Follow up questions to previous post

[BarbaraSS]

My previous question with comments is here:  http://www.medhelp.org/posts/Thyroid-Disorders/Help-please/show/2896209

In a nutshell my PCP agreed to check my calcium and PTH as well as my thyroid and peri/menopause hormones. The PTH and estradiol came back not tested,  being told the wrong vials were used.

She is sending over another request for PTH, estradiol and FT3 and RT3 (the last two she never ordered and as she says, she doesn't believe will be of use since my. TSH and FT4 are normal).

Questions -- the tests will be 1 1/2-2 weeks apart, is that close enough or will they be valueless if not done together?

The PTH I am not going to worry about because this feels like a shot in the dark and if it comes back even slightly questionable, I know where I can get my own done with the calcium.

I can do the same with the thyroid but since she  is a bit more receptive didn't know if I should demand they be at the same time. She's  concerned about the insurance not covering it (and doesn't think it's thyroid) and if I ultimately have to get my own would rather not pay for both, but will.

CH seems like it is so rare but one (mini) flag is that about 15-16 years ago we were rear ended. It wasn't bad but I've had neck issues to some extent since.  But I started with migraine headaches after. For about  3-4 weeks I had them almost daily to the point they gave me high dose ibuprofen. If I bent over it felt like my brain was slamming into my skull. The neurologist gave me omitted but I stopped taking it b/c the warnings were scary and I would get a weird flush. Over time it lessened but I'm wondering if this minor whiplash would have been enough to cause CH.

Ive had problems for about as long and never even  considered a connection until reading. Per Gimel's suggestion on CH.  

Thanks for your help,
Babs

[gimel]

D needs to be about 50 min., so you need to supplement.  

I suppose you could say that about many things, not just thyroid; however, when you have symptoms that are so often related to being hypothyroid and your FT4 is very low in the range, and your Free T3 is only 58%, then treatment with thyroid med is not going to cause heart problems.  Note the info in the following quote from a good thyroid doctor.

"TSH-suppression is a frequent result of adequate thyroid optimization and does not equal hyperthyroidism. Thyroid
dosing must be adjusted by symptoms and signs first, and by free hormone levels second. Contrary to old doctor's tales, thyroid
hormone is not a drug that makes anyone feel better. People feel better on thyroid supplementation only if they needed more
hormone. People do not feel well on excessive doses of thyroid hormone--they have palpitations, irritability, sweating,
insomnia, and shaky hands. Typically, on optimal therapy, the TSH is suppressed while the FT4 or FT3 are still within the
population ranges. In order for a doctor to produce hyperthyroidism and its attendant problems, he/she would have to prescribe  
grossly excessive doses of thyroid hormone, where the FT4 and FT3 were both high-normal or high. In endogenous
hyperthyroidism, such as occurs in Grave’s disease, the FT4 and FT3 levels are frequently 2 or more times greater than the upper
limit of the reference ranges! Only levels like this can produce muscle wasting. (Riis 2005) Thyroid hormone replacement does
not cause bone loss as is commonly believed; it simply increases all metabolic activities in the body. If a person is already in a
bone-losing state, such as a postmenopausal woman who is not on proper bioidentical hormone replacement therapy, then she will
lose bone faster with better thyroid levels. Excess thyroid hormone can cause heart problems like a rapid heart rate, thickened
heart wall, and poor diastolic relaxation. Again, such persons are usually uncomfortable, their pulse is high, and simply lowering the
dose fixes the problem. Unfortunately cardiac issues can occur even without excessive dosing in susceptible persons. For instance,
atrial fibrillation (a rapid, irregular heartbeat) occurs in 20% of people naturally at some time in their lifetime, and it is more likely
to occur with higher thyroid hormone levels within the ranges as opposed to lower. Risk factors for AF include obesity, sleep
apnea, alcohol, and smoking. Fortunately atrial fibrillation is reversible and its recurrence can be avoided by the use of medication
and/or with lower thyroid doses. Dr. Lindner believes, and most suffering patients would most likely agree, that the chance of
triggering atrial fibrillation in susceptible persons is not a sufficient reason to withhold thyroid hormone optimization from everyone
who needs it."

[BarbaraSS]

Hi Gimel, was just tested for B12 and D.  B12 was in the 500s and D was at 29.

My PCP explains that FT4 does not fluctuate as much as TSH, which does confuse me.  It seems like they ask for it to be both ways.  It fluctuates so much during the day so you can't rely on a singular result, but when that singular result does not ever fluctuate, then you are told it is not supposed to and that is where my set point is, regardless of the symptoms.

But don't my labs really just look normal, except for those who prescribe to the "optimal" which seems to be patients who have been able to get treatment either by having out of range labs or a doc willing to treat based on symptoms and then get to that "feel good" spot?

I just sit in perpetual normal and feel terrible.  I'll continue to follow with my own testing and try to get in with one of those new docs you sent and see if they will take pity on my and let me do a trial to relieve symptoms.

Perhaps some advice on this -- treating with thyroid on someone who doesn't need it can cause heart problems and that is why it is too risky to do a trial.

Thanks for your help.

[gimel]

When was the last time you were tested for B12 and Vitamin D?  If not within last year, I suggest that you should get those done along with ferritin.  Deficiencies in those can cause symptoms as well.  

I see no reason for confusion about your symptoms.  Your FT4 is only at 20% of the range, when it should be at least 50%.  Your Free T3 is at 58%, so there is plenty of room to increase as needed to relieve symptoms.  In addition to the 3 tests recommended above, I also recommend testing for cortisol.  Doctors typically only run a morning serum cortisol test.  From online sources you can also get a diurnal saliva cortisol panel of 4 tests done over the whole day.  Cost is about $140.  Cortisol that is too high or too low adversely affects thyroid hormone effects.

[BarbaraSS]

Good morning.  Got the estradiol and the RT3.  

Estradiol < 2, so appears full on menopause.  It was at 69 in December so bam that was fast!

The RT3 also fell to 11, so that combined with the increase in FT3 seems like my thyroid is actually doing really well.  Could it just be that it is taking time for symptom improvement?

I still feel immensely fatigued, constipated, am losing hair, irritable, etc., etc.

Is it possible that having no estrogen will allow the thyroid to perform better?  I believe I read somewhere about a correlation.

Would love your assessment.  I am more confused why I feel so terrible with these new improved (finally some movement) labs...guess I'm now hoping maybe it just takes some time to feel the effects.

Thoughts?

Also, found a ferritin result from about 6-7 years ago that was actually 27 and put on iron.  I actually don't really remember any of this, but it was in some old med records (doc moved, new doc didn't have records, I don't think?).  Haven't had a recent ferritin to my knowledge so have requested that, even though I don't think that singly could cause all of this...and if it could, geesh, wouldn't someone (besides silly me) have thought to check?

[gimel]

Yes, I have used that approach to try and locate a good thyroid doctor.  Also, I just sent you a PM with more doctor info.  

[BarbaraSS]

Hi Gimel,

Still no RT3 or estradiol.  Not sure why it is taking so long.  Didn't get a morning cortisol or any cortisol at all.  

I did pose to my pcp about my FT4 being so low and never moving and asked if there is any other reason besides thyroid why it wouldn't respond to fluctuations in TSH, especially with all of the symptoms.

I don't expect anything from her.  

I will post the RT3 once I receive it.  Then I plan to do my own testing while I wait to get in with another doctor.  Have you ever approached a pharmacist about doctors who prescribe thyroid as a means to find a doctor knowledgable about thyroid?   The one endo I saw years ago when this all started (and did that morning cortisol, which was like an 8 or a 9) said I was fine but I later found out she mostly treats diabetes and I didn't realize within the specialty they specialize, if that makes sense.

Thanks again.

[gimel]

I would say that the reason you have been so fatigued and all the other symptoms you mentioned is that you are hypothyroid. Recall the words of a good thyroid doctor that I previously posted.

"The free T3 is not as helpful in untreated persons as the free T4 because in the light of a rather low FT4 the body will convert more T4 to T3 to maintain thyroid effect as well as is possible. So the person with a rather low FT4 and high-in-range FT3 may still be hypothyroid. However, if the FT4 is below 1.3 and the FT3 is also rather low, say below 3.4 (range 2 to 4.4 at LabCorp) then its likely that hypothyroidism is the cause of a person's symptoms."  

I am really interested in the RT3 and morning serum cortisol results that you are waiting for.  

Have you been tested for ferritin?  

[gimel]

No need to be concerned about interval for repeat thyroid testing.  You have had enough thyroid related tests, that along with symptoms, show the need to start on thyroid med.  Once you start on thyroid med, doctors like to wait for 2-3 months, but even T4 reaches about 90% of final effect on serum levels in 4 weeks.  So at the start you should push for followup tests in 4-5 weeks, until you start approaching optimal levels and then you also need to allow time for full effect on symptoms.  

You don't need additional tests to try and prove central hypothyroidism.  You just need a good thyroid doctor that will treat clinically as I have described.  

No hair has been pulled.  LOL

[BarbaraSS]

Thanks again Gimel.

So, I got the PTH back and it was 44 with my previous calcium at 10.1, so it doesn't appear to be a parathyroid problem.  I have 4 calcium at 10 (1) or 10.1 (3) in the last year and half, with 10.1 being the last in-range result, so I guess I'm just the cool kid hanging out at the top.

My FT3 (taken 2 weeks after the TSH and FT4) came back as high as I've ever had at 3.4 (2.3-4.2).  Does that now rule out hypo/CH? Still waiting on RT3 and estradiol (to complement my menopause at 46).

I honestly can't figure out why I am so fatigued and with all of the symptoms for the past 10 to 15 years.

I have also requested my med records from my previous doctor, which I hope to have in a few days just to see if there can be anything learned in previous lab work.

Also, I thought if I posted the labwork I've had in the past few years in order, it might make a clearer picture.

I won't go way back unless you think more info would be helpful.

2-2011

Vit D         9 ng/mL  (30-50)
Vit B12    211pg/mL (200-110)

Started on B12 injections and high dose vitamin D3

Oct 2014

Urine Calc Ox >5 (no range given)

***This made me research and I became concerned that vit d supp had caused kidney stones.  No issues, doc not concerned.


Vit D    44 ng/mL (25-80)

CA      10 mg/dL  (8.7-10.4)


12-2014

RT3    17 ng/dL  (8-25)
FT3    2.7 pg/mL  (2.3-4.2)

FT4  1.1 ng/dL  (0.8-1.8)
TSH  1.62 mIU/L  (0.4-4.5)

FSH  39.8 mIU/L  high except for post meno (not then...I was 44)

LH  42.1 mIU/L  high except mid or post meno

Estradiol  69 pg/mL in range except for post meno


10-2015

CA  10.1 mg/dL (8.6-10.1)

TSH w/ Reflex   1.28 mIU/L  (0.4-4.5)


11-2015

CA  10 mg/dL (8.6-10.1)
TSH   1.16 mIU/L  (0.4-4.5)
FT4   1.1 ng/dL  (0.8-1.8)


5-2016

CA  9.9 mg/dL (8.6-10.1)

6-2016

CA  10.1 (8.6-10.1)
FSH  103 post meno
LH  31  post meno (or mid, but 4+ months, so not mid)

TSH   1.6 mIU/L  (0.4-4.5)
FT4    1 ng/dL  (0.8-1.8)


7-2016

FT3   3.4 pg/mL  (2.3-4.2)



Some tests seem like they are back to back, but some were run by the rhuemy and some by the pcp.  Like I said, I am still waiting on the RT3.

I suppose its good my FT3 went up.  What always strikes me as odd though is that even though my TSH bounces around in the normal range of 1-2, the FT4 just kind of sits at 1.1.  Is that expected?  I even have a couple of labs from 15 years ago when I first started really complaining about the exhaustion that my FT4 was just at 1.1.  Just 1.1.  

As ever, thank you for taking the time to read, listen and guide me.

I though I'd take all of this to an endo.  I can't get in with the one doc you provided for several months.  I'm thinking I will see if there is a DO I can get into sooner to see if I can sort it out.

That said, in light of the above tests and the fact that my FT3 did go up to a more optimal level, does that preclude hypo/CH and I should put my efforts elsewhere?

[BarbaraSS]

I also meant to say I have so many other tests -- ANAs, C3 complements, Sed rates, metabolic panels, rheumatoid, lyme, c-reactive, creatine kinase, cbc, dna, TPO, TGB, peptipe IGG Ab, Chromatin, Smith Auto, SS-B, etc, etc., that are all basically normal, but if any would be helpful in the picture, please let me know and I am happy to share the results.

Thanks

[BarbaraSS]

Thanks again Gimel.  I went to have the new blood drawn today for PTH, estradiol and the FT3/RT3.  Apparently the PTH (and maybe estradiol) need to be frozen and is likely why the ones done at the pcp weren't accepted.  Anyway, by the end of the week I should have the results.

If, as always is my case, I'm in some type of gray zone, I will likely have my own tests done for the Calcium and PTH.

As for repeat thyroid testing, what interval do you suggest to monitor?  Every 3 months? Longer? Shorter?  And, if it is more indicative of CH, do I need any other tests, like TRH?  I can't seem to find to get that done on my own.

My frustration is that since I have had the positive ANA, my doc just wants to attribute everything to that even though my complaints have been around much longer than a mildly positive ANA and it only spiked somewhat high once, otherwise it is just slightly positive with no other factors being positive (no Sjorgens, no RA, don't meet criteria for SLE, all of the blood work is negative (sed rate, C3 complement, etc., etc.)).  Even  my rhuemy says some of the population just have a positive ANA and have nothing wrong.   Now, I am coming back menopausal, so it will now be the cause of my symptoms.  I'm sure it contributes now, but is not the root cause.

Sorry for venting.  Love to know the intervals recommended for finding a trend, if any.  And will let you know when I get the other results back.

Thanks again for all of your patient answers.  Ha, I just assume they are patient, you may be pulling your hair out with all of my questions.  :  )

[gimel]

Time lapse between tests should not be a significant concern other than for Free T3 and Reverse T3 which should be done on the same blood draw.  

[BarbaraSS]

Sorry for the typos.

The neurologist gave me Imitrex.

And -  I've had problems for about as long as long and never even considered a connection until reading about CH per Gimel's suggestion  on CH.