I was diag. Auto.hash.hypo dec by endocrinologist who is very well acquainted with my primary care dr. And post cancer dr.....
Prev. 6 month primary care had inc. synth from my usual 0.125 to 0.137 because tsh 10...
I was on that dose by my pain dr for a yr but my ins. Did not require primary care..so enter primary care who does the above..
Can't remember crap about it because my husband retired early, stressing me and blah blah
I had breast cancer 2005 and my post cancer dr had referred me to his young protege primary care, blah blah
When primary care got my tsh down, he got dose of synthroid back to 0.125 AGAIN...
I was at 6 mo check up with cancer dr and he said..aren't ya glad ya got that thyroid back to normal..I thought..yes..wasn't it great that my cancer dr knew...
Well..I had 6 good days at o.125 and then...blammmo... I felt like crap! I was sweating to beat the band and my thyroid dr poo pood my concern about thyroid screwed up and......
I went back to cancer dr who said...go off all anticholinergics..only one that really can cause some sweating problems is amitriptylline which I took for neuropathy pain..I said I would..then cancer dr scheduled me for pet scan which showed nodules I had never felt...but no thyroid cancer.(.he also had done antibody test)....4 wks go by..my cancer dr saw me at2wks..puzzling me...
So after pet and thyroid antibody showed nodules and increase thyroid antibody.....post cancer doc said would you like to talk to an endocrinologist, I said sure..he scheduled me and the nice endo checked nodules, with ultrasound..said they looked ok..of course after that they hurts like heck..endocrin.nurse called 3days said decrease by 1/2 tab a week.the o.125 they knew I had been taking...did not call in new script or anything..
Three and 1/2 weeks later I called my primary for refill of synth 0.125, he had prescribed..and he called in refill of my 0.137... Without calling me or anything..no new blood tests or anything...and endo?
I figured 3 weeks would have allowed primary to get report from my endocrinology consult....and I wondered why would he call in a new rx when I had called in for refill of 0.125?
Are ya following or just flaked out and confused like me?
I called primary care nurse and she said, well why didn't u tell us u were seeing new dr? I said I wasn't..just got a consult....
Anyway my primary just refuses to treat anything but my cholesterol.now.....and he had called my pain issue..an "addiction'..I thought well..that is blatant ignorance as he knew my pain issues...
I have been so terribly weak and sweating I do not know what to do..
I have appt with him tomorrow as I need his referral for a Pedundal block specialist..
Lordy..what can I do?
The endocrinology nurse said they do not deal with bmi, etc.and I only had 2nd blood draw from them 1 month ago...their report 2 wks ago was was to decrease......that I should go down another 1/2 tab a week..
My body, my health is failing..
I had left lumbar block last thurs to take care of pain in left abd.lumbar plexus, have had..3 years ago ablation of sacral 1 thru 5 lft and rt...which alleviated facet joint arthritis and Pedundal issues..those blocks have worn off..
Sound like I am not trying to attack the pain?...I am..
Part of sweating could be my attacking pain by lowering opiate dose to nil and trying blocks..but I feel that my thyroid being so low and nobody fighting to help me look at t4conversion, etc..cause my thyroid, with hash. Autoimmune is going caput..right..
Well thanks for any answers cause I haven't been able to get my sheets dry or wear any clothes that do not get drenched in minutes!
Looks like you have too many doctors involved in your thyroid care.
What are your latest thyroid test results? You should have TSH, Free T3 and Free T4. If your doctor did not give you a copy of the report, you should ask for one. In the U.S. doctors are obligated by law to provide copies upon request. You should always get copies of any labs and other tests, for your own records.
Many doctors do not coordinate with other doctors, regarding a patient's care. I find it much easier to take all the reports to doctors involved, myself.
We'll be able to better assess your situation once we see what your labs look like. Be sure to include reference ranges with any lab results, since ranges vary lab to lab and have to come from your own report.
Thank you oh so very very much.....
I will go by endocrinologistvoffice tomorrow and get copy..
I asked my primary care if he wanted to take over my thyroid again..he said
Ahhhhhh, well the endo. Has ultrasound in office for nodules, etc..
So I go to one of the best endocrin. In area..but he is 71 and travels around world and lectures, etc..but his many young drs. At office seem to be a possible challenge..as I asked them last month if they did any metabolism studies, etc..
I think by keeping in touch withvthisvforum..thank you from the bottom of my heart...I will challenge them..
I looked up just endocrinology..on google and there was an article that the need for endocrinologists is unreal!
I never thought I would have a thyroid problem..if I can get my arse out of bed And get some understanding friends..hopefully I can beat this thing...by walking, etc.
I have neuropathy pain and am decreasing doses of opiate to 65% les than it was before thyroid problem started..am using on an almost just as needed ...
I got my primary care to give me an rx for robinul..an old med for hyperhydrosis..took him 5 minutes to find..on his office computer he never stops typing on..but I will try it as needed and see if a little helps my drenching sweats..
Keep in mind that even good endocrinologists are not always good thyroid doctors. Many endos specialize in diabetes, not thyroid.
None of us ever really thought we'd have a thyroid problem, but here we are.
Thyroid nodules are very common with Hashimoto's and are usually nothing to be real concerned with unless they have odd physical characteristics. It was a good idea to do the PET, since you've already had cancer.
Do you know if your B12 levels have ever been tested?
Sorry, I did not get to endo office...last Monday,
Sweating so bad and weak, got to primary care for his ok for me to find pedundal spec.,
then to pain dr. as he is seeing me every 2weeks to help me adjust pain meds..and I was too late to get to endo. Office..
Tomorrow I will somehow..
And, where/ who do I ask for B12 level lab work...
I have had vit.d level checked when my primary does cholesterol check..I take 4,000 iu vitamin D3daily as ordered by prim.care OTC..
and i take 5,000iu m.cobalamin via dropper full daily..with 4 1,ooo omega-3
Any doctor can order a vitamin B12 test. You primary care doctor should be willing to order it. Some people don't absorb B12 well, so whatever is taken by mouth is sort of a waste. I have to inject weekly in order to get adequate B12.
I hope you get in to the endo today, so you can get your labs. I'd really be interested in seeing them.
Yep, got labs at least last one...and yes, ....I eat little meat..vit b12 check...will request...
Anyway....see I had dates a little fouled up but...
Up until jan 2011, my synthroid dose 0.125mg daily for at least a couple of years...( pain doctor prescribed...I do not have labs but he did them....
I was then required by ins. To see primary care doctor..
January 2011 ...TSH 10.64.....primary care doctor had taken over.and he .prescribed
Synthroid 0.137 six days a week and 0.112mg on day seven.
November 2011.... TSH 0.18 and in January primary care doctor prescribed
Synthroid 0.137 six days a week o.125 on day seven
May 2012.........TSH 0.35 and in June primary care doctor prescribed synthroid 0.125mg daily
July 2012......TSH. 1.18 and I was feeling crappy..synthroid 0.125 daily
August 2012. TSH 0.33...synthroid 0.125 daily..still felt crappy but that was when I sought cancer dr. Advice...
Pet and thyroid antibody test done.....antibody test positive
I was referred to endocrinologist by my cancer doctor...as I had asked his help I felt terrible..
My white count was elevated ....per cancer doctor..
My husband kept a diary of TSH. When it was TSH10...so that is how I know dates .....he said that is about when i went wacko..was very very depressed...I know that many doctors , he is not one, ...do not bother with TSH... when TSH 10.0 I was forgetful and very depressed.
I felt more alive on 0.137mg synthroid but I knew something just felt wrong..
I do not have original test results by endocrinologist in I guess November 2012 ...after that draw, he Decreased synthroid 0.125 by 1/2 tab on day 7 and diagnosed auto.hash.hypothyroidism....My husband at least got this lab which is
Collected 1/18/2013.......... . By endocrinologist....
TSH. 0.22. ......abnormal
Free T3. 2.9. Reference range. 1.5-4.1
Total T3. 91.6 65.0-185
T3 uptake 29.3. 25.0-40.0
Total T4. 12.0. 4.5-12.5
fTI. 3.52. 1.13-5.0
After this result, I was told to decrease synthroid 0.125 by another 1/2 tab a week.....
So I take synthroid 0.125 mg daily but none on day 7..
I am on my lips tired....have narcolepsy mild according to a sleep study..and sweat soooo badly..
take modafanil 100 mg ..1 to 2 a day in morning..to get up or rather awake...
Well, barb ..thank you so very much for your help....I really truly bless you all from the bottom of my heart..
Quick search for modafanil, and I see that sweating is one of its side effects, so that could be your culprit there.
If your endo is decreasing your thyroid med, it would appear that he's going more by TSH than anything else. Free T3 and Free T4 are the most important tests. FTI is a calculated FT4 result but it would have been better if he'd simply done an FT4 test.
Your FT3 is just about mid range; rule of thumb is to have FT3 in the upper 1/3 of the range. Your FT4 is 61% and rule of thumb is have FT4 at about mid range, so your FT4 is higher than most people feel comfortable and your FT3 is lower. Those results indicate that you have a conversion issue and might benefit from a low dose of med with a T3 component, such as Cytomel or a desiccated hormone.
Confused yet? Thyroid 101
The pituitary gland is the master gland of the body. When the pituitary senses that there's not enough thyroid hormones, it produces TSH to stimulate the thyroid. The thyroid, then churns out T4 and T3 hormones, but mostly T4. Some of the Total T4 is bound by proteins and can't be utilized. The remainder (not bound by protein) is the FREE T4. The body can't use T4 directly, so it must be converted to T3. This is mostly done in the liver, but also in other organs. Like the T3, some of the Total T3 is bound by protein and can't be used. The remainder (not bound by protein) is the FREE T3....... this is the hormone that's actually utilized by the individual cells.
Did that help clear it up?
As I noted above, some of us who don't convert well, have to add a T3 component to our medication regimen. You might talk to your doctor about this, but since he seems to be going by TSH, he might not be receptive, though it's not unusual for TSH to be low/suppressed when one is on a thyroid replacement hormone. My TSH has been < 0.01 for the past 5 years.
Chances are, if your thyroid hormones were adequate, you wouldn't need the modafanil.
Do you know which antibodies were tested? Did anyone tell you you have Hashimoto's Thyroiditis?
Yes, when I first saw the endocrinologist, here in Phoenix....he said I had Hash.Thyroiditis.
.I take opiates for non-diabetic peripheral neuropathy.and have managed to decrease them by half what I had been taking when thyroid flared up....my ablation of nerves all seemed to fail during that thyroid flare,,bad timing..as every nerve flared, increasing opiate dose..
Glad I am taking less opiates and wish I could take none..I am down lower than 2006 dose..which was an as needed amount!
but the decrease of opiates has certainly not helped the sweating..had not been able to take modafanil as I was too shaky during the higher synthroid dose.
i just started to titrate up now that thyroid has calmed down, .. and have been at one every morning just to get up.
Thank you so very much. My fears of my thyroid failing , being able to utilize, t4 issues, and sweating ..were oh so expertly answered by you barb..I will make appt to talk to endo. And see if they are flexible to desiccated issues and cytomel.....
I know you have to be a med professional!!
Bless you..from the bottom of my heart!..
No, I'm not a medical professional; I'm just a patient like yourself that's had to work very hard at getting well. Best way to do that is research and learn all you can about your conditions. You have to be your own advocate when it comes to your medical care.
I have peripheral neuropathy, as well; mine is from Pernicious Anemia that went undiscovered/untreated for many years. I don't take anything for the neuropathy; just live with it. I do take Vitamin B12 shots weekly to keep my levels up. Have you had your B12 tested? B12 deficiency can cause lots of symptoms.
I am so sympathetic to your peripheral neuropathy!
I read your bio...love the statement you found referring to anger!
I am so sympathetic to your neuropathy pain..My pain is being better controlled because of hope! specialists were giving me "there is nothing I can do!" but my own research got my primary care dr's call to THE clinic doing amazing research...cannot be seen til July but I had enough markers to be seen!
Having lived overseas for 18 yrs., limited to access of tv or phone...Modern medical assistance became a necessity... so I am here...
BUT... I had not taken steps to realize my own knowledge, own responsibilities.. empowering I had taught to others!
Upon having access to the computer again,...oh my! Sending medhelp awareness ..
Thank you barb for your persistence! You and all in thyroid issues have given me so much help..
I had been so proud to participate and exchange such every day ..
I had no computer....
.... husband of 45 years.. twins(m-f age 43).....my only 14 yr old grandchild .try to help me thru the excruciating pains and anger of hearing
Copyright 1994-2016 MedHelp International. All rights reserved.
MedHelp is a division of Aptus Health.
This site complies with the HONcode standard for trustworthy health information.
The Content on this Site is presented in a summary fashion, and is intended to be used for educational and entertainment purposes only. It is not intended to be and should not be interpreted as medical advice or a diagnosis of any health or fitness problem, condition or disease; or a recommendation for a specific test, doctor, care provider, procedure, treatment plan, product, or course of action. Med Help International, Inc. is not a medical or healthcare provider and your use of this Site does not create a doctor / patient relationship. We disclaim all responsibility for the professional qualifications and licensing of, and services provided by, any physician or other health providers posting on or otherwise referred to on this Site and/or any Third Party Site. Never disregard the medical advice of your physician or health professional, or delay in seeking such advice, because of something you read on this Site. We offer this Site AS IS and without any warranties. By using this Site you agree to the following Terms and Conditions. If you think you may have a medical emergency, call your physician or 911 immediately.