laura
I am having calcium blood work 1x weekly. I am concerned about the high amount, as I already had a 10mm kidney stone....DO NOT want to do that ever again!! I don't know of any parathyroid specialists.......
Thanks again,
Lori

[laura1967]

Hmmmm interesting that 3 yrs after your surgery that they are now not up to par. Especially since you had damage done during your surgery. This may be long term affect of the damage done...you never know.
I would think that as long as you are willing to supplement high dosage and your Dr keeps a close eye on your levels, then keep doing what your doing. BUT you have to keep a very close eye on yourself.....have you looked for a parathyroid specialist to go and talk to?