Author Topic: Hair Loss Update or there will be soon  (Read 1128 times)

sunkissed64

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Hair Loss Update or there will be soon
« on: November 29, 2011, 10:47:06 PM »
Had the upteenth blood work done on Monday and am seeing the dermatologist on Friday. She ran a bunch of blood work to test my hormone levels that's what she suspects is up with me. I'll let you guys know what the blood work states. If she can't get to the root of my astounding and frightening hair loss next stop my less than helpful rheumie. I live in Miami Florida..just throwing that out there in case someone knows of a good rheumie down my way. I'm independent and in control most of the time. Not married no kids. It boggles my mind how doctors make me feel like I'm 10 and not 47. Lost my job a year and a half ago, my elderly grandmother is headed down hill, and my health is kicking me in the bum and I'm poorer than I have ever been. Depressed doesn't even cover it. Something's gotta give. I just wish it wasn't my hair Unemployment runs out soon and my bills  oh God my bills..sigh Hope 2012 is a better year. The holiday season with no family of my own (hubby and kids) makes this season so bittersweet. If it weren't for my twin sister sometimes I don't think I could take it.

Joe S.

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Re: Hair Loss Update or there will be soon
« Reply #1 on: November 30, 2011, 04:35:13 AM »
Please find someone to help you with your depression. It is a very hard year. I hope things go better for you in the next year. I am glad that you have your twin.
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mshistory

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Re: Hair Loss Update or there will be soon
« Reply #2 on: November 30, 2011, 07:10:17 AM »
Oh, gosh, with all that stress in your life, I wonder if you are suffering from a chronic telogen effluvium? It could be hormones, but SjS can cause hair loss as well.

I definitely know how you feel about it though - I'm 32 and losing my hair. I have been diagnosed with androgenic alopecia and my rheumy thinks my SjS is causing some of the hair loss too. Things that have helped me cope: saw (and still periodically see) a psychiatrist to treat my anxiety and depression; bought a nice synthetic wig to have in the house as a backup (I ordered from wigs.com and got a nice wig with a monofilament cap for about $120); cut off most of my hair into a short pixie cut to help hide the hair loss; use Rogaine foam at night.

I hope 2012 is a much brighter year for you as well  :)
« Last Edit: November 30, 2011, 12:18:24 PM by Linda196 »
SLE and SjS. ANA >1:1280 speckled,
SS-A >8.0, RF positive. Benlysta, Botox for migraines, Clonazepam, Zoloft, Imitrex for migraines, CellCept 1500 mg, Plaquenil 200 mg, Restasis, Zofran for nausea, Gabapentin, Evoxac and Norco for pain.

Jorja

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Re: Hair Loss Update or there will be soon
« Reply #3 on: November 30, 2011, 08:18:25 AM »
I'm sorry. 
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Reabee2

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Re: Hair Loss Update or there will be soon
« Reply #4 on: November 30, 2011, 03:28:44 PM »
I live in Miami Beach, FL.  I saw your post asking about a rheumatologist.  I am not sure where in Miami you live, but if you haven't looked into her yet I recommend Dr. Elana Oberstein.   She is located in Aventura, FL. 
http://www.rheum-care.com/EXPAGES/Dr%20Elana%20M%20Oberstein.asp
That website will also give you all the information you need to contact her office and set up an appointment.  I do not know anything about the other people in her office, but I do like her.
Good luck!

sunkissed64

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Re: Hair Loss Update or there will be soon
« Reply #5 on: December 03, 2011, 10:23:59 PM »
I went to the dermatologist as planned on Friday. Ended up going to my car and crying out of sheer frustration afterwards. Only three results came back outside the normal range:

RDW (this apparently indicates a B12 deficiency or being anemic.  Mine was 16.6 (high) normal range is 11.7 - 15.0

TSH (one of the thyroid hormones) came back low 0.436 normal is 0.450 - 4.500

ANA came back positive abnormal  it always does when I'm flaring.

I don't know if it's unfortunately or fortunately but the two hormones that would cause hair loss came out normal so she said go see my GP who handles my thyroid. SHe said unbalanced thyroid levels DO cause hair loss like mine.

I ask if this could be pre menopause and she said no that pre menopause doesn't cause anywhere near this type of hair loss.

I cried in my car because I'm without a job, bills up the wazoo run out of money and this smells like another round of 'see the dr.' My GP is a butthead that doesn't listen to me. I've already told him I wanted to try the T3/T4 drug since I felt synthroid wasn't cutting it or worse now it 'might' be causing my hair loss. I've already had blood drain 3 times by 3 separate doctors and I'm holding my breath over the three doctor's visits and lab work since even though I pay close to $700 a month for health insurance it still doesn't cover most of my costs. This makes me more than a little angry.

My rheumie isn't any better  and I'm scared switching since I dunno how much my insurance is gonna cover. I'm so sick of this. The stress of being sick and jobless and poor is wearing on me.

I'm hoarse, achy muscles and joints, ribcage is hurting and having major dry eye and mouth, mouth which I'm sure is giving me problems in my esophagus.

SIGH

Sunny

gurs

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Re: Hair Loss Update or there will be soon
« Reply #6 on: December 04, 2011, 05:58:00 AM »
Sunny,

Have they checked your estrogen and testosterone levels? Just wondering....I always had thinning hair and some hair loss, but after my hysterectomy, and instant menopause, my levels dropped to almost 0, and Im almost bald. Ive been to at least 10 different doctors, and most of them saying that estrogen is the key factor. My levels are at 25 right now and Im working on trying to find an estrogen I can tolerate.
Most of my hormone doctors say estrogen should be at least 150-200 range...you also need testosterone. As soon as I cut back on this, i lost most of my hair within the month.  Your 47 years old, could be early menopause...along with the autoimmune thing, but my guess its hormones.
I would find a new hormone doc.....menopause issues can certainly cause this....I hate when they just blow this off. You might need some HRT or something? I agree with you on the T3/T4 combo..find a doc who can give you some Armour/Cytomel to try as well as your synthroid.

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« Last Edit: December 04, 2011, 06:00:47 AM by gurs »
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Skylar

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Re: Hair Loss Update or there will be soon
« Reply #7 on: December 04, 2011, 07:31:03 AM »
Clearly 2011 is not a good year for you - I hope 2012 is much better.

Who knows why we lose hair? You're under an incredible load of stress, autoimmune diseases, headed into menopause territory etc. Any and all of these things can cause hair loss and sadly there is no guarantee that fixing your health will cause the hair to grow back >:( I hope you get a re=evaluation in your thyroid meds and that it does reverse your hair loss. It's sad, but life can be very unfair.

I lost most of my hair in my twenties and menopause was the nail in the coffin so I wear synthetic wigs. OMG you wouldn't believe how comfortable and well made they are - people can't tell you are wearing them and I get compliments regularly on both the style and color of my "Hair" - and it is my hair since I paid for it. The cheapest places to buy quality wigs on the internet is galleryofwigs.com and namebrandwigs.com.   Wigs.com tends to be overpriced although they often have sales which make them more reasonably and all three of these sites provide good, reliable service. There are a couple of support boards for hair loss - I belong to http://www.wigsupport.com which you have to register to see, there is also www.heralopecia.com. Please check these out - it helps to know that you aren't alone.
« Last Edit: December 04, 2011, 07:49:23 AM by Linda196 »

mshistory

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Re: Hair Loss Update or there will be soon
« Reply #8 on: December 04, 2011, 07:47:14 AM »
Unfortunately, we women can suffer from AGA just like men. A dermatologist who specializes in hair loss should be able to use a special camera that looks for miniaturized hairs. Miniaturization usually means AGA. They may be willing to prescribe you finasteride, although it's unlikely insurance would cover it and there's not a lot of evidence that it works well in women. The standard treatment for AGA in women is minoxidil (the 5% is almost always recommended over the 2% targeted at women - if you grow a little facial hair from the 5%, it's no big deal - it can be waxed right off  ;D )

I learned the hard way that the other treatment usually recommended for women with AGA, spironalactone, is NOT a good idea for those of us with SjS. Spiro is a diruetic that has anti-androgenic properties, and even though I told my derm. I had SjS, she didn't think it would cause any problems for me....not sure what planet she's living on  ::)

To treat my hair loss, right now I'm just using the Rogaine Foam at night. The SjS may also be playing a part in my hair loss.

I expect that by the time I hit menopause, I will be as bald as my husband  :P

Of course, your thyroid problems could definitely be causing your hair loss too, so perhaps finding a doctor willing to treat your thyroid problems better will help.

Best of luck!
SLE and SjS. ANA >1:1280 speckled,
SS-A >8.0, RF positive. Benlysta, Botox for migraines, Clonazepam, Zoloft, Imitrex for migraines, CellCept 1500 mg, Plaquenil 200 mg, Restasis, Zofran for nausea, Gabapentin, Evoxac and Norco for pain.

Scottietottie

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Re: Hair Loss Update or there will be soon
« Reply #9 on: December 04, 2011, 10:22:13 AM »
Hi  :)

Thyroid imbalance can certainly cause hairloss. Stress can also cause hairloss. Thyroid imbalance can cause acute depression. Try to get you thyroid investigated and treated and other things may be more manageable.

Take care - Scottie  :)
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Re: Hair Loss Update or there will be soon
« Reply #10 on: December 04, 2011, 12:07:17 PM »
I live in Fort Lauderdale.  I saw Dr. Sheerer for many years.  She's a great rheumie.  Long wait time in the waiting room though.