what tests should be run

[kevieb]

i haven't been on in awhile--i had twin daughters get married--one the week before thanksgiving--the other the week before christmas--and a double reception between the two.  then my husband had surgery on the tuesday before christmas.     i have not been able to get back to the endocrinologist--things were just too hectic.  they would only refill my hydrocortisone once until he saw me again--my local doc's nurse said they wouldn't fill it because they didn't fill it originally---so i have slowly just kept weaning myself off of the meds myself.  i am down to 5 mgs every other day---i could probably quit at anytime now and be ok.  i have one week left of my armour thyroid--don't know what to do about that. it was originally written out by the first endo i saw--not my family doc or the second endo--so no one is going to want to mess with that--not sure i want them to anyway.  the newest endo i saw never took any blood work---i'd kind of like to start with a fresh slate as to what my body is actually doing if i see him again--not convinced i really want to.

i've been doing a little research and discovered that all my thyroid tests were done using the old lab guidelines---even though they were changed in 2002.  also, the first endo started me on thyroid before checking my adrenals--i've learned this is not the right way to do it---no wonder i never felt any better with anything she did---she probably overwhelmed my adrenals and they never had a chance to catch up.

i am exhausted--only good for a couple of hours a day, my joints hurt, my muscles hurt i cry every day--basically i am a mess!!  i'm so cold, too half the time and my feet feel like ice when i take my socks and slippers off. my hands are always cold when i get to church--and i play the piano for the first meeting.  i'm just feeling frustrated with the doc i have to deal with.

my sister is dealing with a doc in conn. that seems to be doping her alot of good.  i emailed him and asked for his articles--he replied within the hour and told me that all of my symptoms could very well be caused by thyroid and adrenal insufficiency--including my carpal tunnel. (i already knew that one) he told me someone to call that might be able to find me a doc who treats the same way he does closer to where i live--and if i can't get any help--he said he has a busy practice, but he would try and help me--but i'd have to get to connecticut at least once to see him---got to figure out how to come up with themoney for that one if needed.

just kind of venting today, i guess.  i am exhausted all the time, have a horrible time finding a position to sleep in that doesn't make my left arm or fingers go numb--but sleeping on my right side makes my shoulder ache!  i have no desire to do anything--not even cook or eat--but i've got to feed my kids!!

i need some positive feed back

[kevieb]

i spent several hours the other day taking all my labwork and chart notes and organizing them according to date---thats when i realized how many times my meds ahd been changed--or were supposed to have been changed---there wasn't even a chart note from the last time i had seen my first endo--the one that was so unorganized---she was suppoed to have sent all of my records--they came in such a disorganized mess with multiples---and no running ledger of my visits like i have seen other doctors keep.

i still can't figure out why there was so much discrepency over how much armour i was taking---or why my PCP changed the level in october without even doing any testing.  i don't know why the second endo had me listed as taking 30 mcgs of armour when the prescription records show i had been filling 60 mcgs for about a year---i wonder if i told him that's what i was taking by accident--but i thought i brought all my meds with me like they told me to.  of course, he could have looked at the last report from my old endo---but it was dated 1-18-2010 and still said i was taking levothyroxine----and the whole thing about him saying i told him i was only taking half of my dose because i had the shakes and some other symptom is just weird---i don't remember anything about that and neither does my daughter , who was with me.

the last blood work that had been done on me showed that my testosterone was down to 1.7---with the range being 1.1--to 5.8----obviously i was getting really low again--i was hoping the new endo would test my levels, because i had no sex drive again---i'm sure by now they are way below range.

what do you think of the basal axillary temp being used in helping to diagnose low thyroid?  i have tested 3 times over the last several days.---97.4, 97.5, and 96.4.   i always knew my temperature was about a degree below normal--but i didn't know how low it actually dropped at times---i suppose that would explain why i get cold---and maybe the cold hands and feet.

[rumpled]

A psych changed your thyroid?
I do find all this confusing - like you do... you really need a good doctor - and to maybe put the tests in a chart with date and time on them... with notes.

I don't know how to help you but I wish I did...

[kevieb]

oops, the doc switched my T3 from 60 to 30--not 3.

[kevieb]

oh yeah, after organizing my labwork and doctor reports by earliest date to latest date---i could see why i have never felt better.  there were so many changes made in my medications, both types and amounts, i don't think my body has ever had a chance to let itself adjust to anything.   i could see a change in armour amount listed by the doctor---that was never called into the pharmacy--then the next month her report listed me as taking the lower amount---i think she forgot she wanted to raise it, never called it in, and then didn't look at her previous report where she had raised it.    then she switched me from 30 armour to 50 levothyroxine---i had to request T3.  

when i saw the psych, my thyroid hadn't been checked in awhile, so he ordered the test--but another doc read teh results (low T4 and low TSH) and dropped my loevothyroxine to 25, next test he ordered an outdated test--lab had to tell him and then run the right one--both T4 amd TSH were still low, so he dropped my levothyroxine completely and  dropped my T3 from 60 to 3. next test had low T4 but a normal TSH---my hair was falling out by this time--the psych saw my test results and put me on 60 armour.

My prescription records show that i was getting 60 armour until october of this year--when my PCP changed it to 30 armour.  nobody had tested my thyroid, the office checked my record and said it gave no reason for why my armour was lowered.   the second endo had seen me in late june/early july and his notes said i was taking 30 armour an that i said i was having shakes and something else so i was only taking 1/2 my dose--i have no idea what he was talking about---except that he had looked at my hand and said i had a slight tremor--it was very slight.  my daughter was with me and remembers my version of the visit.   when the endo was having me lower my HC, i did have one month when i was waking up with the shakes and getting times when my heart would pound--so i took 15 armour for about a month--then went back to 30 for the next month without a problem.  once i was basically off the HC, i have hd a couple of times when i have gotten the shakes and the heart pounding again----but not regularly.
i think it is a cortisol problem and not a thyroid problem--or maybe a combo of both.

if you found all that hard to follow---you have some idea of why i am struggling with what to do, who to see, who to believe, and why i am feeling like crap!!!!

[kevieb]

i've seen alot of this similar info when i was trying to look it up--but it all is referring to ongoing therapy and the need to taper down to avoid shutting down the adrenals---i had a hard time finding much of anything that referred to a onetime shot.  i did finally find something that said it could take 30-40 to completely clear the system--but it also said it could be sooner.

if it were to take a full 40 days to clear, does that mean that your adrenals would be completely affected for the full 40 days, or would the effect lessen over time as you approached the 40 days.

My cortisol level was already down to 6.3 before the shots and my ACTH was down to 9---so both of them were nearly at the bottom of the normal range--which looks to me like my adrenals were already having a hard time functioning because they were not getting enough ACTH.

I also had low DHEA, low testosterone, and high sex hormone binding globuline--my estrogen was 1159---which is extremely high--but my obgyn felt like it was a surge from ovulating, although he said he had only seen it that high a few times----it has been normal since then---i think it was just a fluke surge--probably because of my age.  The endocrinologist i talked to online from UCLA told me that he didn't feel like the shots would have shut my adrenals down like that, but he did say that even if they did, it should not have affected my other hormones.

i went through all my labwork and doctor visit reports yesterday to get them in order for seeing the inernist next week.

I noticed that even when i was on 30 mgs of HC, 50 mg of levothyroxine, and 60 mcg of T3,  my cortisol level was only 7.3 (range 2-23)  DHEA was 11 (range 56-283) my Free T4 was .67 (range.71-1.85) my Free T3 was 4.0 (range2.4-4.2) my TSH was .06 (range .45 to 4.67) and my T3 uptake was 33 (range 28 to 41)  

If i'm reading things right, it looks like everything was either flagged as low, or in the low-normal range---except my Free T3.  this was when the doc decided to lower my levothyroxine to 25 mgs---he was trying to normalize my TSH, i guess---he didn't seem to pay attention to the fact that my T3 levels were pretty good.  I'm thinking that this shows that my TSH is totally unreliable, which would help to confirm that my pituitary isn't reliable---since TSH is a pituitary hormone---or for some reason my blood serum levels of T3 were high, but that something is keeping me from being able to get the T3 from my blood into my tissues---because none of my symptoms had improved.  also, i can't figure out why my cortisol would be at the low end while i was on HC--the level was drawn  at (9:44 in the morning, so they should not have dropped that much from their highest  morning levels yet.

I've seen the same strict protocol about stim tests that you have on different sites--but i have seen other sites that were really lax about how the stim test was done.  and, i had one endo that was very strict about the protocol being followed, and another that didn't come anywhere near to following even the lax prtocol--didn't seem like they followed any protocol.

I did find out that the second endo apparently did not see that my cortisol and ACTH were both low before the steroid shot.  He sent a note to my PCP and said he thought the AI was caused by the shot--but he had made no note in my records that my levels were very low before i got the shot.  i think he didn't read the lab reports carefully. if you glanced at them quickly, you saw an obvious date in the corner that was telling  the document date and the print date (two different dates)  but you had to read through the finer print to see the collection date and time.  however, the low cortisol showed the correct date for the document date.

when the cortisol showed up low, she ran the ACTH 2 days later, so the print date made it look like it was tested after my shots--but the fine print showed it was tested before the shots. plus, this guy did not hav any actual dr. report telling when i actually got the shots, who gave them, or how much i was given---he was only going by what i told a woman in the office to tell him----just seems a little unprofessional to me.

Hope all that made sence.

why is it that you take a combo of T4 and T3 rather than armour--do you feel you are able to adjust it to what your own body needs that way?

I would never take more armour than my doc prescribed, but i have read alot about how docs used to diagnose by symptoms only, since there were no tests available--and natural thyroid was the only med available.  They seemed to have alot more success with eliminating symptoms for people.  after they came up with the TSH and synthetic T4, they would treat people using the TSH and give them T4 until their TSH  was "right"  but people were still having hypothyroid symptoms.

I've also read that for various reasons, some people cannot take armour and need to take T3 only.  it's really hard to try and figure this all out---especially where i have adrenal function,looking like it is caused by hypopituitarism, to deal with.  i have become extremely frustrated by so much conflicting information.

[rumpled]

I travel 6 hours one way and have traveled to LA, Seattle, Ohio etc. to get help. It simply pays to get expert help. However, no one doctor fits all - the doctor that I like may or may not suit you - aka personality or insurance issues. I had to see multiple doctors to find one. Even locally, the doctor I see has both good ratings and bad - so you just can never tell! I have waited to see top docs in magazines only to hate them - but others obviously must love them.

I would say look for info on pubmed, NIH and sites that publish medical papers. The freezing part of ACTH is on the actual lab site instructions as well as some papers. I have heard differing instructions on the stim test - some like a double - some shoot for a specific number. I never could understand if it was the doc, or the stim agent.

Re shot - here are the precautions:
"Precautions:

Intra-articular injection should not be carried out in the presence of active infection in or near joints. The preparation should not be used to alleviate joint pain arising from infectious states such as gonococcal or tubercular arthritis.

Undesirable effects may be minimised using the lowest effective dose for the minimum period, and by administering the daily requirement, whenever possible, as a single morning dose on alternate days. Frequent patient review is required to titrate the dose appropriately against disease activity. (See dosage section).

Adrenal cortical atrophy develops during prolonged therapy and may persist for years after stopping treatment. Withdrawal of corticosteroids after prolonged therapy must, therefore, always be gradual to avoid acute adrenal insufficiency and should be tapered off over weeks or months according to the dose and duration of treatment. During prolonged therapy any intercurrent illness, trauma or surgical procedure will require a temporary increase in dosage. If corticosteroids have been stopped following prolonged therapy they may need to be reintroduced temporarily.

Patients should carry steroid treatment cards which give clear guidance on the precautions to be taken to minimise risk and which provide details of prescriber, drug, dosage and the duration of treatment.

Suppression of the inflammatory response and immune function increases the susceptibility to infections and their severity. The clinical presentation may often be atypical and serious infections such as septicaemia and tuberculosis may be masked and may reach an advanced stage before being recognised.

Chickenpox and measles are of particular concern since these normally minor illnesses may be fatal in immunosuppressed patients.

Unless they have had chickenpox, patients receiving parenteral corticosteroids for purposes other than replacement should be regarded as being at risk of severe chickenpox. Manifestations of fulminant illness include pneumonia, hepatitis and disseminated intravascular coagulation; rash is not necessarily a prominent feature. Passive immunisation with varicella zoster immunoglobulin (VZIG) is needed by exposed non- immune patients who are receiving systemic corticosteroids or who have used them within the previous 3 months; varicella-zoster immunoglobulin should preferably be given within 3 days of exposure and not later than 10 days. Confirmed chickenpox warrants specialist care and urgent treatment. Corticosteroids should not be stopped and the dose may need to be increased.

Patients should be advised to avoid exposure to measles and to seek medical advice without delay if exposure occurs. Prophylaxis with normal immunoglobulin may be needed.

During corticosteroid therapy antibody response will be reduced and therefore affect the patient's response to vaccines. Live vaccines should not be administered.

Patients and/or carers should be warned that potentially severe psychiatric adverse reactions may occur with systemic steroids (see section 4.8). Symptoms typically emerge within a few days or weeks of starting the treatment. Risks may be higher with high doses/systemic exposure (see also section 4.5 pharmacokinetic interactions that can increase the risk of side effects), although dose levels do not allow prediction of the onset, type, severity or duration of reactions. Most reactions recover after either dose reduction or withdrawal, although specific treatment may be necessary. Patients/carers should be encouraged to seek medical advice if worrying psychological symptoms develop, especially if depressed mood or suicidal ideation is suspected. Patients/carers should also be alert to possible psychiatric disturbances that may occur either during or immediately after dose tapering/withdrawal of systemic steroids, although such reactions have been reported infrequently.

Particular care is required when considering the use of systemic corticosteroids in patients with existing or previous history of severe affective disorders in themselves or in their first degree relatives. These would include depressive or manic-depressive illness and previous steroid psychosis.

Special Precautions:

Particular care is required when considering use of systemic corticosteroids in patients with the following conditions and frequent patient monitoring is necessary.

Recent intestinal anastomoses, diverticulitis, thrombophlebitis, existing or previous history of severe affective disorders (especially previous steroid psychosis), exanthematous disease, chronic nephritis, or renal insufficiency, metastatic carcinoma, osteoporosis (post-menopausal females are particularly at risk); in patients with an active peptic ulcer (or a history of peptic ulcer). Myasthenia gravis. Latent or healed tuberculosis; in the presence of local or systemic viral infection, systemic fungal infections or in active infections not controlled by antibiotics. In acute psychoses; in acute glomerulonephritis. Hypertension; congestive heart failure; glaucoma (or a family history of glaucoma), previous steroid myopathy or epilepsy. Liver failure.

Corticosteroid effects may be enhanced in patients with hypothyroidism or cirrhosis and decreased in hyperthyroid patients.

Diabetes may be aggravated, necessitating a higher insulin dosage. Latent diabetes mellitus may be precipitated.

Menstrual irregularities may occur, and this possibility should be mentioned to female patients.

Rare instances of anaphylactoid reactions have occurred in patients receiving corticosteroids, especially when a patient has a history of drug allergies.

All corticosteroids increase calcium excretion

Aspirin should be used cautiously in conjunction with corticosteroids in patients with hypoprothrombinaemia.

This product contains 15mg/ml benzyl alcohol and must not be given to premature babies or neonates. Benzyl Alcohol may cause toxic reactions and anaphylactoid reactions in infants and children up to 3 years old.'"

It says the half life is 88 minutes - but I thought it was more like a pred or dex type med - in which case it was more like this "The half-lives of the injection amount in the vitreous, 4-mg TA-PF, 16-mg TA-PF, and 4-mg Kenalog, were found to be 24 days, 39 days, and 23 days, respectively. " I found that on pubmed. In which case 18 days was too soon.

Re armour - you should never take more of a prescribed (or OTC) med than mandated - and thyroid meds can effect the heart so.... ah... while I would personally like my levels to be higher - I still like a T4 T3 mix to get it up there.