Aa
What should I be asking?
TSH 2.57 (.450 - 4.50) , PTH Intact 29', High cholesterol for many years that does not respond to meds, osteoperosis for 10 years not responding to meds, latest symptom is hair loss of eyebrows, arms, legs and some scalp thinning. Dr. said thyroid issue is unlikely. I am a 55 year old female. Can you help me understand?
Unfortunately, it does. All of my vitamin tests came in normal. A scalp biopsy was done and I will have definite results tomorrow. Eyebrow loss and upper body hair loss are not uncommon with this disease, which is very rare. No one wanted to do a free T3 and Free T4, but derm did order all the sex hormone tests just to make sure. I am currently awaiting my HMO to approve a visit to an endocrinologist. Here is something interesting. The CARF (the organization responsible for the research in the type of alopecia) has had some new insights, which says that the use of Actos (a diabetes drug) has been shown to give benefits. It appears that there is a build up of toxic lipids in the patients with this disorder and this diabetes drug apparently aids with destroying the toxins. Here is what they say:
The above treatments are usually effective
in controlling signs and symptoms
but may not halt progression of the hair
loss since they do not address the underlying
pathophysiology. In a recent
landmark report,molecular studies of
scalp tissue from patients with lichen
planopilaris (LPP) revealed a loss of
peroxisome proliferator-activated receptor
gamma (PPARg), a protein that
regulates inflammation and lipid
metabolism in the pilosebaceous unit.
This loss leads to a buildup of toxic
lipids that generates inflammation and
eventual destruction of the hair follicle
and sebaceous gland. A similar PPARg
deficiency has been found in frontal
fibrosing alopecia.*
Further study is still needed in central
centrifugal cicatricial alopecia and the
neutrophilic cicatricial alopecias. The
role of PPARg in cicatricial alopecia is
supported in mice in which a targeted
deletion of PPARg in follicular stem cells
causes scarring alopecia.
These findings suggested that treatment
with PPARg agonists may provide a new
upstream treatment strategy for patients
with LPP and frontal fibrosing alopecia.
Pioglitazone and rosiglitazone are glitazones
and PPARg agonists that are FDAapproved
and used widely to treat type 2
diabetes mellitus as well as atopic dermatitis.
Pioglitazone was successful in a
47 year-old male patient with active and
symptomatic LPP who had failed all treatments.**
The most common side effect of the
glitazones is dosage dependent weight
gain as a result of fluid retention and
edema. Other reported adverse reactions
include an increased risk of myocardial
infarction with rosiglitazone, CYP
P450 drug interactions with pioglitazone
They use drugs like Actos. Do you think Actos could also lower my cholesterol and improve my liver panels which have come back lousy (again)?
The above treatments are usually effective
in controlling signs and symptoms
but may not halt progression of the hair
loss since they do not address the underlying
pathophysiology. In a recent
landmark report,molecular studies of
scalp tissue from patients with lichen
planopilaris (LPP) revealed a loss of
peroxisome proliferator-activated receptor
gamma (PPARg), a protein that
regulates inflammation and lipid
metabolism in the pilosebaceous unit.
This loss leads to a buildup of toxic
lipids that generates inflammation and
eventual destruction of the hair follicle
and sebaceous gland. A similar PPARg
deficiency has been found in frontal
fibrosing alopecia.*
Further study is still needed in central
centrifugal cicatricial alopecia and the
neutrophilic cicatricial alopecias. The
role of PPARg in cicatricial alopecia is
supported in mice in which a targeted
deletion of PPARg in follicular stem cells
causes scarring alopecia.
These findings suggested that treatment
with PPARg agonists may provide a new
upstream treatment strategy for patients
with LPP and frontal fibrosing alopecia.
Pioglitazone and rosiglitazone are glitazones
and PPARg agonists that are FDAapproved
and used widely to treat type 2
diabetes mellitus as well as atopic dermatitis.
Pioglitazone was successful in a
47 year-old male patient with active and
symptomatic LPP who had failed all treatments.**
The most common side effect of the
glitazones is dosage dependent weight
gain as a result of fluid retention and
edema. Other reported adverse reactions
include an increased risk of myocardial
infarction with rosiglitazone, CYP
P450 drug interactions with pioglitazone
They use drugs like Actos. Do you think Actos could also lower my cholesterol and improve my liver panels which have come back lousy (again)?
I have no experience with that issue, but I did dome reading and ran across this info.
"Diagnosis is usually verified by the presence of the typical whitish, scarred strip of hair loss at the hairline and possibly reddened, inflamed hair follicles. However, other evaluation methods may include a complete blood count, a thyroid function panel and other hormone tests.
Oral steroids and antimalarials may temporarily slow the progression of hair loss, but they could have side effects such as depression, insomnia, abdominal pain, skin rashes and retina damage. And despite the assumed hormonal link, hormone replacement therapy has not been shown to be of any benefit.
Some people think there is little that can be done for frontal fibrosing alopecia but this is not the case. Treatment is based around trying to control the inflammation causing the damage to the hair follicle. While hair can never grow back from a follicle that’s been scarred, a personalised combination hair loss treatment course including minoxidil – a clinically proven hair growth stimulant – may prevent further hair loss and may thicken up existing hair. So meanwhile, quiz your stylist for clever techniques that will help conceal the areas of hair loss.
Up to 50% of women experience hair loss after menopause and most of the time it’s presented as diffuse-spread hair all over the scalp, or thinning hair at the crown. Clinical hair loss treatments have demonstrated to be many a girl’s saving grace when it comes to maintaining hair growth, be it pre- or post-menopause."
Does that sound like how your hair loss was diagnosed by the derm? The reason I ask is that your description of hair loss was " eyebrows, arms, legs and some scalp thinning." Somehow this does not sound the same as the frontal fibrosing alopecia. So I wonder just how assured that diagnosis really is. I think that your symptoms, the cholesterol issue, and the liver issue indicate that you should do the additional thyroid testing, just to be sure. I would suggest testing for Free T3 and Free T4 (not Total T3 and T4), along with Vitamin A, D, B12, and ferritin.
"Diagnosis is usually verified by the presence of the typical whitish, scarred strip of hair loss at the hairline and possibly reddened, inflamed hair follicles. However, other evaluation methods may include a complete blood count, a thyroid function panel and other hormone tests.
Oral steroids and antimalarials may temporarily slow the progression of hair loss, but they could have side effects such as depression, insomnia, abdominal pain, skin rashes and retina damage. And despite the assumed hormonal link, hormone replacement therapy has not been shown to be of any benefit.
Some people think there is little that can be done for frontal fibrosing alopecia but this is not the case. Treatment is based around trying to control the inflammation causing the damage to the hair follicle. While hair can never grow back from a follicle that’s been scarred, a personalised combination hair loss treatment course including minoxidil – a clinically proven hair growth stimulant – may prevent further hair loss and may thicken up existing hair. So meanwhile, quiz your stylist for clever techniques that will help conceal the areas of hair loss.
Up to 50% of women experience hair loss after menopause and most of the time it’s presented as diffuse-spread hair all over the scalp, or thinning hair at the crown. Clinical hair loss treatments have demonstrated to be many a girl’s saving grace when it comes to maintaining hair growth, be it pre- or post-menopause."
Does that sound like how your hair loss was diagnosed by the derm? The reason I ask is that your description of hair loss was " eyebrows, arms, legs and some scalp thinning." Somehow this does not sound the same as the frontal fibrosing alopecia. So I wonder just how assured that diagnosis really is. I think that your symptoms, the cholesterol issue, and the liver issue indicate that you should do the additional thyroid testing, just to be sure. I would suggest testing for Free T3 and Free T4 (not Total T3 and T4), along with Vitamin A, D, B12, and ferritin.
saw the derm who said it is frontal fibrosing alopecia. it is a rare type of alopecia that occurs in menopausal women. The hair loss is permanent and cannot be stopped or cured. I am devistated. Thanks for your help.
We have many experienced and knowledgeable members who spend lots of their time learning about thyroid problems and trying to help other members. That is what happened for me, so I am just passing whatever I can to others.
Please make sure you get all those tests I suggested done tomorrow and then post results and reference ranges. I can't think of anything further to recommend while waiting for test results.
I don't want to rain on your parade, but just because a doctor is an Endo does not mean a good thyroid doctor. Many of them have the "Immaculate TSH Belief" by which they only use TSH to diagnose and medicate a thyroid patient. That doesn't work. Others only use "Reference Range Endocrinology", by which they will tell you that a thyroid test that falls anywhere within the so-called "normal" range is adequate. That doesn't work for many thyroid patients. The clinical approach, described above is the best for effective treatment. Based on all our experiences, the probability that the Endo will treat clinically is very low.
So, if you will tell us where you are located, perhaps a member can recommend a good thyroid doctor in your area.
Please make sure you get all those tests I suggested done tomorrow and then post results and reference ranges. I can't think of anything further to recommend while waiting for test results.
I don't want to rain on your parade, but just because a doctor is an Endo does not mean a good thyroid doctor. Many of them have the "Immaculate TSH Belief" by which they only use TSH to diagnose and medicate a thyroid patient. That doesn't work. Others only use "Reference Range Endocrinology", by which they will tell you that a thyroid test that falls anywhere within the so-called "normal" range is adequate. That doesn't work for many thyroid patients. The clinical approach, described above is the best for effective treatment. Based on all our experiences, the probability that the Endo will treat clinically is very low.
So, if you will tell us where you are located, perhaps a member can recommend a good thyroid doctor in your area.
I don't know who you are, or how you know so much, but I really appreciate your kindness. It is really good of you to reach out to others. I cannot wait to get the endo. In the meantime, is there anything I can do by myself with diet? My B12, iron and hemoglobin levels are all good. I think it may take weeks before I can get an appointment, and the hair loss is tough to take (I am so vain!)
Pam
Pam
There is definite relationship between hypothyroidism and liver function. If you search for that subject on line you will see numerous articles about it.
As I thought about your osteoporosis, I happened to think that you might like to read this letter written by a good thyroid doctor for patients that he sometimes consults with from a distance after the initial diagnosis and testing. The letter is then sent to the participating PCP of the patient to help guide treatment.
http://hormonerestoration.com/files/ThyroidPMD.pdf
In the letter, please note the directive about clinical treatment. Also, note this statement.
"Thyroid hormone does not cause bone loss, it simply increases metabolism and therefore the rate of the current bone formation or loss. Most older women are losing bone due to their combined sex steroid, DHEA, Vitamin D, and growth hormone deficiencies. The solution is not (to live with) life-long hypothyroidism, but the correction of their other deficiencies."
As I thought about your osteoporosis, I happened to think that you might like to read this letter written by a good thyroid doctor for patients that he sometimes consults with from a distance after the initial diagnosis and testing. The letter is then sent to the participating PCP of the patient to help guide treatment.
http://hormonerestoration.com/files/ThyroidPMD.pdf
In the letter, please note the directive about clinical treatment. Also, note this statement.
"Thyroid hormone does not cause bone loss, it simply increases metabolism and therefore the rate of the current bone formation or loss. Most older women are losing bone due to their combined sex steroid, DHEA, Vitamin D, and growth hormone deficiencies. The solution is not (to live with) life-long hypothyroidism, but the correction of their other deficiencies."
Thank you! You have empowered me. The doctor's office just called, and he is agreeing to refer me to an endo because my liver panels are worse (despite being off all cholesterol drugs). Tomorrow I am going to the derm and I am going to insist on the thyroid tests that you suggested. I have lived with the high cholesterol, the osteoperosis, but the hair loss is just too much! Can a thyroid issue effect liver panels? Thanks again!
"Symptoms of Low Thyroid
Being one of the master regulators of body metabolism, symptoms of low thyroid function generate a global response. Symptoms include:
• Fatigue and low energy, with need for daytime nap.
• Depressed, down, or sad.
• Skin that becomes dry, scaly, rough, and cold.
• Hair becomes coarse, brittle, and grow slow.
• Excessive unexplained hair loss.
• Sensitivity to cold in a room when others are warm.
• Difficulty in sweating despite hot weather.
• Constipation that is resistant to magnesium supplementation.
• Difficulty in loosing weight.
• Unexplained weight gain.
• High cholesterol resistant to cholesterol lowering drugs."
Excerpt from Dr Lam website - Hypothyroidism
Being one of the master regulators of body metabolism, symptoms of low thyroid function generate a global response. Symptoms include:
• Fatigue and low energy, with need for daytime nap.
• Depressed, down, or sad.
• Skin that becomes dry, scaly, rough, and cold.
• Hair becomes coarse, brittle, and grow slow.
• Excessive unexplained hair loss.
• Sensitivity to cold in a room when others are warm.
• Difficulty in sweating despite hot weather.
• Constipation that is resistant to magnesium supplementation.
• Difficulty in loosing weight.
• Unexplained weight gain.
• High cholesterol resistant to cholesterol lowering drugs."
Excerpt from Dr Lam website - Hypothyroidism
Your doctor will never know for sure if you have a thyroid problem or not if not tested further. TSH is a pituitary hormone that is affected by so many variables that it is totally inadequate as the sole diagnostic for thyroid. At best TSH is an indicator to be considered along with more important indicators such as symptoms (which you have), and also levels of the biologically active thyroid hormones, Free T3 and Free T4. Of these Free T3 is the most important because it largely regulates metabolism and many other body functions. Scientific studies have also shown that Free T3 correlated best with Free T3 and Free T4 and TSH did not correlate at all.
You may have secondary hypothyroidism which is due to low output of TSH by the pituitary. This obviously will result in low levels of Free T3 and Free T4. To find out, you need to test for Free T3 and Free T4, along with TSH each time you go in for followup. If the doctor resists, then you should insist on it for the above reasons, and don't take no for an answer. Since hypothyroid patients are frequently low in other areas as well, I suggest that you should also test for Vitamin A, D, B12 and ferritin.
When test results are available, if you will please post results and their reference ranges shown on the lab report, members will be glad to help interpret and advise further.
You may have secondary hypothyroidism which is due to low output of TSH by the pituitary. This obviously will result in low levels of Free T3 and Free T4. To find out, you need to test for Free T3 and Free T4, along with TSH each time you go in for followup. If the doctor resists, then you should insist on it for the above reasons, and don't take no for an answer. Since hypothyroid patients are frequently low in other areas as well, I suggest that you should also test for Vitamin A, D, B12 and ferritin.
When test results are available, if you will please post results and their reference ranges shown on the lab report, members will be glad to help interpret and advise further.
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