High TPO in new very symptomatic patient. Advice for treatment? List for PCP?

[williegates]

Hey there, I'm the husband.  

My wife was fine in July.  Then in August, everything went to hell.  She has a TON of symptoms - from weight to lack of energy to fluid retention.  

We initially thought it was psychological, so we've been treating it like this since Aug with almost no changes.  Horrible time it has been.  After feeling defeated, I just started reading for hours and I wised up at some point that it could be a symptom and not just depression/suicidality.  I thought maybe Estrogen Dominance.  

A test of her Estrogen/Progesterone levels show a ratio of 12.  The low end is 100 and the high end is 500.  Hers was 12.  Top top top end of scale for Estrogen and bottom low end of scale for Prog.

Before waiting two months to see a OBGYN, I researched the ED for hours and hours, frequently seeing ED caused by thyroid dysfunction.  I thought the same thing as with the depression --- what if the ED is ALSO a symptom and not a cause.....

So I chased that one down, nagged the hell out of the doc, and got her to call in a full Thyroid panel for the wife.  Bam.  Got it.  TPOA is supposed to be under 9UI/mL....it's 301.  

So the biggest concern is the insane fatigue and depression she has.  It's killing her.  I worry about her snapping one of these days.  I really do.  She says she will tell me if it gets there, but she's sobbing just getting up out of bed some days after 14 hours in bed, then going down and sitting on the couch and falling asleep sitting up.  It's scary and depressing for me too.  

The reason why I post is we have one of those PCP docs that if you tell him you want something, he will most the time just do it.  And while I would much rather get her in to see a specialist Endo, the three in network are booked solid until JULY !!  So I'm not okay with just letting the wife suffer for five months waiting to see a specialist.  

So MY QUESTION IS----What can we throw at this to start trying to narrow in on a treatment...at least at the level of the PCP so we can get her some relief (because we've tried every antidepressant in the book and none help)?  My research says start with 15-30mg Armour (slowly stepping up) with of course exercise and diet positive changes.  Most of her levels are fine except for TPOA is off the charts, but she is HIGHLY and DEBILITATINGLY symptomatic.

Happy to add info or labs if you need/ask.  Appreciate the help.  

My plan that I've created on my own up to this point lol was just to have PCP (A) give referral to Endo in July, (B) referral for ultrasound of thyroid, (C) start the Armour "exploratory" trial.  (D) Already starting her on Centrum once a day, (E) Just ordered Selenium 200mcg 1xday and (F) just ordered Methyl B12 5000mcg 1xday.  

Anything else?  Does that sound great or terrible lol?  Appreciate your help.

[williegates]

THYROGLOBULIN ANTIBODIES    <1     (< or = 1 IU/mL)

THYROID PEROXIDASE ANTIBODIES 301     (<9 IU/mL)

T3, TOTAL 118   (76-181 ng/dL)

T4, FREE 1.2   (0.8-1.8 ng/dL)

T4 (THYROXINE), TOTAL     8.8         (5.1-11.9 mcg/dL)

TSH 2.51

T3, FREE   3.0    (2.3-4.2 pg/mL)

[gimel]

From the symptoms and the high level of TPO antibodies, your wife has Hashimoto's Thyroiditis.  With Hashi's the autoimmune system erroneously identifies the thyroid gland as foreign to the bod and produces antibodies to attack and eventually destroy the gland.     Since symptoms are the most important indicator,, before further discussion please review the following list with your wife and copy and paste the list in your reply, marked with an x on the ones she has.

fatigue                                                                                                
inability ot cope with stress                                                                          
cognitive dysfunction                              
hot flashes
hypotension, lightheadedness                                                                                                
depression
anxiety                                                                                                        
insomnia/frequent awakening
irritability
low blood pressure                                                                                      
body hair loss    
nausea, diarrhea or vomiting  
low blood pressure
unexplained weight loss
salt craving
mental fog/poor concentration  
cold extremities, always feels cold    
aches and pains
hair loss/dry coarse scalp hair
dry skin (use skin creme)
weight gain                                                  
constipation   (have to use laxatives/fiber)                                          
high cholesterol                                        
ankle swelling/facial puffiness                                                                          
hair dry/brittle/loss                                                                                
hoarseness                                            
                                                                          
                                                                                          

[williegates]

Thanks for your reply.  Here you go. :)

X    fatigue                                                                                                
X    inability to cope with stress                                                                          
X    cognitive dysfunction                              
no hot flashes
no hypotension, lightheadedness                                                                                                
X   depression
X   anxiety                                                                                                        
(used to a few months ago, not over the last month or two) insomnia/frequent awakening
X   irritability
no low blood pressure                                                                                      
X   body hair loss    
X   nausea, diarrhea or vomiting  
no low blood pressure
(no, opposite in fact) unexplained weight loss
no salt craving
X   mental fog/poor concentration  
X  cold extremities, always feels cold    
X  aches and pains
X  hair loss/dry coarse scalp hair
X  dry skin (use skin creme)
X  weight gain                                                  
no constipation   (have to use laxatives/fiber)                                          
X  high cholesterol                                        
X  ankle swelling
no facial puffiness                                                                          
X  hair dry/brittle/loss                                                                                
no hoarseness    

[williegates]

My plan (that I've created on my own) up to this point is to ask the PCP to do the following:

(A) give referral to Endo that we will see sometime in July....sigh....

(B) referral for ultrasound of thyroid (to ensure no serious abnormalities/growths/cancer/etc)

(C) start the Armour "exploratory" trial.  My research shows Armour is the least symptomatic option statistically.  Normal start is 15mg for 2 weeks, then pull full Thyroid panel, then 15mg added, wait for 2 weeks, then pull blood.  Rinse/repeat until symptoms go away or hyper symptoms appear.. My research tells me Armour should push the TSH level down to .5-1.0 while raising T3/T4 to upper half or third of scale.  This should improve symptoms.  (This is all research, googling, and med paper reading....I could be wrong, but this is my best guess.)

(D) ????

I've gotten on Amazon and bought the following and will be implementing it if not told to stop:

(A) already started her on Centrum once a day

(B) Ordered Selenium 200mcg.  Will be here tomorrow.  Will start her on 1xday as soon as it arrives.

(C) Ordered Methyl B12 5000mcg.  Will be here tomorrow.  Will start her on 1xday as soon as it arrives.

(D) ????


Possible tests to discuss with PCP/GP:

1. SIBO Test
2. Epstein-Barr Test
3. Iodine Level Test
4. Selenium Level Test
5. B12 Level Test
6. Celiac Test
7. Cortisol Test over 24 hour span
8. DHEA Test
9. Fibromyalgia Test (FM/a)
10. Ferritin Level Test
11. ????



Possible other options if Armour doesn't work or works negatively

1. Synthroid/Levothyroxine, start at 25mg, take for 2 weeks, test RT3.  If no improvement in other numbers and/or symptomology and RT3 is high, it's an absorption problem and add Cytomel 10mg.  If not absorption problem and numbers are going in right direction, continue stepping up Synthroid/Levothyroxine @25mg/2 week wait/pull full Thyroid panel....rinse/repeat until either hypo symptoms disappear and/or hyper symptoms appear.

2. (Last resort to rid her of all these horrible symptoms?) Remove thyroid and supplement everything.

3. ????

[gimel]

The list I gave you included both typical hypothyroid as well as hypocortisol  related symptoms.  Obviously your wife is hypothyroid.  It is not well known that female hypothyroid patients frequently have hypocortisolism also.   She also seems to have a number of low cortisol symptoms.  

I suggest that you slightly modify your plan as follows.  

>Get the ultrasound test of the thyroid gland as planned.

>As for medication, following is the recommendation of an outstanding hormone doctor.    "To initiate TRT with NDT in patients who are healthy and less than 50yrs. old, I start with 1/2gr of NDT (30mgs) and increase by 1/2gr every two weeks up to 1.5 to 2grs, depending on body weight. In elderly or ill patients or those with suspected hypocortisolism, I start with just 1/4gr and increase by 1/4gr every two weeks up to just 1 to 1.5grs daily. After 8 weeks on the full dose I check the TSH, FT4 and FT3. I reserve rT3 testing for difficult cases. I instruct patients to have their blood drawn in the morning, prior to taking the thyroid dose, and not much later than their usual dose time. This yields the 24hr trough levels—the lowest FT4 and FT3, and highest TSH levels that exist during a day. "  It is very important to defer morning dose of thyroid med until after the blood draw, in order to avoid false high results.  

>Get a diurnal saliva cortisol (free cortisol) panel of 4 tests done over the day.    Doctors usually will not order this, but instead want to do a morning serum cortisol (total cortisol) test, which is not nearly as revealing.  If the doctor won't order a saliva cortisol test, you can order a kit from ZRT Labs and do it yourselves.   If you do this, understand that being in the lower half  of the range along with multiple symptoms of hypocortisolism is confirmative, even if the doctor doesn't agree.   If you can get agreement to treat, then a total of 6 or 7  of the five mg pills of hydrocortisone should do it for her.  

> I don't think you need to do all those tests at this time.   I do suggest a DHEA-S, Vitamin D, B12 and ferritin.  Hypothyroid patients are frequently deficient in those.   D should be at least 50 ng/mL, B12 in the upper part of its range, and ferritin should be at least 100.  I think a B12 supplement should be more like 500 - 1000.mcg daily.

>Centrum is good.  Depending on whether there is possibility of osteoporosis, I have determined that taking 2 Centrum Silver daily, alon g with a Vitamin K2 will help build bone the natural way.  

I would not pin my hopes on the endocrinologist.   Most of them specialize in diabetes, not thyroid.  Most of them also have the "Immaculate TSH Belief" and use "Reference Range Endocrinology", which does not work well for most patients.   What you need is a  doctor that will diagnose and treat clinically, primarily based on symptoms, with extended testing beyond just TSH and FT4.   If you will tell us your location, perhaps we can suggest a doctor who has been recommended by thyroid patients.  And of course you will want a doctor who understands cortisol.  

If you want to confirm what I have suggested, click on my name and then scroll down to my Journal and read at least the Overview of my paper on Diagnosis and Treatment of Hypothyroidism: a Patient's Perspective.

[williegates]

Thank you, gimel.  Appreciate all the information and guidance.

((1)) Get Ultrasound -- will do.  Thank you.

((2)) Armor/NDT. Will do.  Start at 30mg, increase every two weeks by 30mg. After 8 weeks while at the dosage which produces the most minimal level of symptoms, check all the thyroid levels.
     ((A)) "Depending on weight"-- she is 240 pounds and in otherwise good health except for weight and thyroid/cortisol issues.
     ((B))  While reading about this issue and people's experiences, I noticed many people have had no effect from NDT by itself and need 10mcg of Cytomel to assure absorption of NDT.  Do you not recommend this? Or do you recommend after a certain amount of time with no results from only NDT?

((3)) Check 4-stage Cortisol levels. Will do. Thanks for the ZRLabs recommendation.  Found the test panel.  I will try to convince my doc to call it in, but he's a stubborn old guy who has only certain uses, and exploring new frontiers are not some of those uses lol.  I will post those results once I get them, either from my old doc or from my own labs.

((4)) Get levels checked of DHEA-S, Vitamin B12, and Ferritin.  
     ((A)) I found a Vitamin D level test from July 4, 2019 and the level was 19.  I asked the wife about it, and she said the doc had tried to tell her to supplement 10,000 units of Vitamin D.  She said after about 3 or 4 days of taking it, she felt extremely moody and "bitchy" and it made her feel like she was turning into a "raging *****" (her words lol).  So she stopped taking it and that feeling/symptoms went away.  

((5)) Centrum.  Keep taking it.  Will do.  There IS a possibility of osteoporosis because she took the birth control for quite a few years back in 99-03, the birth control that causes bone loss that they said not to take anymore and she stopped.  She used to be 5 foot 6 and ended up after 5-7 years being 5 foot 4, which her doc at the time said was probably bone loss from the birth control.  
     ((A)) I noticed you said TWO Centrum Silvers.  First, I got the normal Centrum 300 tabs from Amazon.  My wife is 40 so I didn't want her to feel terribly old and so I got the normal stuff.  Should she be taking TWO a day instead of ONE?  FYI, I will also get her some Vitamin K1 supplements ordered.

((6)) Thanks for the heads up about the endo.  I just don't want to waste my time waiting four or five months for a specialist who isn't going to help at all.  That would really really really **** me off lol.  A lot.  I appreciate the recommend to a decent doc.  It's so hard to find one and then wait four months to find out if the guy is worth a crap..sigh...  We live in El Reno, Oklahoma....That's about 15 minutes west of Oklahoma City, Oklahoma.  Anywhere in Edmond, Norman, Moore, Oklahoma City, etc would be fine.  Tulsa is about two hours away and too far for regular visits. Appreciate wholeheartedly the recommendation.

[gimel]

Responding to your list.

2A.  Weight gain/difficult to lose weight.      Hypothyroid patients typically  have below normal Resting Metabolic Rate.  The actual RMR depends on the severity of hypothyroidism.    There is a company I know about that developed a test for tendon reflex time as a measure of a patient's thyroid status.   It has been known for a long time that tendon reflex time correlated well with hypothyroid symptoms., but it was never utilized due to lack of reliable test equipment, I think.   This company established a tendon reflex time threshold for euthyroidism.  Patients that had a longer tendon reflex time and symptoms typical of hypothyroidism and relatively low FT4 and FT3 were treated as needed to achieve their recommended level of tendon reflex time.   They reported that the change in RMR averaged about 400 calories per day.    To assess the effect on a person you can use the formula for RMR, by which you could estimate that over an extended period, 400 calories per day increase would    cause a female to lose 400 divided by 4.35, which is about 92 pounds, assuming that diet and exercise habits
went unchanged.  

2B.  I know of no reason that T3 would need to be added to the Armour for absorption.   If the person was not getting an adequate effect, it was probably due to an inadequate dose, maybe because the dose was being determined by TSH levels, not by symptoms.

4A.  the 10,000 dose of Vitamin D every day is way too much, so she had a reaction.  If her D is as low as you mentioned, then I suggest 3000 IU daily and then re-test later.  D needs to be at least 50 ng/mL.    If not tested for B12 and ferritin it needs to be done and then supplemented to get B12 in the upper part of its range, and ferritin needs to be at least 100.  Ferritin is important for conversion of T4 to T3 and low ferritin can cause symptoms.  It is also necessary for good hair growth.

5.  Yes, two Centrum tablets plus K2.  I take 45 mcg of K2 daily.  

6.  I am sending you a PM with some doctor info.   To access, just click on your name and then from your personal page click on messages.  

[williegates]

Thank you for your information.  It is more informative than most of my doctors have been to be honest.  So sad really, that so many doctors don't care enough to treat the person.  

So far it's been a struggle.  My PCP is completely useless.  I (as the husband) see the same PCP.  My wife has her three month appointment next week, so during my three month appointment this week, I explained everything I have explained in the last posts about Wife even though it was my appointment.  I ran this by him to see if he was going to be of any help, and, if so, how much help he was going to be.  I told him in the end that Wife is probably going to need
((A)) a referral to an ultrasound,
((B)) tests for D, B12, DHEA-S, and Ferritin, and,
((C)) start standard treatment for her many symptoms by prescribing 30mg of Armour/NDT.  
((D)) I also told him I had ordered (out of my own pocket) a test for Diurnal Cortisol x4 (which arrived yesterday evening, will be administered Sunday, and will be shipped back on Monday (2/10/2020) to hopefully get results back by Friday (2/14/2020) and that she may need Hydrocortisone supplementation of 30mg-35mg evenly distributed throughout the day to treat those specifically applicable symptoms as well.  
((E)) I also explained the TSH levels -- the old ones from 20 years ago (0.50-4.50), the new ones from the American Kidney Association found more accurate over the last 10 years (0.50-2.50), and the ones found best for Hashimoto's patients by reports where those with Autoimmune Thyroiditis have been found most symptom-free (0.50-1.00).  

My PCP was absolutely worthless beyond belief.  So said.  He's 70-something years old and stuck in his old ways I believe.  I believe mentally he's not there to forge any new roads or learn any new information or treat individuals more than just check three-month boxes of "I saw patient, will see in another 3 months, blah blah blah....".  The answers were all bad...sigh....

This is what responses I got from him:
((A)) "A referral is best given by an endocrinologist" (even though I said it would be mid-May or June before I could get Wife into see one),
((B)) "Those tests have little impact and little to do with your thyroid...they are more promoted online for those 'natural rose petal extract anti-vax naturalist PAs who really have no business prescribing anything most the time with their snake-oil ideas (while laughing off my idea)." (This is even though I explained I read Mayo Clinic studies where incorrect levels of some of them produced hyper- and hypo-thyroid symptoms).
((C)) "If her TSH is within range, prescribing her needless hormones could kill her...bad idea....." (I don't believe that for a sec...in fact lol, I may have irritated him at that point because I made a passing comment about how "if the depression and anxiety of not being treated doesn't kill her first.").

CONTINUED (ONE OF TWO POSTS)

[williegates]

((D)) "Not to offend you, but you wasted your money.  I can call you in a Cortisol test [note: the total 'one-shot' that you spoke of earlier]."  When I explained it was a FOUR panel "over the day" test, he said, "Those are just so labs make more money. If your Cortisol levels in the morning are within range, they won't deviate much over the day and won't cause symptoms for the most part." (another truckload of dismissive BS I don't believe...so sad).  
((E)) "The 'old' TSH levels (-4.50) are fine.  The American Kidney Association or whoever said 2.5 is a better upper level probably found one study and is trying to trailblaze to attempt to remain relevant or promote membership.  I've found that even higher levels - like I have patients at a 6 or a 7...even a 9 - don't necessarily mean that anything needs to be done, but that's why as SOON as I see your antibodies are higher than where they should be, I just refer you out to an endocrinologist and let him deal with all that junk."  (So not only does he not believe in the "new" 2.50 levels, and as well does not believe in the Hashimoto's preferred ranges of 0.50-1.0, he seems like he doesn't even want to bother with making his patients feel better at all in any form, and it doesn't bother him that a patient he's treated for almost a decade will suffer severely for months waiting to see an endocrinologist.  I even told him that "she's really really really bad off, doc, and it can't really get any worse to be honest. At least we could throw a little something at it and see if we can get something...anything...positive out of it" and his response was, "I'm not throwing anything at it because when the endo does his own TSH blood tests, what I prescribe is going to alter that result".  My only protest was, "But an experienced endocrinologist is going to know if you are supplementing with..say..30mg Armour...what that will do to the tests and they can factor that in...and that's IF they even WANT to do their own tests...because we just did the TSH and all the T's and TPOab and everything just last week and that should work at least for a basic generic start point, shouldn't it?" And his response was, "I don't know what they want to do, so that's why I just let them do their thing and I stay out of it."  Obviously, ZERO interest in helping treat his patient.  

I returned home from my appointment and told my wife to cancel her three-month appointment next week and not to pay that lazy-arse "doctor" anything.  

So I called the Psychiatrist that my wife has been seeing for the past few months (this is the one that is much younger and seems to be more open-minded, but only to a certain point it seems, but much much better than old-arse PCP guy).  She's the one that I initially explained a month ago that we have thrown multiple antidepressants at this thing and they have little to no effect and I'm starting to think there may be something else at play, so I want to explore other options.  She has been more than helpful, and I have called her nurse every week with new ideas from my research and she has called in tests based on my requests, which is what led me to/allowed me to pull Estrogen/Progesterone levels and find them WAY off (Estrogen dominance by a factor of nearly 10), and then, through more research, led me to/allowed me to pull TPOab and find Wife's levels at just above 30-times the normal level of TPOAb.  Without the flexibility and her open-mindedness, I wouldn't be as far as I am now, so I like her a lot more.  

So I explained to the Psych the above info.  (Note: I should mention that when I say "I talked to the Psych", the Psych doesn't actually talk directly to patients on the phone.  She's busy seeing patients and she has her Nurse (PA I think)...we will call her "Brandy"....field all of her patient calls and pass the info onto her (her as in Psych gal).  It makes sense and I would probably do it that way too. So when I say "I talked to the Psych, I actually talked to Brandy FYI and so there is an assumption that Brandy spoke with Psych and told her the same thing I said to Brandy.")  I had not yet talked to the PCP, so none of the PCP encounter was included.  I just explained to Brandy about the list of things needing to be done to continue honing in on this problem (which was the list in yours/my post of things to get done).  

These were Brandy's responses:
((A)) "Yes, I will tell Psych to refer her for an ultrasound. No problem."
((B))  (Admittedly, I was driving at the time Brandy called me back (on Thurs of this week) and I didn't have the list of important stuff to talk about in front of me.  So I forgot to mention the D/B12/DHEA-S/Ferritin tests.  I will call her back on Monday and whenever she returns my call, I will ask and find out what she says when I ask her to run these.)
((C)) "As far as I know, Psych is not specifically knowledgeable about thyroid disorders and may not want to prescribe anything for this. She may want to wait until you see a specialist. (I told her the standard treatment is start 30mg of Armour/NDT.) I will ask her if she wants to do this and call you back. She may just want to refer you out to an endocrinologist, even though it will take two months for you to get in the door to see one."
((D)) (I told Brandy that I'd ordered a Cortisolx4 test from a lab to see if Wife needed to be prescribed 30-35mg of Hydrocortisone per day because of the symptoms that were hypocortisol-related.) "Okay, I'll let her know."
((E)) (I didn't talk to her about this because it wasn't relevant at the time.)

TWO OF TWO POSTS.  ONE MORE OF THOUGHTS MOVING FORWARD....

[williegates]

So....thoughts and actions moving forward:
((1)) I hopefully will have the Cortisol test results by this time next week.  Looking forward to knowing, and, as always, appreciate the assistance immensely.
((2)) I am not surprised at all at the "old" PCP's behavior.  He's been borderline useless for a while, so I should not have been surprised at all.  
((3)) I am, however, surprised at the "new" gal's - the Psych's - behavior, or at least her nurse's behavior.  We will see if the Psych's behavior mirrors the nurse's sentiments she expressed over the phone.  Hoping the Psych is not yet another doc who is too skittish and/or too ignorant to treat symptoms and not labs.....I will be VERY disappointed if the Psych ends up being another one like this. I had hopes she was going to be different.  
((4)) Of the two people you recommended, one does not take insurance.  If it comes down to it, I can afford this, but I'd rather not if possible.  The Family Medicine gal DOES take my insurance (BCBSOK), so I plan to call her this coming week.  I'm hoping it isn't a two-month wait to get in to see her.  It also worries me she's a "Family Medicine" specialist and not sure if she will also try to boot me over to an endo.  
((5)) I'm wondering if I'd be better off, at least for the immediate future to get Wife at least SOME relief, going to a place like "Balance Hormone Center in Norman, Oklahoma" (They have a website here: https://www.balancehormoneoklahoma.com/).  I've called them and talked with them.  They are all cash/no insurance (ewww) but I have a feeling they will do more the way Wife and I want done if we are paying out cash.  I'm wondering if we need to go to one of these "naturalist-type" places in order to get the out-of-the-box thinking that you have and we need. The "doc" is just a PA, not any type of a specialist, which is somewhat of a worry, but it does seem to be one of those places that treats the person, not the lab numbers.
((6)) Wife's Psych's husband is a PCP at the same office as Psych.  I told Wife to at least go see him.  He's 40-something first of all not 70-something LOL, and he may be more willing to play with numbers and treatments than old PCP guy.  Waiting for a call-back next week for an appt time and date.

So that's what's been going on at least on my end.  More to follow as I get it.  As always, appreciate the help and guidance so far.  

[gimel]

It is good that you have taken the initiative to get her saliva cortisol tests done.    That will give useful info to better understand her situation.   It is also very important that she get tested for Vitamin D, B12, DHEA-S and ferritin.   I would try to get those done anywhere you can:  the psych or wherever possible.

In view of how badly she feels, and the confirmed hypothyroidism, I think you should go ahead and get her started on Armour, if possible.    

I suggest that you go ahead and try to get an appt. with the doctor that takes insurance.   Just in case it becomes necessary I would also ask if the doctor treats patients with low cortisol.    I would also explain just how bad your wife is feeling and say that she needs to see the doctor ASAP, and also ask about getting on their appointment cancellation list.  

I would not bother with any Endo for which you did not have assurance of clinical treatment for hypothyroidism, instead of just based on TSH.  Also would want to know about treatment of low cortisol, if that becomes necessary.  Many doctors don't want to handle low cortisol issues.   To help with your understanding about the need for clinical treatment, I suggest that you click on my name and then scroll down to my Journal and read at least the Overview to my paper on Diagnosis and Treatment of Hypothyroidism:   A Patient's Perspective.  

[williegates]

Hey Gimel,

There is more to update, but it has been a long day and it is almost one am where I am.  I will update more info later, but for now, the Cortisol Test came in.  I will jump on here sometime tomorrow and update you with the other info...nothing spectabular or highly relevant, just stuff that has occured and looking for your judgement on what to do next or if something should be done to begin with....you know what I mean hopefully....:)

Without having yet started to research via Google, I don't know what I'm looking at or what to tell a doc to convince him if and or how much hydro-cortisone to supplement. I figure I'd let you get first crack at it fresh from coming in about three hours ago via email. Here's a link to the test results:

https://drive.google.com/file/d/1hGY0FPwBxLxOocvsVmP2thotw7f8kxCC/view?usp=sharing

As always, thank you for your assistance.  :)

[williegates]

Hey Gimel,

There is more to update, but it has been a long day and it is almost one am where I am.  I will update more info later, but for now, the Cortisol Test came in.  I will jump on here sometime tomorrow and update you with the other info...nothing spectabular or highly relevant, just stuff that has occured and looking for your judgement on what to do next or if something should be done to begin with....you know what I mean hopefully....:)

Without having yet started to research via Google, I don't know what I'm looking at or what to tell a doc to convince him if and or how much hydro-cortisone to supplement. I figure I'd let you get first crack at it fresh from coming in about three hours ago via email. Here's a link to the test results:

https://drive.google.com/file/d/1hGY0FPwBxLxOocvsVmP2thotw7f8kxCC/view?usp=sharing

As always, thank you for your assistance.  :)

[K9.lover]

Wow! You are such an amazing husband to be such a wonderful  health and medical advocate for your wife! If only more husbands were like you. Your interest in thyroid knowledge is impressive. If I understand correctly, your wife was totally fine in July and had all of her symptoms start in August? It sounds like something might have suddenly trigger her immune system. Can you think of anything in the months previous to August that might have triggered her immune system? Does she have allergies to pollen, plants, animals, or food? Has she had any recent illnesses? If you can determine if there is any trigger of her immune system that could be removed from her environment, this might help her to feel better.

I have Hashimoto's too. I second what Gimmel said about not bothering with an endocrinologist. They will only make her worse if she followed their advice. How about going to an naturopath or someone similar?

I know that 300 TPO sounds high and alarming. If it's any reassurance, the level of antibodies do not exactly always correlate with the severity of symptoms.  If they did, then when my TPO has been  20-25 times higher than your wife's, I would not be alive.  When my TPO was in the upper half of 5 figures, my TSH was 0.090, FT3 was 4.0, and my FT4 was1.35. I am a thin person with Hashimoto's.  Now, when my TSH was very high, my FT3 and FT4 were very low, and I gained 10 lbs until I got my medication sorted. I also do not have the more common low DHEA-s, mine is over range. I'd say on an average my TPO is around 1,500, and that is with me having no hypo symptoms. It's been slightly under 1000 several times, but not for long because something always triggers it to go up to around 1,500 again.This disease definitely effects everyone differently.

Another thing that I can say about selenium (frequently taken with vitamin E because they have a synergistic effect) is that it does not definitely reduce antibodies, at least not in my years of experience in taking it. I have been on 200 mcg selenium every day and still had antibodies at several thousand. Who knows, maybe it would be even high if I wasn't taking selenium at that time. There are a few studies out there that have shown selenium taken with inositol reduces antibodies. I'm not sure if there are positive studies done on selenium by itself.

Your wife's symptoms are mainly caused by FT3 and FT4 that are not at her best level. That will take finding the right dosage of the right medicine. She might not have a good reaction to NDT since she has Hashimoto's and some Hashimoto's patients cannot take it. They take Synthyroid and Cytomel, or generic T4 and T3 instead.

[K9.lover]

Has she been tested for diabetes and PCOS? Diabetes and PCOS can both accompany hypothyroidism or Hashimoto's.  She could have PCOS even if she doesn't have unusual body hair growth. Has she been tested for sleep apnea? Weight gain can cause sleep apnea, or sleep apnea can cause weight gain. Sleep apnea  and sleep disturbance deprives the brain of oxygen, and that can cause many of the symptoms you say she has. The fatigue, inability to cope with stress, cognitive dysfunction, depression, anxiety, irritability, mental fog/poor concentration,  aches and pains.


                                                                                              

[williegates]

Thanks for your info, K9, really appreciate it.  

No, I cannot think of anything that occurred then that would have triggered it.  Nothing.  We've seen the correlation before now, and both of us have searched our minds.  Never come up with a single thing.  No clue.  

She's got diabetes and PCOS. The diabetes appeared in August and we assumed it was caused by the Hashimotos.   She's had PCOS her whole life, diagnosed at 14 I believe....may have been 15.....never caused any symptoms except crazy periods her whole life.

The new PCP we have put her on 25mcg 1xday of Levothyroxine for Hashimotos, 1000mg 2xday Metformin for diabetes, 5000u 1xday of D3 since her D was low, 375g 1day of Phentermine for weight loss, and 1000mg 2xday fish oil for slightly elevated triglycerides.

She's been on this new regimen for a week with zero improvement.

[gimel]

The saliva cortisol test results do not confirm any concern.  So I suggest that you proceed to make sure she gets the additional tests done: Vitamin D, B12, DHEA-S and ferritin.  Also have you followed up on one of the doctors I suggested in the PM?   I think you can have much more confidence in that doctor.
  

Your wife needs to continue to increase her thyroid med, with the objective of symptom relief.  That will likely require a number of dosage increases to get her FT3 high enough, which is difficult with T4 med only.  I suggest that you ask her doctor if he is willing to increase her dosage enough to relieve hypo symptoms without being influenced by resultant TSH levels.  Also ask if he is willing to prescribe T3 med if needed to get Free T3 levels into the upper half of its range.     If the answer to either is no, then you are wasting your time there.  Also ask the doctor about the high estrogen.  If the doctor agrees it is too high I understand it can be reduced with very small amounts of a prescription med called Anastrozole.  

[williegates]

Hey Gimel, thanks for the reply.  

I did call the new PCP two days ago and asked him how long he sees he needs to wait on 25mcg of Levo before he decides to do something else given no change in symptoms.

He did state that the literature says it takes 6 weeks for levels to stabilize (and this is reflected in my googling, so he's not completely wrong, but I know how literature and real-life can differ).  So I pressed him for an increase in 2-4 weeks (she's been on it for about 9 days now).  He said, "We pulled her labs about 9-10 days ago (two weeks now), so we will probably pull her labs 8 weeks from that time (eta about the middle of April) and see where her levels are at.  They are technically normal now, but her normal may not be everyone else's normal, and that's why she's having symptoms.  I'm cognizant of that normal means different things to each person. That's why I started her on the thyroid meds, to see if it treats the symptoms."  So he's kinda sorta saying what I wanted to hear and kinda not.  Very wishy washy.  And I don't like the 8 week wait for another 25mcg....

Not the detail you suggested though.  I will follow up when I see him next.  I think there is an appointment scheduled for like 9 days from now.  

I also asked him about the Vitamin D, B12, DHEA-S, and Ferritin.  He said, "I prefer to focus on the larger more likely issues, such as the diabetes and the excessive weight.  I believe she is suffering from metabolic syndrome and that's a lot of why the Metformin should start helping her.  Once we get those under control and get at least some Levo into her, and if then we are still not seeing the differences we would expect, then I will go hunting for the little obscure things that may be causing it."  I don't like the response, but that's what he said.

We have an appointment with an OBGYN specialist on Tuesday, March 3rd, to discuss the estrogen dominance.  

Of the two people you suggested, the one in Edmond (I think off the top of my head) takes no insurance. So not a good thing for us.  I did call and verify and yea, he doesn't.  It was like $150.00 to do initial appt plus $200-$300 for blood work....already more than I can really afford or honestly want to spend. The other one, the gal in Midwest/Del City, does take Blue Cross/Blue Shield of Oklahoma, and we have a call into her for an appointment to be scheduled.

As always, appreciate the help and guidance.  We are both following what you say pretty damn close to the letter.  If only it was easier to find docs worth a crap or that could be questioned as to what they will or won't do before making and waiting for appts to come up......

[gimel]

Thanks for the update.  

I think metabolic syndrome is a label they use for weight issues, rather than focusing on the most important part of that, which is low metabolism related to low Free T3 and Free T4 levels.    There is also a need to test for Reverse T3 along with the Free T3 so that the ratio can be determined.  If I haven't mentioned it there is a company that makes equipment to test for tendon reflex time, since it is a well known indicator of thyroid status.   That company claims that the difference between severe hypothyroidism and euthyroidism after effective treatment averages about 400 calories per day in the Resting Metabolic Rate.   That amount of increase in RMR would result in a huge weight loss over time.

The Vitamin D B12 and ferritin also have a significant effect on thyroid and symptoms.  

Please let us know if you are able to get her in to see that doctor soon.

[williegates]

As far as the remaining labs of Ferritin, DHEA-S, and Vitamin B12, I feel it is more expedient and cost-effective enough to purchase these tests online and less aggravating than fighting the docs.  I found walkinlab *******, who allowed me to order online and walk into a Quest/DLO center nearby (same one I go to every time I get tests from my PCP in fact).  These folks had A WHOLE BUNCH MORE available tests than ZRTLabs. Easier to search for the right ones too.  Faster because no shipping needed to and from.  Cheaper by a little bit too....maybe 20%.  I'll let you know what my experience is like, however.  

As far as the Vitamin D goes, it was just tested a month ago and the level was at 19.  I have currently supplemented her with 5000u 1xday.  I will probably wait on the Vitamin D one (it's $50 all by itself) and since it was just tested, it  and not having to ship it to me and back again is much quicker as well.    

I may just wait until they test Vitamin D again via PCP.  I do not believe a suboptimal level of D would cause the majority of symptoms.  It may still be suboptimally low, but I don't think it would be horribly low........since it is a 19 + 5000u a day equals 60-80? - bad D level would cause all these problems.  I'm sure it may still need to be fine-tuned, but I'm focused on the bigger stuff first.  If I'm completely wrong, then tell me.  I don't think I know it all LOL....I'm just trying to be efficient here.  Your feedback is always appreciated.

[gimel]

I agree.  I did not mean to imply that you should focus on D, B12 and ferritin to the exclusion of her thyroid levels.   Those are the most important.

[williegates]

Okay, good, lol.  I didn't want you to think I was acting like I have any idea what I'm talking about, so I'm glad you took that correctly and with accurate humble intent. :)

I bought the B12/DHEA-S/Ferritin tests through that site for about $110 total, which is a pretty good deal in my research.  Impressed so far.  They emailed me a PDF "order" that I just give to the lab (or fax as well).  

Wife is going to stop by the DLO lab tomorrow.  She is signed up on Quest for her online account for results, so we will get them as quickly as they can produce them.  

Other than a single Centrum per day and the minimal increase from each of these , I have not directly supplemented (or indirectly to my knowledge) any other B12 or Ferritin, although I have both.  I waited because I REALLY interested in obtaining an initial "baseline" before supplementing because I felt it may be useful later, possibly for diagnoses (or even possibly for some reason I may not even be able to anticipate at this point).

Anyways, thank you.  I will keep you informed.

As always, appreciate your help, assistance, and guidance. :)

[williegates]

Quick question:

Iodine supplementation?  As in 12.5mg tabs 1xday from Iodoral/Amazon?  Seen really good things about this thyroid-wise and then some say Hashi's could be aggravated by it and/or hair loss accelerated?  Your thoughts/experience?

Thanks :)

[gimel]

I have no personal experience with it, but from what I have read, I would not suggest supplementing with iodine when Hashi's is involved.  Typical of some info you can is the following quote from a well known thyroid doctor.    "Initially, the person has more energy, but they then crash and feel worse… This is because iodine given to a subset of people with Hashimoto’s can flare up the attack on the thyroid gland. Iodine needs to be processed by the thyroid gland, and when the thyroid is inflamed, the processing of iodine will likely produce more inflammation. You give an angry and overwhelmed organ more work to do, and you’ll likely see it become even angrier! "

[williegates]

Okay, thank you! Thought as much, but again, I know nothing, so I ask the expert lol.  

Also, sadly, I spent a few hours researching the tendon test.  It has been marketed as Thyroflex.  There's a website with just that name.  It has a list of locations that currently offer this test.  Irritatingly, there is no location in Oklahoma (/facepalm).  But others may be able to benefit....there ARE a BUNCH of other states there.  Worth checking out for those who may want to get this test done.