I’m very new to this community and feel so blessed to have found everyone and especially those with Hashimoto’s
My story of diabetes is a long one beginning with gestational diabetes (1981;1985) +2 children and being diagnosed as a Type 2 for a year. My internist sent me to an Endocrinologist in Feb. 1990 and I’ve been on insulin ever since x3 pumps. I realize now I am or was a LADA! I have adult onset of Type 1 diabetes like my maternal aunt. I have gone from Graves to Hashimoto’s disease over the course of 15 or so years. I was placed on Levothyroxine 25 mcg in Nov. 2010 and then to half a pill…back to a whole pill as of late. For the past year, however, I have been having symptoms of low thyroid, but attributed it to menopause and- was always told my labs were perfect…except for an ever increasing A1C/big swings in BG levels! Last month I called my endo and said that although my labs looked great to her- I didn’t feel well and haven’t for over a year. I have had difficultly resting/staying asleep, concentrating, lack of energy and having bouts of fatigue. My hair, skin and fingernails have changed. I’m losing bone density. I thought it was either aging or menopause, but finally realized that something else was out of whack.
Now, she is testing my adrenals (ketosteroid/coritsol) with 24 hr urine sample to see if that is the culprit, but I have this feeling my Hashimoto’s isn’t being properly treated. I realize each person is different, but I believe my quality of life and ability to work is at stake!
I confess, I have never really looked at my labs other than to see my A1C. I need help with thyroid testing, issues and treatment. According to my Endo’s nurse…she does not prescribe dessicated thyroid hormone because it isn’t safe. I think my Endo is very smart and if I plead my case she might help me??? First, we have to see what is going on with my adrenal gland. Please feel free to comment with any words of wisdom/experience as I go through this process and Thank You
I’m very new to this community and feel so blessed to have found everyone and especially those with Hashimoto’s
Hi Char. Your story with hypothyroidism sounds very familiar to my own. After being rx’d Synthroid for a couple of years, my labs are all within range, but I still have most of the lousy symptoms you describe, chronic fatigue being the worst one. I recently convinced my endo to add Cytomel (T3), but I still have a 4-to-6 weeks to go before I know if it is providing any benefit. In the meantime, my early reaction to Cytomel is not that positive. Chronic fatigue has increased even more.
Anyway, if this therapy doesn’t work, I plan to try desiccated thyroid. Unfortunately, for some of us with thyroid issues, the road is long and bumpy to finding treatment that makes us feel normal. Finding an endo who is willing to work with a patient with thyroid issues is also a challenge. If I can be of any help, please let me know.
Thanks for responding, Bruce. I hope you soon find some relief for the fatigue. I assume Cytomel is a synthetic thyroid hormone for T3? I’m sorry you are not finding any improvement yet. If you decide to go the desiccated thyroid route, please let me know how things go with finding an endo. Have you visited this site before?
Thanks, Char. You have it right with Cytomel. It’s synthetic T3.
Oh yeah, I’ve visited the website you mention. Kelly WPA turned me on to it awhile back. The listing on STTM of medical folk in my area (Atlanta) who treat thyroid issues leaves a lot to be desired. I just hope that my current endo will continue working with me until I get these symptoms resolved. He’s an outstanding diabetes endo and practices out of Emory. I believe if I continue with the Cytomel that he is has rx’d that he will sign off on desiccated thyroid later if Cytomel fails. He seems reasonable and respects my point of view, so I’ll see.
I want to beat this chronic fatigue in the worst kind of way. I’ll be sure to keep you posted if I go the desiccated thyroid route. Kelly and many others seem to find the relief they need with desiccated thyroid. I just have to be patient I guess.
Have you had your Free T4 and Free T3 tested?
Bruce, I don’t know for sure about whether she’s tested my “Free” T4 and T3. I may run by her office to get a copy of my most recent lab results. My older lab results don’t show them being tested. I have been with this endo since 1990 and she saved me back then! She’s a reasonable person and very knowledgeable.
I think it’s difficult to be patient when you feel this way, but that’s the path we’re on Thank goodness you’re in a good medical community at Emory!
Char, the reason I asked you about the Free T3 and Free T4 is because most doctors only test for TSH. TSH testing is actually how my hypothyroidism was detected. However, it isn’t the most accurate test since it is testing the thyroid stimulating hormone produced by the pituitary gland. The FT3 and FT4 tests test what the thyroid directly produces.
Just this past week my wife had a call from here PCP wanting to start her on Synthroid because her TSH was slightly out of range. My wife and I both agreed that she should not start this therapy because two weeks prior she had seen her GYN and was tested for FT3 and FT4, and both of those lab results were within range.
I agree; it is tough being a proactive patient, and it can be even tougher if you have a long-standing relationship with your doctor. However, we have to advocate for ourselves. I’m very cynical when it comes to fully trusting the medical community, big pharma, and insurance industry. There are some wonderful doctors out there, but we just have to look hard sometimes to find them.
Last week I phoned some of the endos in our area (spoke with their nurses) to see if they ever prescribe desiccated thyroid hormone. I found only one who has, but only “rarely.” This particular endo at one time was in private practice with my endo. She is not, however, taking new patients at this time.
I agree. We have to advocate for ourselves and while it would be disappointing and sad for me to leave my endo…I have already entertained the thought.
That is an unreal story regarding your wife! I’m so glad you both had the knowledge to justify declining the PCP’s recommendation. Do you feel GYN’s are more open to testing FT3 and FT4?
Char, I honestly don’t know if GYNs are more inclined to test for FT3 and FT4 than endocrinologists or GPs, but in my wife’s case, requesting the lab tests from her GYN was not a problem at all.
My wife is pre-menopausal and has been experiencing some of the typical symptoms including increased fatigue. Her GYN suggested blood work, and my wife asked that a thyroid panel be included. She made sure that FT3 and FT4 levels were tested and specifically asked her GYN for those two tests. Her GYN was very agreeable. I’m confident that her GYN would have treated hypothyroidism and written a Rx if the condition were present.
If your current endo is unwilling to test your FT3 and FT4 levels, maybe a GYN would be willing to order the labs. It’s worth a try. You could call ahead and inquire just as you did when seeking an endo who Rx’d desiccated thyroid. It really shouldn’t be this hard to get the health care that we desire. Unfortunately, it is. Let me know if you’re successful. Good luck!
Have you had your vitamin D levels checked? Also B levels.
Hi Brock! My vitamin D levels are checked every 4 months and I take 1.25 MG 2/month of Vit. D2. I don’t believe she’s tested Vit. B? Thanks for the suggestion I take a multi vitamin and lots of calcium (with each meal).
I went back on thyroid late last year. I was first put on Armour thyroid back in 1971. I had been off it for a while, some docs bother some dont when it comes to thyroid meds. I had brought the Sx issues up with everal of my docs. MY famdoc refused to even consider it, for the hair loss he said to just try Rogane. I was having problems sleeps, waking in the middle fo the night FREEZING, heck even his nurse who drew my labs was SHOCKED at how COLD I was.
Trying to get thyroid treatments can be a nightmare! My treatment plan at the local diabetes cetner calls for regular thyroid testing, yet NEVER done! I ahd asked previously about it, the nurse told me my TSH was fine. MY last endo visit he double checked and there was NOT a wingle test in my record, not even a single worthless TSH!
Since I started back on thyroid (on my own, but with my endo’s blessing) my diabetes has been more stable (maybe the thyroid helps, maybe not). I am currently taking a generic desicated thyroid, same dose I had been on when I was taking Armour.
Getting endos to really hear us about thyroid problems is beyond frustrating. My experience has been that they know less about this than they do about diabetes. Wish they would trust to relie more on symptoms than tests. It’s difficult to get endos to agree to dessicated thyroid. I’m waging this battle now. I take T3.
The most effecitve adrenal function test uses saliva, not urine.
Doctors like to prescribe high doses of D2, but Vit D3 is what’s needed. D3 in an oil capsule is better, cheaper & OTC. http://www.vitamindcouncil.org/ has great info.
I’m glad to know you are finding relief being on a generic desiccated thyroid. That is awful about the inaccurate records and just having the TSH done. My endo did test my FT4, but not the FT3 in April- she always tests my TSH. I’ll see her in July and will ask for the FT3. I’m waiting on adrenal test results which takes a while.
Isn’t it weird how we are freezing and specialists just accept it without understanding that’s an indicator of thyroid and/or adrenal dysfunction?
I believe having better thyroid functioning helps with BG control- it’s all tied together. There for a while, my BG levels were all over the boards. Lately, I’ve been eating much less and having better control…and then sometimes there’s no rhyme or reason as to why BG levels are whacky.
Thanks for your reply, Gomer
Thank you, Gerri! I have read about the saliva testing, but my endo is testing the 24 hour urine
Thanks for the link!!! There’s so much to learn- who knew? Ah…you certainly did!
I’m so grateful for your response. I just refilled my Vit D2, but I’ll get some D3 OTC and give it a try!
Yes, your response does help! My endo has not tested my FT3 and relies on TSH (0.506) and Thyroxine T4 Free, Direct (1.29) according to my April labs. I plan to ask her to test my FT3 when I return at the end of July for my next appt.
I take calcium with 500 IU of D3 three times/day. If I have been taking 50,000 IUI 2/month do you still feel I should begin taking 5,000 IUI/day? My Vit. D, 25-Hydroxy was 56.6. I don’t want to overdo it on Vit D! On my LabCorp report it states that 32.0 is considered to be a" threshold for optimal health." I have wondered if I am overdoing it on Vit. D. Then again, I already have osteopenia throughout my bones according to my most recent bone density scan.
I agree that more weight should be placed on how we feel rather than how our numbers fit the pharmaceutical industry’s or is it the Lab’s pre-determined level for well being
The range for FT4 is 0.82-1.77
I think my FT4 is pretty good. I’m really concerned about my energy level, fatigue, sleep (resting) issues and fluctuating low body temps (I’ve been freezing for several years!) and that’s why I want to know about my FT3.
My adrenals may be a problem and I’m trying to figure out what is what or what is doing well and what is whacked out.
Yes, It’s due or die time for my bones! I’m also lactose intolerant which occurred over the past two years. I’ll definitely check out Vit. K2.
If the free T3 and T4 are normal, but the TSH is out of whack, then it means that the thyroid is failing. The pituitary needs to put out more TSH to get normal results from the thyroid. If your wife has an elevated TSH, your doctor’s reason for wanting to prescribe Synthroid is to take some of the burden off the thyroid gland. If she doesn’t take Synthroid, the gland will most likely become enlarged because of working so hard to secrete the hormones, and while it doesn’t usually get severe in this country, it can. I had my thyroid removed because it had gotten so large it was interfering with my swallowing. This is probably a result of the fact that it began to fail when I was in my mid-20’s (Hashimoto’s) but I wasn’t diagnosed or treated for it until I was in my 40’s. The bad part is that they have to cut one of the nerves that controls the vocal cords, and I can no longer sing, which was one of my favorite hobbies. But that’s the BEST case scenario – my hygienist ended up having one vocal cord paralyzed completely, and can only talk in a raspy whisper (she had cancer).
So you might want to rethink your opposition to Synthroid – knowing what I know now, if I had been diagnosed and offered it in time, I would have taken it in a heartbeat!
I’m learning so much from you and others Thank you!
Hopefully Bruce will see and read this post! Thank you for sharing your personal experience with this important information.
Was surgery possible for your damaged vocal folds? Are you able to vocalize to speak, but not sing with a range of octaves?
I was checked for celiac a few years ago and didn’t have it when I complained of aching joints…they still ache. I walk and practice yoga but, I have not been to yoga in nearly 2 months due to feeling so tired and fatigued. I have considered going gluten free to see if it makes any difference in the way I feel.
I can’t determine exactly what all is going on with my body…My endo placed me on a small dose of HRT a couple of weeks ago to see what (if anything) that does as I no longer produce estrogen. I’m post menopausal according to my labs. I produce less estrogen than a 1- 10 year old child-LOL. I can’t wait to ask her about that! It certainly explains my childish behavior