Typos in the OP - sorry, touch screen device.
I don't quite see how he's diagnosing Hashi's. TGab seems negative, and I don't see a TPOab.
FT4 is low at 30% of range; it should be closer to 50%. FT3 is very low at 37% of range. Many people find that has to be > 67% before symptoms are relieved. Hair loss is a symptom of hypo. When you were on thyroid meds, if your doctor wasn't testing FT3 and FT4 every time you had labs, then it's quite possible that you never got your FT3 and FT4 high enough to stop the hair loss. Hair loss can be one of the last symptoms to be relieved...the body tends to take care of its essential systems first.
How long does he plan to wait before starting you on Armour?
That's odd. I could have sworn I input TPOab on there. In any case, my results for TPOab was 35 and the range is <35.
As I said, I never - ever - had hair loss prior to being put on Synthyoid. I think my GP was basing my meds dosage/change on my TSH only.
I also don't understand why the Synthroid would cause such severe hair loss, but then the hair loss would not and has not stopped once I stopped taking the meds in October 2010? On Synthroid and right before my severe shed began on it, my scalp also became VERY red and itched like crazy. The itching has since stopped. The redness seems to come/go...also another thing I never had experienced before being put on thyroid meds.
The current doctor wants me to take "adrenal supporting herbs" called Adrenotone for 1 month before testing out Armour. He even suggested possibly starting me out on Cytomel (T3) a month after the Adrenotone, and if that doesn't work, moving to Armour.
The question is, do I have Hashi's? Am I hypothyroid? Why does my TSH fluctuate in/out of range so often?
I appreciate any input, as I don't understand the specifics or the ideal levels beyond what is stated in the lab ranges.
Can you also explain how you figured out how my T3 and T4 is lower than need to be, even though it looks within range?
I don't want to be on any meds if I have alternatives, such as a change of diet (mine is pretty healthy, though), etc. but if my levels are indeed off, please explain this to me.
You can see that your TPOab is at the top of the range. However, we often see TPOab and TGab counts in the hundreds or even thousands on diagnosis of Hashi's. Just to give you some perspective, my TPOab was 900+, and my TGab was 3,000+ on diagnosis. TPOab can be slightlly elevated in a number of conditions, so I (not a doctor, just a fellow patient) would have a hard time hanging a diagnosis of Hashi's on a TPOab of 35 before repeating the test to see if it's trending up.
I really don't think the hair loss was caused by the Synthroid. It was more likely coincidence. Hair loss can be a symptom of hypo and of many other things as well. Since you still have hair loss after d/cing almost 1.5 years ago, I doubt Synthroid is the culprit. The itching and the redness might indicate a dermatological problem. Have you explored that at all?
Are you hypo? Yes, I think you are. The ranges for FT3 and FT4 are very flawed. One of the reasons for that is that when the original "normal" population was established, they were not properly screened and contained a lot of people who were actually hypo but had not been diagnosed. As a result, we often find that the bottom half of the FT4 range is questionable...many people need to get FT4 to midrange before symptoms are relieved. The same is true for the FT3 range, except that we often find people have to get into the upper half (sometimes the upper third) before feeling well.
Several years ago, the AACE recommended changing the TSH range to reflect this error. However, no effort has been made to date to correct the FT3 and FT4 ranges.
One of the problems with using TSH as a diagnostic and a basis for treatment is that, by nature, TSH does fluctuate. It can fluctuate as much as 70% within a day depending only on what time of day the blood was drawn. Any nuymber of other factors also influence TSH, making it a very lame tool.
So, right now, do you have of the other "classic" symptoms of hypo...weight gain, cold intolerane, fatigue and/or drowsiness, brain fog?
If you've experience continuous hair loss since 10/10, it's a pretty good indicator that you might have been slightly hypo ever since.
Your doctor probably suggested starting you out on T3 because of your RT3 test. What's really important when it comes to RT3 is the ratio of FT3 to RT3, not the raw numbers. The formula to figure that ratio is FT3 / RT3 X 10 (in your case, 3.0 / 30 X 10 = 1.0). The range on this ratio is approximately 1.0-2.0, preferably toward the upper end (2). As you can see, you are right at the bottom of the range. Anything below 1.0 indicates FT3 dominance.
I'll try to explain that enough so you can go off and do some research on it.
T4 is the "storage" form of the thyroid hormones. It's produced exclusively in our thyroids. Before T4 and be used, it has to be converted to T3 (mostly by liver and kidneys, but other sites, too). In this conversion process, T4 is converted to T3 and RT3. That's normal, but when the production of RT3 gets too high, it can cause problems. RT3 is a mirror image of T3, so it can dock at T3 receptors in cells blocking T3 from getting in. RT3 is inert, so the result is that you can be hypo at the cellular level even when blood FT4 and FT3 levels are good.
One treatment for RT3 dominance is taking T3 meds only (no T4). This, in effect, shuts down the conversion process and gives the RT3 time to clear.
Diet changes don't do a lot for hypo. Of course, if you're a junk food junkie and really clean up your act, it can help, but if you already have a pretty healthy diet, it's not going to do a lot. The only way to improve symptoms is to replace hormones.
There a claims that a gluten free diet can control Hashi's antibodies. It's unproven, but some people swear by it.
Thank you! So my instincts were correct, that I don't have Hashi's. As far as other symptoms...I have weight gain I can't get rid of (about 20 lbs.), though I never had this in my life before. I feel somewhat fatigued, yes, but brain fog is not usually an issue (except between 3-6 p.m., daily). I have problems falling and staying asleep at night. I have a huge HEAT intolerance - it can never be cold enough for me! And, of course, the severe hair loss - it just never stops falling out, by the handful! Given all that, would you think, from your experience/knowledge, that T3 would help the above? Would it be for life...or until it regulates on its own? Or would you think Armour is better, like the current doc wants to put me on? You're right, my TSH fluctuates from month to month and the current 5.93 is the highest it has ever been in 2 years.
I also seem to experience sweating when I eat sugar or carbs, in general. This symptom also crept up on me right before being put on Synthrod 2 years ago, but the med only made my sweating worse. I have been tested for diabetes, which I don't have and also tested negative for Celiac disease.
I have been going around in a circle these past 2 years and no doctor will commit to an answer, and the current one's diagnosis of Hashi's didn't sit well with me because of the lab results.
Can you recommend/suggest what my next step should be? Meds or no meds? Or something else?
Thanks so much!
I didn't mean to say that you don't have Hashi's, just that I think the elevated TPOab COULD have another cause, and I'd want to test again before making that diagnosis. I do think it bears watching.
T3 only therapy is not a conventional therapy for hypo unless there are extenuating cirsumstances, like RT3 dominance. T3 is fast-acting, so it's hard to maintain stable levels throughout the day unless you take it several times a day. T4 is much more stable, so long-term therapies almost always consist of T4 or some combination of T3 and T4.
Have you always been heat intolerant, or is that something new? As you know, cold intolerance is the usual symptom of hypo. Since most of us warm up on thyroid meds, I'm not surprised that meds made your heat intolerance worse.
Some thyroid conditions resolve spontaneously, but they're fairly rare. Most of hypo is caused by Hashi's. If you did have Hashi's, you would be on meds for the rest of your life.
Next step? It's a tough call. You had a bad experience with levo a couple of years ago. When people's labs indicate that they need thyroid hormone but have a hard time tolerating it, it's frequently because of either RT3 dominance or adrenal fatigue.
Ironically, if you have RT3 dominance, taking meds with T4 in them only exacerbates the situation since more and more RT3 is produced, which might be why your doctor mentioned giving you T3. By the way, T3-only is a short-term therapy used only until the RT3 clears. After that, T4 is added to the T3. This is a controversial therapy, and you should do some reading on RT3 dominance before making a decision.
If he syspects adrenal fatigue, that may be why he's suggested the adrenal supplements. Until adrenals are regulated, it can be almost impossible to regulate thyroid, and you can get some unstable results like the ones you got a couple of years ago.
Meds or no meds...in my opinion, meds would help your symptoms. The question is T3 or Armour? Is he planning on running labs again after you've been on the adrenal support for a month? If so, I think it might be wise to see where your adrenal function is at that point and where your RT3 is before making the decision. If he's not planning to run labs, I'd request them. A one-time snapshot of levels is fine, but a series of labs showing a trend is even better. You could get another TPOab at the same time.
Thank you very much.
To answer your questions:
1) My body has always been somewhat heat intolerant. In a room of people, I am comfortable at a temperature of 65-68F, while others are freezing. Anything above 72F is too warm for me. This has been the case since my late 20s (I'm mid-30s now). On thyroid meds, I needed a temperature of 58-60F to be comfortable, while others wore jackets. I don't know why I have heat intolerance and what may cause that (almost as if I'm hyperthyroid, except tests show I'm not).
2) The thyroid med did make me feel very energized during the day, but I was often flushed in the face and sweating all over. It also made me more anxious and irritable.
3) I have been to several dermatologists about my hair, and all so far have been clueless, but at least agree that it was tied to the Synthroid - possibly an allerguc reaction, or over-medication - as I never had hair loss until I was on those meds. An endocrinologist said he woukd never have put me on thyroid meds at all to begin with (at the time of my being put on thyroid meds, my TSH was 3.97). Unfortunately, I have since lost all the hair on my arms and most of my legs, as well. This would normally be a blessing in disguise, except the hair on my head is following suit. I lose over 200 hairs a day and my hair growth, when it happens, is extremely slow. Example: Before the hair loss began with Synthroid, I had long, thick wavy hair and I dyed my hair a few shades lighter than my natural color every 5-6 weeks. My hair was extremely healthy. After the Synthroid-induced hair loss began, and to this day, my hair is thin, dry, and though I rarely dye my hair any more (hair loss shows more on lighter hair), my roots take about 6 months to come through. Huge difference in growth rate!
4) The current doctor said he would not re-test me after the adrenal supplements, unless I insisted...which I said do. I have already requested the re-testing of TSH, Free T3/T4, Reverse T3, TPOab and TGab, DHEA, and Vitamin D. If you have suggestion on additional tests to add to this list, please let me know.
5) I am reluctant to take the herbal adrenal supplements because I have had a bad experience with herbs in the past. I was taking daily Black Cohosh for the heat intolerance and while it helped that, some, it doubled my ALT and AST (liver enzymes) to a dangerous level, so I stopped. That was 3 months ago. The Adrenotone this doctor wants me to take has a combination of what he calls "adaptogenic" herbs, which supposedly adjust to your body's needs (increase/decrease function, as needed). The ingredients include Siberian Ginseng, Riboflavin, Vitamin C, Ashwagandha, various vitamin B's, American Ginseng, and Licorice). My concern is that Ginseng is known to cause anxiety and I am already a fairly anxious person. I mentioned this to the doc and he said to get the ingredients separately and exclude ginseng (but this would be pricey!). I am not sure what to do with this suggestion for adrenal support yet. If you hve thoughts, please share!
6) He also wants me on DHEA supplements simultaneously to support my adrenals. My lab results for DHEA seem within range but he says I m too young to have a low-normal level DHEA. Do you know anything about this?
7) Since you say meds will help, would you recommend Armour, Nature-throid, Erfa, or something else? I have read numerous reports that Armour has been reformulated with poor results for many. Some seem to prefer Canadian Erfa (I'm in the U.S.), and others swear by Nature-throid or Westhroid ;I think tat's the nane). What are your thoughts/personal experience on this?
8) Any further input on the elevated heat intolernce, weight gain, and the hair loss? I know you said 2 out of the 3 sounds hypo, but how will taking thyroid meds (again) affect my heat intolerance? It was quite intolerable on the thyroid meds, unfortunately, and I worry it will return.
I so appreciate your thorough input! This has been the most help I have received anywhere, including from the many specialists I have seen! I wish I could follow up with you in the next month or so once I start whatever treatment. Is there any way to contact you directly? If not, I understnd and appreciate your help so far.
1) A quick google search revealed any number of causes of heat intolerance. A number of people reported heat intolerance with hypo!
2) Once again, this could indicate an adrenal problem. If adrenals are off, thyroid meds can have adverse effects until the adrenal imbalance is addressed.
3) Hair loss can be one of the first symptoms of hypo to appear and one of the last to leave. If thyroid hormone is in short supply, the body tends to take care of heart, brain, etc. before hair follicles. I really don't think it was the Synthroid, per se, that caused your hair loss. If you had either adrenal fatigue or RT3 dominance at the time you started taking Synthroid, the Synthroid could have made your hypo worse, thus bringing on the hair loss. However, since you haven't taken Syntroid for 1.5 years, I think you have to look for the ongoing cause of the hair loss, one of which could be mild hypothyrodiism.
4) As long as you're doing it, ask for B-12 as well as the ones you mentioned. Pernicious anemia (deficiency of B-12) can have symptoms similar to hypo and can cause slight elevations of TPOab. Would your doctor order the 24-hour cortisol saliva test? You spit into a cup at four different times of day and get distinct readings for each. It gives a lot more info than the one-shot test. Many mainstream doctors are reluctant to order saliva testing.
5) I've never had to use adrenals support so I really can't comment a lot. Herbs are powerful...that's why early man used them as meds. However, I have heard of people on the forum who have had good luck with adaptogens. I do think it would be wise to do something about your adrenals before you try thyroid meds again.
6) Adrenals are not my forte by any means. You could try posting that as a separate question on this forum, or there is an adrenal forum as well.
7) The problem with the reformulation of Armour was that many people who had been on it for years with excellent results did not do well on the reformulation. New people are starting it all the time with good results. Since you are just starting, I think you could try any one of them with an equally good probabilty of having success.
8) I can't predict how meds would affect your heat intolerance. However, I think it's worth a shot to try to get your adrenals a little more in line and see if that allows you to tolerate thyroid meds. You can't know until you try...
If you click on my screen name (at the top of this post, for example), it will take you to my profile page. One of the options there, near the top is "Leave a Message". Click that, and you can send me a personal message (PM) that will be private between you and me.
I know all this is kind of scary, but nothing is going to change unless you venture out there and try some things. Your hair loss has continued for 1.5 years, so I doubt it's suddenly going to go away on its own.
What kind of a doctor are you seeing? Is he new to you? Do you feel comfortable with him?
Hi, thank you for taking the time to be so thorough!
This experience IS very scary because I do feel I'm on my own. I have gone from a slim, energetic woman with (if I may say so myself) great hair to someone who is the complete opposite of that, with anxiety thrown in for good measure...all in under 18 months. Even my own GP who has known the "before" me (been my GP for 12 years!), only says "just lose some weight" as if I'm even aeting anything to put on the weight, or as if that thought didn't occur to me, as IF I could lose the weight. I fon't even know hy it's piling on...
I've been to 3 Endo's in the past 2 years, each saying I'm not hypo, to a naturopath who wanted to put me on synthetic cortisone, to the current doctor who is a GP who spposedly practices Western and holistic medicine. I have lost complete trust in the medical community because even though my symptoms are obvious as the nose on their faces, they say I'm fine.
The current GP said in the initial eval that he is certain he can help me. By the 2nd appt, when looking over my results, he said I have Hashi's and wanted me on Armour until I asked about adrenals...when he suddenly said, "oh ok, let's actually fix that," which made me thin, I had to mention it for him to take note? He now keeps giving me names/numbers of dietitians and osteopaths to go see, even though we haven't fixed my current problems. I feel he is not up to the challenge.
I don't feel safe/taken care of by any of the doctors I've been to..so I'm trying to sort it out myself by asking questions.
Thanks very much for answering me. I will be sure to PM you when I find more answers. I just wish I could find a truly dedicated doctor who could do this right...finally.
Doctors can be very insensitive. Really? I'm overweight? I hadn't noticed and/or didn't think it was a problem.
Your current doctor has, at least, run some tests that can be hard to get mainstream doctors to run. You may wel have Hashi's; I just think that diagnosis is premature with your TPOab distinctly borderline.
I understand not trusting the medical profession. I now have an endo that I love, but when I was still working with my PCP, I was pretty much on my own except for the occasional cryptic note scrawled on my lab report.
I know you weren't all that impressed by this doctor, but he did order tests that you might have found difficult to get elsewhere, and he did recognize the need to address adrenals. Those two things can be harder to come by than you might think.
Oh, I'm well aware that most won't and haven't even bothered to run the necessary tests. I have to come in with my research, notes, and articles for them to educate themselves, and they point blank refuse it all.
This current doctor did address the adrenal issue, but was actually ready to put me on Armour right away - until I mentioned, "How about my adrenals" and then he looked at my DHEA Sulfate (which is normal, but lower than could be for someone my age) and said, "Oh yea, actually...". So had I not said anything and followed his advice like so many patients would have done, I'd have been on Armour right now and very likely having a poor reaction. So that part makes me concerned about him.
Plus, now that I've called him on the phone since the appointment to address the info I have read about the adrenal supplements and how it can cause anxiety (which I already have plenty of), he said, "Oh yea, it can...so why don't you just buy all the items in the supplements separately except don't add the ginseng which can cause anxiety?" I said, but the amounts in the supplement you suggested (with ginseng) can't be matched separately, as they are a % of the supplement and his response, "Oh, I'm sure you can figure it out". Hello? Now I'm supposed to be an herbalist, too? And then he was like, also you can go see an osteopath and maybe she can help with nutritional information. I mean, does this guy sound like he's trying to push me off onto someone else or what? Plus, everyone he recommends costs thousands of dollars - I'm seeing him because he himself actually accepts insurance.
I also spoke with my G.I. about all this and he confirmed that my test results show subclinical hypo, potentially Hashi's but I'm so borderline with the TPOab that it is hard to say right now what's causing it. He also said he realizes that I'm concerned about going on Armour (or any thyroid meds) given how my hair loss began with that in the first place. I mentioned the adrenal supplements to him and he said that might not be a bad idea, except (he said), that kind of supplement could stimulate your adrenal to grow hair...in places you don't want! I said, even though it's all herbal stuff? And he said, yep..he's seen it happen to his patients before. He's a smart guy; too bad he's not an endo, though, and can't help me directly with this issue.
As for the GP, her constant go-to is "lose weight"...except, I'm NOT eating and gaining weight, so how am I supposed to lose weight? If it were up to her (and legal), she'd tell me to become bulimic or something! She always says, "I think a lot of your health issues will go away if you lose weight" and me, again, going, "Right....but see, I'm not eating enough to gain weight, so why am I gaining weight?" And she's like, well...it happens, just lose weight. I want to shake her by the shoulders when she does that (which is often).
Yes, doctors are very insensitive and unhelpful. In the meantime, I'm looking for my *SIXTH* endo, but someone who knows how to actually help out.
May I ask, how did you find your current endo? And you wouldn't happen to live in L.A., would you? Because maybe I could go to your endo.
Just a thought...
Herbs can have quite a kick. That's why primitive man used them as medicine. We live in the desert, and some animal will eat almost anything that grows, but not my herb garden...they know better.
Yeah, they just don't get it...how vicious the weight gain cycle is.
When I got sick of my PCP's incompetance treating thyroid, I went looking for an endo. I'm in Sisters, OR, which is near Bend, OR...not a lot of choices. I made up a questionnaire and faxed it to all the endos in my health plan and to an ENT who was treating my neighbor after her TT. Amazingly, only one endo even bothered to answer me, but he answered himself (didn't push it off on his nurse or receptionist).
At that point, I'd been through a year of torture, and I had found this forum, so I was pretty informed on things thyroid. I was totally prepared to stomp out of this endos office during my first appointment, telling him what an idiot he was and telling him not to bother billing me. I loved him...totally unprepared for that!
I got lucky because if he hadn't answered my questionnaire, the next major medical market is in Eugene, which is about 125 miles away, or Portland, which is even further. He's a great guy. I've been stable for quite some time now, down to annual appointments, so I don't usually have a lot to discuss with him. He knows I'm really involved in this forum, and he'll answer queations that I haven't been able to find answers to in my research.
Want to buzz up the west coast? It's a pretty drive!