Vitamin D Community
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Avatar universal
Numbers have raised quickly into range but
I still feel terrible although a tad better.  Long way to go though.  
I was feeling great about a year ago and then all of a sudden, Wham!  Things got bad very fast.  Major fatigue, weakness, bp spikes, depression, ed, dry skin, etc...
took 9 months to find I had a D deficiency.   7 weeks ago it was 15.2.  Today it's 44.9.  I apparently got in range quickly.  Doesn't matter though because I still feel aweful.  Magnesium and calcium are in range too.  
Unless I have something else seriously wrong which no one can find,  what's going on here.  My numbers got into range fairly quickly it sounds like.  Is it going to take a while to feel better?   I've read that symptoms may not improve as quick as number do.  Anyone have any knowledge or experience with this?
thank you.  
10 Responses
1530171 tn?1448133193
Your numbers may look real good indeed, but good health is not just good lab numbers.
We try to treat so many imbalances and conditions just by using these results.

But that's only a small part of the big picture.

Vitamin D must be taken with K2, your magnesium levels should be high enough and the same for vit A
They all work in synergy in the body to avoid Vit. D toxicity,calcification of soft tissues,  arterial calcification,
low blood coagulation and to facilitate bone formation
among many other important functions.

To take things a step further, have you had your thyroid function properly tested?
For thyroid function, not just circulating thyroid hormones in serum, you need more than the conventional testing of TSH and T4.
You need Free T3 (FT3), Free T4  (FT4) AND Reverse T3(RT3).
In your case TBG* might be valuable to verify the source.
Your symptoms are typical hypothyroid and it would be consistent with TRT side-effects, which may have to do with causing  lower  *thyroid binding globulin, which affects Free T3 levels by increasing Reverse T3 (it's a reversing or reducing thyroid hormone, as the name implies).
Very few doctors know about this, so you may have to insist for these tests. That's the only way to rule hypothyroidism out, otherwise you might be in medical
limbo, should you actually have ( undiagnosed ) hypothyroidism.

You should also know your iron status, so consider having a complete iron panel and also an MMA test for methylocobalmin B12 and methylfolate levels
(repeat MMA test within a few weeks).

Best wishes,
Niko

1 Comments
my dr said he would run those.  Anything special  I should know about?
thanks a lot.
Avatar universal
Niko,  thank you so much for the response.   Quite a few very knowledgable people have suggested for me to have the full thyroid panel done.   Yes, all they've run is TSH and T4.  My T4 is only .7 which is bottom range.   Looking back over the last 5 years it's been even out of range low.  Dr didnt' think that was a problem.
I used your post to me and sent it to my dr requesting to look into this.  you and others think i'm hypothyroid.  Yes, I am on trt for 7 years.  The first 6 went great but not this 7th one.   This could very well be it.  
thank you again and for explaining it out so I could communicate with my dr and check this full panel.
Is it an easy fix?  
2 Comments
It would be best if you worked with an experienced health professional, who could interpret the lab results and prescribe a treatment, which would be appropriate and safe for you.

One pitfall would be, treating
the hypothyroidism (if indeed diagnosed) according to the established guidelines, should your cortisol be high nor low (it may correlate with stressed adrenals), specially if RT3 is also high
This could be a valid suspicion, in light of your long term TRT.
The recommended approach in such a case, would be to do a trial of T3 only,
like Cytomel (liothyronine)
and with the smallest dose, to start.
By prescribing T4 (levothyroxine) it would be simply converting to RT3 , since RT3 is  exclusively from T4, as I have already mentioned.
There are practitioners who would prescribe Natural Desiccated Thyroid instead, however, results would be mixed, at least in the beginning.
Since NDT naturally contains all 4 thyroid hormones T1, T2, T3 and T4.
and T4 being the culprit, restoring
Thyroid function can become more challenging than necessary.

Keep me posted, as things develop.

Cheers,
Niko



well, these are the labs they ran.  don't really know what to think.  t4 is below range but always has been even when I felt great.  Thyroid autoantibodies are included also.  
was thinking hyperparathyroid but my calcium is only 9.1 and they say if it's 10.1 and you have low vitamin D that you are pretty much guaranteed to have hyperparathyroidism.  
Don't know where to really turn to.  I guess I need an endo asap.  
I can't be still recovering from Vitamin D deficiency can I?
THYROPEROXIDASE AB
1.0 IU/mL
<9.0 IU/mL
THYROGLOBULIN AB
1.8 IU/mL
<4.0 IU/mL
Free T3
3.2 pg/ml
2.8-5.3 pg/m

Free T4
.6 ng/dl
.7-1.9 ng/dl

TSH
3.02 uIU/ml
.40-4.70 uIU
1530171 tn?1448133193
Hi JB.

I had mentioned testing thyroxin-binding globulin (TGB)
which  can be confused with  thyroglobulin AB which you had tested.
The purpose of the TGB test is to determine the cause of your below range FT4 and low range FT3.
At any rate, I suspect this is an effect of your TRT

Your normal TSH and both FT3 and FT4 being low, point to secondary hypothyroidism.

Reverse T3 -which was not tested- would be high, I suspect, and it would explain where Free T4 goes and why FT3 is low.

So to recap:  You have a conversion problem.
Your T4 is converting to Reverse T3, instead of Free T3, reducing further your Free T3.
You likely have developed secondary hypothyroidism, possibly due to your other hormonal imbalance and treatment.

What to do for the time being?

I'm afraid that a conventional Endo may not be your best choice, if s/he sticks with the established  conventional protocol
.Reverse T3 &Thyroid resistance (type 2) may not be considered for dx or tx

There's a definite clash between Conventional and Functional Medicine.
My views and comments are derived from Functional Medicine principals.

I would suggest you ask your PCP for a trial of T3 only, like Cytomel (liothyronine) and with the smallest dose, to start. T3 only cannot convert to RT3.

The second suggestion is to take some zinc (50 mg?) and some selenium (400 mcg?), which help optimize T4 to T3 conversion.  

The third suggestion is to get the 2 tests that were missed,   thyroxin-binding globulin (TGB) and Reverse T3 (RT3) as I mentioned earlier, just to confirm you're on the right track.

No worries, it will  eventually get resolved.
You can do a trial of zinc and selenium immediately, if you choose to do so.

And BTW, if you're still doing Vitamin D3, make sure you follow up with K2 and Mg supplementation, for the reasons I explained in my 1st post.

Cheers,
Niko




1 Comments
hi Niko.  I did just get the reverse T3.  It was 13 ng/dl on  a scale of 10-24.  that actually appears low.  At least they brought it into the equation.  
I'm getting referred to endo.   hopfulley can get in there soon and go from there.  thanks for all your time and direction.  
don't know what is doing this and getting pretty afraid that I may never.  gonna be  year soon and no idea.
1756321 tn?1499064984
There is a thread on recovery time after correcting vitamin D deficiency. It could take a year..ayayaya!

http://www.medhelp.org/posts/Vitamin-D/Vitamin-D-Deficiency-recovery-time/show/1955684
3 Comments
thanks Red_Star.  I read that thread last night.  Do you really think that this could wind up being so bad physically and actual physical recovery?   numbers got up quick but obviously not symptoms which makes me wonder if I have an autoimmume or something else.  this is just hard to believe.
If I knew it was only Vitamin D and it would take a long time even with good numbers I would be so relieved.  
My magnesium and calcium are in good range too.  
thanks again.
Hmm, the secondary hypothyroidism suspicion, possibly involving an underperforming pituitary.
This would explain the low FT3, FT4, RT3 and the normal TSH values.

In this case it's best to find an Integrative Medicine or Functional Medicine Doctor, with experience in this field.
And if you're lucky enough, s/he may
do a Thyrotropin Releasing Hormone-( TRH ) test, something being phased out b'cause of  cost and complexity, along with other necessary testing..

For the time being, having a low-normal RT3 result, you may consider a trial of Natural Desiccated Thyroid,
(NDT) again taking  the smallest dose to start. NDT is  well- balanced compared to Levothyroxine (only T4) and Cytomel (only T3)

Do you know the cause of your low Testosterone and do you have any recent labs?
It would be interesting to see how and if your levels are holding.

Improving Thyroid function would likely increase testosterone levels
and  also lower cholesterol and reduce risk of Heart/cardiovascular disease.
  I was wondering  whether hypothyroidism (including sub-clinical) as a cause, was explored at the time when you got diagnosed with low testosterone.

On another note, Vitamin D Resistance should be ruled out.
Obesity, high or low cortisol, decreased lipid/fat metabolism,
VDR Polymorhism.
In such cases your levels have to be
elevated well beyond normal high levels in order to achieve desired
effects.
And yes, it would take a long time!

Cheers,
Niko
Wish I knew the reason for low T.  Just diagnosed with hypogonadism and put on T injections.
Yeah, my levels dipped during this trt period.  We rose my levels about 2 years ago from 60mg/5days to 80mg/every 5 days.  Free T is high and Total is 550-600 on trough day.  Estrodial is in decent range.  
Maybe thyroid function is the reason for being low to begin with.  
I don't understand the last paragragh with Vitamin D Resistance and VDR and all that.  
Anyway, this is very discouraging for me because i'm losing hope and don't understand so much.  Its scary because I'm afraid my drs aren't going to figure this out and it's gonna take forever to possibly recover if and when they do.  
I really believe it's something to do with thyroid or parathyroid because nothing else makes sense.  
Lymes test was negative a few months ago.  I'm not relying on the vitamin d deficiency anymore really because I cant imagine that doing this to me.  
have a good day.
1756321 tn?1499064984
Oh yeah your thyroid labs aren't looking too good. I have Hashimoto's thyroiditis but there are many other causes of low thyroid function such as iodine insufficiency, over consumption of goitrogenic foods, whiplash or neck trauma.
1 Comments
dr never thinks it's an issue.  they've always been in this range even when I felt great up until 10 months ago.  
how bad could my numbers make me feel so quickly and why wouldn't it ever affect me before?  
thanks.  
Vitamin D Council thinks I may have Hashiomotos.  
Did antibodies do this to you to get hashiomotos?
1756321 tn?1499064984
I forgot to mention hypothyroidism lowers testosterone.
2 Comments
maybe that's why I wound up on trt.  never knew why my natural t levels were low.
The thyroid labs make no sense. Where does the T4 go to for the below range FT4,when your FT3 is so low and your
RT3 is normal.
I'll have to look at it later when I have more time.
1756321 tn?1499064984
80 to 90% of people with Hashimoto's thyroiditis will have TPO antibodies, TG antibodies or both. In your case both your antibodies are negative.

That does not rule out Hashimoto's thyroiditis however since some people will never test positive for thyroid antibodies - this is called seronegative Hashimoto's thyroiditis.  A thyroid ultrasound will show a hypoechoic pattern that is seen with Hashimoto's thyroiditis.  

Seronegative autoimmune thyroiditis is a less aggressive form of Hashimoto's thyroiditis but you may still develop hypothyroidism.  Hashimoto's thyroiditis is often silent in the early stages with no symptoms.

Excerpt from Hypothyroid Mom - Top 5 Reasons Doctors Fail To Diagnose Hypothyroidism...

"Thyroid Tests "Normal" But You Don't Feel Well?

If you're undiagnosed, or a thyroid patient taking thyroid hormone replacement medications, being in the "normal" range does not mean you feel well, or that your treatment is optimized. What levels are considered "optimal*" by many integrative physicians?

~ TSH - Typically less than 2.0
~ Free T4 - Top half of the reference range
~ Free T3 - Top half - top 25th percentile of reference range
~ Reverse T3 - Lower end of normal range
~ Thyroid Peroxidase Antibodies (TPO) - Within reference range
~ Vitamin D - Above 50
~ Ferritin - Above 60 (Above 80 if experiencing hair loss)

* we are all different, one size doesn't fit all, so these are guidelines. Your optimal levels may vary."

Just to add, for those who don't live in the US, Vitamin D - above 125 nmol/L. I had vitamin D deficiency (and most people with Hashimoto's thyroiditis do) and it was down to 30 nmol/L (12 ng/mL).
Avatar universal
I really appreciate you’re help everyone.  None of this obviously makes sense so far and as time goes on to almost a year now I’m really down and hopeless.  
I have absolute pain, weakness, no erectile function or libido, so depressed(I’m sure mostly from life falling apart), hardly have dreams,  dry skin, gained 10 lbs,  vision declined,  can’t focus or concentrate,so fatigued and etc...
1 year ago I went from being the opposite and probably the best shape mentally and physically in my life at age 50.
It’s all been yanked and I have no idea why.   That’s the worst part, not knowing.  
Thanks guys.  
2 Comments
Could it actually be vitamin d symptoms still?  That’s the only thing that has been a diagnosed problem.  It’s really hard to believe that’s it though even though it takes a while even with decent numbers now.   Maybe that’s all I got.  
I doubt it.  wishful thinking.  just want to find IT and deal or live with it.
1756321 tn?1499064984
An interesting symptom of hypothyroidism is myxedema. A video on how to do the simple skin test is on youtube if you want to watch it - search: "Hypothyroidism Type 2: Myxedema Symptoms." I am covered from head to toe in myxedema (have had cellular hypothyroidism for decades and Hashimoto's thyroiditis for maybe 8 years now). Even after a couple of years of taking thyroxine it has improved only mildly in some areas. It's stubborn stuff to get rid off!

When I corrected my vitamin D deficiency, symptoms cleared up not that long afterwards. I have never reached optimal vitamin D levels due to various reasons from magnesium deficiency to stress..it's a work in progress! Due to stress my vitamin D levels have dropped again and I knew it due to various symptoms showing back up.  I was surprised some people did take quite a long time to recover from vitamin D deficiency symptoms. I clearly am not one of those people.
1530171 tn?1448133193
OK, 27% of all people have a Vitamin D Receptor Gene Mutation called VDR taq and another 26% have the other
Vitamin D Receptor Gene Mutation called VDR Bsm.
The degree of Vitamin D resistance depends on whether these genes are  inherited from one parent (homozygous)
or from both parents (heterozygous), among some other lesser factors.
Other causes of Vit. D resistance are the ones I mentioned
before,like High/Low Cortisol,Obesity,possibly Hashimotos (I have not reviewed any articles or studies on the last one)

You would need your D levels to reach 100 ng/ml or 250 nmol/L before symptoms related to a functional Vit. D deficiency improve.
Upping the intake to 10000 IU of oil based Vit. D3 per day along with 100 mcg of K2(MK7) and 400-600 mg of Mg oral ( transdermal Magnesium Oil, as an adjunct), is a recommended protocol by many experienced practitioners.
Vit D3 must be taken with a meal containing some good quality fat.
Cheers,
Niko
3 Comments
Man, I can’t believe how smart you and some others are.  
Probably gonna be a while before I see a specialist.  
In the meantime,  is there a chance that low  vitamin d really did a number on me and I’m not recovered physically yet?    I read that all the time but don’t know what to believe or how bad it can actually be.  
I’m scared because I really want to know why this has happened and seems like I won’t for a while or maybe ever.  
I was really hoping for Lymes.  That test came back negative a few months ago.  
Seems like it’s gotta be hypothyroidism,  Lymes and maybe vitamin d deficiency.  
Anyway this is been an awful time and “living” really sucks.  Can’t even comprehend the feeling of getting out of this.
I understand how it is for you, not knowing what it is behind all your suffering , but, one thing you don't want to wish upon anyone  is chronic Lymes disease.
It is hell on earth for so many people suffering from it.
And its diagnosis, one of the most challenging ones.
I can write an entire book on this subject, lol!

I realize I mixed up the homozygous mutation(which is inherited from both
parents) with the heterozygous (which is from one parent).
Sorry for the confusion.

Before anything moves forward for you, thyroid function needs to be
regulated properly.
When thyroid function is low, repair, maintenance and healing at the cellular level is  very sluggish
and recovery from any imbalance or condition a nearly impossible task!
Appeal to your doctor for a trial of
NDT starting with the smallest dose
as I mentioned previously.

The next step is to seriously consider overcoming the 2nd (suspected) obstacle, the Vitamin D issue.
Please review all my past suggestions on Vitamin D, to ensure
safe and positive results, should you decide to follow though.

Vitamin D is more of a hormone with a lot of "responsibilities" and involved in hundreds of bodily processes
including the signaling of many genes!

It matters not, should there be any additional undiagnosed issues at this point.
The aforementioned imbalances must be resolved first, otherwise, you might be at risk of staying in medical limbo.

Best wishes,
Niko

Thanks bud.  
I just scheduled an appointment for Dec 8 with endo.   I've been asking these questions so that when I do get in I know where to focus on.  Hopefully he's a good dude and open minded.  You never know.  
I'm also gonna have a sleep study done soon.  I had a at home one and had really no signs of apnea.  they wanted me to do a in clinic one even though because they are not convinced it's not an issue.  
Iv'e always been a real light sleeper and am highly doubtful of apena.  I guess many people that have it didn't have a clue either.   That could be an easy fix.   Either way I can fix it or rule it out before I see endo.  
As far as Vitamin D supplementation that I've been on for 2 months,  it has helped at least a little.  I'll keep doing that and hopefully keep getting better.  I'm not sure how bad D deficiency can be but it at this point I highly doubt it being my soul problem.  
The underactive thyroid possiblilty make sense more than low D.  
The apnea thing could be the sole problem but I doubt that's it.  
Again, thanks
Jeff
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