Hoping last tuesday when I told my dr what to run to dx me (ridiculous a patient even has to do that) I would finally get treatment this week. Well after calling them for 2 days they finally called me back today. Of all test only the TSH & FT4 came in. FT3, antibodies & cortisol are not in yet. TSH was .92 (range-0.34-4.82) & FT4 was 0.73 (range-0.77-1.61). Now any idiot could see the FT4 is BELOW range indicating hypoT. My LDL Cholesterol was 111, less than 100 is normal so it's elevated as well (indicative of hypo). Yet my dr's nurse calls me to tell me they are normal. I told her it's NOT normal when the range is 0.77, her response well it's a lil low but it's normal. WHAT?!?! Basically she tells me they will not be giving me meds since my results are all normal but that she will call me when the other tests come in. I told her don't bother, hopefully I'll die before then so I don't have to deal with their ignorance! I am just so at my wits in with this whole thing, I'm so tired of being sick yet no one gets it. I've been in the hospital twice, seen 4 different drs & $16K later they still have no answer among refusing to treat me. I'm exhausted & have no clue what else I could possibly do. I have an appt with an endo on the 24th but everyone says he's another thyroid idiot. I called 32 yes 32 other drs today that won't see me unless my dr calls for the appt. Idk I just give up!! GRRRRRR
The following 2 users give hugs of support to: Myboo99
cherryg67 (10-11-2011),Louis Anthony (10-09-2011)
I'm so sorry you are having such a rough go of it!!!
I haven't read through all of your posts, so I have a few questions. Are you on thyroid med? If so, what and how much? Symptoms? Did you test first thing in the morning? Fasting?
Not an expert by any means, thinking out loud right now. The tsh isn't to bad if you are on meds, but with a FT4 that low I was pretty much death warmed over!!! It will be interesting to see how your other labs come in, maybe that will provide more insight.
Another thought, if you aren't on meds, your tsh is quite low for having a FT4 that low. That tsh, pituitary hormone, should be rising, screaming at the thyroid to make more hormone.
Hang in there, you will get to the bottom of this, and will feel better!
When I called the in for my blood results, the receptionist said my TSH was high but I don't think the DR will treat you for it.
I was thinking, since when were receptionists qualified to give medical advise???
I booked an appt with my DR and he said there was an issue as my TSH was 4.64 (range 0.4 - 4.2) but my FT4 was 12.4 (12-22). I told him my symptoms and that if my FT4 is at the bottom of the range with an elevated TSH then I must by HypoT. I got a trial of Levo for 2 months. Need to go back this month for hopefully a dose increase.
I really feel for you as it seems difficult to get a DR that know's/understands thyroid.
Your TSH IS IN NORMAL RANGE. Actually it is in optimal range according to what my MD uses. However that T4 level is not. I am still betting you are hypoadrenal and as a result shunting all your T4 to T3. This would explain the suppressed TSH IN CONJUNCTION ... ARGH! Using my phone sorry about the caps lock issues... Subnormal T4 levels. The chemist in me bets your TSH is in the 60-80% of normal range.
I was in your boat many years ago. IT took over four years to find an MD to treat me and by then long term untreated hypothyroidism had caused my adrenal glands to fail. My TSH never cleared 2. But my FTs did hit 10% or lower of normal range. I had to treat my Hypoadrenalism first with 20 mg of hydrocortisone tablets a day. Then I was able to slowly titrate up my T4 until I got preggers. Once pregnant my OB and MFM took over and tested my levels every 2 weeks and ignored my TSH. They kept increasing my thyroid supplementation dose every two weeks until I was 80% of normal range.
Do not give up. Get angry and insist on treating your issues. I truly wish you the best of luck!
If we learn by our mistakes, I am working on one hell of an education.
The Following User Says Thank You to mkgbrook For This Useful Post:
See what my thinkin out loud does, and at early morning hours....foggy to say the least...I'll try to be more cautious w/ my comments, or @ least try to explain in more detail.
mkgbrook is exactly right, that would be an optimal tsh. My point was that many docs would think that it was good w/ meds as well, although I feel better when mine is even lower when on meds, so long as my frees are in a good place.
I definately agree w/ mkg, she is awesome and has a wealth of knowledge. We are all individuals and need to address all of the variables for our own situation. It's a lot of work, but we need to advocate for ourselves in this crazy system. The prize being our health and well being
My situation is that of hypopituitary, my tsh would go up as high as 2.5, have had all the symptoms for yrs. but my FT4 was always low like yours and had trouble trying to find someone to treat me. When my FT3 was finally tested, that was at the bottom of the range as well. Then a lot more testing, MRI etc. which confirmed empty sella, hypopituitary. Oooops, babbling. I'm currently not doing so well, due for blood work, hopefully I will be able to get back to a process of normal brain function.....Also am very concerned about hypoadrenalism at this time.
Thanks for your reply! It's kinda like a bad movie when the receptionists starts telling you things isn't it. I told my drs nurse I wanted her to look into thyroiditis & she says what's that? I'm thinking are you serious, is this a prank tv show or something. Health care nowadays is outta control!! Hope you get help & start feeling better soon!!
Thank you! I don't know exactly what it is but I do know I'm so miserable & not sure how much more I can run around chasing my tail, not to mention afford. I'm responsible for $2k now that my insurance doesn't cover yet I know nothing more than I did yesterday. No dx & no treatment on top of the $6k I've already spent for fertility testing. I'm anxious to get the rest of my tests in but if she won't treat me I don't know what good it is. I can only hope this endo will know something or get me to someone who does. How in the world did you go 4yrs? For 4wks in July/August I thought I was dying! Theres no reason ppl should have to suffer that long before they get help. I will post my other results when they come in.
Hey Boo....Don't give up! Post here when you get frustrated. It really does help to know that there are others who understand your frustration.
I wanted to let you know of a really good book. It's called The Thyroid Paradox, How to Get the Best Care for Your Hypothyroidism by James K. Rone, MD. It explains a lot of things about hypothyroidism. The author is an endocrinologist who has hypothyroidism himself.
Last edited by one2wonder; 10-06-2011 at 09:44 PM.
How many times have I typed that MDs should have to live as a hypoT and hyperT patient for a month to get it! I don't wish thyroid dysfunction on anyone, But it is hard for a healthy normal thyroid functioning MD to understand just how pervasive a bad thyroid can be to your whole BODY!
Just like male OB MDs! You try shoving something the size of a watermelon out of a whole the size of a lemon, get it stuck with an ineffective epideral and see how well you take... Just keep pushing. Women have done this for centuries with out pain meds. What we have a failure to convert. Can't make that touch down? Well guess we will just have to do emergency over time in the operating room. Yeah, that man didn't know how close he came to temporary pregnant woman insanity.. I stick to female OBs they can at least sympathize. Wow. That was a tangent from 9 years in my past.
The Endo should know what my MFM and OB TOLD Me. To get pregnant and have a healthy baby your T4 needs to be in the upper half of normal range. My last pregnancy was amazing to watch blood work wise. I had just made it to 50% of normal range for both T4 and T3 and suddenly got the 24 hour stomach flu that lasted over a week. This was Deja Vu for me. So even though my period was technically due that weekend I went and got a pregnancy test. Sure enough I had contracted a 35 week stomach bug! I immediately went to my IM for blood tests confirming my pregnancy and getting a baseline thyroid and adrenal profile. Well my thyroid hormone levels had dropped 20%. For my body it took 20% of my thyroid hormones to maintain a pregnancy allowing for proper development and growth of
My monster premies. My son was 10 lbs at 35 wks & my daughter was an 8 lb premie at 35 wks.
You are due for some luck in the MD department. That low FT4 is not normal and will raise a flag with the right MD. Truly GOOD LUCK. I am done with my son's bday cake. Time for a little sleep.
If we learn by our mistakes, I am working on one hell of an education.
Thanks for your input! I'm not on any meds at all right now. When I think back I've prolly suffered from hypo symptoms for about 10yrs. The dr did give me synthroid to see if it reduced symptoms for 2yrs even though was within "normal" range but she left the practice & the new one said it's normal you're coming off. In Jan I started to see an OB about a fertility problem, he ran my TSH only which was 2.545. I didnt really feel that bad then. Fast forward to July/Aug I started having episodes of hyper problems. TSH at that time was 1.24 & FT4 was 0.77 which is the beginning of the range. Now for 4mths prior I took clomid which is a pituitary stimulant increasing hormones for fertility. From what I've read estrogen binds to it in your blood & suppresses TSH. Into Aug I became severely hyper, felt like I was dying for sure! My cortisol at that time was 5.9 (range 6.2-19.4). They ran the wrong antibody test & no T3. But with FT4 the bottom of the range & low cortisol I saw there was a problem, dr did not but was puzzled on what was. Last week of Aug the symptoms just started to lift, I felt good for a week & then swung back hypo but worse than ever before. The brain fog is really bad, my gas light came on the other day yet I preceded to drive right by 2 stations & ran out on the highway. Then I had a panic attack b/c I ran outta gas. Crazy I know! It's a wonder I actually leave with clothes on. I'm also freezing, depressed/emotional & having trouble with my speech. I know what I wanna say but something different comes out. Feels like my brain & mouth are not connected. After researching my thought was Hashis with transient toxicosis, explaining the temporary hyper even though my FT4 was low. Wish we would have ran my T3 then! I talked to my dr last week about it & asked her to run TSH/FT4/T3/TGab/TPO & 24hr cortisol. We ran them at 2pm but I had not eaten anything & only water to drink. She said wait for the test & if they didn't show anything we could do a trial run with meds but based on the TSH/FT4 now shes not willing to give me meds. So now I guess I'm stuck waiting to see the "diabetic" endo on the 24th. This is just such a rollercoaster & I'm sick of ppl not believing how I feel. The good drs are so far & few between you can't get into one. Feel like my head is gonna explode from all this! I just wanna go back to feeling good, I didn't know that was so much to ask. Anyways that's my story, pity party over I hope they get you fixed up soon, feeling this bad is for the birds. My new phrase is living with thyroid disease is not living at all! GL to you!!
That's my biggest issue right now, I have no kids & want them soooo bad. We've been peeing on sticks all times of the day, temping, charting, fertility drugs, & tested tested tested for the last year. We've been off bc for the last 3yrs. It really is a heartbreaking process. The worst thing I've ever struggled with in my life. But I was excited when you told me it was b/c of my thyroid, that's much cheaper than IVF. But getting someone to give me the meds to fix it is such a chore! Hopefully soon though. Thanks for all your help, now if you could just get me a script I'd love you forever
Firstly, let me say that you have a valid reason for venting. It's not a pity party. We all deserve the chance to feel well, while alive. May I suggest a few things that just might get to the root of your problems. Find a doctor who is knowledgeable, and who cares. No, it's not easy, but worth the search. Out of all the labs that you had done, I did not see a Free T3. This is THE most important test. The FT3 is the most important hormone, that tells just where your hormone levels are in your body.You will also need to have your iron/ferritin, and adrenals properly addressed. The best test for the adrenals is the saliva four vial test. It is the most accurate.
You say that you have been hypo for many years. May I ask you, how do you function at all. You may be putting yourself in great danger by not addressing these issues right now. If you thyroid is not performing correctly, your cells are not getting the things that they need to perform the many functions in the body. Perhaps that is why you are having these bizarre experiences. Looking at your numbers, I cannot even understand them. They do not look like anything that I have seen. Living with unaddressed thyroid issues is like not living at all. Take the time to take care of this problem, now.
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Thank you for your help! I haven't really been functioning for a long time. They've always just givin me meds to treat the symptoms, anxiety, depression, anti acids, weight loss meds, I've taken it all. I'm turning 30 in Dec & my guess would be I've prolly taken over 50 different meds in the last 10yrs. They ran my thyroid test 2x in that entire 10yrs but said they were normal, I guess I just trusted they knew what they were doing. It wasn't until I went severely hyper & my best friend who suffers from thyroid cancer said that's exactly what I went through. She's the one who has driven me that it's a thyroid problem & I need to keep pushing for a dx. She went 6yrs before they dx her, by then she had cancer. I told my dr to run FT3 last week so hopefully she did it. I told her to also run the saliva cortisol but she insisted urine was better. I will be doing that this Sunday since I have to refrigerate it but I'll def check out that website. We've never run ferritin I will look into that as well. I have gone through several bouts of low iron/anemia, that runs in my family. Can I ask what confuses you about my results? Is it b/c my TSH isn't higher with a FT4 that low? That confuses me but after reading estrogen binds with it in the bloodstream & can supress it I think it could be from the fertility meds I took. They're a pituitary stimulant producing more estrogen. Idk that's just my guess.
What confuses people most about your results is that your TSH LOOKS SO DANG GOOD and your FT4 is cow plop.
What you are experiencing in my personal non-MD experience is text book hypothyroid induced adrenal insufficiency. I can pull my blood work from four years ago and we would look like twins.
What you are lacking is the FT3 to show that you have a conversion issue from T4 to T3. What tipped the scale for me was they actually tried to supplement my 0% FT4 level with 50mcgs of T4. I went hyperT in no time flat. All my supplement was converted abd dumped into T3. I lived or exhisited as the living dead hypoT in T4 and normal or hyperT in T3. You feel dead inside and like a living statue while others work around you. Yeah I have been there. I understand.
After the supplement trial and my saliva cortisol and blood cortisol came back low normal my integrative medicine IM prescribed 20 mg of hydrocortisone. I was able to start supplementing with out adverse side effects with in a week! I still had other issues insulin resistance, PCOS, reactive hypoglycemia, sleep apnea, and more. But all of these conditions improved as my thyroid hormone levels were balanced with in 10% of each other and were elevated into optimal range. Getting to 50% helped but I still felt like a trod on cow patty. My optimal levels are where my FTs are between 75-80% of normal range.
You need to find A MD that does not care about your TSH. That is the pituitaries view point of thyroid function. Many things can go wrong to throw this value off. What matters most are the levels of your actual thyroid hormone. Your. FT4 is cow plop. Please let us know when the other results come in.
I would see if you can talk your MD into doing both the saliva and urine cortisol tests. Adrenal fatigue is harder to catch via the urine test.
Keep us posted.
If we learn by our mistakes, I am working on one hell of an education.