TRT / Anemia - Ongoing Issues

Oh yeah, within 3 weeks I was starting to feel better. It took me longer to realize the iron deficiency was caused by a lack of vitamin C (vitamin C = iron absorption) in my diet and therefore was able to cease iron supplementation altogether.

So, I’m going to point out a few things here. Your Calcium is too high, and your PTH is simultaneously too low. I don’t know what endo you went to, but go to a different one. If he thinks that that Cholesterol is “Alarmingly high” and didn’t notice the Calcium/PTH numbers, and rising Calcium coinciding with rising Vitamin D, then he is not qualified to treat you. You clearly have some form of mild anemia, which isn’t too shocking. Your blood pressure is running a little high. You know what has a huge impact on that? Calcium levels. In either direction. Low or high both cause blood pressure issues and will lead to elevated RHR. Find an endo that knows something about Parathyroid Glands, and also Thyroid. You have a serious issue to be running a calcium level that high with a PTH that low, and a calcium level that high shouldn’t happen across multiple tests past your early twenties. My prediction is that your test level is having zero impact on that and will continue to have zero impact at a different dose.

@hardartery I’ve actually mentioned the calcium to several of the doctors I’ve seen. They if it was cancer then the calcium would be higher and it’s not concerning. I am taking a vitamin D shop but actual vitamin d levels aren’t toxic and wouldn’t think that would cause the elevated calcium. The thought was parathyroid originally but obviously the PTH is low.

Any idea what might be causing the calcium issues?

I didn’t see any calcitriol numbers. Your calcium has been everywhere from 8.2 to 10.6, that is very not normal. People do not vary that much normally. Your calcium varies with PTH and vitamin d availability and to a lesser degree by calcitriol from the thyroid. I had Hyperparathyroid Hyperplasia, which is multiple oversize parathryoid glands. In my case, all of them, so now I have half a parathyroid gland post surgery and a permanent calcium supplementation. My calcium rollercoasters with vitamin D, the less D I have the more calcium I have to take. Before surgery it was a rollercoaster too, but it ran high with normal D and no calcium supplement. You do not have normal hyperparathyroidism - which is a benign growth on one or more parathyroid glands (Your PTH would be nuts at all times with that). Personally, I would be concerned with early thyroid cancer or early parathyroid hyperplasia. Good luck getting help with parathyroid hyperplasia, no one is going to diagnose it without surgery and you won’t talk them into surgery without worse numbers.

@hardartery Thank you for this information.

I have done more research this year than the average person should as I knew with no history or family history of anxiety that that wasn’t the cause of all this.

I’m currently treating the mild anemia but do plan to meet with someone who can provide more information on it.

As for the calcium, the two times the numbers were low was when I fainted and when I came to I sweated buckets which assumed that’s why it was low. However, it has always been elevated and more recently high, which I knew based on research shouldn’t happen hence why we tested for hyperparathyroid which as you said was not the issue.

The only other reasons I have founder this to be elevated is high vitamin D (I take 5,000IU/day and it’s still on the lower end so this isn’t it in my mind), hyperthyroidism (test confirmed this was not the issues), and cancer. What’s strange is all my other blood levels are somewhat normal and do not indicate cancer from my understanding. I could just be ignorant to this as I’ve tried staying away from reading too much on cancer. And if it was thyroid cancer wouldn’t my thyroid numbers indicate that?

I have never heard of parathyroid hyperplasia. But worth learning about, before surgery, what symptoms did you have? Were they received after surgery?

Thanks in advance! I’m in desperation mode trying to find answers.

@hardartery also I am on a calcium channel blocker for my blood pressure. Do you think that could have anything to do with the calcium numbers?

So, no. Not necessarily. It would be a rare and specific kind, and unlikely.
High gradually got intolerant of the sun. I was extremely irritable, had weird pains (My tailbone hurt pretty much all of the time and I herniated a disc in my neck without explanation, and was canstantly needing my upper back adjusted) and really just wanted to be alone in a dark room when it got really bad. My Calcium went up and down with my vitamin D exposure, and I was intolerant of vitamin D supplements while having low vitamin D. My calcium could go from 9.0 to 11.1 without a lot of explanation and my blood pressure goes up whenever I am at either end of the range. I was told I was fine, but I ran my own bloods and knew something was up. Eventually had to pay out of pocket at the Norman Center and got surgery.
It was like I had been living in a darkened room and now someone had turned on the lights when I came out of surgery. The whole world was literally brighter and I wasn’t constantly pissed off. The herniated disc was self-resolved in under a week and I haven’t needed a back adjustment since surgery - over two years now. The tail bone quit hurting after a month or so. I still have elevated blood pressure that changes with my calcium level (Which is affected by a lot of things now - including working out), but I had no idea how lousy I felt until I didn’t feel that way anymore. And calcium channel blockers didn’t have any impact at all on my calcium levels.
Side note: HZTZ is supposed to be somewhat effective in controlling the calcium levels and has been explored as a therapy. It doesn’t fix the problem but can maybe help manage it.

@hardartery whoa that’s interesting about the back and sun exposure. I constantly have to roll out my upper back or have my wife walk on it bc it’s always aching. And for the sun exposure I can’t tolerate it as well lately which is weird bc I’ve always been outside type of person fishing with my shirt off and loving it but just can’t tolerate it much now.

And I have flare ups when I just want to be alone myself but that’s bc the brain fog and anxiety I think which could be a seperate issue maybe the anemia thing.

None of it makes sense, and being told I have anxiety is why I have done my own research too bc I’ve never had it and there’s to many blood values off.

What was your PTH levels? And where is the place that you had surgery located?

Thanks again for this info man it’s helpful.

Sorry for the delay, been running around today. I went to the Norman Parathyroid Center in Tampa, although I think Dr Larian in California is probably better and less used car salesman. I was screwed up, and running downhill. If I got a lot of sun or took Vitamin D (I tried 2000 mg a day at the behest of an endo a month before the surgery - I had a pounding headache the whole week I took it without letup) my PTH was upper normal but my calcium would be above 10. I usually live in Central America, and 6 hours of sun a day there put my calcium at 11.1, which was the lab I needed to get someone to do surgery. They try all kinds of things - Sestimibi Scan, sonogram, MRI - nothing showed anything. They were expecting a single benign growth but found 4 marbles. The glands are supposed to be the size of a grain of rice. I was told that “If” I was hyperparathyroid it was “Mild”. That still triggers me. There’s no such thing as mild, it’s like saying you have mild decapitation. I couldn’t think, I hated everyone, and was usually ready to kill someone. If you can take it, cranking the vitamon D and being outside for a few weeks will drive your numbers sky high if that’s your problem. I hardens all of your soft tissues and organs with calcium while leeching it from your bones and giving you osteoporosis. The 24 hr urine is usually done to look for it, as you should be pissing out a lot of calcium, but if you aren’t getting vitamin D when you do the test it won’t show that. You have to have vitamin D for the whole process, so it’s like throwing gas on a fire if that’s your issue.
As I think about it, it also was giving me wicked acid reflux towards the end. I was eating omeprozole every day to try and deal with it.

@hardartery No problem man I just appreciate the insight. I’m glad you got this resolved despite what doctors say. I’ve found out first hand that doctors are quick to dismiss shit.

I’ve actually been on Vitamin D3 5000IU for probably 7-8 months and bloods don’t show the dramatic increase you had. Plus I’ve been in the sun everyday and will have more bloods done by another doctor here in a week for confirmation. However since my PTH is low I’m thinking I don’t have the same issue you had but I do plan on pressing the doctor to investigate the calcium levels and anemia. The only other diagnosis for the high calcium and low PTH is malignancy from what I read so we will see.

Thanks again for the help.

Apologies in advance for the long post. It’s been a complicated year. I’ve done more research than I care to admit but I’m just spinning my wheels at this point so here I am & I’m pretty sure y’all aren’t doctors but from the threads I’ve read y’all are the ones who seem knowledgeable on things some doctors miss so any advice is greatly appreciated.
@dextermorgan @systemlord @darthmason @hardartery @dbossa @highpull @studhammer @NH_Watts @charlie12 @hrdlvn and anyone else who might know something.

Age/Bodyweight/Misc.:
29YO, Male
175lbs, ~23% Body Fat
No Alcohol (maybe 1-2 liquor drinks a year)
Smoked weed daily until 25 but 26 and up just occasional when stressed but have stopped completely trying to figure this out.

Summary:
Back in June 2020 I noticed I would get a briefly lightheaded while playing softball after work. This happened around 4-5 different times. Chalked it up to low sugar and just sipped a gatorade. Then mid August of 2020 after the gym, while grocery shopping with my wife (who is an ICU nurse) I almost fainted (this was more intense than the spells I had during softball) & had to go lay in the truck while she finished shopping. I was fasting so I just thought low blood sugar again. Then a week later August 23rd 2020, we were at the beach with some friends (all of which are in the medical field). I had been fishing all day with no issues but that night we were all out to eat when I started to feel off. I walked outside to get some air. When everyone came outside I was talking for a few minutes then all of the sudden I told my wife I was about to faint and sure enough I did. I woke up to everyone and their mother around me. I was sweating profusely and pale. Everyone said it looked like I had a seizure. Went to the ER with no findings except sinus tachycardia. The next day and the rest of the weekend trip I was fine, felt a little off but nothing dramatic. I returned to work the following week and felt fine until exactly a week after and had what I guess was a panic attack and had to leave. Then my “anxiety” and other symptoms were daily. I ended up hardly being able to drive because I felt off. Started working from home. Stopped going to the gym. Stopped fishing. Stopped socializing. Stopped being myself basically. After seeing a cardiologist, neurologist and GP everything was “normal”. This is when I agreed it might just be anxiety even though I felt there was an underlying condition causing this & I wasn’t sure how you go from never having anxiety to it being so crippling and making you pass out. Fast forward to October 4th. I was wearing a 30 day holster monitor, i was at home at that night laying down watching netflix when I felt a sensation go up my chest, to my throat and my left arm. I knew something wasn’t right so I tried calling my neighbor. As I was calling him, I passed out again. I woke up to him calling back and asked him to come over. He called the ambulance while I laid on the garage floor completely pale and sweating profusely again. When the EMT got there they sat me up to check vitals & I passed out again. My neighbor who wasn’t there the first time said it looked like I had a seizure as well. At the ER everything checked out normal though. These were the only times I have passed out but from August 23rd 2020 until now I have not been myself with various weird symptoms. I feel like a beta & don’t know why. I’m actually going through a divorce bc my wife thinks this is all just in my head but none of it makes sense and I could really use any suggestions.

Symptoms:

  1. Feel like a beta
  2. Tachycardia: Heart rate is mid 60s sleeping but ~100 throughout the day everyday whether I feel “anxious” or not and increases very easily upon exertion.
  3. Shortness of breath
  4. Back pain
  5. Brain Fog
  6. Lack of motivation
  7. Lack of Energy
  8. Anxiety/Depression: Not sure if this is a symptom or the cause at this point. I think the depression part is from not having my normal life back?
  9. Feel timid/nervous:
  10. Exercise intolerance
  11. Ocasional chest pains: More so under the sternum and it’s usually aggravated with exertion but does happen when lying down.
  12. Poor Memory (Short Term)
  13. General feeling of unwellness
  14. Get lightheaded when I do go for a run
  15. Cold hands & feet at times
  16. Not as good with the heat as I used to be
  17. Pale face after exercise. Face pallor than rest of my body.

Current Medications:

  • Testosterone Cyp 120mg/wk (1 injection): Originally started at 100mg/wk in January of 2020. 3 months later, increased it to 120mg/wk. From the very first injection to now the only differences I’ve noticed is increased libido & my Hct & Hg went up so I’m thinking this isn’t my (main) issues like originally thought.

  • Omega 3’s/daily: Just started these on 10/5/2020.

  • B12 Injections/weekly: I have done these weekly for the past 4 weeks.

Previous Medication:

  • Amlodipine 5mg/daily: Started this in 2018. Discontinued this in August of 2020 because we were thinking this was part of this issue. My BP on this med was 145-155/90-95. Weirdly since stopping my BP is around 120-125/80ish.

  • Crestor 10mg/daily: Started this May 2020 and discontinued in August 2020 after my cholesterol numbers improved.

  • Vitamin D3 5,000 IU/daily: Started this back in November of 2019. Levels were 19 which is weird since I’m always outside fishing or something. Discontinued in August 2020 bc levels were good but will probably re-start since winter is almost here.

  • SSRI: I tried these 3 different times this through 2019-2020 against my will since I was told I was just anxious and depressed. Stopped everytime within a week bc they made everything 10x worse & made me feel suicidal which I’ve never felt & don’t care to ever feel that way again. (I feel incredibly sorry for people who feel that way daily after that experience though.)

  • Terbinifine: Took this for toe fungus for 3 months (June,July, August 2020). This is about the same time all my issues started to unfold? Probably just a coincidence.

  • Clomid 25mg/daily: Tried this before Test Cyp for a week and didn’t like it. I think it crashed my estrogen (not sure if that’s possible or not) but numbers were definitely lower after it.

Background: I grew up hunting, fishing, & played sports year round. I played collegiate lacrosse. After college I played softball up until this mess. For the past 10 years (except this year) I have worked out atleast 3 times a week. I’m not super strict on workout programs but my weekly workout consisted of boxing or sprints for cardio, and only compound lifts. I was always very social, active & stayed outside. I have no history of anxiety/depression & have always been outgoing. While I have always liked my alone time here and there, I would consider myself an extrovert. I fortunately had a good upbringing and no trauma that could have resulted in what’s going on. I broke several bones & had stitches from dirt bikes/4 wheelers and sports (no head injuries). The only other medical history I’ve had prior to this mess I’m in now was Anemia as a child (~4YO) and had my appendix removed ~12YO.

Family Medical History:

  • Paternal Grandpa*: Died of heart attack at 39. All 6 of his brothers died of heart attacks between ages 39-42 as well.

  • Paternal Grandma: Hypothyroidsim

  • Dad: Type II diabetic, Hypogonadism, High cholesterol, High Blood Pressure, Gallbladder removed

  • Mom: High Cholesterol (Dr says healthy cholesterol is really good so no meds needed)

Doctors/Test Done:

  • (2) Cardiologist: Several EKGs, Holster Monitor, Echocardiogram, Stress Test W/ Echocardiogram.
  • Neurologist: Brain MRI, EEG, Ambulatory EEG
  • (2) Endos:
  • Internist: Abdomen Ultrasound
  • Kidney Doc
  • GP: Pheochycytoma, lyme, AIDS, Lupus, Sarcoidosis, Metal Toxicity, Diabetes
  • Therapist

Possible Causes?

  1. Hypothyroid
  2. Nutrient Deficiency (Managnese, Bs, C, ect.)
  3. Chronic Stress (Toxic Marriage)
  4. Iron Deficiency: My Iron Saturation is low but ferritin and Iron are normal? I know @dextermorgan & @systemlord had similar lab values with issues.
  5. Adrenal Issue
  6. POTS
  7. All in my head, God forbid.

//Click Here For A Spreadsheet of All Labs//
This has all of my bloodworm on it. It’s Dense but should provide needed information.

Vitamin/Mineral Labs:

Like I said this is a dense post and if you read through it and are able to provide any advice I’m going to thank you in advance.

Your TSH is going essentially straight up. Your TSH is very low, which it should be when your calcium is high, which would indicate that you do not have a parathyroid tumour (The tumours cause steady high PTH production no matter what your Calcium level is). Have they done an MRI on your neck? for thyroid or other growths? A lifting partner of mine had similar issues to yours, out of nowhere would just faint. We thought it was glucose, turned out he ended up with a pacemaker. His pulse would drop below 10 and he’d hit the floor because for some reason the signal to pump was getting there. They installed the leads for the pacemaker and the problem disappeared, it’s bluetooth and when they check it it almost never does anything but his body is using the leads to send the signal instead of his own pathway. I’m not saying that this is your problem, it should have shown up if you had a spell while wearing the holter.

I would think the holster monitor would have captured that during the fainting episode. But I’ll definitely keep that in mind just in case it was missed.

I’ll definitely check about the imaging in my neck/chest. Haven’t done that one yet.

I have been having noticeable symptoms since the summer of 2019. One of the abnormal blood levels I found was low testosterone. I started Testosterone Cyp in January 2020 thinking this was the issues but the only benefit I have found is increased libido (but rarely morning erections). I started off on 100mg/week, three months later I increased to 120mg/week where I am still at currently with no relief of other symptoms.

For a more thorough backstory please read my other post: Advice Needed: TRT / Thyroid / Anemia / Nutrition / Adrenal

If you could please review my spreadsheet that contains all labs and see if anything sticks out that would be greatly appreciated.

I am working with doctors and exploring other options but figured this is a good place to get input on hormonal issues (or anything else someone might pick up on).

Specific areas of concern are Iron, thyroid, adrenals, and electrolytes.

Thanks in advance!

You have metabolic syndrome, T won’t fix it

What do you for metabolic syndrome?

Also, I’m 5’9 175lbs… so not obese which seems to be the main thing about metabolic syndrome.

You should be more concerned with other things. No one’s calcium swings from 8.2 to 10.6 without a serious parathyroid issue. There is only one PTH lab, and it’s very low, and you are hypercalcemic at the same time. There are no Ionized Calcium labs at all, or D 1,25 labs. If you went to a specialist and that specialist didn’t freak out about the calcium swings, find a new endo. They should have done a PTH, D, D 1,25, Ionized Calcium and 24hr urine collection. All the labs outside of the urine collection should be from the same blood draw, and PTH tests are supposed to use a chilled/refrigerated vial (PTH has a 5 minute half-life, so accuracy on the labs is tricky). They may suggest a Sestimibe scan if the clue in to those numbers, it is not actually a diagnostic tool but is often used as such. Mine was negative and I had hyperplasia. Your labs look like hyperplasia, or you have cancer in your thyroid. Fainting/dizziness is not unusual for the condition - even though it is not a described symptom.

Most of the times overweight people have it, you are not overweight but you have MS and you should fix it, your fasting glucose shows you are pre diabetic, lipids high that’s why crestor, HDL is low, triglycerides high, SHBG low, TT low all these show clearly MS, the proper way to fix it is diet and exercise

The low calcium was the two times I loss consciousness and went to the ER. My vitamin D was low so I started taking 5000iu daily of D3 which is when my calcium shot up to 10.6 and stayed at 10.2

I stopped taking the D3 about a month or two ago and my most recent blood work shows calcium at 8.8 which again seems abnormal.

I actually have all had multiple PTH test and the other tests you mentioned.

This spreadsheet should show it.