I have been on Thyroid meds for years. My dosage is 137 mcg at this point. My liver enzymes continually rise each time I have my blood work done. Because of this I was diagnosed with autoimmune hepatitis I was put on steroids and was taking them for over 2 years. I finally weaned myself off of them after consulting with my Dr. and now have not taken them for 6 days. My question is: am I to expect to feel pain after getting off them? I hurt all over and do not know if it is from getting off the steroids or another problem. Any help would be appreciated. Thank You
I have most of the symptoms- Have had for a long time FYI I am 60 yrs. old
Feeling tired (fatigue) and sluggishness
Slow movement and speech
Increased sensitivity to cold
Swelling around the eyes
Loss of eyebrows -No
Joint and muscle pain, aches, and stiffness
Pale, dry, rough, and thick skin -More like think skin and bruise easily
Dry, thinning, or coarse hair
A horse voice
An enlarged tongue- No
Decrease in taste
Depression- at times
Slowed heart rate
Mild high blood pressure
Difficulty catching your breath (severe shortness of breath) when exercising
Decreased ability to exercise.
My test were-
T3 uptake- 29.6-Units-%- expected range- 20.0-38.5
T4 (Thyroxine)- 8.8- Units-UG/DL-expected range-4.4-12.4
Calculated T7 (FT1) 2.60-expected range-1.05-4.50
TSH- 11.5 Units-UIU/ML-expected range-0.3-5.1
Calculated Globulin-3.9-Units-G/DL-expected range-2.0-3.8
SGOT(AST)- 56-Units-U/L-expected range-5-35
SGPT (ALT)- 79-Units-U/L-expected range-7-56
I listed everything on my tests results that was "Out of Range" thought perhaps it would give a better over all picture. Thank you for any help.
Wow, I think you win the contest for having the most hypo symptoms. LOL That must be frustrating.
I'm sure that those symptoms are due to being hypo, even though you are taking 137 mcg of T4 med. Frequently when taking a heavy dose of T4 medication your body does not convert T4 to T3 very well. The biologically active portion of T3 that is not bound to protein molecules (thus free) largely regulates metabolism and many other body functions. Scientific studies have also shown that FT3 correlated best with having hypo symptoms while Ft4 and TSH correlated very poorly.
It is unfortunately that you have not been tested for Free T3. Instead, some of the tests, such as T3 Uptake, Total T4 and FTI, that were done are somewhat outdated and not nearly as revealing. I'd bet my last dollar that when you do get tested for Free T3 you will find that it is in the very low end of the range and thus you need to supplement your meds with a source of T3. As for some of the other tests, I am not familiar with those and will have to do some reading about them.
A good thyroid doctor will treat a patient clinically by testing and adjusting Free T3 and Free T4 as necessary to relieve symptoms, without being constrained by resultant TSH levels. Symptom relief should be all important, not just test results.
The recent pain you have been feeling after weaning off steroids, seems to be too coincidental to ignore that as a possible cause. I would give it a bit more time to acclimate and see if pain subsides. You do need to get the testing for Free T3, and see if it confirms what I expect, and if so then talk to your doctor about clinical treatment and the need for Free T3 to be increased.
Thank you for your response. I am suppose to go tomorrow 6-14 and have my Thyroid levels tested and I am going to ask about the Free T3 and Free T4 you mentioned. I can't seem to find a GOOD thyroid Dr. anywhere around where I live. I have to take what I can get unfortunately. I think the pain is subsiding and are there any natural supplements for the T3 or is it just prescription? As you can tell I have had this for a long time but know very little about it, that's what I get for trusting Dr.'s. I assume (you know what that means) they are there to help me but so far NO good. Thank you again for your responses and I will let you know what they say tomorrow. Bobbi17
I know of no reliable and consistent natural supplements for T3, other than prescription meds.
If they resist testing you for Free T3 and Free T4, then you should insist on it and not take no for an answer. Tell them you know that FT3 is the most active thyroid hormone and that it largely regulates metabolism and many other body functions. You can also tell them that studies have shown that FT3 correlated best with hypo symptoms, while FT4 and TSH correlated very poorly. So it is important to know that your body is converting T4 to T3 adequately to keep your FT3 level high enough to prevent hypo symptoms.
As far as a good thyroid doctor, I don't have any recommendations based on member's personal experience, but you might have a look at this listing of Top Thyroid doctors in Texas. There is one shown for El Paso that, based on patient feedback, sounds like the type you need.
Just to let you know, I went to have my blood work done and at first they said they were going to test for FT3 but when they handed me the paperwork to sign it was not listed. Then I insisted and so they asked the Dr. and then said it was ok'd so now I have to wait to see what happens at my appointment on the 21st. I will ask for a copy of the results for my own records so I can see if they really tested for that or not. If not, I will see that Dr. that was recommended. I may go there anyway as I do not really like the one I am seeing. Somehow I do not feel as if he really understands how I feel. thank you so much for the information. I do not think I would have ever known to ask for that to be done. I think you were a God send to me. Bobbi17 actually my name is Pam:-)
Good for you that you checked the paperwork. You'd be amazed how many times the office staff just operates on auto pilot and do not get the correct tests done.
By the way, the doctor is required by law to provide a copy of your lab report upon your request. It is a good idea to always get a copy and write on there how you were feeling at the time and what meds/supplements you were taking. These become very valuable for future reference.
If you can get a copy of lab report before the appointment on the 21st, please do so and post results and reference ranges and members will be glad to help interpret and advise further. This will get you best prepared for the doctor and help assure that you get the diagnosis and treatment you need.
Okay, I will see if they will give me the results sooner than my appointment so I can post. I would guess it would take about 3 days? I called the Dr. that was recommended and was told she only sees patients that have Medicare. I have never heard of that, I think they shy away from self-pay patients thinking I won't pay them or something:-( I left a message with the office manager to call me, but so far I haven't heard back. Thank you again for everything:-)
FYI: I called today to see when I could pick up my test results and they said they would not be ready until the 21st. So I guess there is no way to post them before my Dr.'s visit. If you still would like me to post them then, I would be happy too. Thanks again Bobbi17
I think that you should start by giving the doctor a list of those typical hypo symptoms you have. Then I think I would mention that all those symptoms and also the high level of your TSH test are indicators of being hypothyroid and needing increased thyroid medication. You can also tell him that you have been doing your homework and have found out that there are two very important tests that you need to be done, which are for the biologically active thyroid hormones, Free T3 and Free T4. If the doctor tries to resist and tell you that they are not inot needed, then you should insist on wanting to know both FT3 and FT4. FT3 is the most important because it correlates best with hypo symptoms, while FT4 and TSH do not correlate well at all. Many times patients can have adequate levels of FT4, but inadequate FT3, if their body is not converting T4 to T3 very well. You absolutely need to know your FT3 level.
You should also mention that even if the FT3 and FT4 results show to be within the reference ranges, that does not mean that all is okay for you. The ranges are far too broad. They have never been corrected, like was done for TSH over 8 years ago, by the AACE. (By the way your lab report is still using the old range for TSH.) So the bottom line is that you want to be treated clinically, by testing and adjusting FT3 and FT4 levels as necessary to relieve symptoms. Just like they used to treat patients many years ago before they developed TSH testing and convinced themselves that was basically all the testing they needed.
If the doctor is hesitant about treating you clinically, you should give him a copy of this letter, written by a good thyroid doctor for patients that he consults with from a distance. the letter is sent to the PCP of the patient to help guide treatment.
With all those symptoms and the TSH level, I don't expect that you will have any problem getting an increase in your medication; however, you really need to be tested for FT3 to know if you need to add a source of T3 to your meds, rather than just increasing your T4 med.. Many of our members report that symptom relief for them required that FT3 was adjusted into the upper third of the range and FT4 adjusted to midpoint of its range.
Thank you for all the information. I am not sure I understand it all, but I already printed out the page you suggested and plan on giving it to them. I will also ask about the supplement mentioned in the letter and I was just raised in my medication from 112 to 137 with this new Endo Dr. so the test I had done on the 14th should show if 137 is adequate for me. I will let you know how it all goes and I did find another Dr, here that seems to be very knowledgeable in treating everything that is wrong with me so depending on this next visit I will decide if I want to stay where I am or try the new Dr. Just so you will know, the lab work was not done by my Endo Dr. on my initial visit. I had that test done prior to my 1st visit with the Endo Dr. to take with me. Then he, from the result I took with me, raised my meds to 137 from 112. Now, this test on the 14th was initiated by my Endo Dr. who I will see for only the 2nd time on the 21st. So the clinic where I had the test done is who is using the old testing, I am not sure if this Dr. does it the same, altho they weren't going to test for Ft3 until like I told you before I had noticed they didn't have it marked. I will just wait until the 21st and will let you know how it all goes/ Thanks Again for your patience and for ALL of your help. Pam
Well, my visit went okay I guess. Considering I really don't know a lot about this but I did notice when I asked about the FT3 he was all about the TSH levels. My diagnosis is "Relative Adrenal Insufficency". I have to make sure and carry a note around in case I have an accident or fall or anything like that. He is also testing me for Diabetes....... Here are my test results.
TSH- 0.41 Units-mIU/L 0.30-3.00
Free T4 1.30 Units-ng/dl 0.80-1.90
Free T3 3.7- Units-PG/ML 1.5-4.1
ACTH 42 Units-pg/ml 0-46
Cortisol 6.60 units ug/dl (a.m. 5-25; p.m. 2-13) (he said should be 10-15, mine 6.60)
There is other lab work but none about the thyroid so I didn't post those. I will if you want to see them. It's funny but my HDL is 38-Low and my LDL is 114. He says that could be a sign of diabetes. Anyway, thanks and I am looking forward to hearing your thoughts but need to go back to have blood drawn for the diabetes test so, see ya soon, Pam
With your current dosage of thyroid meds, those thyroid test results look pretty good. All are in the right area of their ranges, which is necessary to relieve any thyroid related symptoms.
Since you mentioned that your doctor seemed to be all about TSH levels, you should guard against the doctor wanting to reduce your meds, if the TSH should decline further. Many hypo patients taking thyroid meds find that their TSH becomes suppressed below range. This does not mean that you have become hyper, unless you have hyper symptoms due to excessive FT3 and FT4 levels, which you do not have.
Glad they identified the adrenal issue. What is the plan to address that?
Also, many hypo patients find they are low in Vitamin A, D, B12, iron/ferritin, ainc, magnesium, and selenium. When you go back for the blood draw for diabetes test, is the doctor willing to test for those as well?
As for the adrenal issue he said he wanted me to see how I do for another couple of months since I seemed to be doing ok, not great, but didn't think he needed to give me a shot of ACTH. He didn't say why but I suspect it was because I was adamant about not taking any more meds. (namely Prednisone)
This is what they are testing me for now along with the Diabetes test-
Calculated Creatinine Clearance
2 Hr. PP-Sugar
I don't know if they mean anything to you, but they sure don't to me :-)
He seems to know what he is looking for as he asked me to bring in my original tests from the Dr. who put me on prednisone to begin with. I gave them copies of all the blood work I have had done since 2009, so maybe they will have a better picture. Thanks for caring and so you will know, I got some DHEA and felt better the very next day!!!! I feel as if I might have more energy and and over all feeling of "being better" hard to explain, but I also told the Endo about taking it and he told me to keep taking it if I felt better. I started with 50 mg, hope that wasn't too much to start with but, I can't see it hurting unless I start growing a mustache LOL. I'd have a problem with that, my voice is already so low I can't hear myself most of the time:-) Thank you again for everything and I'll keep in touch, you too ok? Pam
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