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Old 10-07-2010, 02:54 PM   #1
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Hypothyroidism/hairloss/hell

Hi to all. I am DESPERATE and would appreciate any knowledgeable feedback ASAP. I am 40. I have psoriatic arthritis, hypothyroidism, and other issues. My biggest problem right now besides pain is HAIRLOSS with a capital H. I will try to condense. I had been on Synthroid 75 mg for years. I led a normal life with some shedding of my hair. Fast forward to 7 years ago, had a traumatic csection, and have been dealing with severe issues since. My hair started coming out in handfuls. I have gone to Cleveland Clinic, Vanderbilt, Un. of Ky, many derms, 5 biopsies,etc. they say it is TE and will stop..it never does. I finally found a dr who listened to me and gave me Armour a couple of years ago and I did so much better, hair and all. Then it became unavailable. I took compounded T3/4 for awhile and had problems again. My pain became so bad from the PA that I had to begin Humira. I had all kinds of problems with it and my hair started falling out in clumps. So, now I have been off all meds for several months. My dr was able to get Armour again and put me on a dosage of 90. But I keep getting worse! Literally, all my hair is falling out in handfuls and I can barely drag myself. I have researched enough to learn that when on Armour the TSH will be suppressed. My dr argues with me and says I am hyper, I will end up with congestive heart failure if I don't DECREASE my dose! I don't know what to do. He won't listen. I am in such a state right now I can barely function. I am going to add my latest labs and beg for opinions on what to do.
TSH: 0.065 (0.450-4.500)
T4 7.0 (4.5-12.0)
Free T3 3.1 (2.0-4.4)

I had low Vit D levels and Iron also and have been supplementing. Even so, my iron has gone down 20 points from 74-59. My ferritin is 58. I don't know what is going on or what to do at this point. On another forum they always say "find another dr if they don't listen." It's not that easy, I am in Ky and no one here goes by anything but TSH.....I would appreciate any help. thanks so much.

 
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Old 10-07-2010, 03:31 PM   #2
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Re: Hypothyroidism/hairloss/hell

Some people don't respond well to one desiccated thyroid med and need to switch. Armour is not the only desiccated out there, just the most well known. There is Naturethroid, Westhroid, Erfa (Canadian) and I take Thyroid USP which is the same as old Armour but it's considered a supplement not a drug and I get it from my Naturopath.

One reason you might not be responding could be due to the reformulation that Armour underwent, another could be that you are reacting to the binder. Some desiccated thyroid uses corn starch as a binder (I think Armour does) and others use cellulose.

Could you maybe ask for another type of desiccated? A lot of people on here seem to swear by Erfa, but you have to get a script and order it from Canada I think.

 
Old 10-07-2010, 04:10 PM   #3
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Re: Hypothyroidism/hairloss/hell

Thank you for your reply. Do you agree with others that the TSH doesn't matter when on Armour? I have always been told to get my Frees up and now that they are going up the dr is going to lower my dose. Do you see my point? He argues me that a low TSH will lead to more problems. I have thought about the new formula maybe contributed to. Should I ask him to change the med and keep the same dose? I am sorry, just exhausted, and desperate. Thanks again.

 
Old 10-07-2010, 04:50 PM   #4
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Re: Hypothyroidism/hairloss/hell

Quote:
Originally Posted by chefpam View Post
Thank you for your reply. Do you agree with others that the TSH doesn't matter when on Armour? I have always been told to get my Frees up and now that they are going up the dr is going to lower my dose. Do you see my point? He argues me that a low TSH will lead to more problems. I have thought about the new formula maybe contributed to. Should I ask him to change the med and keep the same dose? I am sorry, just exhausted, and desperate. Thanks again.
I understand your frustration. I do. I think all of us that are struggling with thyroid disorders do.

Did your doc check your TPO antibodies?

I think TSH matters, but honestly I'm confused by it too. This book I'm reading right now by a guy who claims he cured his Hashimotos says that he no longer has ANY TPO AB's but his TSH is 7, however he feels no symptoms of hypothyroidism and so he's no longer taking any thyroid hormone. My TSH goes over 2 and I feel like I got run over by a truck...but I have Hashi's and so maybe it's got more to do with the TPO AB's.

I wish I could help more but I'm still learning too.

 
Old 10-07-2010, 06:03 PM   #5
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Re: Hypothyroidism/hairloss/hell

Hi,
I so understand your problem, had been on synthroid for years, synthoid/cytomel another three years and now last few months on erfa. It was not easy at first, I did not see any progress but....three months later I almost have my life back. I cannot tell you how happy I am with erfa, full of energy and euforic feeling almost. If you want, read my posts to see the history. Last 15 years were horrible and now even though I am 44 and my hormons are starting to bother me, I feel better and better. Hairloss was huge, now the problem is gone. Please keep your hope alive, there is a better alternative out there. I hope you will feel better soon

 
Old 10-07-2010, 06:08 PM   #6
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Re: Hypothyroidism/hairloss/hell

Thank you both, so much!
My antibodies were negative.
Regarding the EFRA, does it work like Armour? I don't get it because the Armour helped before. I don't know if it's the meds or if my levels are not right. And if the majority of internet folks are right, then my dr is wrong when he says my TSH must rise. So once again my head hurts! When you say, "no hairloss, got my life back and such!" I tear up!! I did too just a few years ago on the Armour and now I am not getting anywhere...so lost as to what to do.

 
Old 10-07-2010, 06:34 PM   #7
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Re: Hypothyroidism/hairloss/hell

Erfa works like OLD Armour, at least that's what people are saying. We never had Armour here in Canada so hard for me to tell. All I can tell you I was at the end of the robe few months ago when all of a sudden I was feeling much, much worse and that was the time I found this board and ERFA info. I run to my endo and the first thing I said was I DO NOT CARE ABOUT MY BLOOD TEST RESULTS, PLEASE LISTEN TO MY SYMPTOMS AND lets experiment. He listened and said I am his fifth patient on erfa, doctors have a hard time believing in natural thyroid but some starting to notice the difference. My TSH is almost nothing, t4 low and that is OK, I think. Every week I feel better and just happy, even on a rainy day
I heard you can order erfa over the internet, I was taking 125mg at first, about two and a half months later I noticed slight heart pulpitations but nothing serious ( I never in my life had any heart pulpitations, that was a new experience to me) Had a hyper feeling but after being hypo for years, I loved the feeling. I cut the pill in half thinking it was too much but then I started feeling hypo again. Now I am back on a full 125mg pill and so far so good. It takes time to feel better but trust me it can, life is great again . Just don't let any doctor tell you otherwise.

 
Old 10-07-2010, 08:12 PM   #8
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Re: Hypothyroidism/hairloss/hell

ChefPam,
When you say you had a traumatic CSection, what do you mean? Could you explain?

 
Old 10-07-2010, 08:20 PM   #9
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Re: Hypothyroidism/hairloss/hell

It's my experience that "new" Armour is junk, nothing at all like the old formula. Erfa is working for me like old Armour had done for almost 5 years prior.

While Armour was unavailable, I tried "original" Nature-throid, which worked as well for me as old Armour. Then they ruined that formula so it no longer worked at all. In the lapses when I couldn't get any commercially made thyroid, I used compounded thyroid, which was a good product but an expensive one. I'm so thankful for the internet community that clued me in to affordable and effective Erfa.

But even if you were to start using Erfa, your TSH would still be suppressed if you take a true, therapeutic dose of it. That's what T3 in a med does; it's to be expected. If the MD is a thyroid dolt who doesn't understand what T3 does, you shouldn't have much hope that you'll ever be allowed a dose that's high enough to help.

I don't know if it's been pointed out to you, but if your ferritin and iron are as low as they are, that will contribute to hair loss in a major way. You have to do something to get those levels up. It's as important as getting your FT4 and FT3 levels up. Just be sure not to take any iron supplement within 4-6 hours of your thyroid med.

BTW, are you aware that your MD is testing your total T4 instead of the more important free T4 level? That's another strike against him.

Have you tried asking your area pharmacists for the names of MDs whose natural thyroid scripts they fill? Have you checked the physician finder at Armour Thyroid (even though the product itself is now junk)? Or checked the Top Docs thyroid list? There just has to be someone in your area who better knows how to prescribe natural thyroid.

 
Old 10-08-2010, 10:15 AM   #10
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Re: Hypothyroidism/hairloss/hell

How long has it been since you had your baby? When I had mine, when they were 3 months old I lost hair by the buckets, but it corrected itself after a few months. You not only had a baby, but surgery AND you have thyroid issues on top of that.

I'm just in the beginning stages of learning what I can about my condition, so I'm not the best person to ask. But I will share with you what I have learned and what has helped me.

My hair loss was TERRIBLE....but the last 2 days it started to slow down.
I started taking more vitamins and had my Levothyroxine increased. I am hypo.

Here were my last results, I felt like crap when these were taken and my hair was falling out in handfuls.
Free T3 - 3.5
Free T4 - 8.0
Total TSH - 4.52

I just posted my story on this site titled Levothyroxine, Hair Loss Hope.

It sounds like your body is under a great deal of stress.

I'm sure others are better qualified to help...but wanted you to know I have TE too and it has slowed down. So there is hope.

My friend who had a baby 8 months ago....her hair is just now slowing down from hair loss. Her re-growth has started....she lost hair for 5 months.
AND never went bald...thin yes (she she had thin hair to begin with) but no bald spots.

I wish you the very best!

 
Old 10-22-2010, 12:02 AM   #11
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Re: Hypothyroidism/hairloss/hell

Quote:
Originally Posted by chefpam View Post
Hi to all. I am DESPERATE and would appreciate any knowledgeable feedback ASAP. I am 40. I have psoriatic arthritis, hypothyroidism, and other issues. My biggest problem right now besides pain is HAIRLOSS with a capital H. I will try to condense. I had been on Synthroid 75 mg for years. I led a normal life with some shedding of my hair. Fast forward to 7 years ago, had a traumatic csection, and have been dealing with severe issues since. My hair started coming out in handfuls. I have gone to Cleveland Clinic, Vanderbilt, Un. of Ky, many derms, 5 biopsies,etc. they say it is TE and will stop..it never does. I finally found a dr who listened to me and gave me Armour a couple of years ago and I did so much better, hair and all. Then it became unavailable. I took compounded T3/4 for awhile and had problems again. My pain became so bad from the PA that I had to begin Humira. I had all kinds of problems with it and my hair started falling out in clumps. So, now I have been off all meds for several months. My dr was able to get Armour again and put me on a dosage of 90. But I keep getting worse! Literally, all my hair is falling out in handfuls and I can barely drag myself. I have researched enough to learn that when on Armour the TSH will be suppressed. My dr argues with me and says I am hyper, I will end up with congestive heart failure if I don't DECREASE my dose! I don't know what to do. He won't listen. I am in such a state right now I can barely function. I am going to add my latest labs and beg for opinions on what to do.
TSH: 0.065 (0.450-4.500)
T4 7.0 (4.5-12.0)
Free T3 3.1 (2.0-4.4)

I had low Vit D levels and Iron also and have been supplementing. Even so, my iron has gone down 20 points from 74-59. My ferritin is 58. I don't know what is going on or what to do at this point. On another forum they always say "find another dr if they don't listen." It's not that easy, I am in Ky and no one here goes by anything but TSH.....I would appreciate any help. thanks so much.
Out stories have alot in common- Without wrtitng a very long book right now- I'd like to mention that when the T4 and TSH don't follow the "usual thyroid lab rules" or fully explain symptoms there's always "something else" really going on-
When viewing your labs, most would agree that you should NOT be on any thyroid replacement right now- But what's most important is how you feel-
The low Vit. D, muscle pain and hair loss is all very significant in helping to diagnose-
What is your B12?
What did thyroid sono and thyroid antibodies reveal?
Describe your diet and supplements you take- E.G. Do you avoid all processed food and eat lots of fresh fruit, vegetables, etc? Hopefully you're on a high (B100 supplement + at least 3000 of Biotin, and other important vitamins that are lost or decreased when body is under physical and emotional stress and hormonal fluctuations).
Has your rheumatologist mentioned fibromyalgia and/or Chronic Fatigue Syndrome as diagnoses?
What other prescription meds do you take? (Many cause or exacerbate hair loss).
Most important (to determine hypo vs. hyper), what is your pulse, B/P and temp ranges?
After 2+ years I'm still trying to get a doctor to cure (or even understand) me-as my health continues to rapidly deteriorate- I've met more incompetent MD's in recent years than I care to remember - Fortunately (being an RN over 2 decades) I've found reading everything you can find (from medical journals to alternative medicine sites) helps to empower you to find lifestyle changes and nutritional ways to ease some of symptoms and discomfort -While you (patiently and/or angrily) wait for docs to get their act together.
Eventually we both will meet one that will - but it sure is exhausting/depressing/frustrating to consume our lives with doctor appts. and tests, with no improvement...
BTW, My most recent self-help supplement added to my regimen is Magnesium Malate (400-800 mg/day)- You may want to try, since almost everyone is Mg+ deficient and this form is recommended for those with muscle pain and swelling (like fibromyalgias). (Mg+ is also very important & helpful- for numerous other body functions, including HAIR, skin, cardiac, glucose metabolism, migraines/neuro, GI, and much more).

OTC pain meds do nothing for more (some days I cry just to get out of bed)- I'm currently taking about 20 ASA/day (I know ridiculous) which offers some minimal relief- Ultracet did nothing- I refuse to take Lyrica doctor ordered (side effects)- I've tried heating pads, streching, and a zillion other things without relief- I was a very physically active person until few months ago, despite all my other thyroid symptoms- My first S/S (weakness, hair loss etc.) was about 2 1/2 years ago - But the severe "pain" and stiffness, which has completely knocked me out (from activity) is more recent- My rhematologist believes that pain and muscle swelling (fibromyalgia) is primarily "due" to thyroid dysfunction- (Lymes, Arthritis, Lupus and similar panels were negative).

My Endo and primary Docs here still playing the game of "I think you are hyPO" and "I think you are hyPERthyroid" - So depending on which off my doctors you were to speak to this week- I should be on methimazole (treats hyper) and/or I should be on Levothyroxine (treats hypo)-
I'm on none since docs at ER medical center last February took me off Levothyroxine stating I was "thyrotoxic) -Admit was for the Chest Pain and very high B/P and pulse= Dx of thyrotoxicosis. At that time my TSH was <0.005 and T4 was about 7.

BTW, Suggest pituitary lab testing - My MRI brain showed cysts, which may actually be the primary cause of thyroid dysfunction (explaining abnormally low TSH)- Repeat Labs (E.G. Prolactin, ACTH, Cortisol, etc.) pending -I'll get results tommorow-

And regardless of which endocrine gland is the source of your illness and symptoms, it certainly will reak havoc on your adrenals (have them checked and re-checked)- My cortisol's have been very low (adrenal sufficiency), but Doc here doesn't want me on Cortef- which I did take when I lived down south, which seemed to make me feel a little better (more energy)-

Sorry so long and disorganized- I'm having a serious bout of "brain fog" tonight-
One last question is your weight:
Is it more than 10-20% over or under what it should be?
Obesity is rarely due to thyroid dysfunction (but a good excuse for many eating high carb, high fat diets)- BUT, if you have recenttly noticed either unexplained weight loss with extreme hunger (with other signs your body is "hyper" such as increased pulse, irritability, anxiety, tremors, etc.) -that supports you are probably in a hyperthyroid state right now, and should be taken off all thyroid supplements...Sudden weight gain is "sometimes" due to hypothyroid, but many other factors needed to be evaluated to determine- E.G. Weight gain in 40's & 50's more likely due to other factors (not hypothyroidism)-

I've taken both Levo and Armour in past- neither relieved symptoms, including very dry, coarse and rapidly falling out (handfuls) of hair (and eyelashes)-
So sad since that WAS always my best physical features (thick, healthy, shiny hair and very long dark eyelashes)- I feel so ugly right now, in addition to the extreme weakness, body pains, etc. even going out of the house for anything other than necessities like food shopping has become a huge accomplishment- (Hard to believe since I used to be probably the most friendly and socially active person you might ever met)- Very sad for my 10 year old- being stuck with an invalid (often depressed/frustrated/angry) single Mom-
Did I mention how my usually very successful business is just about completely shut down? (The down-side of self-employment= Too sick to work- You don't get paid)-
Like you, I am still desperate to find a doctor that can truly help-
1 more question- Did doctor check EBV? Some think this is important (supports CFS and similar autoimmune-type diseases)- Mine was Positive in August- I was glad at first, since I thought this explained my extreme weakness (but other doc disagreed and said + EBV/Mono means absolutely nothing-

Who knows? But I hope some of the thoughts I've put here may help you to get in the right direction (back to wellness) sooner-
I'm going to post all my test results in a new post here (I did once in March 2008) and hope somebody can help me too, which may help you and others who have these multi-faceted syndromes that are destroying our lives.
Take care-

Sorry my letter may sound so negative, depressing or sarcastic (against medical community)- If you knew all the bad things that have happened to me this week you would definetley understand- (Please excuse typos & grammar- Before brain fog I was an excellent writer/speller- Now I can't live without spell-check- which I'm too tired (and in pain) right now to do- Gotta go lay down, after more ASA, heating pads and whatever I can think of to ease pain- and hope/pray tomorrow is a better day

OOops, one more question/symptom to review- If you are extremley tired, exhausted, weak, sleepy, etc. but are unable to sleep more than a few hrs. at a time- this also signals that you are probably HYPERthyroid, not hypothyoid- Plus, a thyrotoxic condition will also render sleeping pills (that used to work) useless and ineffective.
And for all those docs that like to blame eveything (thyroid/endocrine) on psychological/psychiatric causes, a person who is "manic" e.g. with bipolar disorder will not feel severe "weakness"/inability to function w/ normal ADL's/lethargy and insomnia at the same time -
A truly (psych) manic person will be "active" and hopefully productive, (not lying in bed wide awake, with their racing heart, shakiness, tremors- Although I am unable to sleep (as usual) I wish I was "manic" right now- My entire house needs a major cleaning, but instead I'm now going to limp/crawl to my bed to lie down, since sitting at my computer (to work) or read (posts here) has become far too painful to bear.
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Old 11-05-2010, 05:53 AM   #12
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Re: Hypothyroidism/hairloss/hell

Hi,
I had my thyroid removed two years ago and went through the hair loss
issues too. I just wanted to mention that finding the right meds is
important. Synthroid is where mine started to fall out the worse. I got
better on westhroid but then they reformulated! After reading another
site about the binders being changed in the westhroid, i started chewing
my pills and the hairloss stopped. I've also in the last few weeks
tried a low carb diet (with fruits, beans, veggies) and actually lost my
first 5 pounds in 2 years! Hang in there and try not to panic.

I tried Erfa and immediately felt horrible. I was very disappointed as I
have read so many positive testimonies about it. Just an expample though
that one pill doesn't fit all.

After two years, I still have a few struggles (sore feet) but mentally I
am miles better!

 
Old 11-08-2010, 12:24 PM   #13
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Re: Hypothyroidism/hairloss/hell

Quote:
Originally Posted by chefpam View Post
Hi to all. I am DESPERATE and would appreciate any knowledgeable feedback ASAP. I am 40. I have psoriatic arthritis, hypothyroidism, and other issues. My biggest problem right now besides pain is HAIRLOSS with a capital H. I will try to condense. I had been on Synthroid 75 mg for years. I led a normal life with some shedding of my hair. Fast forward to 7 years ago, had a traumatic csection, and have been dealing with severe issues since. My hair started coming out in handfuls. I have gone to Cleveland Clinic, Vanderbilt, Un. of Ky, many derms, 5 biopsies,etc. they say it is TE and will stop..it never does. I finally found a dr who listened to me and gave me Armour a couple of years ago and I did so much better, hair and all. Then it became unavailable. I took compounded T3/4 for awhile and had problems again. My pain became so bad from the PA that I had to begin Humira. I had all kinds of problems with it and my hair started falling out in clumps. So, now I have been off all meds for several months. My dr was able to get Armour again and put me on a dosage of 90. But I keep getting worse! Literally, all my hair is falling out in handfuls and I can barely drag myself. I have researched enough to learn that when on Armour the TSH will be suppressed. My dr argues with me and says I am hyper, I will end up with congestive heart failure if I don't DECREASE my dose! I don't know what to do. He won't listen. I am in such a state right now I can barely function. I am going to add my latest labs and beg for opinions on what to do.
TSH: 0.065 (0.450-4.500)
T4 7.0 (4.5-12.0)
Free T3 3.1 (2.0-4.4)

I had low Vit D levels and Iron also and have been supplementing. Even so, my iron has gone down 20 points from 74-59. My ferritin is 58. I don't know what is going on or what to do at this point. On another forum they always say "find another dr if they don't listen." It's not that easy, I am in Ky and no one here goes by anything but TSH.....I would appreciate any help. thanks so much.
Have you tried taking supplements (for hair loss) such as Magnesium (800-100mg/day in divided doses), Zinc (50mg/day), Biotin 3000-5000meq (yes very high dose but as my Dr. explained lower than 3000 will do nothing to help hair loss, and she was right), B100 (Mega B- once or twice/day)...
B vitamins are excreted in urine, so don't worry about taking too much -
Magnesium supplement is critical for almost everyone with chronic disease - MG+ helps numerous body systems including hormones, heart, neuromuscular, stress, gigestion, insomnia, migranes, etc.
Go with the most absorbable type you can find -I use MG+ malate since it also helps to decrease muscle pain from my fibromyalgia & back pain from injury...
Take the Mg+ with Zinc, some people also like to take with calcium (I don't cause I eat plenty of high calcium foods, and too much calcium depletes Mg+ and can cause other problems...

You may also choose to add (for hair) selenium, Vit E and there's a few others I would recommend, but need more info...

Remember an apple a day keeps the Dr. away (filled with useful vitamins, try apple sauce or baked apples if you don't like raw + Nuts, nuts, and more nuts!(Just kidding -Nuts/seeds are fulled with numerous hair healthy vitamins - a handful/day is enough - If you like try sesame, pumpkin, cashews, almonds -
If you don't like nuts just throw some in things you bake (like muffins, breads, shakes, meatloaf or whatever)...I also keep flax seed handy (rich in necessary hair vitamins and throw a tablespoon or more into many things I cook/bake.

Getting your hormones back in balance will be the most effective remedy for treating hair loss, but in meantime these supplements (and of course eating foods rich in these vitamins) will certainly help.I used to have HANDFULS of hair falling out before adhering to above diet and vitamin regimen- My hair still falls out a bit, but not nearly as bad + it's not as dry as before, when my thyroid problems started.
Guess you already have been advised to stay away from chemical-laden shampoos and conditioners (?)- Try basic castille soap and add some oils as desired (my favorites are tea tree, cameilla oil, jojoba oil, rosemary...all great for hair health) -I also soak my hair (overnight) in custom mixtures using above and other oils, as needed.

Even if this regimen doesn't help your hair (I think it will) it certainly will do wonders for your skin and nails and overall health and energy levels.
Note: Many find Mg+ also helps with sleep (insomnia is common to thyroid disorders) -Take (2) Mg+ at night , and another 2 during day before meals...

Add: I don't think anyone has read my other (long) posts, but in event you have - my thyroid issues is still not being treated (insurance does not have any local endos or doctors willing to do biopsy recommended...therefore I've convinced myself that I must adhere to my strict natural/healthy diet supplements (which helps, but is hard to adhere to when you're feeling depressed), since if I wait for insurance to find doctors I'll be too sick or dead by then (It's been several months waiting for biopsy to be done, sonos suggestive of thyroid and lymph node cancer, per my primary MD--I'm told to be patient and/or switch insurances...)- Last check (month ago) my TSH was 0.005...Not on meds.
__________________
If you are going to believe, know what you believe, and back it up with something- A sunset, child, and chocolate cookie can remind us of the important things in life...

Last edited by kathryn32940; 11-08-2010 at 12:35 PM. Reason: ADD

 
Old 11-08-2010, 08:31 PM   #14
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Re: Hypothyroidism/hairloss/hell

HI ChefPam
I am in Ky also just over in Louisville. I have hypothyroidism, fibro and lupus, and back problems, low Vit D. I know how hard it is to get a good doctor but keep trying. Seriously, I went through many doctors until I found one who listens to me. I use a Dermie for the lupus who shares all info with my GP. And he shares info with her. This way neither are in the dark and always up to speed with me. The Low Vit D seems to go with the thyroid issues. Make sure to take all Vitamins at a different time of day from your thyroid meds. From my experience when I took them near each other my thyroid meds did not work proper, and I had to get the dose increased.
Good Luck
Teeha

 
Old 11-08-2010, 09:10 PM   #15
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Join Date: Dec 2009
Location: usa
Posts: 33
reba1985 HB User
Re: Hypothyroidism/hairloss/hell

My vitamin d levels didn't change until my obgyn gave me a prescribtion for it
5000 iu of vitamin d - once a week. It made a huge difference!

 
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