What would you do in my situation? : Hi Everyone... - Thyroid UK

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What would you do in my situation?

Sarahlouise1980 profile image
27 Replies

Hi Everyone,

I’d like to know what others would do in my situation..

At the end of January this year my dose of Levothyroxine was reduced down from 150mcg to 125mcg because I’d been having headaches. I had a blood test after six weeks on the lower dose in mid March and my results showed:

TSH <0.005 (0.38-5.0)

Free T4 13.0 (7.0-16.0)

Free T3 5.1 (3.8-6.0)

So all good I thought but around the middle of April, so 3 months after reducing my dose my hair started coming out and hasn’t stopped since. The doctor has tried reducing my Levothyroxine, taking me off the contraceptive pill nothing is helping! I’ve had blood tests and my B12 and folate are very low but I know these have been low for a while. If you were in my shoes would you try increasing your dose of Levothyroxine back to 150mcg?

Any advice would be great. The hairloss is really upsetting me.

Thanks 😊

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Sarahlouise1980 profile image
Sarahlouise1980
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27 Replies
shaws profile image
shawsAdministrator

Has your doctor diagnosed your hair loss? i.e. are you developing alopecia (another autoimmune disease) rather than levothyroxine causing the hair loss. Excerpt from following link:-

"When your hormones get out of whack as a result of thyroid disease, your whole body can feel off-kilter. Your weight, your mood, and even your thinking, can be affected, and you may have a host of other physical symptoms too. Hair loss is a common side effect of thyroid disease, but it's not a permanent problem as long as you get the treatment you need.

How Thyroid Hormones Cause Hair Loss

Your hair follicles follow a natural cycle of hair growth and resting phases. At any given time, most of your hair is growing while only a small portion of it is resting. But when changes in the body throw off that cycle, too much hair rests at one time and not enough grows, resulting in excessive hair loss, thinning hair, or balding.

Many medical conditions can cause hair loss, with thyroid disease a common culprit. Thyroid problems include both an underactive thyroid gland (hypothyroidism) and an overactive thyroid gland (hyperthyroidism). Because hair growth depends on the proper functioning of the thyroid gland, abnormal levels of thyroid hormone produced by this gland can result in hair changes, along with many other side effects, if left untreated. When there is too much thyroid hormone, the hair on your head can become fine, with thinning hair all over the scalp. When there is too little of this hormone, there can be hair loss, not just on the scalp, but also anywhere on the body.

Ironically, taking the hormone levothyroxine to treat an underactive thyroid can contribute to some hair loss, among other side effects, but this seems to be more common within the first month of treatment and more often in children than adults. This hair loss is only temporary and will go away as treatment is continued and thyroid hormone levels stabilize."

everydayhealth.com/skin-and...

Sarahlouise1980 profile image
Sarahlouise1980 in reply to shaws

Hi shaws,

No I do not have alopecia, my hair is shedding when I wash/brush it. No patches.

I did have below range b12 and folate which is improving through supplementing but i only started supplementing three weeks ago x

NWA6 profile image
NWA6

Do you have a history of results to look back on? Doses, symptoms and blood results? I’d get my history in order so as to understand better which way to go.

Sarahlouise1980 profile image
Sarahlouise1980 in reply to NWA6

Thank you for your response NWA6, my blood tests have been almost exactly the same as the above results for the last three years. Does this mean the hairloss is possibly not thyroid related?

NWA6 profile image
NWA6 in reply to Sarahlouise1980

I still think I can be related (as well as any low Vits and minerals or perhaps not low but not optimal). Thyroid symptoms are a slow ‘killer’, our bodies are amazing and can cope for a number of years with low thyroid or unhealthy diet, substance abuse’s ect but eventually things start going wrong and your body needs it’s energy to go to the most needed places.

Nanaedake profile image
Nanaedake

I doubt that the small decrease or increase in Levothyroxine is responsible for your hair loss. My thyroxine levels have been above range and below range causing symptoms but with absolutely no impact on my hair. I know we are all different. I don't have an autoimmune condition, just hardly any thyroid. If it were me I'd be checking out other causes of hair loss.

Sarahlouise1980 profile image
Sarahlouise1980 in reply to Nanaedake

Thank you Nanaedake, I had hairloss previously when I was very under medicated and had a TSH of 10 but I understand the above blood results do not show under medication? Also my blood results have been almost exactly the same as the above for the last three years. I do have under range b12 and folate and understand this can cause hair loss? I have started supplementing x

Chippysue profile image
Chippysue

The very first thing I would do is to get my vitamin D to a therapeutic level of 150+ my b12 to 900, and make sure ferritin is not too low or too high,

Then if these are all in great shape and still losing hair I would see a nutritionist.

For me it was B12 deficiency that caused my hair loss

Sarahlouise1980 profile image
Sarahlouise1980 in reply to Chippysue

Did your hairloss come on quite suddenly Chippysue? x

Chippysue profile image
Chippysue

Yes it was suddenly in the shower, on hair brush, and I will start to lose hair again now if I stopped sublingual b12.

My hair has regrown.

It’s so important for your b12 to be high in lab range.

Vitamin D is crucial, most people are deficient.

Sarahlouise1980 profile image
Sarahlouise1980 in reply to Chippysue

How long did it take for your hair to stop coming out on the vitamin b12?

SilverAvocado profile image
SilverAvocado

Sarahlouise1980, do you have any blood tests from before the change in dose? Did you feel mostly well on the previous dose and the headaches were quite an isolated thing, or where there lots of other things that made you seem overmedicated?

Doctors are very quick to believe we are overmedicated, and very quick to reduce doses, so it may not have been the best idea to reduce, and you might feel better if you just went back to your old dose.

Looking at your current results, I'd say there is definitely room for an increase if you want to go back, but at the same time these results are fine to have if you feel well on them.

Sarahlouise1980 profile image
Sarahlouise1980 in reply to SilverAvocado

Thank you so much for replying - the headaches were a daily occurrence until I reduced my dose and stopped once my dose was reduced. I had always previously been on 125mcg it was raised to 150mcg when I was taking Sertraline the antidepressant as I believe this causes Levothyroxine to be less effective. I stopped taking the Sertraline in November last year and by Christmas had started getting the headaches.

All previous blood tests I’ve had for the last three years have been virtually identical to the results above but no blood test when I believe I was overmedicated on the 150mcg.

I’m so confused! If my blood test results now on 125mcg are exactly the same they have been on the 150mcg for the last three years then it’s probably not my thyroid causing the hairloss is it??

SilverAvocado profile image
SilverAvocado in reply to Sarahlouise1980

Sarahlouise1980,

You're very welcome :)

With thyroid just because the blood tests look similar doesn't necessarily mean that the symptoms will be similar or that it doesn't feel different to your body. Blood tests are always an approximation.

Our bodies can be quite sensitive to exactly the dose it needs. I agree with LAH you could try raising very slowly and see if you get improvement.

LAHs profile image
LAHs

Well, my two cent's worth is that the difference between 150 mcg and a drop to 125 mcg is hardly "an adjustment", it's a downright change/cut to a completely low dose. There are many dose levels between those two numbers which you could try which might have an affect on your hair. You could try a standard doses between 150 and 125, like 137 (~ the middle) for starters and see what happens. If headaches start again, drop the dose to something like 131 mcg (~the middle of the lower quadrant). Levo has a half life of 7 days so there are many ways you can try other doses which might work for you. An example of getting to a lower dose is that you can take 150 one day and 125 the next, that would be a resulting dose of 137 mcg and so on and so forth, get a pencil and a piece of paper and work out a few more (or ask here and we will do it for you).

But first like Shaws says, get the doc to diagnose the reason for your hair loss first - then you can stay on the lower dose.

Sarahlouise1980 profile image
Sarahlouise1980 in reply to LAHs

Hi LAHs,

Thank you for your very detailed reply!

I’ve had blood tests and have very low b12 and folate so have started supplementing these now, I think maybe the hairloss could be related to these instead as my thyroid blood tests have been almost exactly the same as the test above for the last three years.

LAHs profile image
LAHs in reply to Sarahlouise1980

Yes, that is very likely to be the cause, I hope it is, that's an easy fix, just bump your doses of B12 and folate. I ran out of folate a little while ago so I should get out to the pharmacy and take my own advice!

Sarahlouise1980 profile image
Sarahlouise1980 in reply to LAHs

I did raise my levo back to 150mcg but i think it’s too high, headaches had started to come back. I’m sure if my blood results are the same as they have been for the last three years and I feel good then 125mcg is the correct level for me and yes hopefully it is the b12/folate causing the hairloss. How long will it take to resolve once my levels start rising do you know? x

LAHs profile image
LAHs in reply to Sarahlouise1980

Geez, I don't really know. My hair was falling out, I was messing around with my doses thinking more about how I felt, then after a while my hair stopped falling out. Trying to recreate that time in my memory I would say a couple of months minimum. But really, that' s just a guess.

Sarahlouise1980 profile image
Sarahlouise1980 in reply to LAHs

A couple of months after my b12 levels have risen?

LAHs profile image
LAHs in reply to Sarahlouise1980

Yes, it doesn't take long to get B12 up. It took me about a week.

Sarahlouise1980 profile image
Sarahlouise1980 in reply to LAHs

I’ve been supplementing for three weeks and I’m still having hairloss!

LAHs profile image
LAHs in reply to Sarahlouise1980

Keep going with the B12 and work on the folate. Some people say biotin (a B vitamin) is good for hair growth, See if you can get biotin shampoo rather than take a pill since I think biotin interferes with thyroid hormones.

kmf0503 profile image
kmf0503

Hi, I can relate to your hairloss issue. It has been an ongoing problem for me for years. As far as vitamin B12 goes, mine was also low. I didn't mess around. I ordered b12 and injected it several times until I was sure I had a good loading dose and it was absorbed. Then I went to oral. That is the fastest way to increase your vitamin b12 levels. For the folate, you have to take a good oral supplement. Hope this helps.

Sarahlouise1980 profile image
Sarahlouise1980 in reply to kmf0503

Thank you for your reply kmf0503. Did the hairloss improve once you’d got your levels of b12 up? x

sbadd profile image
sbadd

How low was your b12? Were you tested for instrinic factor, this test is usually done if low on b12 to see if you have a problem with absorption, very low b12 usually requires 6 loading dose injections over 2 weeks then a maintenance shot every 3 months

kmf0503 profile image
kmf0503

I cannot say my hairloss has improved but my thyroid levels were quite high last labs so I am hopeful the loss will improve, if I can ever get my levels stable. If nothing else, I eliminated low B12 from the equation? Hairloss has been a problem that has plagued me for years. I was also left untreated for years.

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