Can you stop thyroid medication once started? - Thyroid UK

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Can you stop thyroid medication once started?

Lrden profile image
45 Replies

Hello, I'm feeling pretty desperate and wondered if you can stop meds once started, my blood results before levo were

Serum tsh level 5.1, range 0.1-4

Serum free T4 level, range 9.5 - 17.5

Doctor wanted to retest in 6 weeks but due to symptoms hair loss weight gain numb fingers etc I pushed for meds and he put me on 50 mcg.

6 weeks later blood results show tsh 1.4 and FT4 13.3 so he upped dose to 75mcg.

Hair loss is just getting worse, not only that it is incredibly dry and dull looking, I even seem to be losing the new hair growth too.

I'm wondering if I should have initially had a retest and not jumped into meds straight away, thanks

45 Replies
Inaquandary profile image
Inaquandary

What was your initial T4 reading? And how long have you been on levo?

Lrden profile image
Lrden in reply to Inaquandary

Hi it was 12.5, I've been on 75mcg for just under 1 week and 50mcg for 6 weeks

Inaquandary profile image
Inaquandary in reply to Lrden

I would say that your symptoms are a sign of undermedication and you need to be on the higher dose for 6 weeks before you will see a difference. Speaking from experience here x

Lrden profile image
Lrden in reply to Inaquandary

Thanks Lindsay, I was hoping after 7 weeks I would see a difference but it seems worse. I already suffer from female pattern hair loss but this is excelerated. Did your hair loss stop and did it go back to normal rather than feeling dry and brittle?

Inaquandary profile image
Inaquandary in reply to Lrden

I had total thyroidectomy due to papillarycancer 7 weeks ago and been on 175mcg ever since so my story is a bit different to yours. I know its a juggling act getting the right level of levo, can take months

Lrden profile image
Lrden in reply to Inaquandary

Hi Lindsay sorry to hear that, thanks for the info and I wish you a speedy recovery take care x

startagaingirl profile image
startagaingirl

Hi - I would agree it is very unlikely to be the medication itself causing the issue, rather that you are not on enough of it yet. And no, you shouldn't stop it. A struggling thyroid is shown by any Tsh over about 3, so you are definitely hypo (presuming any chance of temporary raise in Tsh due to virus, etc has been eliminated). If hypo is not treated the symptoms only continue to get worse and, eventually, leads to a slow, horrible death.

But some of your symptoms could also be caused by the almost universal nutrient deficiencies associated with it. For instance numb fingers would be associated with low vit b12 levels. If levels are low and you start thyroid meds, it is quite common for such issues to become worse as nutrients are used up by the raised hormone levels.

So I would suggest you try to get results for vit d, vit b12, folate and ferritin, either from GP or many of us use home finger prick testing from either Blue Horizons (thyroid plus 11) or Medichecks (thyroid ultravit). These tests are both comprehensive, including anti-bodies for auto-immune version, and come in at about £99, though watch for offers on Thursdays. Just in range for all of these is not good enough for thyroid, optimum levels are quite high. So if you get results, come back and post for advice.

Btw, all tests should be done as early as possible, before 9am, having fasted from evening before (water only), and 24-36 hrs since last Levo dose.

Gillian

Lrden profile image
Lrden in reply to startagaingirl

Thanks, I've not had a virus and now looking back have had symptoms for many months the most obvious was gaining 1 stone when I'm already struggling overweight. I do have an auto immune disease Scarcoidosis of the lungs but after 10 months of steroids it's in remission. I don't know if having this could affect a tsh result

Angel_of_the_North profile image
Angel_of_the_North in reply to Lrden

The steroids can affect your thyroid hormone uptake (ie make you more hypo)

Lrden profile image
Lrden in reply to Angel_of_the_North

Ok thanks I'm down to 2.5 mg of prednisolone, surely the doctor would know not to put me on levo if steroids artificially raise the tsh?

Angel_of_the_North profile image
Angel_of_the_North in reply to Lrden

They don't artificially raise the TSH, the high cortisol they create stops your thyroid hormones from working (prevents conversion from T4 to T3). I wouldn't expect a GP to know that even if he knows about increased likelihood of diabetes, osteoporosis and glucose intolerance.

Lrden profile image
Lrden in reply to Angel_of_the_North

Hi thanks for the info but can I ask do you know this from experience or research?

I've just read another post from soneone who has a different auto immune disease to me and that person experienced suppressed tsh level on steroids rather than elevated.

If not taking steroids could that mean that I could possibly come off the levo or is it the case once you start levo you are on it indefinitely?

Angel_of_the_North profile image
Angel_of_the_North in reply to Lrden

Both. I have secondary hypo which means that my TSH never rises, but steroids depressed my free T3 all the same. It's not the TSH it affects, it's the conversion from t4 to t3, which might or might not change your TSH depending on how your pituitary and hypothalamus work. You have to remember that TSH is NOT a thyroid hormone. Sometimes cortiscosteroids lower TSH, but they don't raise the thyroid hormones. so you end up with functional secondary or central hypo.

Impossible to say whether you are "really" hypo or not, but most healthy people have a TSH around 1.2 and free t4 over the mid point of the range

Lrden profile image
Lrden in reply to Angel_of_the_North

Thanks for all the info, my GP isn't testing for FT3 they generallyonly test for FT4. I will have to do more reading on this to get a better understanding it seems so complicated.

Mnucci57 profile image
Mnucci57 in reply to Lrden

Be careful about those steroids, if your inflammation is gone, you shouldn't need them. They cause adverse side affects if taken too long. Hair is one of them, Osteoporosis is another. I had to get a second opinion to get off them, and the first Dr wasn't going to tell me!!!! So be your own detective, you can't always rely on doctors for everything. They get kickbacks from all you prescribe to, they don't care if we suffer consequences with our health. This site has taught me a TON more than any other Dr I've ever been to!!! It's very helpful reading all the letters cause it makes you think of what your situation is and what to do or try, to help better yourself with your levels.

Lrden profile image
Lrden in reply to Mnucci57

Thanks, I was on the steroids for 12 months and am sure they have in part caused my hair loss. I also believe that they and the septrin induced the hypothroidism. I am loath to go back on them I'm due a check at the hospital but dear my lungs are telling me the sarcoidosis is back. The problem is which is worse being on steroids or ending up with fibrosis of the lungs. I'm going to ask if there is a safer alternative to steroids that will combat the sarcoidosis. 2 months off them and 75mcg of thyroxine daily for 11 weeks increased from 50mcg and my hair loss is finally slowing down.

Mnucci57 profile image
Mnucci57 in reply to Lrden

I wish you all the luck in finding your answers. I know steroids we're given to me for inflammation, of the liver. I have fibrosis and am now on a new drug, an autoimmune suppressant. It can cause cancer, so gee, take a pick, die of liver failure or cancer. I can't win in this battle.

Lrden profile image
Lrden in reply to startagaingirl

Ps I haven't had a vit d test but early October test results showed

Folate 17 range above 5.4

Ferritin 230 range 10-291

B12 470 range 160-820

All approx 2 months ago

Thanks

Clutter profile image
Clutter

Lrden,

Levothyroxine can increase hair loss in the first 6 months. It should improve after that.

B12 470 is unlikely to be deficient but if you have symptoms in b12deficiency.info/signs-an... go to healthunlocked.com/pasoc for advice as they are the experts on B12 deficiency.

Folate is good.

Ferritin is high in range. If you are supplementing iron you should stop. High ferritin can be due to an infection or inflammation in the body. Even a cold at the time of testing can elevate ferritin.

Lrden profile image
Lrden in reply to Clutter

Thanks Clutter, I'm not on individual iron tablets but hairfollic woman which contains 14mg iron but is probably the reason why my b12 is ok. Would too much iron cause hair loss? Maybe I should stop taking the hairfolic

Clutter profile image
Clutter in reply to Lrden

Lrden,

Iron has nothing to do with B12. Too little iron/ferritin can cause hair loss. I'm not aware that too much iron does. Too much iron isn't good for us though. I would find a hair tonic which doesn't contain iron.

Lrden profile image
Lrden in reply to Clutter

Yes sorry I realise I should have explained the hairfolic is probably why my b12 level is ok thanks

Lrden profile image
Lrden in reply to Clutter

Ps I should have explained hairfolic is a multi vit for hair containing 20ug B12, 15mg zinc and lots of other vits

SeasideSusie profile image
SeasideSusieAdministrator in reply to Lrden

Lrden

The iron on your Hairfollic supplement means that none of the other vitamins/minerals can be absorbed. Iron needs to be taken at least 2 hours away from other supplements. And with a ferritin level of 230 you don't need to take iron. Optimal is half way through it's range.

Other causes of hairless worth looking at healdove.com/disease-illnes...

Lrden profile image
Lrden

Thank you so much SeasideSusie I had no idea that iron could be a problem, the thing is the thyroid issue has been going on for several months around the same time as I've been taking the hairfolic, I'm coming off the hairfolic straight away

SeasideSusie profile image
SeasideSusieAdministrator in reply to Lrden

Lrden

It would be a good idea to to get Vit D tested. You can do a home fingerprick blood spot test from City Assays vitamindtest.org.uk/index.html

With your B12 at 470, personally I would want that higher -

An extract from the book, "Could it be B12?" by Sally M. Pacholok:

"We believe that the 'normal' serum B12 threshold needs to be raised from 200 pg/ml to at least 450 pg/ml because deficiencies begin to appear in the cerebrospinal fluid below 550".

"For brain and nervous system health and prevention of disease in older adults, serum B12 levels should be maintained near or above 1000 pg/ml."

You can supplement with sublingual methylcobalamin lozenges and if you do that you should take a B Complex to balance all the B vitamins and that will cover the B vitamins in the Hairfollic. Thorne Basic B is highly recommended.

To cover the minerals in Hairfollic look at a mineral complex without iron, calcium or iodine eg biocare.co.uk/mineral-complex

Lrden profile image
Lrden in reply to SeasideSusie

Thanks SeasideSusie, you mention calcium and I forgot to mention I'm on adcal d3 due to oestoepenia and to protect against the steroids I'm taking total calcium is 1200mg and 10mg vit d but I forget to take them regularly and probably only have one of the two I'm supposed to take

SeasideSusie profile image
SeasideSusieAdministrator in reply to Lrden

Lrden

I can't comment on the prescribed calcium then, I would just avoid taking another supplement that contains it.

10mg Vit D is 400iu which is miniscule. It will never, ever raise Vit D level. Best get it tested then supplement at the appropriate dose.

Taking Vit D increases uptake of calcium from food and we need to take D3's cofactors. Magnesium helps D3 to work and K2-MK7 directs the calcium to bones and teeth where it's needed and away from arteries and soft tissues where it can cause probems such as calcification.

vitamindcouncil.org/about-v...

Lrden profile image
Lrden in reply to SeasideSusie

Hi SeasideSusie, I saw gp yesterday and she said 10mcg vit d is the correct level to take! She wouldn't test me so it looks like the only thing I can do is go for private testing, thanks for the info.

SeasideSusie profile image
SeasideSusieAdministrator in reply to Lrden

Lrden

Unless your GP has tested your Vit D level previously, she can't possibly know how much you need.

Why were you started on Adcal in the first place? Was it purely for the osteopenia?

For the sake of £28 and peace of mind, I would do the private test. Post result when you get it and we can see if you need to supplement with D3.

Lrden profile image
Lrden in reply to SeasideSusie

Hi SeasideSusie, I know but the GPs are so restricted by their budgets they won't do all the vit testing I would like. I'm on adcal d3 for the oesteopenia and also because I've been on steroids for almost 12 months, alongside co-trimoxazole. The chest consultant was the one who prescribed adcal but I think I'm supposed to stay on it indefinitely. I'm having a trial off the steroids at the end of this month to see if the sarcoidosis stays in remission. I'm waiting to hear from a health food advisor who specialises in thyroids and am going to get all tests done in a private lab, I believe she won't interpret results if I go to medichecksetc

Thanks

SeasideSusie profile image
SeasideSusieAdministrator in reply to Lrden

I know they're restricted, which is why so many of us test vitamin and minerals ourselves. So if you want to know your level that's what you need to do. It's a very useful test to do as a good Vit D level is necessary for so many things - see vitamindwiki.com/Chart+of+V...

What I'm saying is that for your GP to say that 10mcg/400iu D3 is the correct level is nonsense if she hasn't tested your level in the first place. If you tested privately and your level came back at less than 30nmol/L what would she say then? That's the level below which the guidelines state that loading doses should be prescribed which total 300,000iu over a period of usually 5 or 6 weeks then a maintenance dose of 800iu is prescribed.

Lrden profile image
Lrden in reply to SeasideSusie

Thanks, she never even mentioned levels but to be fair we had other things to discuss in a 10 min appointment, thanks for the link and quite shocked to see that the recommended is twice what she was indicating!

Lrden profile image
Lrden in reply to SeasideSusie

Hi SeasideSusie, I've got my vit d test result back (finger prick medichecks) and it is 56, they say normal within range which is 50-200. I had stopped taking 1 week before the adcal d3 which will give me 20mcg daily, please let me know your thoughts

SeasideSusie profile image
SeasideSusieAdministrator in reply to Lrden

Hi Lrden

So your level is rather low. The Vit D Council recommends a level of 100-150nmol/L and I gave you a link to the Disease Prevention Chart so you can see where it needs to be.

20mcg D3 is 800iu and whatever your GP may say that is not enough to increase your level, it's barely a maintenance dose for someone with a decent level to start with.

With a level of 56nmol/L you are looking at a dose of around 4000iu daily, you could then retest after 3 months. Once you've reached the recommended level then you need to find your maintenance dose which might be 2000iu daily, it's trial and error so it's recommended to retest once or twice a year to keep within the recommended range.

The cofactors mentioned previously are important although your GP won't know anything about them nor prescribe them, they're not taught nutrition.

Lrden profile image
Lrden in reply to SeasideSusie

Thank you so much for your reply and all the info, I'm seeing a nutritionist mid Jan so hopefully I might get this hair loss issue under control

Lrden profile image
Lrden

Thanks

Your levels look as though you do need meds, but low thyroid isn't the only reason for hairloss - it can be high testosterone levels (SHGB test or all sex hormones) or low iron (ferritin test) and B12 or folate. If you are hypo and stop meds it will eventually cause problem with heart and kidneys plus dementia.

Lrden profile image
Lrden in reply to Angel_of_the_North

Thanks

silverfox7 profile image
silverfox7

I can understand your confusion! Huge learning curve with thyroid problems and you can't do it all at once. Patience is a good word to remember.

Have a look at the Thyroid Uk site. They run this forum and the site has loads of do's and don'ts but itsalotcto take in. Start off with how to take your meds and what not to do and what you can do. Then look at the other things. Make sure you keep retesting 6 weeks after dose changes until you are on the right dose for you.

Shout out if anything you don't understand.

Lrden profile image
Lrden in reply to silverfox7

Thanks, it doesn't help when GPs seem to have no knowledge of the impact of and on vitamin levels, feels like this illness isn't going to be easy and GPs don't seem to have extensive knowledge, I still feel that it could be linked to my auto immune sarcoidosis but they don't seem to know. Lots of learning ahead!

silverfox7 profile image
silverfox7 in reply to Lrden

Many of us sort out our own vitamins etc but getting initial testing done isn't always easy!

Lrden profile image
Lrden in reply to silverfox7

Yes it seems that way, looks as though I may have to go private even for full thyroid tests!

NoLevo profile image
NoLevo

I stopped my levo by slowly reducing my intake over a month. I am doing fine. I was only on 25 and was only a 5.06 tsh to begin with. I was only on it for 5 months. Getting my vitamin levels up to where they belong and no more gluten/wheat had dropped my tsh under 3 in only 4 weeks. I keep getting my prescription filled and have not told my dr. what I am doing. I will test again in 3 months and if hasn't stayed down then I will reconsider, but I am not going to sentence myself to a life of levo if I do not really need it. Tsh levels can be raised by many things.

Lrden profile image
Lrden in reply to NoLevo

Thanks

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