Anyone have issues with continuous hair loss?

[MaryAnn]

I know this may sound trivial compared to the neuro, cardio-vascular and immune system issues my daughter has experienced, along with everyone on this forum, but does anyone have issues with their hair coming out?

My daughters hair has been falling out for over 8 months. Her thyroid was tested but no doctor will relate it to that. The large amount of hair loss started about 2 months after a bad flare-up. She also began experiencing several other symptoms that can be related to a hormone/thyroid problem (tachycardia, fatigue, weight loss). I know these are also common in PWC.

Being young, this has been very depressing to her and she is worried that she has an autoimmune disease/alopecia. With all her medical issues this is just one more thing to add to the pile.

Has anyone else had this issue?

Thank you for any ideas or treatments.

 

[caledonia]

What specific tests did they do for thyroid?

You need a complete thyroid panel, not just TSH, to properly diagnose thyroid problems.

That would be TSH, free T3, free T4, and thyroid antibodies.

 

[rlc]

hi Maryann hair loss isn't really a symptom of cfs especialy in a female, i would suggest pushing the doctor to look harder for the cause! I have done a search for you on wrongdiagnosis.com I entered weight loss, fatigue, rapid heart beat and hair loss it came up with 12 possibles it's note always totally accurate but this is what it said adrenal cancer, adrenal adenoma familia, adrenal gland hyperfunction, adrenal incidentaloma, amiodarone-teratogenic agent, auto immune thyroid disease, hyperadrenalism, hyperthyroidism teratogenic agent, pernicious anemia, resistance to thyroid stimulating hormone, thyroid disorders and woodhouse sakatisyndrome. here the web address it has details about these contitions http://symptoms.wrongdiagnosis.com/...oss/rapid-heart-beat/weight-loss-desc-all.htm from this list i would say it would deffinatly be a good idea to get doctor to test all adrenal hormmones cortisol aldosterone ets and get thyroid looked at again, theres alot of evidence that the TSH referance range they use is wrong. so doctor might be missing something, have they done T3, T4? Get copies of all blood tests that have been done so you can check them! and if there's any other unussaul symptoms or more information you have i,d be happy to have a look at it. check her skin, hands, nails for changes of colour (hyperpigmentation, hypopigmentation) these can occur in endochrin disease and may help diagnose. hope this helps you best of luck !

 

[Tulip]

Yes I have had this off and on for the last 18yrs and sorry but it IS a common symptom of me/cfs. I knew many females with me/cfs when I first got sick, that had the same problem. It seems to go hand in hand with more severe types of me/cfs.

 

[dannybex]

Check for Iron deficiency...

Hair loss is a common symptom of iron deficiency, even if the patient doesn't have anemia. You might ask your doctor to check her ferritin, hemaglobin and hematocrit levels.


"A review of 40 years of research shows that iron deficiency has a much closer link to hair loss than most doctors realize. It may be the key to restoring hair growth, Cleveland Clinic dermatologists find.

"We believe that treatment for hair loss is enhanced when iron deficiency, with or without anemia, is treated," Leonid Benjamin Trost, MD; Wilma Fowler Bergfeld, MD; and Ellen Calogeras, RD, MPH, write in the May issue of the Journal of the American Academy of Dermatology.

It's a controversial issue. Not every study shows a link between iron deficiency and hair loss. Trost says there's not enough hard evidence -- yet -- to make iron-deficiency screening a routine procedure for people with hair loss.

But study researcher Bergfeld has been doing this for years. And she's finding that whatever the cause of hair loss -- for both women and men -- having too little iron in the blood makes it worse.

"What Dr. Bergfeld has found in decades of experience, is when she treats patients for iron deficiency --even in the absence of anemia -- it can maximize their ability to regrow hair," Trost tells WebMD. "It is not the silver bullet for baldness, but it can definitely help maximize how a patient regrows hair."

The Cleveland Clinic isn't alone in doing this. George Cotsarelis, director of the University of Pennsylvania Hair and Scalp Clinic, has studied iron supplementation in women with various forms of hair loss.

"From our clinic's experience, it is clear to me that if you replenish hair-loss patients' iron stores with iron supplements, they are more likely to regrow hair, or at least stop hair shedding," Cotsarelis tells WebMD. "And they don't have to be anemic. That is the biggest mistake doctors make."


I had a sudden onset of hair loss last year -- about a year and a half ago. My doc checked for heavy metals...arsenic was a little elevated, but still within the normal range. However, even though my ferritin was in the normal range, my hematocrit and hemaglobin were just on the line of 'anemic'. I started taking iron supps, and within 2 weeks, the hair loss dramatically lessened. At the worst, I was losing 250+ hairs a day...in my brush or comb...and that dropped to about 40-60 a day.

Hope this helps.

Dan

 

[leaves]

high dose biotin helps many people with hair loss

 

[MaryAnn]

Thank you all for the information. You are correct that several doctors only tested TSH. There is only one GP who treats autistic children that tested some TH levels and one was too high and the other too low. I cannot recall the levels off hand. He also stated that she had extremely low levels of iodine and recommended tablets. However, her hair is still coming out. I will ask about the iron and also biotin. Thanks much again.

 

[ixchelkali]

I don't have a suggestion, but, yes, I've had that problem. All of my hair is much thinner. I used to have Freda Kahlo eyebrows, but now they're kind of moth-eaten, and even my eyelashes are shorter and thinner. I've had my thyroid checked with a complete panel.

It's not one of the symptoms that makes the symptom lists, but I've heard a number of ME/CFS patients mention it.

 

[leaves]

Thank you all for the information. You are correct that several doctors only tested TSH. There is only one GP who treats autistic children that tested some TH levels and one was too high and the other too low. I cannot recall the levels off hand. He also stated that she had extremely low levels of iodine and recommended tablets. Howevrer, her hair is still coming out. I will ask about the iron and also biotin. Thanks much again.

Iodine defficiency can cause thyroid instability, You can certainly try iodine supplements (such as iodoral) but build up slowly as you will see die off and toxicity symptoms at the start. I wouldnt go over one tablet a day the first few months. If there really is a deficiency you may have to supplement this for several years.

 

[caledonia]

iodine amount

1 tab of Iodoral per day is a huge amount. I started out taking 1/128 of one drop of Iosol which was already diluted according to the instructions on the bottle. I gradually worked up to 1 drop of Iosol undiluted per day. (this is nowhere near Iodoral amounts)

Then my naturopath said a new study came out showing you shouldn't take huge amounts of iodine. So they had me cut back to 1 undiluted drop of Iosol per week.

 

[maryb]

I experienced hair loss after taking Valtrex only for 2 weeks, I had thought it was already thinning slightly but the increase was obvious after this medication. Could any of the meds your daughter is taking have that side effect? If you do think it may be iron deficiency best way to increase that is to have spinach 3 times a week this will soon build up her levels, better than pills.

 

[Min]

Ever since I first contracted ME 24 years ago my hair hs been continually falling out very fast and yet also growing back again really fast - it's all different lengths and driving me round the bend. My nails grow very fast too, but are weak. It's weird

 

[JAXintheCity]

I'm really sorry your daughter is suffering, so. When I was first diagnosed, my hair thinned out significantly, too. After ten years, it's back to it's thick curly self... even though I still "shed" alot... But hopefully, it will pass when the flare passes.

Also, has your doctor looked at Lupus? I know two people with hair loss ... and both of them had Lupus. The diseases can be very similar.

I hope your daughter has better days.

 

[Mala]

Check, got that to.

 

[leaves]

silica and msm help people too, but I'd watch it with msm as a lot of Pwc are sensitive to it.

 

[leaves]

1 tab of Iodoral per day is a huge amount. I started out taking 1/128 of one drop of Iosol which was already diluted according to the instructions on the bottle. I gradually worked up to 1 drop of Iosol undiluted per day. (this is nowhere near Iodoral amounts)

Then my naturopath said a new study came out showing you shouldn't take huge amounts of iodine. So they had me cut back to 1 undiluted drop of Iosol per week.

yes I agree, drops are much better; I had to break the tab which was messy. Anyway i now found sea salt with sea veggies in it, so ill be using that after I finished the tabs.

 

[anncavan]

My hair starts falling out whenever my thyroid levels start acting up. I've found this website as a great resource for thyroid information: http://www.holtorfmed.com/thyroid-disorders.html

This was the first doctor's office to recognize I had CFS, as well as a thyroid problem. I had endocrynologists tell me I was a hypochondriac for months. This place is associated with fatigue centers throughout the country. They are extremely holistic, and do try to see you supplements on top of traditional medicine. However I did have success with them for a while. I found they also respect you if you just want your thyroid taken care of too. If you're close to one of their clinics, maybe you could try there? or at least take some of this information into your doctor... or a new doctor!

Good luck to you and your daughter!

 

[rlc]

hi anyone with thyroid issue may be interested in this, new research shows that the referance range for TSH is wrong in most labs its(0-5-5.0) it should be as low as (0.5-2.5) which means alot of people arnt getting treated. this has huge implications for CFS as the symptoms of hypothroidism and CFS are very similar and alot of people might have the wrong diagnosis!!!!! full article here http://thyroid.about.com/od/gettestedanddiagnosed/a/tshtestwars.htm anyone with hairloss issues should be checked for hemochromatosis(ironoverload) it causes severe fatigue and hairloss i know of four people in my area who had been diagnosed with CFS only to find out that theyd been missdiagnosed and had hemochromatosis all the time. it affect one in every 250 people and is one of the most miss diagnosed diseases in the world and even when it is people have often suffered for years before they find out. PLEASE dont take iron supplements until you know for sure you don't have it, lots of inhformation on it here www.ironoverload.org to maryann low iodine definatly involved in thyroid function try and get it raised you might find this interesting http://www.thyroid.org/patients/patient_brochures/iodine_deficiency.html hope this helps best of luck

 

[serenity]

my meds cause hair loss. i have gotten myself some extensions, & will consider a wig if needed. i tried to come off the meds but just got too sick, so i find other ways to deal with the hair loss. it can be very upsetting.

 

[Uno]

It's terribly upsetting....my hair has fallen out in clumps/handfulls to the extent where I have a bald ring on my scalp. I ended up getting my hair all cut short and a side style parting to hide the hole but my eyebrows have gone too and lots of my eyelashes...I don't look pretty.