Doc concerned about bones, heart, "high" dose NDT

[1Kel12]

Hi all,

My doc is now expressing concerns about treating my "subclinical" hypothyroid.

She thinks I am on a very high dose of nature-throid (currently 2.25) and she says she worries that long term this is causing osteoporosis and is straining my heart/cardio system. She agreed to a future increase of 2.5 grains but she is unlikely to prescribe any more and would like me to try going off of NDT entirely at some point. I am willing to try as well but not yet, I'm not even stable yet and just now feeling better after a really bad year.

My labs may not have been "bad" but my symptoms didn't feel very "subclinical". I am a little concerned now, I don't want to hurt my body but NOTHING before NDT made a difference and I've been screened for cancer etc. If this isn't hypothyroid, I don't even know where to begin, we've screened for everything.

I pointed out NDT is the only thing that has made me feel better/remove symptoms but she says "everyone feels better on NDT".

As for my high dose of NDT, with this increase I did have a minor headache/increased heartrate for about a week. My blood pressure is currently 92/68 (this is my normal bp) and my resting heart rate has increased a bit, I'm around 60 now instead of my normal 50. Otherwise I am feel decent, I even started to run again and my heart feels normal.

If my NDT dose is too high, won't I know??

She said she would read any solid info I could come up with that says NDT doesn't cause the above problems.

I'd appreciate any thoughts and.or information.

Thank you very much, Kel

[flyingfool]

RE: YOur blood labs.

Keep in mind this was BEFORE your increase in dosage.  And keep in m ind the rule of thumb of FT4 to be 50% or a bit higher AND FT3 to be 50% to 66% tending more towards the 66%

Your labs were:
FT4 = 1 (0.8 - 1.8) ng/dL which equates to only 20% of the range
FT3 = 2.7 (2.3 - 4.2) pg/m which equates to ONLy 21% of the range.

As you can see you are well shy of the rule of thumb percentages listed above.

Also keep in mind that NDT has quite a lot of T3 in it and not much T4.  So as you continue to increase, it is not uncommon to find your FT3 levels to become fine, while your FT4 levels to be low.  Depending upon how you feel, you may or may not have to add in T4 medication to get a good balance and feel well.

My wife is in this situation now. Where she seems to feel OK, but her FT4 levels are rock bottom.  At least at last labs.  So we are considering the addition of T4 medication in addition to NDT she is taking.  By the way.  My wifes current NDT is 180 mg or 3.0 grains.  And she is showing zero signs of Hyper.  At a dose higher than what you are taking.  While everyone is different, maybe it will give your Dr some "comfort" that 2.25 grains is not crazy high.

[Barb135]

Exercise helps keep bones strong, but without adequate calcium you can still lose bone; magnesium, vitamin D3 are necessary to make sure you absorb the calcium properly.  Vitamin K2 helps make sure calcium actually goes to the bones, where it's needed and not to the arteries, veins, etc where you don't want it.  

I was getting plenty of exercise (plus had a physically demanding job) when it was determined that I had osteopenia, but I added the calcium, magnesium and vitamin D to my regimen and started rebuilding what I'd lost.  Exercise, alone, is not enough...

As for the cardiac issue - everyone is as risk, of course, though it sounds like you're risk is very low.  You could offer to have a heart work up just to satisfy your doctor, though it does seem like a waste of money.

You should be aware, though, that too low heart rate and blood pressure are signs of hypothyroidism and present risk on the other end of the scale.  

[1Kel12]

Very interesting, I'll look into that. It also seems in my case I would be low risk? for bone loss given my high impact exercise. But when I'm sick I can't exercise at all, its terrible. Not exercising at all seems worse to me than being on NDT  - feeling good and being capable of doing my endurance training.

Any thoughts on the cardio aspect? What do they fear will happen? My cardio system is probably better than average....my cholesterol is very low (we are checking it now) and my heart rate, blood pressure is low.

Where is the risk?

Best, Kel

[Barb135]

I forgot to mention that I actually rebuilt lost bone via a regimen of daily calcium, magnesium and vitamin D supplements and exercise.  I've since learned the value of vitamin K2, as well, so you might want to research and implement your own regimen, as this, too, could help put your doctor's mind to rest.

[1Kel12]

Perfect, Thank you Barb!

[Barb135]

Here are a couple of studies that might satisfy your doctor...

"The rate of bone loss in TSH-suppressed patients (-0.849 +/- 0.605%/year) was not significantly different from that of nonsuppressed patients (-0.669 +/- 0.659). These prospective and cross-sectional data suggest that long-term levothyroxine therapy using suppressive doses has no significant adverse effects on bone."

www.ncbi.nlm.nih.gov/pubmed/7787427?dopt=Abstract

"There was no difference between patients and controls in serum total calcium, intact PTH, osteocalcin, or carboxy-terminal cross-linked telopeptide of type I collagen or in the concentrations of two markers of thyroid hormone action (sex hormone-binding globulin and amino-terminal propeptide of type III procollagen). Our data suggest that L-T4 suppressive therapy, if carefully carried out and monitored, using the smallest dose necessary to suppress TSH secretion has no significant effect on bone metabolism or bone mass."

www.ncbi.nlm.nih.gov/pubmed/7787427?dopt=Abstract

My endo had the same concern, though I'm not on desiccated hormones, but I do take a small dose of synthetic T3.  I was diagnosed with osteopenia several years before I was diagnosed with hypothyroidism, so osteoporosis is definitely a concern.  I do also problems with my aortic artery, as well leaking heart valves.  In order to put his mind at rest, I agreed to have periodic bone density scans (every 2 yrs) as well as periodic echocardiogram on my heart... As long as he could see for himself that my bones and  heart were not deteriorating, he did not object to allowing me to remain on adequate levels of medication.  Unfortunately, he has gone out of private practice and I'm left looking for another doctor.

[1Kel12]

Thanks for your time flyingfool.

My last labs at 1.25 grain naturethroid, (I am currently at 2.25 grains and expecting new labs soon).

FT4 = 1 (0.8 - 1.8) ng/dL
FT3 = 2.7 (2.3 - 4.2) pg/mL
RT3 = 18 (8 - 25) ng/dL

She has suggested "wilsons syndrome" but from what I have read I don't think? I fit the symptoms. I didn't think I fit the adrenal symptom list either and I was right about that.

I would love to not need NDT but going off meds at least for now makes me very uneasy. My hair loss is better but still coming out and I am still bringing up my low vitamins. From what I understand T3 treatment could take months of feeling bad. I'm not mentally or physically ready for that right now.

My heartrate & bp are low but I do/did endurance sports. But yes, I would think my heart rate would be higher if hyper and I am sleeping very well, no heart problems while running etc.

I don't want to find a new doc, I've been through 12 this year. I do like her overall and she says she is willing to read/learn, I suspect she hasn't had a lot of experience with thyroid issues.

Best, Kel

[flyingfool]

Please post your latest blood labs along with the reference ranges please so that we can give you the best answer we can.

The following statement said by your Dr. alone is worth a million dollars!

I pointed out NDT is the only thing that has made me feel better/remove symptoms but she says "everyone feels better on NDT".

The fact that your Dr admits that people get better when on NDT should be proof that it WORKS, not that it doesn't!

What other medication when given to people who are sick that "always feel better" after it is given would be looked at with suspicion.  Other than perhaps a pain killer.  But that is masking the pain.  And not the root cause.

For people who are low thyroid, the solution is to provide sufficient thyroid.

I would strongly recommend that you start looking for another Dr.

Taking you off completely would be a utter disaster!  I would NOT do that if I were you if you are not showing any symptoms of being Hyper.

Bone loss is a SEPARATE function. The only reason why it is speeded up is due to metabolism.  And your metabolism speeds up with thyroid medication.  So that is what increases the bone loss.  

If you want to deal with bone loss.  Look to the root cause of the bone loss.  Not make yourself sick by lack of thyroid simply to slow your metabolism. That makes ZERO sense.

Your heart rate is NOT rapid.  50 is more towards abnormally low. And 60 I think is more normal.  The fact that it has speeded up is in my opinion a good thing.  Too low of Heart rate is not good. And brining it up into the more normal range is a good thing.  NOT a bad thing.  And 60 beats is nothing close to "Hyper".  And your BP is low as well.  In fact I think a bit lower than "normal".

So there is NOTHING indicating that you are Hyper. So your Dr is probably lookiing at your by now probably supressed TSH. Which the T3 in the NDT is what is most likely causing this since you have not indicated any real Hyper symptoms.

The fact that nothing you had tried before has works suggests that you may have a conversion problem.  And thus you need the addition of the T3 in order to directly get the Free T3 your body needs as it is unable to convert the T4 in sufficient quantities.  Again this is hard to tell without your blood labs and if you have a history of the labs and dosages that would be even better as we can then see what kind of effect the various dosage changes had to the blood labs and symptoms.

Also it is not at all uncommon to be at 2.5 grains of NDT.  I believe I have read it is not uncommon to have people on up to I believe 6 grains.  But they may have absorption issues. But still.  It is not at all uncommon for NDT patients to be on 2.5 grains.

All of this are all indications to me that your Dr really isn't on top of things in regard to thyroid treatment.  As most primary care Dr are not.  So don't be surprised by this.  It is the rule rather than the exception unfortunately.