Should I be feeling so unwell after starting Le... - Thyroid UK

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Should I be feeling so unwell after starting Levothyroxine?

LG30 profile image
LG30
11 Replies

I was diagnosed with Hypothyroidism on Monday, I was not feeling unwell I had started with carpel tunnel in my wrist and hand which prompted my GP to do some blood tests. I was started straight away on 50mcg Levothyroxine, however since I started the meds I have been feeling extremely unwell and is affecting my normal daily functions. I feel sick constantly, suffering with stomach cramps, feeling very lethargic, aching all over and keep crying. The symptoms do appear to be symptoms of hypothyroidism but they have only appeared since starting the meds. My GP has reduced the dose to 25mcg and said it may be my body reacting to the dosage and will gradually increase them but I feel no better. Has anyone else had this problem? Im not sure if I should be going back to the GP or leaving it longer for the meds to get into my system.

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11 Replies
PinkNinja profile image
PinkNinja

I'm sorry you are feeling so unwell.

Do you have any allergies or food sensitivities? Sometimes it can be the fillers in a particular brand of levothyroxine that cause the problem. Switching to a different brand sometimes helps. It should tell you the inactive ingredients on the patient information leaflet.

If it is not one of the fillers that's causing the problem, it could be that 50mcg is too much and you may do better with 25mcg, like your GP suggests, until you get used to it. Many people are very sensitive to starting thyroid hormones and have to start very slowly. You may find you even have to start with 25mcg on alternate days.

There are several reasons why people are sensitive to thyroid hormones. It could be that your cortisol levels are very low. This would make it difficult for your body to convert thyroxine to its active form and the build up of thyroxine in your system could be causing your symptoms.

Other possibilities are that your iron, ferritin, vitamin B12, folate or vitamin D levels are low or too low in the normal range. Many people don't feel well until their ferritin is above 70-90 and you should be aiming for a B12 result above 500, not the 180 that the NHS have as the bottom of the range (in other countries it is much higher!) If these levels are too low, your body will have difficulty using the thyroid hormones in your cells so it will build up in your system causing horrible symptoms. Ask your GP if they will do the above tests and see if you can get the actual test results along with reference ranges and your thyroid function test too. Reference ranges are important because they can vary from lab to lab.

I hope this helps and doesn't confuse things too much for you. You might find the main Thyroid UK website useful for information too. thyroiduk.org.uk/tuk/index....

Take care and I hope you start to feel better soon.

Carolyn x

Numberone1 profile image
Numberone1

The short answer is YES. I can remember the first couple of days feeling different and amazing and I thought, WOW, this is how I used to feel once upon a time. After that initial surge of energy, I slipped slowly downhill.

I understand that as soon as your body starts to realise that its getting help, it stops producing whatever it was struggling to produce and basically gives up. Therefore, you feel more hypothyroid than you did in the first place. That is the reason why the GP should be doing blood tests every few weeks until you get to the right figure.

Be warned though, what happened to me was that I kept feeling ill, the doctor, upon my suggestion, decided I couldn't keep taking different brands and changed my presciption to Eltroxin only, which I believe is the best synthetic brand.

From that first couple of days, my main problem was pain in my feet. I had never had it before taking the taking the thyroxine although my GP said it had nothing to do with that. Although the Eltroxin was better, I still had the problem but I felt better in myself.

Then the pain moved to my knees and legs, I could hardly walk and I somehow knew it was all connected. I decided to take further action by myself and found that I wasn't converting the Thyroxine properly and was infact allergic to the fillers also.

Make sure you read everything (you will start to know more than your GP as they dont get much training in thyroid issues) and guide them to the right solution.

Hopefully, once youre on the right dose you wont have some of the problems everyone else seems to on here. You will find the support amazing though.

Good luck and I hope you feel better/

PinkNinja profile image
PinkNinja in reply to Numberone1

My symptoms started with pain in my feet with levothyroxine and then moved to all my joints. I wish I'd known about this forum then. I could have saved myself years of pain, fatigue and frustration! I don't convert thyroxine either and the joint pain (which my GP thought might be RA because it was so severe) eased up within a couple of days of stopping levo. I believe my problem is also a conversion problem, probably partly due to my permanently low TSH (it doesn't go up even when T4 is low). It's really interesting that you had the same symptoms.

PinkNinja profile image
PinkNinja

Although Numberone1 and I didn't do well on levothyroxine, many people do very well on it, but it is worth noting that there are alternatives if you prove to be one of those who don't do well with it :)

LG30 profile image
LG30

I have been back to my GP and they dont seem too worried about my symptoms and said my body will come adjusted to meds eventually. I am feeling very upset about it all now, I am still feeling very unwell despite reducing the medication and dont know what to do. They have done a thourough examination to make sure the symptoms are not being caused by anything else but dont feel the need to redo any blood tests. I did start to feel as though my apetite was increasing during the week but my stomach cramps and diarrhoea seemed to get worse and I've had a migraine for 4 days. I feel very really upset that I feel so unwell as I am not used to being so debilitated, i work weekends and I go to university 5 days a week so I'm used to rushing around, so this has set me back. I did ask my GP about other medication or alternatives and she said she wasnt aware of any other brands. Should I be seeing another GP or asking to be reffered to someone who does know?

bluedeb profile image
bluedeb

Hi I started tablets nearly 2 week ago same symptoms I have been put on 50 for first 9 days felt crap aching all over so I have been going to steam room and drinking loads of water cut bread out of diet and these past few days starting to feel back to normal still my hands are hurting a bit on a morning but nothing like they was I have been having pain for 14 months and only just found out I have hypothyroidism. I have to go back in 6 weeks for bloods doing I was going to stop taken them first week thought they was making me worse hang in there

pwillie13 profile image
pwillie13

YES!!! I feel sick to my stomach all the time, light headed and over the top moody!! According to the doctor it is not the medicine but I did not feel this way before I started Levothyroxine. So incredibly frustrating. Was put on this for severe fatigued and for the first month it seemed to help in the morning but now I feel worse than ever!!!

Sthornl profile image
Sthornl in reply to pwillie13

Did you ever find out what the problem was? I'm having the same problem and I feel horrible. I felt great the first week then worse so we went up I felt better for 2 weeks and now worse than ever. I'm so neasous all the time, with a headache and I pour sweat. It's now to the point that since my job is physical I can't work anymore

Ari3 profile image
Ari3

Yes same here-iam still struggling severe joint muscle pain everywhere in body tried to change different brands doesn’t help at all.I am definitely allergic to it .Besides severe joint and muscle pain I have shortness of breath which I recently developed and really bad stomach pain :( I am only 31 and before I started Levothyroxine I never every suffered with so many pains in my life.My gp can’t offer me anything else as they think that Levothyroxine is the best medication.I am with my private endo and will see him on 7th March I don’t know what to do now.Me and my husband are thinking to try Thiroyd which is t4 and t3 .meanwhike I think I will reduce to 25 a day.i still have ringing in ears and some of the hypo symptoms but these things I mentioned above is nothing to do with hypo they started expecially joint and muscle pain and progressed when started Levothyroxine.I feel so awful I have lost my job because of this.I am at home most times I can’t enjoy my life I just hate myself so much :( and I want kids.Should I start Thiroyd and see how it goes? Crazy! 5 months of madness and loss from a Levothyroxine

That's the same as me

Please let me know what you did and how you are now? I'm desperate

weazle74 profile image
weazle74

yes i am having same promplem started thyroxin 25 and for ten days i was so ill i couldent do anything so i stoped now i started again on 50 and i am so unwell choking crying anxiety to extreme depresion stomach pains forgefull so dont know i am thinking of stopping again i am worse with medication and so confused i dont know could be alergy? i live in cyprus and the only tablet is thyroxin no other choice

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