As I said in my last post I had stopped all vit d, calcium, lowered b12 to every 3-4 days or so and stopped some other supplements. I got some of my recent blood work back and b12 is pretty high at 2800, my highest so far, last one was 1167 and I was supplementing it every day at 4000mcg then.
So I'm wondering what is going on here. It's still not high enough to be of concern according to my hematologist but a lot higher than before which is odd.
My wbc is still low and mchc is low. Vit d is 27 pth is 67.4 and calcium was 9.3. My last test after increasing vit D was vit D 30, pth 51 and calcium 10. Urine calcium 24 hour was high. I did another 24 hour urine calcium finally last week with a low calcium diet but I don't have the results yet.
I don't have a lot of other results yet but the a1c is up, I expected that since my bg has been really awful, either high for hours or crashing down low with lows coming out of nowhere since my baby boy kitty passed away. It's not horrendous but the highest I've ever had- and I feel awful my bg is sooo bad lately.. but I feel powerless to do anything since it has been so erratic and nothing I do seems to work.. I'm just struggling to have some stability. I think some of the volatility may have to do with levothyroxine but I haven't managed to stop it yet and I wish I had never started it. tsh was 2.5 down from 2.9 in February and I think it was 1.2 in March when the rheumatologist tested me. I think I was on 50mcg then, I can't remember.
I'm still wondering what on earth is going on. I'm very exhausted again and I think it could be something else wrong because I have lost about 10 lbs now over a 3 month period or less maybe.
That could also be from higher blood sugar. I feel like I'm starving all the time, but then when I eat more I have more lows and more extended highs. It is crazy and enough to put me in a looney bin for sure. Yes I am at the point where I want to give up- I'm sick of all the tests, I'm sick of starving to death and I'm sick of everything
Another thing I noticed was t4, not free t4 which isn't back yet is 8. This is the first time my doc tested this one and I'm not sure why that would be done in addition to a free t4- the range is 4.5-11.7 for that one.
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Hello 000ggg, I am probably not going to be much help to you on most of your post, but the one thing that came to mind regarding your calcium levels. Calcium and Mg have quite an intimate relationship in the body, they must balance each other so that might be something worth looking into. Serum Mg tests are not very accurate as serum Mg is tightly controlled and will deplete cell Mg to maintain critical levels. Have a look at Dr Carolyn Dean's website, lots of interesting information on there - it might just help.
thanks jan, I will check out the website. I have osteoporosis and I know magnesium is important. I supplement that. I was just reading more about this at a link I just posted here I think.
Sorry you are having such a bad time, just when you want to have a simple life you are faced with a mountain of research. If you haven't tried transdermal Mg, give it a try, its supposed to have a better absorption rate. I take some K2 as well.
Thanks Jan, I would give anything to have my old life back. I will research the transdermal. I have to ask the hematologist about k2 again. I was taking that with the D.
You and me both 000ggg, it would be just great to be back to normal. I take Mg because I have a deficiency (hair analysis test). I have a reasonable amount of calcium in my diet so I don't want it ending up in the wrong place, the same reason I take K2 as it helps to prevent calcification (along with some fat because K2 is fat soluble).
I hope we both get some relief at least in some way because this is awful. I looked up the PA symptoms and I do have a lot of those so I wonder if I'm not absorbing b12 and have functional b12 issues.
Good idea to add some k2. I eat some cheese every day and sometimes almond milk but otherwise I'm not sure if anything else I eat has much but a little k2 prolly wont hurt. I may ask to get k2 tested.
My second 24 hour urine calcium test came back higher than the first one when I was supplementing calcium still. It was 444 this time. I just wonder if that could be because I ate cheese that day? I only had a small piece. Whereas for the first one I may have had a supplment the day before and some cheese and almond milk and it was lower at 360.
Both times I had high bg during the test so I wonder if that could affect it too. I just wonder why it is necessary to eat a low calcium diet for this test. The lab didn't tell me to do it nor did my doc the first time but he wanted me to redo it with a low calcium diet. And the result was higher which is odd. I guess it has to do with the parathyroid issue.
nothing.. my endo believes it is secondary to primary vit d deficiency- hasn't given me a cause for that, and told me to increase vitamin d- which made me ill and have back pain near my kidneys and have high urine calcium and higher serum calcium so I stopped vit d and calcium completely...
Your Endo is obviously not experienced in PTH disease, many doctors latch onto vitd being the cause of high calcium and PTH which is wrong in the vast majority of cases. You need to get a second opinion from an Endo who has a special interest in parathyroid disease and you need a sestamibi and ultrasound to see if an adenoma can be located.
thanks bantam. I think you told me that before. I have been too exhausted to do that. Also I don't know who to go to in my area who is any good. I'm sick of dealing with all of this and all of these people. My kitty was very ill, I was giving him intensive care at home and now he has passed away. I don't know if I have the energy to go to yet another doc who will tell me I'm crazy or whatever. I know from the norman site that sestamibi scans often miss the tumours. I plan to ask my endo about getting one, but if it's negative endo will just say it's not primary.
I forgot to add that my last calcium is lower in more normal range at 9.3 however I believe that is because I stopped calcium and vit d. And I think since D is low and pth is high again calcium should still be lower than it is if it were really secondary to true vit d deficiency.
If clinical signs and test result indicate the presence of an adenoma a good surgeon experienced in parathyroid surgery will go ahead and operate even if scans are inconclusive, the surgeon I had did just that, he had to hunt around but found it in the end. Finding the right Endo and surgeon can be a challenge but if you do have hpth you do need to get it sorted. Are you in the UK or USA ? your test ranges are not the usual UK ones used.
I'm in the US so that would explain the ranges. problem is I have read posts of people who went to supposed specialists in their area and either had problems or were still told they weren't primary because nothing showed up on scans etc.
My doc said will not do a scan and said again it's secondary and everyone I've talked with , who are patients, are wrong, the Norman site and other surgeons just want to do surgery etc.. It was a very unpleasant visit to say the least. No explanation for why I'm excreting so much calcium other than "some people excrete a lot". I have started reading about it and wonder now if I really need to go to a nephrologist. I said I don't want to take vit D now until I know what is going on here.
The key thing here is that when I took more vit D I had symptoms and calcium went a bit higher. That doesn't suggest vit d deficiency. My doc also disagreed that treating primary with vit d is dangerous and can do kidney damage. Am I in the twilight zone here? I have read numerous sources which say that. My doc did agree to test for functional b12 but neglected to give me the rx to do that so I'm waiting for those. When I questioned why my b2 had jumped from 1100 to 2800 the answer was to go to another lab next time because it must be a mistake... wft??? LOL.. I guess that must mean all my other blood work is inaccurate too. I go to this lab because they are known to be more accurate.
In this docs opinion it is low vit D due to lack of sunshine. I mentioned that my vit D has been dropping since 2012 from 46 or so to 27 now.. with vit d supplementation which doesn't make sense. I haven't had a high rate of sunshine in take for many years due to reacting to the sun and being light sensitive so I doubt that is the cause. I also started going in the sun more the past few weeks or at least after D went low but it has had no effect apparently.
You are in a situation that many hpth patients find themselves in and it's not easy to move it on, I can't really offer any new advice, your only option is to find a doctor who has better knowledge of hpth than your current one.
Thanks Bantam, Yes I think that is the case. It is still not clear to me what is going on with me but I need someone who will not make me feel uncomfortable and who will listen to my thoughts etc. without dismissing them. This doc did say when I pressed that it could be early primary. Did you have surgery eventually? I can't remember what you said about your own situation. I felt like asking if no one who has ever had surgery needed it.. surely that isn't the case. I just wonder if this is the problem what the point of waiting is until you have chronically high calcium and potential damage done. This is exactly what happened to me with D diagnosis.. I didn't get a diagnosis until I was nearly dead in the hospital with serious complications which I was very lucky to survive.
Yes I had surgery, I chose a private Endo who was experienced in hpth but even she was keen to wait and see but I pushed her to refer me to a surgeon and his comment at my first appt with him was " I get so annoyed with endos who don't diagnose and refer for surgery immediately, no point in waiting" There must be many people who never get a proper diagnosis and treatment, they are just left to cope with the symptoms and complications. I think with many medical problems we have to do our own research and work out what's wrong, the issue comes when we need help with the next step and can't get it. Don't give up, have as many blood tests done as you can and hopefully the doctor will eventually have to admit there is a problem that is not going away and it must be fixed. Good luck.
Thanks Bantam, I will hopefully be getting tested for functional b12 deficiency soon and I plan to go to a nephrologist. It's not clear to me I have primary hyperpt and I don't want surgery. I just want to figure out what is causing this. Right now I'm dealing with another crisis non health related and I'm too exhausted to even think much about all of this. I'm curious to know if you had many high calcium numbers like in the 10's and above leading up to your surgery?
Yes I guess I will have to at some point if it turns out to be that. But so far I have only had one high calcium and the high urine calcium can be caused by other things. I wish the scan would definitely show if there is an adenoma but my doc won't even rx for that at this point anyway. I guess I have seen too many errors in medicine to really believe anything anyone tells me anymore.
I think the ranges are in my other posts.. upper calcium end is 10.3, pth is 15-65. I was supplementing 4000 iu daily when pth went high, vit d low in february and told to increase to 6000. when I did that I had back pain, headaches, more fatigue and urination, terrible blood sugar, so I stopped vit d and calcium due to maybe having primary hyperparathyroidism. I'm very hesitant to supplement either of them again until there is a definite cause indicated for all of this.
Maybe worth sticking with 4,000iu D3 if you tolerated that.
High calcium and high PTH indicates primary hyperparathyroidism. Yours appears to be mildly hyper which may not require treatment yet but requires monitoring.
yes, it could be starting out which is what someone told me at the norman center. But someone else said they had numbers like mine and had an adenoma or 2 removed. I think my endo will keep monitoring it, I hope. But how long am I expected to go on with no real cause for all of this? I already had one high calcium without having low vitamin d or high pth when this all started out. I was supplementing both then and my pth still went up and d low so none of this makes sense. If you have primary hyper pt supplementing either is dangerous. It can cause high calcium, kidney stones, kidney damage and more.
If it's not primary and I don't have an adenoma I wonder if the supplementation alone caused this.. calcium and d causing high pth and low d as the body tried to lower calcium levels.
I'm confused why anyone would supplement calcium unless it is deficient. PTH rises to stimulate calcium levels. Surely supplementing calcium would cause PTH to drop?
Well, the whole theory with primary hyperparathyroidism is the body is lowering vit D due to a tumor causing a rise in pth which will take calcium from the bones and raise calcium serum levels. So the body lowers vitamin D to lower calcium levels. If it is really true Vit D deficiency your calcium should be lower. It is pretty confusing to me but I think I understand it to a degree. I started calcium when I went into early meno when a doc told me to. Then I stopped it when I was diagnosed with Hashis and then I started it 2-3 x per week again recently due to osteoporosis and thinking I may not be getting enough in diet. Now I've stopped completely.
So in short if you have primary hyper pt supplementing calcium and or vit D will cause higher calcium levels and is dangerous
Can only comment on the B12 - there is no upper limit on B12 to worry about - upper ranges quoted in test results tend to be the limits of the machinery to measure concentrations of B12 accurately.
However, there is a possibility of Functional B12 deficiency - some people have an auto-immune response to high levels of B12 in the blood - one study implied that it could be as much as 40% of the population - they create a protein which binds to the B12 in blood preventing it from passing through to cells where it is needed - so all the clinical signs of B12 deficiency without the normal measure giving any indication of anything wrong.
Couple of tests that look at by-products that build up because the body can't recycle them if it doesn't have enough B12 - MMA (best done as a urine test as ratios to other products such as creatinine can immediately clarify if there is anything else going on) and homocysteine - both will be elevated if there is a functional B12 deficiency.
As folate is also needed low folate levels would also cause raised levels ... and with MMA there are a number of conditions that can cause raised levels - hence looking at the urine test.
Bizarrely and counter-intuitively the way to treat a functional B12 deficiency appears to be more B12 until the levels get up to a point where the body can't actually create enough protein to bind it all in the blood. This is probably because waiting for all of the B12 to clear your system (which would probably mean it being removed by the kidneys and passing out of your body in Urine) would leave you functionally deficient and very ill for a very long time.
This article gives a bit of information about functional B12 deficiency but from the angle of using high levels of B12 in blood as an early identifier of other problems.
Thanks. I have a terrible headache now but I will read this later and reply more and ask my doc about this. My hematologist said at very high levels it can be sign of various diseases. I will ask him about this too. .
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