levothyroxine : I was diagnosed underactive... - Thyroid UK

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levothyroxine

ScriptMaz profile image
57 Replies

I was diagnosed underactive thyroid in February. Only symptom I had was unexplained weight gain. Since starting on levothyroxine I have had chronic joint pain and am unable to exercise . All other blood tests came back normal . Is there an alternative to levothyroxine as my body can’t tolerate it?I have now stopped taking it

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ScriptMaz
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RedApple profile image
RedAppleAdministrator

Welcome to the forum ScriptMaz,

Rather than your body being unable to tolerate the levothyroxine, it's more likely that your symptoms are down to being on the wrong dose of this replacement hormone.

What were your thyroid blood test numbers at diagnosis?

How much levothyroxine are you currently prescribed?

What brand of levothyroxine have you been given?

Please don't stop taking the levothyroxine. Every cell in your brain and body need this hormone, and you will make yourself even more hypothyroid if you stop taking levothyroxine.

ScriptMaz profile image
ScriptMaz in reply toRedApple

Thank you. I only got the joint pain after I started on the levothyroxine. Before that I was exercising twice a day, every day. On the levothyroxine I struggled to stand up and sit down. I was on 100mg, then upped to 125mg and then down to 75mg. Nothing changed. I sank into depression as I was unable to exercise and couldn’t handle the constant pain. I’ve been battling with the doctors as they don’t believe it’s the levothyroxine. The last doctor I spoke to allowed me to stop taking the meds to see if my joints went back to normal. I’m 2 weeks in and already the pain has lessened. She said my level was at 15 and that was normal. I’ll get retested in 3 months to see what the levels are at then. I was on Accord but as I say it’s left me in constant pain

RedApple profile image
RedAppleAdministrator in reply toScriptMaz

Are you saying that you were started on 100mcg levothyroxine at the point of diagnosis?

If so, that is likely where your problems started.

Levothyroxine is the replacement hormone that your thyroid isn't producing. This medication needs to be introduced into the body at a low dose and gradually built up over time. It can take months to get reach your own personal dose. It's not a 'one size fits all' medicine.

Typical starting dose is 50mcg. You would stay on that dose for around six weeks, and then increase by 25mcg if blood test show that your TSH is still too high and FT4 too low. Starting on a high dose rarely brings good results, and typically causes more problems in the long run than starting slowly and working up.

You also need to stay on the same brand of levothyroxine. Pharmacists will often fill prescriptions with whichever brand they happen to pick up off the shelf at the time. This isn't acceptable as different brands affect us differently.

It really is a bad idea to stay off the thyroid hormone that you are deficient in for three months. By then, you will be very hypothyroid. Please consider going back on to levothyroxine at a lower dose.

ScriptMaz profile image
ScriptMaz in reply toRedApple

It would send me into a deep depression if I were to go back on the levothyroxine and was unable to exercise again. I used to cry every time I put one of those tablets in my mouth knowing how much pain it would leave me in. I feel like the doctor isn’t listening to me when I tell them how much pain I am in and that it’s the meds. I was super fit before I started on it

RedApple profile image
RedAppleAdministrator in reply toScriptMaz

Please get hold of your thyroid blood test numbers at diagnosis from your surgery and post them here. Do you know whether you have autoimmune hypothyroidism (i.e. tested positive for thyroid antibodies)?

Without this important information, we cannot fully support you with your problems.

We understand how bad you can feel when first starting this hormone replacement. Many, many of us have been there ourselves. I also stopped taking levothyroxine a few months after starting because I felt so bad. But in the long run, all that did was to ensure I became even more hypothyroid, and made it even harder to get onto the right track to recover and find the right dose.

You may be aware that a diagnosis of hypothyroidism means that in the UK, you are entitled to free prescriptions. This is because thyroid hormone is a 'life sustaining' medication. You literally cannot survive and thrive in the long term without enough thyroid hormone. Thyroid hormone is required by every cell in your body and brain. Without the right amount, you will most likely, in time, become extremely ill indeed.

Others that have also trodden a similar path to you will hopefully chime in here with their support for you.

ScriptMaz profile image
ScriptMaz in reply toRedApple

I live in Scotland so we don’t pay for prescriptions anyway. I have came off the levothyroxine mostly to prove it’s the medication that has given me the joint pain. I will go back to the doctors in a couple of months to get retested. I am now able to get out of my bed with no pain. I know that my levels will probably test low but I feel as though the doctor only cares about the numbers rather than how I feel and I’ve never felt worse in my life on those meds

RedApple profile image
RedAppleAdministrator in reply toScriptMaz

Yes, I understand this. Before diagnosis, I was able to go for long walks every day. What I hadn't realised, was that, despite this, my muscles were actually slowly wasting away. With hindsight, I came to understand that it was adrenaline that had kept me going whilst thyroid hormone was depleting.

I was started on 50mcg levothyroxine and within days I couldn't even stand up. I became 'sofa bound' and had to crawl across the floor to get from one room to another. I ended up in A&E twice. I stopped the medication and felt so much better, or so I thought. Unfortunately, the improvement wasn't permanent. You have no pain because your body can no longer register pain. Sounds bizarre, but it's true. Thyroid hormone is as vital to the body and brain as food and drink.

ScriptMaz profile image
ScriptMaz in reply toRedApple

I will go back to the doctors to get the thyroid sorted out but I just need to show them that there is something in the levothyroxine that does not agree with my system

RedApple profile image
RedAppleAdministrator in reply toScriptMaz

'I just need to show them that there is something in the levothyroxine that does not agree with my system'

You haven't told us what brand/s of levothyroxine you've been taking? There is a chance that a different brand would suit you better.

ScriptMaz profile image
ScriptMaz in reply toRedApple

I have been on Accord. The doctors keep sending me for more blood tests as they don’t believe it’s the medication. All tests have came back normal. I just need them to listen and offer me alternatives. I know my own body and admit that my thyroid is underactive but the solution they gave me hasn’t sorted the problem and left me in a far worse state

RedApple profile image
RedAppleAdministrator in reply toScriptMaz

Just as long as you realise that the vast majority of GPs know very little at all about hypothyroidism and its treatment. Chances are, they will tell you that there is no other solution than levothyroxine. Your own thyroid would normally produce the thyroxine hormone (also known as T4). Levothyroxine is the hormone replacement.

You need to be pro-active and offer your doctor an alternative. Sometimes, liquid levothyroxine causes less problems than the tablet form. So you could try asking your doctor to prescribe liquid levo for you. The downside of liquid levo is that a) it's a lot more expensive to the NHS than tablets, so there is a reluctance to prescribe it, and b) it is prone to sporadic shortages. Might be worth discussing with your GP though.

ScriptMaz profile image
ScriptMaz in reply toRedApple

Thanks. That’s exactly the reason why I posted. I know the doctors are a bit useless and just prescribe levothyroxine in a one size fits all manner. I just need to find alternative opinions so that when I go back I’m armed with more information

RedApple profile image
RedAppleAdministrator in reply toScriptMaz

You may also need to start on the lower dose of 25mcg a day, to allow your body to get used to the sudden influx of hormone that it's been managing without for a long time. Don't assume that it will be plain sailing even then, but better to try this approach asap than allow yourself to become even more hypothyroid by staying off medication completely.

ScriptMaz profile image
ScriptMaz in reply toRedApple

I’m up for that. I just need the joint pain to go away so that I can exercise again. It’s lessened in the last 2 weeks so hopefully the doctors will listen to me now instead of just telling me my levels are fine and to put up with the pain. I know many people who have been helped with the levothyroxine but unfortunately I’m not one of them

RedApple profile image
RedAppleAdministrator in reply toScriptMaz

'I know many people who have been helped with the levothyroxine but unfortunately I’m not one of them'

To be absolutely clear, liquid levothyroxine is the same hormone but in a liquid form instead of a tablet. The active ingredients of liquid and tablets are exactly the same (i.e. levothyroxine), it's only the excipients and method of delivery that are different.

ScriptMaz profile image
ScriptMaz in reply toRedApple

People have said the levothyroxine has fillers in it that maybe don’t agree with me so it’s possibly that

DJFERG profile image
DJFERG in reply toRedApple

Hi I was on the tablet version and have changed to liquid. The tablets made me come out in a rash. I am coeliac and read the shell of the tablet contained or was contaminated with gluten. Rash has gone on liquid thyroxine but as ScriptMaz said joints are painful, I too do gym & classes but not as I used too.

RedApple profile image
RedAppleAdministrator in reply toDJFERG

DJFERG ' I am coeliac and read the shell of the tablet contained or was contaminated with gluten'

All UK levothyroxines are gluten free, so it cannot have been gluten that caused you problems. Not only that, but no UK levothyroxine (or liothyronine) tablets have any shell. They are designed to dissolve rapidly in the stomach, and a shell would likely hinder this to some extent.

Link to information about UK medicines on Coeliac UK coeliac.org.uk/information-...

Kimkat profile image
Kimkat in reply toScriptMaz

It may be good for you to get your bloods tested privately and post them on here, GPs only seem interested in the TSH now but your other levels need to be taken into consideration too. I was started off on 25mcg and I’m now in 100mcg which was gradually increased, I suffered badly with muscle pain but I’m now back in the gym and slowly feeling the benefit. It’s not an overnight thing it takes time but I would just stop taking your Levo, best to get those blood tests first.

ScriptMaz profile image
ScriptMaz in reply toKimkat

I’m waiting to see how my body reacts to not taking the levothyroxine first. I’ll get retested and if the levels go back to being low I’ll discuss treatment with the doctor. I’m now armed with a bit more information

Essexlil profile image
Essexlil in reply toScriptMaz

Could it be the manufacturer - I can’t tolerate Teva but am better on Mercury Pharma

ScriptMaz profile image
ScriptMaz in reply toEssexlil

That’s what I think it might be. I asked at the pharmacy which brands they stock and its Accord and Mercury. I started on the Mercury for a few days but I think there was still a lot of the Accord brand in my system so it might be better to wait till that’s gone first before I try it again. If I start to feel bad in a few weeks I have about a months worth of Mercury brand that I can try

RedApple profile image
RedAppleAdministrator in reply toScriptMaz

'It would send me into a deep depression if I were to go back on the levothyroxine and was unable to exercise again.'

Without an appropriate amount of thyroid hormone in your body, exercising can do more harm than good to your muscles over time. Muscle needs thyroid hormone.

There are people who naturally seem to be absolutely fine with a TSH above range for their whole lives. But these are rare cases. The likelihood is that the longer you stay off thyroid hormone replacement, the less able you will be to exercise anyway. Insufficient thyroid hormone over time leads to weakened, fatigued muscles that exercise won't put right.

ScriptMaz profile image
ScriptMaz in reply toRedApple

I’ve came off the meds under doctors supervision. Like I’ve said before the only symptom I had was unexplained weight gain which got worse on the medication since I was unable to move without agonising pain. Exercise keeps my mental health in check. I either stay on the meds, get fatter and depressed or come off them and prove to the doctors that the meds aren’t working for me and they can investigate alternatives. I refuse to give in and settle for a life of chronic pain

RedApple profile image
RedAppleAdministrator in reply toScriptMaz

Understood. So what made you join this forum and post? What are you hoping to gain from being here?

'Exercise keeps my mental health in check. '

Are you aware that inappropriate levels of thyroid hormone affect your mental health? Mental health issues were my only reason for going to see a GP, which eventually lead to the hypothyroid diagnosis. And, over time, it proved to be that appropriate levels of thyroid hormone are what keep my mental health in check.

SlowDragon profile image
SlowDragonAdministrator

Sounds like low vitamin levels and /or poor conversion of Ft4 (levothyroxine) to Ft3 (active hormone)

Do you know what your results were BEFORE starting on levothyroxine

And what results were at

100mcg

125mcg

And then

75mcg

You always need TSH, Ft4 and Ft3 tested at every test

ALWAYS test early morning, ideally just before 9am, only drinking water between waking and test and last dose levothyroxine 24 hours before test

This gives highest TSH and lowest Ft4

Extremely important to test vitamin D, folate, ferritin and B12 at least once year, and more frequently if dose levothyroxine is reduced

We must have GOOD vitamin levels for good conversion of Ft4 to Ft3

Have you had vitamin levels tested?

Also essential to test TPO and TG thyroid antibodies for autoimmune thyroid disease (hashimoto’s) at least once

Have these been tested

About 90% of primary hypothyroidism is caused by autoimmune disease

Depression is common hypothyroid symptom

Symptoms of hypothyroidism

thyroiduk.org/wp-content/up...

Very common to initially feel much better when stop levothyroxine, but after several weeks/months hypothyroid symptoms can return

Bloods should be retested 8-10 weeks after any dose reduction in levothyroxine

Private tests are available as NHS currently rarely tests Ft3 or all relevant vitamins

List of private testing options and money off codes

thyroiduk.org/getting-a-dia...

Medichecks Thyroid plus antibodies and vitamins

medichecks.com/products/adv...

Blue Horizon Thyroid Premium Gold includes antibodies, cortisol and vitamins

bluehorizonbloodtests.co.uk...

Only do private testing early Monday or Tuesday morning.

Link about thyroid blood tests

thyroiduk.org/getting-a-dia...

Link about Hashimoto’s

thyroiduk.org/hypothyroid-b...

Symptoms of hypothyroidism

thyroiduk.org/wp-content/up...

Tips on how to do DIY finger prick test

healthunlocked.com/thyroidu...

Medichecks and BH also offer private blood draw at clinic near you, or private nurse to your own home…..for an extra fee

ScriptMaz profile image
ScriptMaz in reply toSlowDragon

I had everything tested. B12, iron, folic, ferritin, vitd, liver, kidneys, rheumatism. All completely normal. I was diagnosed Hashimoto’s in 2018 an put on 50mg. It made no difference so I stopped taking them. Only went to doctors again in February because I had put on weight despite exercising twice a day. Since I started levo I have been in constant agony. I can only put it down to the levothyroxine as nothing else has changed in my life. They said my level this time was 5 so put me on 100mg. I only started feeling down because I was unable to exercise. Now that I’m off it and able to exercise again have I felt better. The doctor said if my levels are low when I get retested then she will look at alternatives but it would kill me if they put me back on levothyroxine. I couldn’t live the rest of my life with the pain I’ve had for the last 5 months

SlowDragon profile image
SlowDragonAdministrator in reply toScriptMaz

50mcg is only a starter dose

Bloods should be retested 6-8 weeks after each increase in dose

Typically takes 12-18 months to slowly increase dose levothyroxine up to full replacement dose ….typically that’s around 1.6mcg levothyroxine per kilo per day

On levothyroxine TSH should always be under 2. Many people when adequately treated will have TSH below 1

Most important results are always Ft3 followed by Ft4

and very important to maintain OPTIMAL vitamin levels

Joint pain often low vitamin D

As cause of your hypothyroidism is autoimmune Hashimoto’s ,…….Many people find they need to be gluten free/dairy free

HealthStarDust profile image
HealthStarDust

FYI I started with a full replacement dose as my starting dose as per NICE guidelines according to me weight , but 100mcg was too much for my body to take all at once. Initially I felt a lot of pain and other symptoms lifted, then they returned but worse. I did a bit of research and realised my TSH must be suppressed and I was overmedicated. So I stopped the medications for a few days only and I felt absolutely brilliant during that time, and retuned on a lower dose and have been titrating my dose up slowly. I should add my GP was onboard with this idea, especially when my TSH came back as suppressed on 100mcg anyway (no T4 or T3 was tested but for me my symptoms alone were enough for me to know I was over medicated so I didn’t wait for the TSH result anyway).

I am still trying to find my optimum dose. Until I have cause for concern, I am hoping the brand suits me fine and that I am not what is often called a bad convertor. I am tired, like you I can’t exercise as it’s hurts so much. I try a little most day anyway as not exercising is probably shortening my muscles and making all problems worse,

I know if God willing, I’ll need to go up in dose slowly as I have no choice in the matter seeing as my body just couldn’t handle a full dose all at once.

100mcg as a starting dose is like giving a broken car a jump start, and leaving it there when it needs to get back down to a steady safe driving mode. That’s how I imagined it was like for me on a full replacement dose.

Hope that’s helps.

ScriptMaz profile image
ScriptMaz in reply toHealthStarDust

If the medication had lifted the symptom I originally had I would have stuck with it and tried to get used to it but it didn’t. On the meds I wasn’t able to move as I was in so much pain. My sleep pattern was awful as I couldn’t sleep due to the pain. I was put on iron tablets and folic acid but they made no difference either. I feel as though the doctors just prescribe the levothyroxine and expect everything to be fine but in my case it’s not. I’ll keep fighting to be heard

SlowDragon profile image
SlowDragonAdministrator in reply toScriptMaz

So you have low iron and low folate

Perhaps low B12 and vitamin D too

Vitamin levels will crash down further when you stop levothyroxine due to low stomach acid when hypothyroid

Being on inadequate dose levothyroxine, and/or low vitamin levels will cause fatigue, pain, depression etc

Many of us have been in similar place

Personally I stopped levothyroxine on 3 separate occasions, (long, long story 28 years ago ) having been left on inadequate dose levothyroxine and with terrible and untreated vitamin levels and undiagnosed gluten intolerance ….

first time I got away with it…after 2-3 weeks ….became mildly hypo.

2nd time year later …..became extremely unwell. Took 2-3 months to return to anything approaching normality

3rd time another year later…..so unwell I was tested for MS, pituitary tumour, motor neuron disease, Addison’s etc etc. Took 9-12 months after restarting levothyroxine before I could manage short 1/4 mile walk at slow pace

I then got referral I needed to specialist thyroid endocrinologist who increased dose levothyroxine

Now fully recovered on correct dose levothyroxine, plus small doses of T3 ……and essentially on strictly gluten and dairy free diet plus continuous supplements of vitamin D, magnesium and B complex

Many members also need to supplement B12 and iron, particularly when initially diagnosed

You need coeliac blood test too

ScriptMaz profile image
ScriptMaz in reply toSlowDragon

Iron, B12, folic, ferritin, kidney, liver, rheumatism all came back normal. Since stopping the levothyroxine my joints aren’t as painful and my energy levels have increased. I had no issues with them pre-levothyroxine. This all leads me to conclude it’s the medication that has left me in a terrible state. The doctor told me previously that if all of those tests came back normal he would look at pain management but I refuse to go down that route as I know it’s the medication that has given me the pain. They don’t seem to consider how I feel

Just saying results are normal, is really of no help at all-what is normal for one is not for another! You and the people here who are trying to help and advise-because they have all been there themselves- need to know the RANGE of each of these results, as different labs work to different ranges. When were you taking the Levo? Time of day it is taken helps, and it must be taken at least 30-60 minutes before anything with milk, food etc which can affect the absorption. Looking at the posts here up to now, maybe if you start again with 50mcg a day, or even 25mcg and follow the advice given by others your body can build up an acceptance to it. Doing a Medichecks test will be helpful, too as the notes which explain the readings are very informative. Refusing to take it won't help you, and will eventually make you really ill.

ScriptMaz profile image
ScriptMaz in reply to

The doctors here in Scotland don’t give you the actual information about results. They said my level was 5 and now it’s 15. So they think I should be fine. I’ve been checked for all vitamin deficiencies and they all came back normal. I have stopped taking it with the permission of the doctor to see if the joint pain lessens. Then I’ll go back and get my levels checked again. At least this time I’ll be armed with more information. Taking the levothyroxine left me with more issues than I started with

SlowDragon profile image
SlowDragonAdministrator in reply toScriptMaz

The doctors here in Scotland don’t give you the actual information about results. They said my level was 5 and now it’s 15.

You are legally entitled to printed copies of your blood test results and ranges.

The best way to get access to current and historic blood test results is to register for online access to your medical record and blood test results

UK GP practices are supposed to offer everyone online access for blood test results. Ring and ask if this is available and apply to do so if possible, if it is you may need "enhanced access" to see blood results.

Link re access

patients-association.org.uk...

healthunlocked.com/thyroidu...

In reality some GP surgeries still do not have blood test results online yet

Alternatively ring receptionist and request printed copies of results. Allow couple of days and then go and pick up.

Bloods should be retested 6-8 weeks after each dose change or brand change in levothyroxine

NHS rarely tests Ft3 and in Scotland they tend to only test Total T3……an outdated test

I’ve been checked for all vitamin deficiencies and they all came back normal.

Vitamin levels need to be OPTIMAL…..not just within range

If you have any actual vitamin results and ranges please add them

Iron supplements need to be at least 4 hours away from levothyroxine and at least 2 hours away from other supplements

Levothyroxine needs to be taken on empty stomach and then nothing apart from water for at least an hour. No supplements or other medication within 2 hours

Vitamin D tablets, magnesium, iron, HRT or PPI at least 4 hours away from levothyroxine

Taking the levothyroxine left me with more issues than I started with

It will do if not on correct dose and optimal vitamin levels

Levothyroxine doesn’t top up failing thyroid, it replaces it so it’s essential to be on high enough dose

ScriptMaz profile image
ScriptMaz in reply toSlowDragon

I used to take it about 5 in the morning and go back to sleep for 2 hours. Then after doing some research I tried it at night before I went to sleep and 4 hours after I had something to eat but it didn’t make much of a difference.

Like I said before the doctors only tell me they are within the acceptable range. They don’t give me details

SlowDragon profile image
SlowDragonAdministrator in reply toScriptMaz

No they hate an informed patient

Contact receptionist on Monday and request printed copies of all your test results over last year

Allow day or two then go pick up

And enquire about getting online access to test results going forward. Usually need to take ID to get set up

Likely you have been hypothyroid a while prior to diagnosis

How old are you approximately

And roughly what do you weigh in kilo

ScriptMaz profile image
ScriptMaz in reply toSlowDragon

I was diagnosed Hashimoto’s in 2018 but didn’t require any treatment at the time as I was borderline underactive. I got diagnosed in February 2023 as significantly underactive and that’s why they put me on meds. I just turned 50 and my hormones have been checked and I’m not menopausal or peri menopausal. My weight used to be 10.5 stone and went up to 11.5 for no reason as I had a healthy diet and exercised twice a day every day

SlowDragon profile image
SlowDragonAdministrator in reply toScriptMaz

So 11 stone 7lbs is approximately 73 kg

thecalculatorsite.com/conve...

Guidelines on dose levothyroxine by weight is appropriately 1.6mcg per kilo of your weight per day

That’s approximately 117mcg per day

So likely daily dose 100mcg 2 days and 125mcg 5 days per week

But some people need more than guidelines

And it’s always essential to maintain OPTIMAL vitamin levels

Gluten (especially wheat) can cause terrible pain on levothyroxine

ScriptMaz profile image
ScriptMaz in reply toSlowDragon

I started on 100mg. I read that too low can cause joint pain so I battled with the doctor and he eventually increased it to 125mg. The pain got worse. I had it decreased to 75mg, the pain slightly improved but I was still in agony. After numerous tests, that came back normal, I stopped taking them. The pain has started to lessen after 2 weeks. I was in too much pain to lead any kind of life but now I feel like I can start living again

SlowDragon profile image
SlowDragonAdministrator in reply toScriptMaz

I was diagnosed Hashimoto’s in 2018 but didn’t require any treatment at the time as I was borderline underactive.

Would be interesting to see those results…..you probably did need treatment

GP should have done coeliac blood test then, did they?

And vitamin levels tested

ScriptMaz profile image
ScriptMaz in reply toSlowDragon

Even though I was borderline they put me on 50mg but it made no difference whatsoever so the doctor took me off them. At that point I had no issues with joint pain but they never relieved any of the issues I had originally went to the doctors with so they felt it was pointless taking them which I agreed with

SlowDragon profile image
SlowDragonAdministrator in reply toScriptMaz

See what results show at next test

Essential to include testing for vitamin D, folate, ferritin and B12

What vitamin supplements are you currently taking

Meanwhile get coeliac test before considering if going to try gluten free diet

ScriptMaz profile image
ScriptMaz in reply toSlowDragon

At my test a month ago folate, ferritin, b12, vit D, liver, kidneys were all normal. I take collagen and vit D supplements already and have no other health issues except chronic migraines (which I have had for over 15 years). I got a full blood count done too and that was normal. My only issue is the joint pain. I eat a healthy balanced diet, drink plenty of water and before this exercised a lot to stay strong. My issues only started about 4 weeks after starting levo

SlowDragon profile image
SlowDragonAdministrator in reply toScriptMaz

folate, ferritin, b12, vit D

Can you add actual results

Migraine is common hypothyroid symptom

What are you taking for migraine

If it’s propranolol this significantly affects thyroid hormones

ScriptMaz profile image
ScriptMaz in reply toSlowDragon

As I’ve said before the doctor only tells me that tests came back normal. They don’t give me any figures. I have taken many different treatments over the years for migraine and nothing has taken them away. I have had horrendous side effects on many of them. I then had nerve blocking injections and Botox. Neither of which worked either. I now take Zomig when an attack comes on which takes the pain away. I worry about the effects all these drugs have had on my body and am loathe to take anymore. I would rather go down a more natural route

SlowDragon profile image
SlowDragonAdministrator in reply toScriptMaz

Come back with new post once you get historic thyroid and vitamin test results from GP Receptionist

Did migraine diminish at all while on levothyroxine

List of thyroid specialists and endocrinologists, some of whom will prescribe T3 alongside levothyroxine, or (much more expensive) NDT

healthunlocked.com/thyroidu...

ScriptMaz profile image
ScriptMaz in reply toSlowDragon

When I first started on levothyroxine they got more frequent to the point I was only having 2 days a week without a migraine. It tailed off after 2 months back to my usual frequency . Thank you for your advice

Lalatoot profile image
Lalatoot in reply toScriptMaz

Don't know where you are in Scotland but my GP surgery gives me my results in detail when I ask for them. I am in NHS Grampian.I felt terrible on levothyroxine. For 4 years doctors told me my results were normal. I decided levothyroxine was the problem .I cut down from 100mcg per day to 25mcg per day. Felt fantastic. Apparently you do when you come off levo . After 3 months I was very hypo and very ill .

I then realised that I had to learn about thyroid so I could understand what was going on. The reason I felt so ill on levo was that I wasn't on a high enough dose. Yes my results were in the expected range for results but the range was so wide and I was at the wrong level of normal for me Later on I then found out that I needed a little liothyronine added to the levo to make me feel better.

Keep monitoring your levels as I'd hate your levels to get as low as mine became .

ScriptMaz profile image
ScriptMaz in reply toLalatoot

I live in Glasgow. My only symptom is chronic joint pain. I don’t have problems with low energy or fatigue. I’m just really frustrated at not being able to exercise as my joints don’t work properly. I can’t kneel down at all and struggle to stand up and sit down while I’m taking the levothyroxine. I feel like it’s ruined my joints forever

Poniesrfun profile image
Poniesrfun

Consider reading this article about thyroid medications

thyroiduk.org/if-you-are-hy...

I was surprised to find that the tiny amounts of an inactive ingredient one is sensitive to could cause severe reactions that I heard people complain about - until it happened to me. Doctors and pharmacists will tell you that the meds are all the same - they’re not.

Patti in AZ

Longinthetooth profile image
Longinthetooth

HiSorry to hear that you are so unwell.

It's quite drastic to stop levo as you have done. Eventually, you will start to feel unwell again. A different brand may be the solution as in my case. Exercise is important to you but take it easy until you start to feel better. Perhaps, look for alternative forms of exercise that aren't as aggressive. Weight gain is sometimes inevitable with a thyroid deficiency. Please be kind to yourself & believe these symptoms are common amongst fellow sufferers.

ScriptMaz profile image
ScriptMaz in reply toLonginthetooth

Thanks, when you say try gentle forms of exercise. That wasn’t possible as it hurts to move. I can’t bend over or kneel down. Getting up and sitting down are agony while I’m taking levothyroxine. I refuse to spend my life like that. Now that I’ve came off the levothyroxine I am able to go for walks, not as fast as I used to but at least I can move. I’m trying to show the doctors how sore I am and not able to live my life while taking this horrendous medication. They need to find some alternative that works for me

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Longinthetooth in reply toScriptMaz

When I started on Wockhart (spelling, not sure) I felt great for a week or so but then my legs started to ache, especially when walking. I was changed to Eltroxin which suits me. Where I now live the doctor prescribes a generic levothyroxine to his patients & didn't know what Eltroxin was! If you start to feel unwell again & it's suggested that you go back on levothyroxine, ask for a different brand. Some doctors have some knowledge of our problem & try to help but others have no idea & fit us all into one basket. It's a complex problem.

ScriptMaz profile image
ScriptMaz in reply toLonginthetooth

Thanks, I’ll add that brand to the list. The brand I had was Accord and it made my life worse rather than better. It never took away the symptom I originally had and gave me more problems. If I have to go back on them then I have a couple of different brands to try

Longinthetooth profile image
Longinthetooth in reply toScriptMaz

All the best.

ScriptMaz profile image
ScriptMaz in reply toLonginthetooth

Thank you

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