Endocrinologist recco

[CleverCanine]

Hello!

I'm looking for a great (good!) NYC or metro area based endocrinologyst who thinks outside the box.  Someone who will hear me and not only rely on medical textbook/TSH blood tests to treat.  I don't fall within that realm.  My biggest symptoms are continued diffuse hair shed and extreme stomach bloat (that comes with constipation) when on any kind of thyroid dose (bio-identically compounded doses and generic synthroid).  The stomach issue is very challenging. Because of it it's hard to know when I'm hungry because I always feel full; I need to eat small amounts throughout the day because I cna't have a full meal -  but nothing gets rid of the bloat.  This is NOT my body's normal homeostasis.  If I were to come off the meds for about one month - I'd be back to normal.  After a certain period of time however I would need to go back on because of the extreme fatigue/anxiety.  Either way, my hair still sheds.  I was considering trying Tirosent but a new doctor (first endocrinologist I've ever been to) would only prescribe 50mcg despite my wanting to start on a low dose and gradually increase first.  I don't even take 25mcg of the generic synthroid every day because the only way to manage the stomach issue is to take it every 3rd or 4th day.

Any help, ideas, reccos would be so greatly appreciated.

Thank you!

Patricia

[CleverCanine]

Thank you!

Yes - but at that time I believe that doc took my T3 and T4 levels and while the TSH was trending high - we were being conservative and doing a wait and see approach.  I don't recall the T3/T4 indicating anything else was necessary....though I certainly tested with Hashi's antibodies at that time.  He was trying to cut it off at the pass (I believe) with modified diet and vitamins (that would reduce inflammation, etc.).  Also- I don't experience stomach bloat and constipation when off thyroid meds.  My body goes back to homeostatis with that.  The hair shed continues however, as does the tingling in feet and also my teeth will tend to ache. (Don't mean to sound like a hypochondriac - just wanting to be specific.)  

Do you know of any other reason the body would produce more vit B (other than taking supplements)?

I will definitely get those bloods drawn this week.

As always thank you!

[gimel]

As mentioned, stomach bloat, constipation and hair loss can be associated with being hypothyroid.  The 50 mcg of T4 med is a starter dose.  It is not unusual for hypo patients to actually feel slightly worse when first starting on thyroid meds, until serum levels build up and the body gets used to having thyroid hormone again.  Fora a better picture, we need to see those Free T3 and Free T4 test results and reference ranges.  Also, of course the ferritin and Vitamin D.  

Excess B12 is also reported to cause some stomach issues, so I'm glad you stopped taking the B12 supplement in view of the very high test result.

Since T4 meds react so slowly on serum levels, taking those before the blood draw for tests is not a concern.  If you were taking T3 med, then it is recommended to wait until after the blood draw to assure a more representative test result.

[CleverCanine]

Hi there,

Thank you.  I have cut gluten out for the most part as I find it does bloat me.  I have tested negative for celiac though.  I'm hoping the fillers and lactose in the synthroid are what's doing it to my stomach and that's why I thought of giving the Tirosent a try but I've read some other posts on here and some folks have reported more hair shed which makes me not want to go for it!  I may wait until I've seen another endo whom resonates with me before I switch.  Not sure.  When I was seeing a functional MD in NYC for these things back when they began nearly four years ago - I was put on a big vitamin regiment and I felt great but after about a month on so many pills my stomach just didn't seem like it could tolerate the large amount and would bloat up.  Though I really liked him, I had to stop seeing him because he wouldn't decrease the dose of vitamins and the bloating wouldn't go away.  Though his stuff was pretty pure, maybe there were some fillers anyway.

Thanks!

[CleverCanine]

Hi Gimel and thank you again!  I was taking sublingual B12 here and there (maybe 1-2 times/week if I remembered). The dose was 1000MCG.  I've stopped that. I do have the Hashi's antibodies. I was tested in about 2010 with a functional medical doctor I was working with at the time.  Since this has basically been ongoing - I've also been tested for RNP, Smith, Antichromatin Antibodies, RA Latex Turbid, Sjogren's Anti-SS-A & B, and Anti-DNA (DS) Ab Qn in December.  All were <.2 in a .0 - .9 range, except Anti-DNA which was 1 in a 1-9 range and the RA Latex Turbid was 10.6 in a .0 -  13.9 range.  I'm aware that there can be false negatives and that auto-immunes are usually diagnosed by a process of elimination.  My mom is hypothyroid and though she tested negative for it - she has some hallmark symptoms of Sjogren's (saliva, dry eye).  The last thing I want is another auto-immune.  In April this year I was low on vitamin D (24.9 in a 30-100 range) and am now taking a supplement every day or other day. But I will go back to the lab for Vit D, Ferritin, Free T3, FreeT4 and TSH.  Silly question - am I supposed to take the thyroid pill the day of the blood test?  This all began happening when I was 43.  It also catapulted me into early (I feel) peri-menapause though I no longer am sure if the chicken came before the egg or not.  I also don't know how much hormone replacement therapy would help get all the delicate hormones (including thyroid) back in balance or not.  At the moment I am on an estrogen (.0375mg) patch and 100mg of progesterone capsule but could probably do without them as I really wasn't symptomatic when I went on them (apart from hair shed and troubling staying asleep through the night - but that could have been thyroid-related).

Also I have been following a mostly gluten free diet because I do notice I am sensitive to it (I've tested negative for celiac).  That's one reason I wanted to try switching to Tirosent. I'm just a little concerned about doing so from some other posts I've read.  Ahhhhh this is such a delicate, fragile balance!  Once I get new blood results I will post.  

Thank you so much!!!

[burgundy123]

Hi,
  It might also be worth it to try cutting Gluten out from your diet if you haven't already.  Many people with autoimmune desieses and especially autoimmune hypothyroidism (hoshimotos) have an intolerance to gluten and this can lead to stomache bloating as well.  Just an idea.  although that probably wouldnt explain why you feel better when you are off medicine.  
  Synthroid does contain lactose (or some form of milk protein).  This could affect you if you are dairy intolerant.

[gimel]

The only test results that stand out to me are the TSH and B12.  The high B12 made me wonder if you were taking B12 supplements.  The TSH is within the so-called "normal" range; however, the AACE revised the range over 10 years ago down to .3 - 3.0.  Beyond that TSH is a pituitary hormone that is affected by so many things that it is totally inadequate as the sole diagnostic for thyroid issues.  At best TSH is only an indicator to be considered along with more important indicators such as symptoms and also levels of the biologically active thyroid hormones, Free T3 and Free T4.  Of those Free T3 is the most important to know because it largely regulates metabolism and many other body functions.  Scientific studies have also shown that Free T3 correlated best with hypo symptoms, while Free T4 and TSH did not correlate at all.

I am sending you a PM with name of doctor.  Just click on your name and go to your personal page.  Then click on messages.

While waiting to see another doctor, I suggest that you should request your current doctor to test for Free T3 and Free T4, along with the TSH.  Also, since Hashimoto's Thyroiditis is the most common cause for diagnosed hypothyroidism, I suggest that you should test for thyroid antibodies associated with Hashi's.  Those tests are TPO ab and TG ab.  

Further, since hypo patients are frequently too low in the range sfor Vitamin D and ferritin, I also suggest testing those.  If you can get the tests done, then when results are available, please post results and their reference ranges so that members can assess and advise further.

[CleverCanine]

Hi Gimel!

Thanks so much for responding.  I've copied and pasted the lab results below - may be hard/messy to read. Sorry!  I had been to a functional medical doctor for about 1.5 years and he did try to treat the T3 / T4 with bio-identical without much luck.  My stomach was actually worse on the bio-identical.  This stuff is so frustrating!  I would definitely consider LI.  NYC doesn't seem to be a mecca for true healing / good doctors that don't just want to put a bandaid on it and are mute to anything else.  Many thanks for your time!  I'm considering trying 25mcg of Tirosint (I finally got the doctor to call in a lower dose) - just a little apprehensive.  I've read some things about reactions some folks have and a lot of them have suggested starting at a really low dose and gradually increasing it.


Tests: (1) Comp. Metabolic Panel (14) (322000)
  Glucose, Serum            94 mg/dL                    65-99            *1
  BUN                       10 mg/dL                    6-24             *2
  Creatinine, Serum         0.85 mg/dL                  0.57-1.00        *3
! eGFR If NonAfricn Am      82 mL/min/1.73              >59              *4
! eGFR If Africn Am         95 mL/min/1.73              >59              *5
  BUN/Creatinine Ratio      12                          9-23             *6
  Sodium, Serum             139 mmol/L                  134-144          *7
  Potassium, Serum          4.1 mmol/L                  3.5-5.2          *8
  Chloride, Serum           104 mmol/L                  97-108           *9
Carbon Dioxide, Total
                            22 mmol/L                   19-28            *10
  Calcium, Serum            9.3 mg/dL                   8.7-10.2         *11
Protein, Total, Serum
                            6.8 g/dL                    6.0-8.5          *12
  Albumin, Serum            4.4 g/dL                    3.5-5.5          *13
! Globulin, Total           2.4 g/dL                    1.5-4.5          *14
  A/G Ratio                 1.8                         1.1-2.5          *15
  Bilirubin, Total          1.2 mg/dL                   0.0-1.2          *16
Alkaline Phosphatase, S
                            43 IU/L                     42-107           *17
  AST (SGOT)                19 IU/L                     0-40             *18
  ALT (SGPT)                13 IU/L                     0-32             *19

Tests: (2) CBC, Platelet; No Differential (028142)
  WBC                       4.6 x10E3/uL                4.0-10.5         *20
  RBC                       4.44 x10E6/uL               3.77-5.28        *21
  Hemoglobin                13.4 g/dL                   11.1-15.9        *22
  Hematocrit                40.8 %                      34.0-46.6        *23
  MCV                       92 fL                       79-97            *24
  MCH                       30.2 pg                     26.6-33.0        *25
  MCHC                      32.8 g/dL                   31.5-35.7        *26
  RDW                       12.9 %                      12.3-15.4        *27
  Platelets                 274 x10E3/uL                140-415          *28
! NRBC                                                *29

Tests: (3) Cortisol (004051)
! Cortisol                  15.0 ug/dL                  2.3-19.4         *30
                            Cortisol AM         6.2 - 19.4
                        Cortisol PM         2.3 - 11.9


Tests: (4) TSH (004259)
  TSH                       4.450 uIU/mL                0.450-4.500      *31

Tests: (5) Vitamin B12 (001503)
  Vitamin B12          [H]  1793 pg/mL                  211-946          *32
    
Performed At:  RN, LabCorp Raritan