Reduced Levothyroxine - Hairloss started... - Thyroid UK

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Reduced Levothyroxine - Hairloss started...

Sarahlouise1980 profile image
69 Replies

Hi,

After stopping taking Sertraline in November/December last year I then had to reduce my thyroxine at the end of January. I was on 150mcg which I had been on for three years and reduced to 125mcg. Levels on 125mcg are TSH <0.005 (0.38-5.00), Free T4 16.4 (7.00-16.00) and Free T3 5.1 (3.9-6.00). Six weeks after reducing I started having hairloss suddenly and this is still going on now six months later. I’ve tried reducing further and it only gets worse. Please help! x

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Sarahlouise1980
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greygoose profile image
greygoose

Your FT3, the most important number, is only just over mid-range. Most hypos need it higher. So, reducing your dose really wouldn't work, would it. What was your FT3 on 150?

Sarahlouise1980 profile image
Sarahlouise1980 in reply to greygoose

I don’t know greygoose, they didn’t test my blood just reduced my thyroxine because I’d been having headaches x

greygoose profile image
greygoose in reply to Sarahlouise1980

Oh dear. And did the headaches stop when you reduced your dose? Never accept a reduction in dose without a blood test to prove you need it. You don't convert very well, so you need your FT4 high to get enough T3 to make you well.

Sarahlouise1980 profile image
Sarahlouise1980 in reply to greygoose

Yes the headaches stopped, I’m very tempted however to put my Levothyroxine up to 150mcg to see if the hairloss eases. It’s very strange that the hairloss started not long after reducing my dose.

greygoose profile image
greygoose in reply to Sarahlouise1980

Not strange at all. It's a hypo symptom.

Sarahlouise1980 profile image
Sarahlouise1980 in reply to greygoose

But the results above are after I reduced, are they still hypo results?

greygoose profile image
greygoose in reply to Sarahlouise1980

As I said, your FT3 is probably too low for you, and that's the most important number. Nothing to do with the TSH, which is more or less irrelevant.

Sarahlouise1980 profile image
Sarahlouise1980 in reply to greygoose

But won’t my T4 go to far over range if I increase to 150mcg?

greygoose profile image
greygoose in reply to Sarahlouise1980

There isn't a too-far-over-the-top for the FT4. You need it where it needs to be to raise your FT3. T3 is the active hormone, and lack of it causes hypo symptoms. :)

Sarahlouise1980 profile image
Sarahlouise1980 in reply to greygoose

Rather bizarrely the headaches started when I stopped taking Sertraline the SSRI. I’m not sure if that interferred with my thyroid. All I know is I reduced my Levothyroxine at the end of January, got the above results in mid March and then my hair started falling out suddenly mid April and hasn’t stopped since! Coincidence?

greygoose profile image
greygoose in reply to Sarahlouise1980

Hair doesn't fall out for no reason. And, very often that reason is low T3. Have you had your ferritin tested?

Sarahlouise1980 profile image
Sarahlouise1980 in reply to greygoose

Yes ferritin is 108. I’ve always taken iron tablets. Vitamin b12 & folate are low but I’m supplementing those now too. It just seems too much of a coincidence that I reduced my Levothyroxine at the end of January and by April my hair was falling out. Although my doctor says I am OVER replaced on the above results. I am so confused and just do not know what to do for the best. I just really want my hair to stop falling out now.

greygoose profile image
greygoose in reply to Sarahlouise1980

Your doctor is only looking at the TSH, and has no idea how to treat thyroid. Your FT3 is still in-range so you are not over-replaced.

I didn't say it was a coincidence. I think you are losing your hair because your FT3 is too low.

Sarahlouise1980 profile image
Sarahlouise1980 in reply to greygoose

What if i increase my dose to 150mcg and my hair loss stops but my Free t3 goes over range?

greygoose profile image
greygoose in reply to Sarahlouise1980

What if it does? It's impossible to know in advance, you'd have to try it and see. But, and over-range FT3 is nothing to be scared of. You're not going to drop dead on the spot. Some people need their FT3 slightly over-range.

You were on 150 mcg before, did it feel like too much? You say you 'had to reduce' it, but you don't explain why. If it is too much, you could always try alternating 150/125.

Sarahlouise1980 profile image
Sarahlouise1980 in reply to greygoose

I reduced it on my doctors advice because i was having headaches most days and once i reduced the headaches eased. This was the end of January i reduced. The hairloss started suddenly in April and has never stopped. The only thing that has changed is my levothyroxine dosage. I have since on my doctors advice reduced down to 112mcg for six weeks and my hairloss worsened. Also to 100mcg.

greygoose profile image
greygoose in reply to Sarahlouise1980

Well, your doctor is a bit of an idiot, then, isn't he? If you reduce the patient's dose and she gets worse, you don't continue to reduce it, you raise it. Seems to me proof-positive that it's the lowered dose that is causing your hair-loss.

How are the headaches, now? Could be that the headaches were the coincidence and you didn't really need to lower your dose at all.

Sarahlouise1980 profile image
Sarahlouise1980 in reply to greygoose

I think i'm just worried about increasing as i think both my Free T3 & Free T4 will both be over range and isn't that overmedication?

greygoose profile image
greygoose in reply to Sarahlouise1980

Depends. You have to remember that ranges are man-made, and arbitary at best. They may not apply to you. You may need your levels slightly over. But, it's up to you. If you want to stop the hair-loss, I would have thought it was at least worth a try. You can always reduce again if you don't like the way you feel. And, it is about the way you feel, not the numbers.

Sarahlouise1980 profile image
Sarahlouise1980 in reply to greygoose

The trouble is, if i increase to 150mcg and the hairloss subsides but my frees are over range my doctor is not likely to let me stay on that dosage. I struggle to stay on the 125mcg as everytime i go to the doctors they are trying to reduce me from 125mcg downwards.

Sarahlouise1980 profile image
Sarahlouise1980 in reply to greygoose

Thank you for your help greygoose. You are right it has to be worth a try increasing to 150mcg. Especially as at the lower doses the hair loss has been worse. After all, what’s the worst that could happen?

greygoose profile image
greygoose in reply to Sarahlouise1980

Exactly! :)

Sarahlouise1980 profile image
Sarahlouise1980 in reply to greygoose

Hi greygoose, I have just dug out my last test results on the 125mcg and my free T4 was 17 and free T3 actually 5.8. ( I had at the time discontinued the contraceptive pill that I am now back on). Am I still okay to up to 150mcg do you think? I am just desperate to try anything to get this hairloss to stop. I am just so puzzled that it started when I reduced and so far is still continuing.

greygoose profile image
greygoose in reply to Sarahlouise1980

Doesn't really matter what your last but one test said, does it? That train has gone. Hashi's evolves and you get steadily more hypo with time. What's important is your latest results and your FT3 - the most important number - was too low on that. Therefore, it makes sense to me to increase your dose.

Sarahlouise1980 profile image
Sarahlouise1980 in reply to greygoose

The result with the T3 at 5.8 is my last test result x

Sarahlouise1980 profile image
Sarahlouise1980 in reply to greygoose

I was off the contraceptive pill for three months when this test was taken.

greygoose profile image
greygoose in reply to Sarahlouise1980

I'm sorry, you've now completely lost me. It would help if you gave dates to your results. 5.8 could still be too low for you. Why don't you just try increasing back to 150 and see what happens?

Sarahlouise1980 profile image
Sarahlouise1980 in reply to greygoose

I’m confusing myself! I’ll start right at the beginning...

At the very end of January I went to the doctors because I’d been having headaches. He said I could be overmedicated on my Levothyroxine and told me to reduce from 150mcg down to 125mcg. I reduced and the headaches reduced. All fine. Had a test around the middle of March and free T4 was 16.3 (7.00-16.00) and Free T3 5.1 (3.9-6.00).

Nothing else changes no new medication etc. Then around the middle of April my hair starts falling out. Ive had several blood tests since with one showing my Free T3 at 5.8 but still my hair keeps falling out.

The doctors have had me reduce my Levothyroxine to 112.5mcg with no change to my hair. It’s seems to even get worse the less I am taking.

They told me to stop my contraceptive pill in case it’s that, and no luck. Hair still falling out. I’m sure it’s related to my thyroid, but how?? What would you do in my shoes?

greygoose profile image
greygoose in reply to Sarahlouise1980

As I've said several times before, I would put my dose back up to 150. If the hair-loss started when you reduced your dose, the obvious thing to do is put the dose back up and see if it stops. NOT keep reducing it.

Sarahlouise1980 profile image
Sarahlouise1980 in reply to greygoose

Thank you greygoose.

Sarahlouise1980 profile image
Sarahlouise1980 in reply to greygoose

I also have under range B12 and folate. But as the hair loss came on suddenly I’m not sure if it would be related to the b12 or thyroid?

greygoose profile image
greygoose in reply to Sarahlouise1980

It could most certainly be due to the low B12/folate. Are you supplementing those? Have you had your ferritin tested?

Sarahlouise1980 profile image
Sarahlouise1980 in reply to greygoose

Yes I always have my ferritin tested and it’s always around 110 as I take iron tablets. I have 5mg folate tablets and am taking those no problem. The issue I have with the b12 is that I have been taking the Jarrows Methylcobalamin sublingual 1000mcg for three weeks and I am absolutely covered in acne over my face, shoulders, chest, arms and back. I wondered if I could take a lower dose?

greygoose profile image
greygoose in reply to Sarahlouise1980

Ah, I'm afraid I don't know about that. Have you thought of asking on the Pernicious Anemia forum on here?

Sarahlouise1980 profile image
Sarahlouise1980 in reply to greygoose

Hi greygoose, can I just ask, as the hairloss came on a couple of months after reducing the dose of Levothyroxine, do you think it is more likely that it’s that causing the hairloss rather than the b12/folate?

greygoose profile image
greygoose in reply to Sarahlouise1980

It's possible, yes. There are so many things that can cause hair-loss, it's a question of elimination to find out what is causing yours. Mine was mainly due to low iron.

Sarahlouise1980 profile image
Sarahlouise1980 in reply to greygoose

Thank you greygoose, also do you know how long supplemental b12 and folate will take to raise levels?

greygoose profile image
greygoose in reply to Sarahlouise1980

I would imagine that varies from person to person. So, no, I'm afraid I can't.

Sarahlouise1980 profile image
Sarahlouise1980 in reply to greygoose

Do you think that maybe because reducing my Levothyroxine is making the hairloss worse, it points more towards the hairloss being caused by my thyroid? Rather than the b12?

greygoose profile image
greygoose in reply to Sarahlouise1980

As I said above, yes, that's a strong possibility. :)

Sarahlouise1980 profile image
Sarahlouise1980 in reply to greygoose

I increased up to 150mcg around four days ago and already I’m seeing less hairloss! Is that even possible??

greygoose profile image
greygoose in reply to Sarahlouise1980

I wouldn't have thought so, no. The increase in dose won't have taken effect yet.

Sarahlouise1980 profile image
Sarahlouise1980 in reply to greygoose

Hi greygoose, I have upped my levo and the hairloss has reduced slightly already. Am i correct in thinking that if the hairloss was down to B12/folate levels then thyroxine changes shouldn't make any difference?

greygoose profile image
greygoose in reply to Sarahlouise1980

It's too soon for the change of levo dose to have had any effect. It's far too soon to come to any conclusions.

Sarahlouise1980 profile image
Sarahlouise1980 in reply to greygoose

Hi Greygoose, I’ve started to get headaches again on the 150mcg daily even though I’m sure it’s reducing the hairloss. Is this a sign I need to go back to 125mcg? Or try for longer? I just don’t want to make myself ill!

greygoose profile image
greygoose in reply to Sarahlouise1980

So many things can cause headaches. I think you ought to try a bit longer, see how it goes.

Sarahlouise1980 profile image
Sarahlouise1980 in reply to greygoose

Hi greygoose, I’m still trying the increase to 150mcg to see if it stops the hairloss. Can I ask if my results on 125mcg were TSH <0.005, Free T4 13.0 (7.0 -16.0) and Free T3 5.1 (3.9-6.0) will the increase to 150mcg definitely push me over range?

greygoose profile image
greygoose in reply to Sarahlouise1980

I doubt it will push you over-range. And what if it does, as long as you feel well? Ranges are man-made and arbitary, and some people need their levels slightly over-range. You just have to try it and see.

Sarahlouise1980 profile image
Sarahlouise1980 in reply to greygoose

Hi greygoose, can i just check if my hair loss is down to the b12 then adjusting my levothyroxine dose won't make a difference? I put my levothyroxine dose back up to the 150mcg over three weeks ago and the hair loss has slowed down somewhat.

greygoose profile image
greygoose in reply to Sarahlouise1980

One would imagine that to be the case, yes. :)

Sarahlouise1980 profile image
Sarahlouise1980 in reply to greygoose

So if my hairloss stops on the 150mcg then it was because my levo dose wasn't enough?

greygoose profile image
greygoose in reply to Sarahlouise1980

Exactly.

Sarahlouise1980 profile image
Sarahlouise1980 in reply to greygoose

But how can my levo dose not be enough on 125mcg when my results are: TSH 0.005 (0.38-5.00) Free t4 16.4 (7.00-16.00) and Free t3 5.1 (3.8-6.00)? I am very confused!

greygoose profile image
greygoose in reply to Sarahlouise1980

Because you're a poor converter. Your FT3, the most important number, is only just over mid-range. Most hypos need it higher than that. Forget the TSH, which is admittedly low, but that doesn't tell us very much. Your FT4 is just slightly over-range, but that's because you need that much T4 to get a mid-range reading of FT3, because you are a poor converter. To get the FT3 up to the level you need, you have to take more T4, even if it does cause your FT4 to go well over-range. What matters is the level of the FT3.

Sarahlouise1980 profile image
Sarahlouise1980 in reply to greygoose

My b12 and folate are also low but this hairloss started virtually overnight a couple of months after reducing levo. Does this point more towards the levo as i think my b12 must have been low for a while.

greygoose profile image
greygoose in reply to Sarahlouise1980

Yes, it does. And I think I said something along those lines further up. :)

Sarahlouise1980 profile image
Sarahlouise1980 in reply to greygoose

Hi Greygoose, Have you ever heard of oilier skin as a symptom of hypo/hyper?

greygoose profile image
greygoose in reply to Sarahlouise1980

Hypos usually have dry skin. I don't know about hyper, but you're not hyper.

Sarahlouise1980 profile image
Sarahlouise1980 in reply to greygoose

Is there room for an increase to 150mcg on my levels?

greygoose profile image
greygoose in reply to Sarahlouise1980

Yes, I told you, your FT3 is too low.

Sarahlouise1980 profile image
Sarahlouise1980 in reply to greygoose

Hi Greygoose, I just had a blood test nearly four weeks after increasing from 125mcg to 150mcg levothyroxine and my free t4 was 30.1 where the top of the range is 22. The test was 12 hours after taking my levo but this is still very high isn't it?

greygoose profile image
greygoose in reply to Sarahlouise1980

12 hours is not long enough. Nor is four weeks, so not much point in doing that test. What was your FT3?

Sarahlouise1980 profile image
Sarahlouise1980 in reply to greygoose

No free t3 was tested - It was a thriva test. Do you think i should carry on with the 150mcg? I'm unsure what to do.

humanbean profile image
humanbean in reply to Sarahlouise1980

Rather bizarrely the headaches started when I stopped taking Sertraline the SSRI.

When people stop taking SSRIs they can sometimes get vicious withdrawal symptoms. See this link.

en.wikipedia.org/wiki/Antid...

If you have done two things at the same time - changed your Levo dose (up or down) and stopped taking another drug you were taking it is impossible to disentangle which change is causing any new symptoms.

Sarahlouise1980 profile image
Sarahlouise1980 in reply to humanbean

Hi humanbean,

Greygoose has been helping me. I’m in a predicament -

The doctor reduced my dose of Levothyroxine at the end of January because I was getting headaches. I went from 150mcg to 125mcg heachaches ceases and on the blood test I had in the middle of March my bloods looked good. Middle of April however my hair started falling out and hasn’t stopped!

The doctor has tried reducing my Levothyroxine further which has just led to more hair falling out and also taking me off the contraceptive pill to see if that stopped it. That hasn’t worked either. Greygoose said in my shoes she would try increasing Levothyroxine back up to 150mcg to see if that stopped the hairloss, what would you do if you were me?

humanbean profile image
humanbean in reply to Sarahlouise1980

I would suggest trying it and seeing what happens.

For future reference...

Please write up a time line with dates, what dose of Levo you were taking, what brand you were taking, what symptoms you had/have and how bad they were/are. (Mark your symptoms out of 10 - for example, a score of 1 or 2 would be minor, a score of 7 or 8 or 9 would be very severe.) I've found this thread to be very confusing because you keep skipping backwards and forwards in time and then mentioning something else you've changed.

Lists of symptoms can be found on these links, and of course you can add any symptoms you have that aren't mentioned :

Short list : thyroiduk.org.uk/tuk/about_...

Long list : hypothyroidmom.com/300-hypo...

In your shoes I would follow greygoose 's suggestions. Experimenting with dosing is something we all have to do to find our own sweet spot. But it is essential to keep good records of test results, dosing, drugs you are taking, hormones you are taking and so on, and your symptoms, so you don't end up trying to re-invent the wheel over and over again. As far as I can tell you have changed your Levo dose, come off the pill, and stopped taking an SSRI all within three months. It will take quite a while for your body to get used to all those changes, and in the meantime anything could happen with regard to your symptoms and your hair loss.

One thing to remember is that if you have a prescription for 150mcg Levo you can test a reduction to 125mcg without having to see or persuade a doctor, and you can buy fingerprick tests before each change to test what is happening. (If you can't afford the tests then you will have to keep more extensive records, and include things like basal temperature, pulse, and blood pressure if you have a monitor.) Keep records. Don't change dose more often than every 6 - 8 weeks. You don't have to ask your doctor for permission to do this. You only need to persuade them for a change in prescribed dose if you want more.

in reply to Sarahlouise1980

Many hypos need their FT4 above range to ensure they have enough for T3 conversion. Whatever makes you feel good and rids you of symptoms is what you need, regardless of a piece of paper. During the ten years I spent on levo, hair loss was always one of the first signs I was under medicated. I needed 200 mcg daily just to feel remotely human.

As pointed out by others, the TSH is not a good indicator once on thyroid hormone replacement. You need to go by your free Ts, especially your FT3 levels, and in order to get them up you need more T4.

Sarahlouise1980 profile image
Sarahlouise1980 in reply to

I'm just very confused Cat68, I was on 150mcg for three years, reduced back down to 125mcg because i'd started getting headaches. The doctor didn't run bloods before i was reduced. On 125mcg my results look good TSH 0.005 (0.38-5.00), Free T4 16.4 (7.00-16.00) and Free T3 5.1 (3.8-6.00) but the hairloss started a couple of months after reducing my dose from the 150mcg and i just can't get it to stop. What would you do in my situation? Thank You!

in reply to Sarahlouise1980

I would increase my dose to 150 mcg daily and see if that affected the hair loss.

I have never had headaches on any thyroid medication, so don't know if there is a connection, but the fact that you are losing hair since reducing levo plus your FT3 is rather low suggests you need a dose increase.

As already pointed out by others, NEVER accept a decrease in dose without proper labs incl. FT3!!! Doctors are usually clueless when it comes to thyroid hormone replacement so we need to educate ourselves in order to defend our own interests.

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