Did not know all that.
Can it causes all the symptoms I had listed?
Also, if I had been working out and eating about 60-70% Whole Foods before all this, I played collegiate lacrosse, and softball after college what can I do if those weren’t enough?
I’ll look into hyperplasia. I don’t know much about it.
As for thyroid cancer, I just had an ultrasound Monday of my thyroid and parathyroid that came back normal and no one mentioned any nodules. Would that clear the cancer theory?
I had not scrolled right. Your Calcium goes up and down with the Vitamin D levels. Normal Vitamin D doesn’t change quickly, it’s inert and has to be converted to D 1,25 via PTH. So, when you have Vitamin D available, your body converts it rapidly and your calcium level shoots up. That’s not normal. Your Calcium level should not shoot up over 10 just because you have the available Vitamin D to get it there. Metabolic Syndrome is a loose diagnosis of several symptoms and is applied when they see those symptoms but don’t know what’s wrong with you. It usually is re-diagnosed as something treatable later when they figure out what’s wrong with you. Where are you located?
It doesn’t look like the TRT you’re doing is doing anything… other than one reading your T levels have stayed the same before and after TRT (for the most part), so I don’t personally think you’re taking enough for that to change anything, if that is even the issue (and I’m not saying it is)
I didn’t see insulin on your labs but I am pretty sure it would show high which means you have low insulin sensitivity, high insulin levels and fainting makes total sense to me because high insulin will drive blood glucose down then you feel like fainting, I am not saying that’s it, I am saying it makes sense, best way to see where your insulin is would be labs, anyway the best way to fix MS is:
Eating a well balanced diet, with healthy fats, complex carbs, fibers, and enough protein, no sugar, no processed foods, no sodas, no fruit juices only the whole fruit, a quick search on the net will show you more details
If they saw your parathyroids on an ultrasound (There are 4 of them normally, behind your thyroid gland), that would be a very troubling thing. They should each be the size of a grain of rice, and are not normally detectable except through surgery.
Every testosterone test was done on trough day. Except one where it showed 700s which was 4 days after injection.
I’ve thought that maybe an increase in test would be beneficial but been hesitating since my heart rate is so high (not sure that makes a difference just my thought process).
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I agree the calcium is acting weird and believe it has something to do with my issues.
The thought was my calcium was high bc of vitamin d toxicity but lab values didn’t match up.
I’m located in Virginia.
Also they didn’t see my parathyroid on the ultra sound which is normal from what I was told
Thanks I’ll look into. Basically seems like a healthy lifestyle which I guess is good regardless of the issues.
Also I did have insulin tested. It was 19.4 (range 2.6-24.9)
Hyperparathyroid Hyrperplasia is a super rare condition. It is when multiple or all of you parathyroid glands have grown beyond normal size. They are normal, but big and work too well. Normal hyperparathyroidism involves the growth of a benign tumour on one or more of the glands causing a constant and massive overproduction of parathyroid hormone (PTH). You do not have normal hyperparathyroidism, not with those labs. You might have hyperplasia, which is hell to get diagnosed. Check out parathyroid.com (The Norman Clinic in Tampa runs it), and look up Dr. Larian (In California). These are the two top experts in the field. Your normal endo will likely miss the problem even if you point it out. Mine did. I had to figure it out on my own and pay out of pocket for the surgery. No regrets.
100%
Still in range but not optimal, like the blood glucose they are going up, that’s why it is a good idea to fix it now before becoming diabetic in the long run
@hardartery throughout this year I have been convinced that what ever I’m going through is related to my calcium/vitamin D. Everything I read always comes back to thyroid, parathyroid, of kidneys in one way or another.
I went back and read your previous comments on this thread and was hoping you could provide me some more details on your experience and what you’ve learned. Ive searched that parathyroid website but I hadn’t found anything about parathyroid hyperplasia.
I have a few questions that if you could answer some/all I would be greatly appreciative.
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Could you provide a brief summary of your story? (Symptoms, timeframe of issues to diagnosis, ect.)
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Normal hyperparathyroidism and parathyroid hyperplasia are different?
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Would thyroid cancer show up on ultrasound? (Mine was normal and you had mentioned thyroid cancer)
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What were you lab values? We’re mine similar?
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You had mentioned you felt better after surgery, but do you have to take supplements?
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Did you just send your lab work to the Tampa place and they said they would operate or did you have to go down there?
Thanks in advance.
My initial symptoms were really low Vitamin D on my labs for my physical, and tail bone pain. These are what I was aware of. I was apparently also very short-tempered/impatient, and would get dizzy on and off. The Vitamin d was in spite of the fact that I was in direct sun in Cewntral America 6 hours or so a day with no sun block of any kind. It progressed to being dizzy pretty much all of the time, and getting a blistering headache after 15 minutes in the sun. I was doing stuff in the morning and then retreating to a dark area for the rest of the day. I didn’t want to do anything. I had a spot in my upper back that would not stay adjusted (My wife was literally jumping on it several tinmes a day to put it in place) and then I got a herniated disc in my neck.
The doctors told me to supplement Vitamin D and there was nothing wrong with me. So, on a day that was particularly bad I drove myself to the lab and got tested for whatever looked good on the checklist/menu that they handed me. My calcium was 11.1 with mid-range PTH and just under the reange Vitamin D. I Googled causes for hypercalcemia, and there were only two options. The other labs ruled out Stage 4 cancer, so it had to be some form of hyperparathyroidism.
Normal hyperparathyroidism is a benign tunour on a prarthyroid gland causing it to produce PTH at a retarded rate all of the time, ignoring the normal signalling from your body.
Hypertplasia involves no tumours. It is the continued growth of multiple or (Usually) all of the glands. This is what I had. So, when they kicked on, they made WAY too much PTH and skyrocketed my calcium. Then they would shut off (like they are supposed to) and my calcium would drop to normal or high normal. So, technically, everything was functioning correctly but overdoing it, sort of. WhenI went out in the sun, my vitamin D shot up, and my body burned it off as quickly as possible by converting it to the active form (D 1,25) and sending my calcium through the roof. I was essentially allergic to vitamin D. If I took it in any form as a supplement, I would get a pounding migraine at the back of my head for a day or two.
Theoretically thyroid cancer can cause this, as a very specific region of your thyroid contributes to calcitriol production and maintaing calcium levels. However, if you get that cancer you would likely be dead before anyone figured it out. You would likely already be too riddled with lymph driven cancer that you would know you better get the bucket list done. You almost certainly don’t have it, because you are still getting around and not diagnosed with cancer.
My labs were all over the map. Most of them were top of the range calcium and mid range PTH. I even had a calcium of 9.6 in ther, which is normal. The endo in SC that I dealt with told me that “If” I had hyperparathyroidism it was only a “Mild” case. As if that form of unicorn exists.
Hyperplasia is really, really, really rare. I contacted Norman, sent them my labs, and paid the up front consult fee. My insurance wouldn’t pay, so I ended up paying out of pocket (Blue Cross/Blue Shield can suck it). I had an “EPO”, which I had been lead to believe was a PPO. It didn’t cover anything out of state except an emergency room visit and even that gets an argument sometimes. No one is going to diagnose you with any form of hyperparathyroidism before surgery. They technically can’t prove it without the evidence that’s in you neck. They are making a guess and then exploratory surgery based on the guess. Make sure that whoever you deal with has a practice of always checking all 4 glands if they do surgery. Some surgeons stop at the first one that is off. I had to have 3 1/2 of mine removed. I function on 1/2 of the one on the upper right side. I now tend toward hypocalcemia and have to supplement daily. The alternative was kidney failure and a probablr heart attack (That’s what actually killed Garry Shandling).
Sounds like a pain in the ass to deal with and more of a pain to get it resolved.
I can definitely relate to needing someone walk on back. I always need it cracked and have for a long time.
I know you’re not a doctor but do you think my labs look similar to what yours were or that hyperlasia thing at all?
Also, I’ll try and contact the people at tampa to see if I can email labs and see what they think.
Thanks for the detailed response. I want to provide the information to my doctor but I’m pretty sure he’s going to reject the idea and keep telling me it’s just stress.
Your labs jump up and down way too much. Nobody’s numbers are supposed to swing like that. The thing different is the lows. I don’t think my calcium ever went that low before surgery. Whatever is going on, it is not normal and probably has serious long term consequences. I would not leave it alone. The world literall was brighter when I came out of surgery, and all of my symptoms disappeared. No one will say that the back issue is related, or that my herniated disc was directly related, but anecdotally speaking, they were. I haven’t needed a back adjustment since surgery (2 years =) and the herniated disc “self-corrected” basically immediately.The tail bone pain took a couple of months to go away completely. There are a couple of Facebook groups as well. I’m not on Facebook, but my wife was in them.
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Do you things were because of the Vitamin D supplementation? I mean the swing in lab values seem to correlate with the supplementation.
Or is that still not normal for those swings even with supplementation?
I think that that is a reasonable conclusion. My Vitamin D intake was, and always will be, quite high, just from sun exposure. My old labs always showed Vitamin D way up at or above the top of the range. It was downright bizarre for my D to be low, and the pinhead PA I had (I switched to an actual doctor over it) was insistent that I needed to take a supplement and walk more and all would be right with the world. Even though I was walking roughly 2 miles a day and lifting several times a week in spite of everything. Sometimes you have to investigate and push a little for help, rare stuff is out of the wheelhouse of normal doctors and they can’t be expected to be equipped for something they will nver see more than a maximum of one time ever.
So I contacted the parathyroid group in Tampa
And I’m filling out the new patient stuff:
Does it really cost $1,700 just for them to even review labs?
When you had symptoms did they come and go to different degrees? Or was it always constant same level of symptoms day to day?
I ask bc for me I’ll have a few good days, week then back to square one.
I was up and down. Towards the end, when I went for surgery, it was bad if I got any time in the sun or touched a vitamin d supplement (I had an endo insist on 1000mg a day for a week for a blood test). The prices can jump around, I did not pay that much up front. It depends on your insurance and other things. My out of pocket for the whole thing was about $16k by the time I was done, but that was surgery and everything out of pocket because insurance covered nothing. There are finance options through the hospital as well I think. The best is to get it covered, which you can figure out through your insurance provider in advance. They take insurance, it just depends on if your insurance pays for getting the procedure done there or not.
So I’ve tried upping my dose from but it seems like anything past 120mg/week makes me to “revved” up and not in good way. That feeling last about 2-3 days and usually feel the best the the day or 2 days before it’s time for my next injection. Could that be low SHGB?
I’ve gotten cream recently but haven’t started because I still of vials of Cyp and honestly I’m hesitant on the cream.
Still have a lot of symptoms for the past 2.5 years now and maybe its not all hormone related but I think it’s part of it. Blood work over the years are:
8/23/19 start of issues
WBC: 7.9
HGB: 13.3 (13-17.3) Borderline
HCT: 38.8% (38-52%) Borderline
MCV: 86.8 (84-100)
MCH: 29.8 (27-34)
Potassium: 3.4 (3.5-5.3) LOW
TSH: 3.4
10/4/19
HGB: 13.4 (13-17) Borderline
HCT: 38.4% (37.5 - 51%) Borderline
Albumin: 3.6 (3.5-5.5) Borderline
Calcium: 8.2 (8.7-10.2) LOW
Potassium: 3 (3.5-5.3) LOW
11/27/19 Start to look into hormones as cause of symptoms. After the following blood work I was referred to a urologist
TSH: 1.44 (.45-4.5)
Free T4: 1.29 (.82-1.77)
Total Testosterone: 368 (264-916)
Free Testosterone: 18.1 (9.3-26.5)
Estradiol: 20.9 (7.6-42.6)
Vit D: 19.9 (30-100) LOW
12/13/19 Blood test from urologist are as follows:
RDW: 12.4% (12.3-15.4%) Borderline
FSH: 2.6 (1.5-12.4)
LH: 3.2 (1.7-8.6)
Total Testosterone: 336 (264-916)
Prolactin: 13 (4-15.2)
Estradiol: 7 (7.6-42.6) LOW
Notes: After these results I started clomid. I only took took clomid for about a week then got my PCP to prescribe Test Cyp (100mg/week)
2/5/20 I had been on 100mg/week for a little over a month for these results.
Total Testosterone: 492 (264-916)
Prolactin: 6.2 (4-15.2)
Estradiol: 5.3 (7.6-42) LOW
Vit D: 26.8 LOW
B12: 424 (232-1245)
SHGB: 19.4 (16.5-55) Borderline
Notes: After this test I bumped my dose up to 120mg/wk
3/18/20
Hemoglobin A1c: 5.1%
Total T: 535 (264-916)
Free T: 18.5 (9.3-26.5)
Cortisol: 15.6 (6.2-19.4)
Estradiol: 22.9 (7.6-42)
5/20/20
Cholesterol, total: 245 (100-199) HIGH
Triglycerides: 310 (0-149) HIGH
HDL: 32 (>39) LOW
LDL: 151 (0-99) HIGH
Non-HDL: 213 (0-129) HIGH
Ferritin: 87 (30-400)
TIBC: 416 (250-415) Borderline
Iron: 88 (38-169)
Iron Saturation: 21% (15-55% ) Borderline
Total T: 530 (264-916)
Free T: 18.3 (9.3-26.5)
Estradiol: 28 (8-35)
Hemoglobin A1c: 5.3% (4.8-5.6)
Free T4: 1.49 (.82-1.77)
TSH: 1.9
Free T3: 3.7 (2-4.4)
Prolactin: 19.1 (4-15) HIGH
IGF-1: 264 (98-282) Borderline
TPOab: 8 (0-34)
B12: 339 (232-1245)
PTH: 11 (15-65) LOW
Creatinine Clearance: 139 (97-137) HIGH
7/23/20
Albumin: 5.3 (4.1-5.2) HIGH
A/G Ratio: 2.3 (1.2-2.2) HIGH
Alkaline Phosphatase: 58 (39-117)
AST: 18 (0-40)
ALT: 24 (0-44)
TSH: 3.6 (.45-4.5) Borderline
TIBC: 393 (250-450)
Iron: 77 (38-169)
Iron Saturation: 20% (15-55%) Borderline
Ferritin: 99 (30-400)
Notes: I started taking Iron supplements after this test. I was taking B12, Vitamin D, and Testosterone here.
11/7/20
TIBC: 346 (250-450)
Iron: 71 (38-169)
Iron Saturation: 21% (15-55)
Ferritin: 104 (30-400)
Free T4: 1.3 (.82-1.77)
Free T3: 3.2 (2-4.4)
TSH: 2.2
Prolactin: 12.2 (4-15.3)
Reverse T3: 17.1 (9.2-24)
PTH: 20 (15-65)
Total T: 710 (264-916)
Free T: 26.7 (5-21) HIGH
12/7/20 ZRT Labs
Estradiol: 28 (12-56)
Total T: 400 (400-1200)
SHGB: <15 (15-50) LOW
DHEA-S: 169 (70-325)
TSH: 1.4 (.5-3)
Free T4: .8 (.7-2.5)
Free T3: 2.9 (2.4-4.2)
9/24/21
TSH: 3.1 (.45-4.5) Borderline?
Free T4: 1.24 (.82-1.77)
Free T3: 3.6 (2-4.4)
BUN/Creatinine Ratio: 8 (9-20) LOW
AST: 20 (0-40)
ALT: 33 (0-44)
TIBC: 350 (111-434)
Iron: 50 (38-169) Borderline
Iron Saturation: 14% (15-55%) LOW
Revers T3: 15.2 (9.2-24.1)
Basically I could use y’alls help. It would be kind of nice to not be a shell of who I used to be. I’m not sure hormones is the only thing going on but I’ve had every big test pulled out so I’m left thinking hormones is at least part of the issue.
I have more blood work obviously that you should be able to see if you click on the original post.