Levo and muscle pain/ache

[Ari3]

Have started Levo 11 days on 25mcg and following 50mcg by my gp till they sort my nhs endo appoitment (2 months to wait) .I am Hypo.Why when I always start Levo after one or two weeks my back is in pain is starting to acnhe muscles up and down on my back shoulders are burning and arms in pain .The pain and muscles iare getting more painful more and more this is my second attempt to start Levo .Why is this ? Before i started Levo I never ever had such pain once I just started medication the pain is getting more .Any ideas?

[Nanaedake]

Sometimes it just takes time for the body to adjust to levothyrxoine but have you had your vitamin D, folate, ferritin and B12 levels tested? I've read quite a few other people on this forum had the same/similar problem when starting levothyroxine. When they get vitamin levels checked they are low. GP often tells them all is fine but when they post them here we can see they are too low. Starting levothyroxine seems to unmask these deficiencies.

If you'd like to post your latest thyroid test results, vitamins, thyroid antibodies and say what dose of levothyroxine you're on and what other medication you're taking then people may be able to give you sensible suggestions and help you work out what's going on.

[shaws Administrator]

I cannot give you an answer but it also happened to me when on levo. My body was practically immovable as every movement caused muscle pain and discomfort. Even to step onto a pavement was very painful.

25mcg is a low starting dose but I see they've raised it to 50mcg . I am not medically qualified but it could be that your dose isn't yet sufficient to convert levothyroxine (T4) into T3. You should be given an increase every six weeks.

However, when your next blood test is due (it has to be at the very earliest, fasting (you can drink water) and allow a gap of 24 hours between last dose of levo and test and take it afterwards. This keeps your TSH at its highest. Ask also if you can get a Free T4 and Free T3 blood test which will show whether or not you are converting T4 into sufficient T3. T3 is the only active thyroid hormone required in all of our receptor cells.

Also ask GP to test B12, Vit D, iron, ferritin and folate as everything has to be optimal.

Always get a print-out of your results, with the ranges, for your own records and you can post for comments.

[Ari3 in reply to shaws]

Thank you iam having an appointment this Thursday and I will post my results in here .i won’t have folate and free t3 results this time but next time I will ask them to do .all the others will be done and hopefully I can post results.How long did your body adjust to Levothyroxine!?how long did u have muscle aches?is this normal? Will it go away once found the right dose? Iam so scared as last time when they tried to put me on 50mcg I had huge pain all over my body specially leg muscles I couldn’t even bend down.The pain was unbearable so I needed up by having palpitations and in hospital my heart rate was 123bpm even after three hours of wait .They checked my bloods it showed overdosed in four to five weeks time only .

[shaws Administrator in reply to Ari3]

Next time you are to take levothyroxine, try taking an anti-histamine tablet 1 hour before you take levo. If it helps the pain, it could be you have a sensitivity to something in levothyroxine, i.e. fillers/binders.

I also had severe palps and had to call the ambulance a number of times. My heart would go of at any time of day/night - it is scary.

When the Endo added some T3 to T4 I felt much better and an improvement.

It took a number of years to find the thyroid hormone which made me feel well but we are all different and what suits one person doesn't always suit another.

I am not medically qualified but if your bloods showed 'overdosed' after only 50mcg of levo, maybe your body isn't converting T4 (levothyroxine) which is inactive hormone, into T3 (liothyronine) which is the only active thyroid hormone.

[Ari3 in reply to shaws]

Will do definitely-thanks for suggestion.

My endo appointment is on 21st March so I am on 50mcg now .Even my gp asked me on what dose I want to be that insane!!!!!!!do nhs endo can give any alternative medication or add t3? Do nhs endo also check all your bloods like if u convert or not? I hope he is much better than just gp who only gives Levothyroxine and that is it just simple tsh and free t4 checks.Hiw can I plan for family now?I really want kids as the age is going.

[shaws Administrator in reply to Ari3]

We used to get T3 added to T4 and some people can only take T3. Due to the pharmaceutical company getting very greedy and the cost of T3 went from about £30 per month to £600+ they've removed it from being prescribed.

We also used to get prescribed the original thyroid hormone replacements which first were used in 1892, before that people just died a horrible death.

So worldwide since 1892 NDT was given to patients who were hypothyroid. Made from pigs' thyroid glands and contains T4, T3, T2, T1 and calcitonin this was also withdrawn due to wrong statements made by the BTA and also increasing the profits for T4. The following link was by an Adviser to Thyroiduk.org.uk and despite three yearly reminders for a response, they never did and Dr Lowe died through an accident.

thyroidscience.com/Criticis...

[Ari3 in reply to shaws]

So it means nhs endo is waste of time and I should wait now for him two months while self medicating.I don’t want to lose my job and I want family asap.I have suffered from this since August and nobody seams to find the right dose .I end up with eighter hypo or hyper .I also when start a Levothyroxine once dose is increased on 50mcg my body is just painful all over as I can’t cost anymore this is also not life .I will end up again having palpitations and nowhere.I have decided I will do bloods every four two weeks and see how things change.It seams I will not go nowhere .I had private endo but he took me off from levo and said I have thyroiditis (my tpo was 344) antibodies and he said we will monitor you.While he went on his holiday my health deteriorated significantly so quickly .my endo was on holidays so I decided to not to continue with him as he didn’t treat my condition but treated me with hormonal imbalance.but I think thyroid is primar thing in body which needs attention in order for everything to work properly or iam missing something .

[Ari3 in reply to shaws]

So how to find a good private endo who would prescribe t3 if needed and ndt? Iam in Staffordshire but willing to travel .can u suggest anyone who is normal?