Hi I am so very sorry for your loss. I can feel your pain. Have you seen an endocrinologist? Also, do you know what your original TSH was when you first started the synthroid? I know that there is a range and the doctors say as long as you are "in the range" you are ok however some people do well with a TSH of .40 and some do better with 2.00
I have heard that the range that now exists is going to change, i.e. let's say it is .75 to 5.00, it is going to be lowered to something like .25 to 2.50
I do not have exact numbers but you could do a search online. Also, is it possible that you need to have all your numbers checked, i.e. your free T-3 Free T4. Some doctors only count on the TSH however there are other important numbers to know. There are books out there about this very problem. Some people might have the right TSH but their body isn't doing anything with it, Haishimoto, some have too much and get Graves disease, then some get both where the body is attacking the thyroid and something else I can not remember right now. Sorry I am trying to help, there is a book and I will try to find the title. An endocrinologist should be able to help. Just because you are in the range for TSH does not mean everything is ok. I hope you can find some answers. I know how you feel
I gained 40 lbs out of no where and my TSH was "normal" finally a doctor took a chance with me and prescribed a low dose of thyroid meds and I lost the weight. When I went back to my GP and asked how this was possible, he said, well I guess it was just the "spark" you needed, yeah that was helpful, NOT
I addressed this on the other thread you posted on. Just to clarify what Dee is saying -- the AACE recommended approximately 10 yrs ago that the range for TSH be changed to 0.3-3.0, instead of the current 0.5-4.5 or 5.0 ranges that we see currently. The problem is, that most labs don't haven't embraced the "new" range, therefore, they are still using outdated ranges.
All of that said - if your doctor is adjusting your med, based only on TSH, s/he will keep you ill, because TSH neither causes symptoms, nor correlates with symptoms.
I agree, "it's not the Synthroid", but for a different reason. One possibility, as mentioned in the two posts above, is that your doctor is only testing or only paying attention to your TSH. TSH is volatile, changing as much as 70% intraday, and a very poor, indirect indicator of thyroid status.
The other possibility is that your doctor is testing FT3 and FT4, but is of the belief that everyone is comfortable anywhere in the ranges. This couldn't be further from the truth.
I think you're either undermedicated (need an increase in Synthroid) or badly medicated (need to add some T3 to your meds). If you post recent labs, we can help you sort out which might be the case. Your doctor has to provide you with lab results upon request. If you get them over the phone, be sure to ask for reference ranges on each test as they vary lab to lab.
Yes, I have seen fifteen endos, and two dermos. Every single on of them tell me it's not the Synthroid. I was switched to levoxyl, then levothyroxine,, then back to synthroid. NOTHING helps.
For the first five years, doctors would look at me and tell me my hair looks great. So, I started carrying the advertisement picture of me when I saw a Doctor. One even said, "Is this photo shopped?" NO!! I burst into tears. He didn't believe me. I didn't go back.
No one will help. They all say my levels are "within the normal range".(I have my levels checked every time I go to a new doctor, or my old "current" endo, whichever comes first -- which is about about every year it seems). No one helps.
I started taking this stupid drug because I was depress, constantly tired, had "brain fog", and gained weight AFTER delivery. But now I am ALWAYS depressed because of my hair.
I never wash it anymore. It's so brittle I NEVER blow it dry. I try not to comb it, and I try not to look in mirrors anymore. It's too depressing.
I get sucker punched in the proverbial gut about my hair every day. Here's an example: I ran into an old classmate of mine at a fourth of July parade, and she blurted out "OMYGOD!!! what happened to your HAIR?? Do you have CANCER??" Then she began to apologize, but she just kept making it worse by saying stuff like, "I mean, sorry for my reaction, but you had the most beautiful hair I've eve seen. I've told my hairdresser about your hair. I can't wait to tell her THIS!!" Yes, I cried. It's depressing.
What happens if I stop taking it? REALLY? I'll get depressed? SO WHAT!
My current doctor gave me a TSH, T3 and T4. Also, reverse T3. She says they are all "within normal range". I am now 53. I started taking this when I was 43. EVERY SINGLE ONE OF THOSE OLD DOCTORS told me it's just "hormonal" changes. "As we age..." one of them told me.
They told me "it's genetic." Baloney. I don't believe it. My mother had a beautiful head of hair the day she died from Pancreatic Cancer! My grandfathers, father, brother, grandmothers, etc., all had a full head of hair when they died. (Brother still living...with a full head of hair. My OLD HAIR!!! Now he gives me grief by telling me he'll give me a transplant as he has enough to spare. Yes, That makes me cry.)
It's NOT hormones. I had those checked, too.
I had a potassium test. I've had adrenal gland testing, etc., etc., etc. They thought I was crazy.
This new one believes me. (Mostly because you can see my scalp clearly through my hair now. And I because brought my old hair modeling pictures.)She says that I should switch to Armour, and Cytomel, but that my hair may never grow back. This is the most depressing thing of all. I am seeing her tomorrow.
All teh doctors I saw told me I didn't need my meds adjusted because I was within normal range.
I also told all those doctors that my scalp itches and burns slightly, and the back of my neck and my back feels hot and itches when my hair touches it. My ears sometimes feel sunburned. There is no discoloration on my skin, but I can feel it. They told me I am imagining it.
I have changed shampoos, never dye my hair anymore, don't blow dry, curl or otherwise do anything to my hair that I don't have to...like brush it once a day.
We often hear doctors say that labs are ":within normal limits". Often, that's not good enough to relieve hypo symptoms. Ranges are very flawed for a number of reasons, and many find that FT4 has to be around midrange and FT3 upper half to upper third of range before all symptoms go away Hair loss is often one of the last to go away because your body thinks that your brain and heart are more important (and they are) and takes care of its vital systems first.
Do you have other hypo symptoms? What meds are you currently taking? Do you know if you have Hashi's?
Adding T3 to your meds or switching to Armour might very well cure your problem, but we can't be more specific without actually looking at your labs.
She might be right about your hair, but I doubt it...I've never heard of anyone who really got their meds adjusted right FOR THEM (not just in range) whose hair didn't grow back.
Post your labs, and we can make more concrete suggestions.
OK, just got my labs back.
TSH 1.97
T4, Free 1.1
T3, Free 3.4
T3, Reverse 23
Please post the reference ranges for those. Ranges are lab specific and have to come from your own lab report.
T4, Free 1.1 0.8-1.8 ng/gL
T3, Free 3.4 2.3-4.2 pg/mL
T3, Reverse 23 11-32 ng/dL
TSH 1.97 mIU/L in range
> or = 20 Years 0.40-4.50
Does that help? Thank you so much.
Thanks!
Your FT4 is at 30% of range, and we use a target of 50% until you find where you feel best (don't have symptoms). Some people need to be a little higher than 50%, some a little lower, but you have a ways to go to get there.
Your FT4 is at 58% of range, and some of us have to be in the upper third (>67%) before symptoms are relieved. Once again, there's room for improvement.
The balance of your FT3 to FT4 is good, however, so there's no obvious conversion problem apparent at this time. I don't see the need to add T3 to your meds (just my opinion, of course).
Also, I don't see your reverse T3 as a problem.
Do you have other hypo symptoms? Anything at all you can bonk your doctor over the head with to get him to increase your meds? I think all you need is an increase to nudge your FT3 and FT4 up a little more.
How much Synthroid do you take currently? Do you have Hashi's?
OK, here's what my Dr. put me on when I saw her July12th:
Armour 120 mg tab AND
Synthroid 25 MCG tab
I have to go back in four weeks and have another blood test.
And what had you been on previously? Was that before this blood work or in response to this blood work you just posted?
I was on Synthroid 0.1 mg, or 100 MCG. I have blood work done every year, and get a script from an endocrinologist. I have been getting Synthroid (or it's generic equivalent, same strength) for over 10 years.
What about vitamins. I had different thyroid issues for you, but ended up with the same issues. and my hair is fine and no body to start with, but I had a lot of it and it was always soft and shiny. after thyroid issues and being put on synthroid, my hair was falling out. Every morning I was pulling a hundred + hairs out of the bathtub. Yes I counted. LOL it was tramatizing. I started taking a good hair and nail vitamin. I have been told that prenatals are great, but I haven't gone there. It's been three and a half years and for the last year and a half, the guy that does my hair is like "OMG your hair...it's so healthy and shiny again. It's thicker and a lot more of it." So it's working. Before the ones i picked out of the tub nearly needed to be seen in a microscope. So very thin.
You switched from 100 mcg Synthroid to 120 mg Armour plus 25 mcg Synthroid. So, your T4 has been held steady at almost exactly 100 mcg , and you've added in approximately 18 mcg of T3. That should raise your FT3 considerably...hopefully not too much. It may be exactly what you need to get rid of the rest of your symptoms.
Do you split the Armour into two half doses?
How are you doing on it?
How do I feel? My heart is racing, I can't sleep. I feel hot and dizzy all the time. I took my blood pressure (at home) and it's 147 over 84. July 12th, my last visit to my my doctor, it was (and usually is around) 128 over 70.
One good thing, I will say that particular "intestinal issues" (common to hypothyroid sufferers) have cleared up for the first time in 10 years. It's a bad pun, but, what a relief.
I called my doctor and she asked me
1.) how reliable my blood pressure device was, if I used it before, or often
2.)She told me if I they symptoms got worse, or if my blood pressure went over 160 or over 90, to come in right away, but she told me that my blood pressure issues should clear up, but that I should come in Monday morning, just in case.
I do not split the Armour. Would that help? I take both the Synthroid and Armour at the same time in the A.M., and boy, does it make my heart race.
T3 takes some getting used to, and the 18 mcg of it that's in the Armour is a pretty hefty dose to start on. I'm sure that's what's causing your tachycardia, heat intolerance, dizziness, etc...and relieving the gut issues.
Doctors never want to trust home devices, which is ridiculous. My BP monitor is spot on, and I'm sure yours is, too.
I think it would definitely help to split the Armour. T3 has a very short half life. If your cells don't use it, your body neutralizes it very quickly (in a matter of hours). So, most people take half their dose first thing in the morning and the other half late morning or early afternoon (depending on their schedules, especially wake/sleep schedule and when they find it best to time it to avoid the letdown after the morning dose). It takes a little personal experimentation to find the best time. I'd try soon after lunch as a starting point if I were you. You want to avoid late in the day since T3 can disturb sleep.
If you take the whole dose in one swell foop, you end up with a "rush" in the morning and a letdown by afternoon. Taking multiple doses evens out the peaks and valleys. Also, a good part is getting wasted because if your body doesn't use it, it gets flushed.
Try that...I bet it will help.
Thank you so much for all your help. I cannot tell you how much better I mentally feel knowing someone doesn't think I'm insane, and has given me solid medical advice. I will begin taking the Armour 1/2 in the a.m., and the other half at noon.
My hair gas already begun to slow it's loss. I know this because I count the hairs in my comb. I know that sounds crazy, but I started to question my own sanity when Dr. after Dr. told me my fair was fine. Anyway, I only had 31 hairs this time, much less than the 50-60 plus I usually shed after washing/combing my hair.
I'll keep you updated if I see any regrowth.
Again, thank you so very, very much. You made a BIG difference in someones life!
You're very welcome. Did splitting the dose help?
I just wanted to say that I understand what you are going through because the same thing happened to me. I also had MASSES of curly hair and now have about half of it, with bald patches in the front and a distinct change in texture. You are the first person on the forum who has described a symptom that I also had when my hair first started falling out, before I was put on medication : burning and itching scalp. Sometimes I felt that even my hair lying against my neck was making my skin burn and itch. There was no dandruff or anything like that, but I got weird painful bumps like clogged follicles or something. I've had several episodes of this and no one has ever been able to tell me why. It almost felt like I was allergic to myself, but my Hashi's antibody tests are always fine.
Like you, I had trouble getting anyone to take this seriously. My first endo said that I was just having trouble "getting older" and that "anyone would kill for hair like yours." I once took a 1/2 full small ziploc bag full of golfball sized clumps of hair, which had all fallen out in the shower in the course of 10 days, to another endo ! He didn't seem concerned at all. And my hair was pitifully dry (as was my skin, painfully so, and still is) and if I was walking in the sun I could see through the shadow of my hair it was so thin.
Every time some idiot endo would lower my meds because of my low TSH (and I have nodules on both lobes, they finally discovered), I'd go through another episode of hair loss. And it's not just my head hair that fell out.....most of my eyebrows grew back after I was finally on both T3 and T4, but my eyelashes are very sparse and my body hair is practically non-existent.
The last dermatologist I saw said I have male pattern baldness and that I should just use Rogaine ! But like you there is no history of that in my family....even my Dad at 92 still has most of his hair and both my brothers' hair is intact. My Mom had a lovely full head of hair until she got Alzheimer's at 81...and I really think that what she had was undiagnosed hypothyroidism, the problem of conversion that I seem to have. Untreated, myxedema mimics psychosis and induces hallucinations, and we all know about brain fog and depression etc. She even had the typical thyroid rashes, as do I.
I am supposedly stable on my meds now, with the FREE T4 and FREE T3 in the proper range....but my hair just keeps getting thinner and patchier and I haven't lost the cottage cheese look from the myxedema and still have swollen extremities. I don't know, I'm just discouraged.
I can tell you that the ridging and spooning of your fingernails can be symptoms of hypothyroidism. There's plenty of literature about it online complete with pictures. Mine, which have always been strong, were peeling and cracking down the ridges into the quick , with dry callus-like skin around the edges, and the spooning in both of my thumbnails progressed to the point that the depressions could have held water. That has noticeably improved now that I am on more medication.
There are supplements for the hair and nails that I take that seem to help, at least I notice a decline if I don't take them for a while :
MSM......I would say this is the one that makes the most difference
Biotin
Silica
Evening Primrose Oil
I hope you are feeling better soon, and that both of us can get some semblance of our crowning glory back.
All the best, I look forward to reading about what you find out.
YES! but...sigh...
I'm taking so many pills now.. Armour twice a day, Synthroid in the A.M., a multivitamin, biotin, and I just started taking Evening Primrose Oil again later in the day.
I don't know...with hair it's such a long wait to see any results, if at all. Keep your fingers crossed, and thank you again.
You made me cry.
Thank GOD there is someone else out there that is experiencing the same things I am. We are NOT crazy! Its is NOT in our heads!
I started taking more T3, and re-taking Primrose Oil. I am also very careful about when I take my multivitamin, as I have heard that can interfere with thyroid drug absorption.
I have honestly never heard of MSM, (did it make the itching on you skin stop?) but I Googled it immediately, and have my car keys next to me right now. As soon as I finish this post, I am going out to buy some. Hopefully your tip will be some kind of help. Right now I'd take the cessation of hair loss, even if my texture never comes back. At least I'd have hair, which at this rate is questionable if my hair loss continues.
I do have a few questions for you:
I, too, have little to no hair on my body, including my arms, and my eyelashes are very, very short and thin. About the itching...my back itches all the time! Does yours? At some point I asked a doctor if it was possible to be allergic to one's own hair, but he said it was highly unlikely, as my arms and legs don't itch. (but I wear short sleeves and most of the time skirts, so the only place I have any kind of fabric touching me is on my back....just saying.
Hang in there and let me know how you are doing. Someone cares about you.
Goggle gelatin supplements. Comes in a tablet - for hair, nails, and colegin (spelling).