Help pleaseeee😭😭😭😭: Can some one help me... - Thyroid UK

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Help pleaseeee😭😭😭😭

luv2017 profile image
48 Replies

Can some one help me please ..? I was diagnosed with hypothyroidism and started to take tablets from last month (September 28th). The tablet and all the test happend in India as I was on holiday and started to take my tablet since then and I was told to check in UK after 6 weeks. Attached the pic of the tablet.

For the past 4 days am having severe leg pain which I can’t bare and crying every day. Is this anything related to the thyroid and the tablet ??? Should I stop the tablet?? I am going to call and book an appointment on Monday , but not sure when will get it . I can’t sleep and I didn’t sleep well for 4 days.

Please advise , I can’t bare the pain and it’s in both the legs feeling like to cut down my legs ..

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luv2017 profile image
luv2017
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48 Replies
EbonyEvans profile image
EbonyEvans

Hello Luv2017,

You will need to post your result from any blood tests you’ve had. Also at this time of the morning I doubt you will get any replies. Maybe repost a little later with the bloods?

What dose where you prescribed to start with? Is this the first time you have taken thyroid related medicine? I personally would stop taking the tablets if it started when you started taking them. But it sounds like you’ve been in them for a few weeks? What ingredients are listed? Have you been able to research the fillers? As you may be allergic or intolerant to something in them. I would also go to a&e if you are having leg pain as it could be DVT related after your flight. Four days of pain is a warning. I’d go now.

maggiesloper profile image
maggiesloper in reply toEbonyEvans

You should go to your doctor. Do you have any back pain? It could be totally unrelated e.g. sciatica

in reply tomaggiesloper

It would be unusual to get a deep vein thrombosois in both legs but definitely possible. I would go to a A and E to get checked out. Not something to leave until Monday or phone 111 over weekend. I think unlikey to be medication.

luv2017 profile image
luv2017 in reply to

Ya thanks am gonna call 111.

luv2017 profile image
luv2017 in reply tomaggiesloper

Ya I thought sciatica so when I googled , and I was doing exercise for that but nothing helps..

luv2017 profile image
luv2017 in reply toEbonyEvans

Hey ya , thanks for that . Yes this is my first time taking thyroid tablets . Ya that’s my doubt as I was having for 3 weeks and suddenly got this severe pain . Let me phone 111 and ask them . I really can’t bare the pain . Thanks anyways.

luv2017 profile image
luv2017 in reply toEbonyEvans

My result which I’ve got from India is

TSH: 5.69 mlU/ml .

hellybaybee profile image
hellybaybee

Poor you, I don’t really know what to suggest. I’ve never heard of the tablets you have and the measure also seems lower than anything I’ve ever seen. Pain in your legs could be a number of things; allergy to something in your medication, vitamin d deficiency, vitamin b12 deficiency or something completely unrelated. I had terrible back and pelvic pain that extended to my hips and knees but I also had endometriosis and adenomyosis at the same time I discovered I had a b12 deficiency. I couldn’t sleep either. I had the endometriosis and b12 treated at the same time and it improved. Because I still have adenomyosis I get hip pain but it’s bearable. The only thing I can say is speak to your doctor, tell them what your experiencing andshow them the medication you’ve been taking and I would imagine that you will give you another blood test. When you get the results of this, post your results onto the site and would can offer you more advice. Good luck x

luv2017 profile image
luv2017 in reply tohellybaybee

Ya sure will post the result. Thanks so much . Hope will see doctor today .

helvella profile image
helvellaAdministrator in reply tohellybaybee

hellybaybee

Teva also supply 12.5 microgram tablets in the UK. (I have got some!)

Such doses can be useful in getting to an optimum daily dose without alternate day dosing (or similar approaches).

luv2017 profile image
luv2017 in reply tohelvella

Aww ok ,,,ya I phoned 111 and waiting for the call . It’s been 1 1/2 hour and still no call from them . I don’t know wether I should take thyroid tablet today . Am still have not eaten anything as I thought if am in fasting , I can give the blood test today ??? Am gonna wait for 30 mins else I will eat something as I wont be able to control my hunger .. I can feel the pain in my hands too now .,, don’t know what’s happening 😭😭😭

helvella profile image
helvellaAdministrator in reply toluv2017

I hope they call back soon. You need help.

If you are able, do let us know.

luv2017 profile image
luv2017 in reply tohelvella

Sure will do , thanks for that

luv2017 profile image
luv2017 in reply toluv2017

Ok I called again to ask about the wait,

Senior nurse told me that am eating ok and not having problem with eating. No vomit so am good . So she can’t take my call today and it’s not emergency and she asked to wait until Monday to go to GP. Sure won’t get appointment sooner .

She says to take paracetamol and asked to drink fluids . I told I have been taking pain killer and paracetamol which don’t help at all . But still she says it’s not emergency. I was fasting so I can go and give the blood test today ., I am tried , can’t move , extreme pain all over the body. And it’s getting just worse . But still I should take paracetamol ??? My previous paracetamol no good?? So emergency here is only if you about to die ??? I just thrown away my phone after she disconnected the call .

If I could afford I can to private clinics but still when we went to private once for my husband with no use , am fed up .

luv2017 profile image
luv2017 in reply toluv2017

I don’t know what to do ,, I had my tea and biscuit with out my thyroid tablet today .should I stop it until I get my appointment??? I just don’t know , my husband is freaking out more than me. Am feverish too ,, should I go to hospital and beg for the treatment?? Am going crazy. My eyes are swollen and red because am continuously crying. Am so feeling pity on myself . Oh I miss my parents and my place where you get the help when it’s needed.

SeasideSusie profile image
SeasideSusieRemembering in reply toluv2017

I would go to A & E.

Catseyes235 profile image
Catseyes235 in reply toluv2017

Do NOT stop the thyroid tablets It is most likely the under treated condition not the pills that are making you feel bad. Did you tell the nurse about your medication? Go to A &E TODAY! (Don't have to take thyroid meds with anything just take it . .prefereably two. ) are you in UK and where?

luv2017 profile image
luv2017 in reply toCatseyes235

Yes am in Uk and I booked my appointment tomorrow. Yes I spoke with the doctor and told everything and then she booked an appointment Tomo . I took one tablet last night and one in the morning may be that’s why am feeling ok , not sure . Will take the tablet, test report and show them . I already took one in the morning , can I take one more tonight ?? Will I die if I take more 😭😭😭😭 Sorry just curious..

Catseyes235 profile image
Catseyes235 in reply toluv2017

Doubling the dose to 25mcg is good then maybe add another tomorrow. I started on 50mcg but you should not take more than that unless advised by doc as have to increase slowly over a period of time. Too much will give you palpitations , sweatiness and shakey hands. (There are some other really weird feelings with underactive thyroid . .cold shoulder . .pain and stiffness and a feeling like rubber bands round wrists. Also affects thinking and mental state! Horrid)

luv2017 profile image
luv2017 in reply toCatseyes235

Ok i had one in this morning and am gonna have one more tonight and that adds up to 25 mcg for a day . I have Tomo appointment at 11., so hopefully they will do something . Not sure wether they ask me to come back for the test other day . Thanks anyways

Catseyes235 profile image
Catseyes235 in reply toluv2017

It IS an emergency! Whoever you talk to give them your TSH reading and thyroid dose.

shaws profile image
shawsAdministrator

Joint and muscle pain can be caused by hypothyroidism. Your dose could be on the low side but I think it is more likely that you need a new blood test and an increase in dose.

Make an appointment to see GP, and he will probably recommend you have a new blood test (I hope so). This test has to be the earliest possible, fasting (you can drink water) and allow a gap of 24 hours between your last dose of Thyronorm and take it afterwards.

Ask GP for TSH, T4, T3, Free T4, Free T3 and thyroid antibodies. He may not do all of these, but you can have a Private Blood test for those not tested.

Your GP should definitely test B12, Vit D, iron, ferritin and folate. Everything has to be optimal.

You should take thyroid hormones as soon as you get up in the morning with one full glass of water and wait about an hour before eating. Food can interfere with the uptake of hormones. Or, if you prefer, you can take it at bedtime as long as you've last eaten about 3 hours before (if taken protein in meal).

If you are having a blood test allow a gap of 24 hours between your last dose and the test and take afterwards.

thyroiduk.org.uk/tuk/about_...

Always get a print-out of your results from the surgery with the ranges for your own records and post if you have a query.

luv2017 profile image
luv2017 in reply toshaws

Thanks so much . I just called 111 and waiting for them to call back .

Rmichelle profile image
Rmichelle in reply toluv2017

Good luck.🌻

HLAB35 profile image
HLAB35

Best of luck phoning 111 - I agree that if this has had a sudden onset that DVT is a strong possibility. You'd be prone to DVT due to under-treated thyroid and you now require optimal treatment back in the UK. It'd definitely be worth checking out b12 levels as part of the package. Low b12 has wide ranging symptoms which at the very least can make us more wobbly, forgetful and cause deterioration of our nerves' protective myelin coating which can bring about numbness, tingling and pain.

luv2017 profile image
luv2017 in reply toHLAB35

I seriously don’t know what’s all these .. I eat really healthy and do moderate exercise weekly thrice . But after all these I feel so depressed. It’s me and my husband here and I really miss my home. I came this site for pregnancy help and it’s unfortunate am getting a help to just survive.. thanks everyone , you guys always feel like am near home ...

HLAB35 profile image
HLAB35 in reply toluv2017

Dr Chandy who started b12d.org/ used to live in India and found that low b12 was a problem over there and brought his knowledge to the UK. It'd be worthwhile looking at their website.

Eating 'healthy' and exercise is what I was doing when I was younger, but it wasn't enough. Stomach acid is weak due to low thyroid and b12 is a very large molecule that is hard to absorb. I was becoming increasingly forgetful, slow and anxious all the time with terrible back pain. If exercise and diet isn't helping then your body is crying out for things that it's not getting that it desperately needs.

luv2017 profile image
luv2017 in reply toHLAB35

Ya ok ,, I just need to know what’s wrong with me and I can do anything to be good. Am just waiting to go to doctor and test .hope something will happen today . Thanks for the reply

Catseyes235 profile image
Catseyes235 in reply toluv2017

You NEED thyroxine . .it is a hormone that affects all your cells and you cannot live without it. Lots of chemists have basic books on thyroid. In fact I would go to your local chemist in the meantime as they will realise your doseage is too low and may get you more notice from doctor. You shoukd not be diagnosed by a nurse! Insist you talk to a doctor and even get your husband to talk to to them.

TSH110 profile image
TSH110

I had terrible sciatica, joints pains burning in bones etc when my hypothyrodism was not diagnosed or treated. It could well be a symptom and I felt lousy with a TSH at 5 ideally it should be under 1. Now I am properly medicated I get very little joint problems (but still the odd annoyance) I found NDT more effective than levothyroxine (same basically as your tablets) 12.5g is a very low dose I suspect you need an increase. 125g is a basic maintenace dose but you have to titrate up gradually until you feel better again. It is usually 6 weeks then blood test and increase in dose if results are still not optimal. TSH below 1, free t4 and free T 3 in top third of range (numbers in brackets after the result). Hope you start to feel better soon once doc sees you and ups the medication ☘️🍀☘️

luv2017 profile image
luv2017

Thanks all ,, just an update , I didn’t take my thyroid tablet today .My leg pain and arm pain gradually reduced as I didn’t have my thyroid tablet . Not sure wether the tablet made me feel the pain( not sure wether it’s over dosed) Then I took one paracetamol and had a good sleep.

But am planning to take my thyroid tablet Tomo as I don’t want to stop as am nearing my ovulation. Should I take Tomo ? Any advice ?? Thanks

eeng profile image
eeng

If not taking your thyroid medication makes you feel better then don't take it. Your dose of thyroxine was very low (we usually start on 25mcg or 50mcg in the UK), and your TSH, while over range, is not extremely high. If it makes you feel better wait until you see a doctor. Here we have to get two TSH results over range 3 months apart before we are prescribed Thyroxine (e.g. Thyronorm) because sometimes an infection can give a high TSH reading when there is nothing wrong with your thyroid.

If you feel better without the Thyroxine get your doctor to do an new thyroid function test and see what the results are. Maybe you don't need the pills.

Definitely don't panic!!

luv2017 profile image
luv2017 in reply toeeng

Thanks so much . Ok I won’t take the tablet from Tomo . Will go to GP next week for the test.

luv2017 profile image
luv2017 in reply toeeng

Sorry do you mean my result level was not that high ? Result was

TSH 5.69 mlU/ml

(range 0.270 -5.370)

luv2017 profile image
luv2017 in reply toeeng

Hey ya,

I didn’t take my thyroid tablet and I get my leg pain back , I don’t know what to do ,, should I continue from Tomo ?? Or can I wait until I get my appointment ???

Catseyes235 profile image
Catseyes235 in reply toeeng

I would never recommend someone stop taking their meds when the bloods indicate hypothyroidism. Could make much worse! Probably to up her dose pref under supervision. However my doc prescribed thyroxine after hearing me speak on the phone!

luv2017 profile image
luv2017 in reply toCatseyes235

Am so confused and don’t know what to do. I had my tablet for 2 weeks with no problem but on my 3rd week my leg pain has started . I was also having a spoon of cocunut oil which is good for hypothyroidism. So I wonder wether my blood came to normal and i have severe pain coz of overdose ??? Am totally lost and feel like chopping my legs . I pray god to get my appointment Tomo so I can give my blood test immediately. I think blood result will take 4 days or 1 week to come and I don’t know how I am going to survive until then . I just understand how long is a minute. I don’t drink at all and I just want to drink something so I can sleep . I completely forgot the goodness of sleep with in 5 days 😭😭😭.

Catseyes235 profile image
Catseyes235 in reply toluv2017

All hypothyroid symptoms. Do NOT stop taking the thyroxine it is helping but just needs to be increased. Hang on in there. Like I said you don't have to wait for results to increase thyroxine. Hope your doc knows about thyroid stuff but take the tabs your taking along with you! (It really is a very minimal dose)

luv2017 profile image
luv2017 in reply toCatseyes235

Ya ok will call and book an appointment today, thanks

luv2017 profile image
luv2017 in reply toCatseyes235

Hey ya ,,my leg pain wAs much better compared yesterday, I have no idea what’s happening . I took my tablet today in empty stomach and had my smoothie after 1 1/2 hour and I can feel am much better now. Anyways will go to doctor Tomo . Thanks so much

Boba profile image
Boba

Do you have chest pain too ? I had stabbing , shooting pain in one leg, it was very painful , like knife stuck thru my leg completely, and also I had thing chest. I was checked for DVT but it wasn't blood clot but I was taking too much levothryoxine . My dose in pregnancy was higher and 2 months after having a baby I continued the same dose but it was too much .

It helped to lower the dose , slowly pain dissappeared .

Maybe just request all blood tests in Thyroid and antibodies ones , vit D( I was low then), Magnesium.

best wishes

luv2017 profile image
luv2017 in reply toBoba

Hey ya,

No I don’t have or had any chest pain. I had Severe leg pain for past 5 days , both of my leg muscle was so painful and can’t stand for 5 sec , this early morning my arms also started to pain . But then I didn’t take my thyroid tablet and slowly my pain reduced mid day. Like @eeng suggested am not gonna take tablet Tomo and see how I feel . Am gonna book an appointment on Monday for the test , hope they run all the test, I also noted the test I need to ask from the previous replies . Thanks for that ..

Phoenix605 profile image
Phoenix605

You may be reacting to the tablets themselves. I had my brand changed when I didnt know any better and approx three weeks later I started having serious problems with my muscles and joints. I had a drug allergy many years ago where my hands got extremely painful so when it happened this time I recognised it. I immediately got my pills swapped and within 4 days there was a vast improvement.

It is almost certainly not the hormone that is the problem but one or more of the binders and fillers. The only different ingredient I could see in mine was mannitol which does not have this reputation but Im going to carry on avoiding to be safe.

Catseyes235 profile image
Catseyes235

Yes as most have suggested please do get yourself to A&E first and foremost and explain everything to the docs. That is a very low dose to take even at the beginning of treatment and the symptoms sound hypo so probably need an increase in meds. Most start on 25mcg or 50mcg ending up on 100 or more mcg. I hate suggesting medication but on this occasion I'd start with doubling the dose. Good luck with it all!

luv2017 profile image
luv2017 in reply toCatseyes235

Ok thanks for that . Am gonna call GP Tomo and book an appointment.

Catseyes235 profile image
Catseyes235 in reply toluv2017

I would treat as emergency. The longer you go without the right doseage the longer it takes to get back to normal so make sure you are seen tomorrow . .at least a phone consult. Other symptoms if under active are feeling cold hair loss and oedema ( build up of fluid which could explain you legs?) at my worst (I went very under-active due doc missing blood test) I was very tired but could hardly sleep, walk or talk. Have been fine now and on same dose of 150mcg for 30+ years.

luv2017 profile image
luv2017 in reply toCatseyes235

I called 111 yesterday and I was told to take paracetamol. I explained how I am struggling with the Pain but still no use and they disconnected saying it’s not emergency. Let me call GP Tomo and beg again .,thanks for that anyways

cfarris412 profile image
cfarris412

Take one per day preferably in morning by itself and on empty stomach span other meds at least 30 minutes apart. Easy! Been on it since 1993 Hoshimotos Disease.

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