Frontal fibous alopecia: Please advise if this... - Thyroid UK

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Frontal fibous alopecia

Karen154 profile image
34 Replies

Please advise if this sounds like FFA.

Tingling in brows lashes and hairline.

Brows have bald patches and hair line receding. Lost lashes but they grow back with vitamin D.

46 year old female. No hormone problems.

Underlying thyroid problem. TSH is below normal.

Hair falls out when thyroid medicine is reduced. But never grows back.

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Karen154 profile image
Karen154
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34 Replies
SlowDragon profile image
SlowDragonAdministrator

What are you most recent results and ranges for TSH, FT3 and FT4 plus do you have Hashimoto's also called autoimmune thyroid disease diagnosed by high thyroid antibodies

What about folate, ferritin, B12 and vitamin D levels

Add results and ranges

Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies

thyroiduk.org.uk/tuk/testin...

Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have money off offers.

All thyroid tests should ideally be done as early as possible in morning and fasting.

If on Levothyroxine, don't take in the 24 hours prior to test, delay and take straight after. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, GP will be unaware)

If antibodies are high this is Hashimoto's, (also known by medics here in UK more commonly as autoimmune thyroid disease).

About 90% of all hypothyroidism in Uk is due to Hashimoto's. Low vitamins are especially common with Hashimoto's. Food intolerances common too, especially gluten. So it's important to get antibodies tested.

What supplements are you taking?

If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 3-5 days before any blood tests, as biotin can falsely affect test results

endo.confex.com/endo/2016en...

endocrinenews.endocrine.org...

Karen154 profile image
Karen154 in reply to SlowDragon

Hi slowdragen ,

Test results as follows:

Vit B12 510 range 181 - 910

Vit D 98 range 75-150

Thyroid antibodies 28.00 range 0.00 - 60.00

TSH 0.05 range 0.03 - 5.00

T4 18.01 range 11.00 - 22.00

T3 6.8 range 3.1 to 6.8

I'll post more info later.

Many Thanks

SlowDragon profile image
SlowDragonAdministrator in reply to Karen154

You need both TPO and TG antibodies tested. Guessing the antibodies is only TPO

Folate and ferritin tests would be helpful

Karen154 profile image
Karen154 in reply to SlowDragon

Hi, ya antibodies was TPO . The PG was N/A result. I was told by the consultant that this wasn't needed due to TPO being low.

Iron isn't bad at 13 range 10 to 33

Ferritin is very low at 46 range 10 to 291.

It's on my other post relating to increasing Ferritin levels.

Many thanks

Karen154 profile image
Karen154 in reply to Karen154

I feel these more going on causing the hair to fall out but blood tests aren't picking up on it.

Hair started thinning before operation 12 years ago. Started levothyroxine after the operation but never felt well and exhausted for 3 years. Different consultant increased the dose and I felt great but hair then started to thin everywhere.

4 yrs ago brows started to shed. GP increased the dose and thid stopped but then lashes started shedding.

Drop and raise the dose by 25 mg and it's either brows or lashes falling out. But there is never any balance and brows have never grown back.

What do think?

Karen154 profile image
Karen154 in reply to Karen154

Read about allergies effects medication which would fit.

Switched to 50mg tablets to avoid dyes and scalp hair shedding is now below 50 strand a day which is amazing. But it hasn't helped my brows and lashes.

Switched to liquid thyroxine and had a severe reaction to E219. Hair everywhere again.

Also tried T3 and felt great this elevated the level and pushed TSH down. Brows and body hair started to grow back but scalp hair shed rapidly and wasn't growing back so stopped the T3.

SlowDragon profile image
SlowDragonAdministrator in reply to Karen154

Iron is low in range, ferritin lower

Got folate result?

You can have raised TG antibodies with low TPO antibodies, but NHS won’t test

You would need private testing

Have you tested zinc

Are you on strictly gluten free diet

Karen154 profile image
Karen154 in reply to SlowDragon

Hi, yes my zinc levels were tested. 13 range 12.00 to 20.00. I've taken zinc supplement for some months as well as iron. Biotin ect.

Folate ,18.00 no range but > 5.4 makes no sense to me.

I tried gluten free but PO results stayed the same over 12 months. Gluten is in levothyroxine so if taking medicine then never truly free from gluten.

I feel it could some kind of allergic reaction or defiance triggering alopecia.

But the tingling is similar to autoimmune.

The thyroid consultant informed my dermologist that autoimmune is tried with levothyroxine so no change of treatment. As the TSH is abnormally low he lowered my meds and more hair came.

Do you know of any other form of treatment. I'd be willing to try anything provided I can buy it privately.

Many thanks

Karen154 profile image
Karen154 in reply to Karen154

My mobile tends to change my words.

I meant to type some form of alopecia triggered by s deficiency.

SlowDragon profile image
SlowDragonAdministrator in reply to Karen154

All Levothyroxine is absolutely gluten free

Only Teva is lactose free

Gluten free diet can lower antibodies and improve gut function, it may not give any obvious symptom reduction. Though many many people do find it foes, sometimes significantly

If trying gluten free again, it's worth testing TPO antibodies before and then 6 months later, but must be absolutely strictly gluten free. No cross contamination, no cheating

Many patients are dairy intolerant or have nightshades intolerance (tomatoes, peppers, aubergines)

Karen154 profile image
Karen154 in reply to SlowDragon

Hi, the leaflet in the levothyroxine medication states the compound. One of the compounds is gluten. If it gluten isn't in the medicine then it shouldn't be listed.

It also states an E additive (sorry recall the E without checking the leaflet) which is a colourant. Oddly enough this additive isn't in the 50 mg tablet. Since changing my scalp has improved.

So back to meds. Are there any forms of orrel medication to combat autoimmune?

Many Thanks

SlowDragon profile image
SlowDragonAdministrator in reply to Karen154

Which brand of Levo is this?

As far as I am aware no UK brands of Levothyroxine contain gluten.

Some contain acacia powder - this can cause problems for some

Only lactose free is Teva or liquid Thyroxine

Many patients find diet helps reducing antibodies, but we all react to different mix of foods

Common ones are gluten, dairy, casein, lactose, eggs, nightshades, nuts

Many people start on strict AIP diet and slowly reintroduce food groups one at a time

Isabella Wentz the Thyroid Pharmacist has lots of info about this, as does Amy Myers

Some find LDN helpful. Some posts on here about that too

helvella profile image
helvellaAdministratorThyroid UK in reply to SlowDragon

Coeliac UK says this:

• The vast majority of medicines prescribed by your GP are gluten-free

• A very small number of medicines contain wheat starch which contains low levels of gluten. Wheat starch is one of many ingredients so even when wheat starch is used, the overall gluten content of the medicine is very low.

• For medicines which contain wheat starch in almost all cases, an alternative medicinal product can be prescribed, containing the same active ingredient, and which does not contain wheat starch.

• Sometimes medications can cause side effects that are similar to symptoms that occur after eating gluten. Speak to your GP if you have any unexpected side effects.

• Where wheat starch has not been used in a medicinal product, the product can be regarded as gluten-free

coeliac.org.uk/coeliac-dise...

Karen154 profile image
Karen154 in reply to helvella

Hi, have photos of medicine compounds but not sure how to upload in post. Your right the meds contain wheat starch. I'd upload the docs then list each compound for different medications as forget some of it.

My hangover tablets are yellow so they definitely have a dye in them. Switch to steroid free medicine now.

Would you know a Dr would prescribe for autoimmune?

Thanks

helvella profile image
helvellaAdministratorThyroid UK in reply to Karen154

You cannot upload an image in an existing post. Create a brand new post - and when you are doing that, you will see a box that allows you to add a photograph.

Or, if you have access to any filesharing such as Dropbox, you could post a link.

Karen154 profile image
Karen154 in reply to helvella

thanks, I'll start a new post. My scalp hair started to shed after my thyroid operation. When medication was switched to 100mg tablet instead of 2*50 family have stated my brows started to thin then. Approx 6yrs ago. Noticeable 4 yrs back and their almost gone now.

Since swapping back to 2*50mg. Shed from scalp has reduced but tsh isn't normal Range and hasn't been for yrs.

The hair loss is now starting to resemble FFA. Consultant s stated it isn't autoimmune but I'm not telling it out.

Currently waiting for referral for an allergy test and scalp biopsy.

Karen154 profile image
Karen154 in reply to Karen154

Sorry that meant to read. I'm not Ruling out autoimmune.

Karen154 profile image
Karen154 in reply to helvella

Wondered if you had any knowledge of Tirosint dosage. I'm keen to try a pure drug and see if there's any difference.

Looked online but dosage info is conflicting.

Many thanks

helvella profile image
helvellaAdministratorThyroid UK in reply to Karen154

Some people who have switch to Tirosint have reported that they need a slightly lower dose than other levothyroxine products. It seems likely this is due to better absorption.

Unless you have absorption problems which affect levothyroxine tablets but not gel caps, it is unlikely to make a huge difference to dosing.

Karen154 profile image
Karen154 in reply to helvella

OK thanks. Been looking for a dosage chart but no luck so far.

Brows and lashes have coming out dreadful last few days.Scalp shedding has also increased this week.

Body temperature is slightly high again. Forgot to mention the hair usually comes out when my hands are hot. Drs believe this is due to over treatment but the dosage has been dropped and bloods dropped so it can't be. Also no inflammation in bloods.

Also noticed some shampoo starts the tingling in my scalp.

Only thing I've done different is to swap my iron supplement to hear to try and get the levels up quicker. But I take it 6hrs after my thyroid tablet so shouldn't effect my medication.

God knows! I give. Just seem to get worse.

Karen154 profile image
Karen154 in reply to Karen154

That should have read heme Iron. Sorry.

Karen154 profile image
Karen154 in reply to SlowDragon

Hi slow dragon I take a photo of the ingredients and upload it.

Tried the liquid compound to avoid additives fillers ect. No gluten in that but had a very bad reaction to the E addictive used to preserve the medication. Vomited dizzy and hair fell out. Hair is just starting to settle down again.

So I feel it's more likely to be E additives. I do feels alopecia.

Do symptoms sound like FFA.

helvella profile image
helvellaAdministratorThyroid UK in reply to Karen154

Your profile says United Kingdom but you must be referring to non-UK levothyroxine products. In UK products, no levothyroxine tablets are coloured.

In the USA, and some other countries, I think all levothyroxine tablets are coloured - often or always with the exception of 50 microgram tablets. This allows those who are sensitive to colours to receive levothyroxine without colouring agents.

Karen154 profile image
Karen154 in reply to helvella

I don't know the brand but ya I'm in the UK.

Compound says gluten. Also E additive. As above I think it's the E additive.

Cheers

SlowDragon profile image
SlowDragonAdministrator in reply to Karen154

It's not a standard UK brand if it contains gluten.

helvella profile image
helvellaAdministratorThyroid UK in reply to Karen154

Please describe the tablet. It is usually fairly straightforward to identify tablets.

Any markings - check both sides and includes letters, numbers and break lines.

Are the tablets in any form of packaging? Does that give any information at all?

Karen154 profile image
Karen154 in reply to helvella

Hi helvella,

I've just updated my post by replying to slowdragen and I'd be grateful if you would take a look at it too. Basically androgen level is low and has fallen dramatically since 2012 and my hair has been falling in this time period.

Many Thanks

Karen154 profile image
Karen154 in reply to SlowDragon

Hi slowdragen, I've been through all my blood tests over the the previous 3 years and I think I may have found something which may put a different spin on it.

My TG is not listed but thyroid auto anti bodies were done back in 2015, 1.00 range 0.00 to 1.80 the has N/A next to requests since.

Androgen is normal but low. 43 range 25 to 145. This could be the missing link. What do you think?

The hair loss has steadily got worse since 2015 and the androgen fell dramatically on the graph from 2012 to 2015.

I've read this binds to estrogen and testosterone. The free levels of these hormones could indirectly be effecting my thyroid.

No estrogen test available on the NHS.

Testosterone normal 1.60 range upto 2.6. but no test for free range.

Serum globin 27 no range given. Lab has rejected SHBG since 2015. But the androgen has the same reference as it sex binding globin.

When T4 is lowered the hair comes out. The tingling in my scalp and brows could due to chemicals as I was using minoxidil for some time. Felt it made the shedding worse.

T3 helped my brows but had yellow dye and scalp hair was falling out which I believe was due to the E colourant.

Without T3 medication normal reading is 4.3 sorry I don't have the range but it's up to 6.8.

Many thanks

SlowDragon profile image
SlowDragonAdministrator in reply to Karen154

Sorry don't know anything about sex hormones and hair loss

Being under medicated can obviously effect hair. FT3 looks low when without T3 meds

If hairloss increases when T4 is lowered, then keeping T4 higher may be better option

Ferritin and zinc are especially linked to hairloss

But vitamin D, folate, B12 need to be optimal too

How do you take your Levothyroxine and T3

Levothyroxine taken at night can give better uptake

Split dose T3. 3 x per day, small dose every 8 hours

Absolutely strictly gluten free helps or is essential vast numbers of patients

Karen154 profile image
Karen154 in reply to SlowDragon

Thanks for getting back to me. As the hospital have lowered my T4 im unable to keep it higher. They believe I was over treated due abnormal Low TSH. There are long term side effects to low TSH so I do understand. I would stick with. T3 but I can't find one without a dye.

I've read gluten free is very good. The problem is when I have private blood tests they aren't added to my NHS records so Drs aren't acknowledge a problem therefore I'll get the right treatment.

Would you know of a thyroid drug which would help the T4 bind to protein. This would help the T3 and raise the SHBG level.

There is definitely a link with the SHBG and T4 T3 but I don't know how to balance it. I know the NHS won't deal with this.

I'm working hard deficiencies but other then that I would know what tests to go for next.

More brow hair has fallen out in the last few days. It's so depressing.

Karen154 profile image
Karen154 in reply to Karen154

Forgot to say thank you and have a nice wknd. X

SlowDragon profile image
SlowDragonAdministrator in reply to Karen154

No T3 in Uk has dye in it. They are all white

helvella profile image
helvellaAdministratorThyroid UK in reply to SlowDragon

I wonder if Karen154 is actually buying Uni-Pharma products?

Karen154 - where are you getting your T4 and T3 from? They simply cannot be UK products.

Karen154 profile image
Karen154 in reply to helvella

I bought T3 from Europe. Think it was buy T3 UK. T4 is UK prescription. May be sensitive to E additive in UK medication.

Would you know of a thyroid drug which helps to bind the T4 to protein. I haven't done my h research on it yet but think that would help as SHBG is very low. This could be the missing link.

Many thanks.

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