Hey everyone, I am laying here at 4 in the morning in agony with pain in my buttock/ hip area and arms. I have been taking levo 100mg for 6 weeks and after bloods showing tsh of 14 the dosage was increased to 150. I am now on week 3 Of the new dosage but really suffering with painful acheing joints. Has anybody else had this pain and would it be to do with the meds? Really struggling at the moment and any advice would be helpful. Had a thyroidectomy in may as I had thyroid cancer and I'm 44 years old. Before this I was fit and active and now acheing tired and feeling depressed. Just want my active life back with my family and to be able to sleep
Sam x
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Samwithey31
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Welcome to our forum, and first of all I am so sorry you are suffering so much. Pain when not on sufficient hormones (which have to be gradually increased about every six weeks until on optimum) is common.
We are stunned to be taking a hormone to replace ones a healthy gland would have produced and have such pain.
The fact that you have had a thyroidectomy I really do not know why they do not give a combination dose, i.e. T4 with T3.
I would ask your GP to test both Free T4 and Free T3 and many will not do this test. If you can afford a private test I'll give a link instead.
I think probably that you aren't converting T4 to T3 as you've recently begun replacement hormones. T4 is inactive and should convert to T3 and T3 is the only hormone that is required in our receptor cells. We cannot rush hormone replacement but I think they could try adding some T3 to your dose of T4.
Blue Horizon and Medichecks do home tests (pin pricks).
Blood tests should be taken at the very earliest, fasting (you can drink water) and if taking thyroid hormone replacements a gap of 24 hours should elapse between last dose and test and take it afterwards. This helps keep the TSH at its highest as that seems to be the only result doctors look at - it is from the pituitary gland.
Always get a print-out of your results with the ranges for your own records and post if you have a query.
p.s. I am not medically qualified and have hypothyroidism which was undiagnosed.
Thank you for coming back to me. I am with private doctors through insurance at work and my last blood results which was approx 3.5 weeks ago were::
Ft4 - 14.5
Ft3 - 2.92
Tsh- 14.32
So doctor has increased my dose to 150 per day which I normally take in morning around 6 am then wait until 8 until I can have my white coffee. But someone suggested taking at night instead. Last night I took 100 tablet at midnight as I didn't want to overdose in a 24 hour period and 2 hours later woke with acheing which was a lot worse than I had already been feeling. Is the acheing from being under active or because my body is reacting to the levo? Finding this soo frustrating 😢😢😢 I didn't think t3 was being prescribed anymore? X
I'm sorry you felt worse with night dose but try it tonight as many prefer bedtime dosing. You have to remember to have an empty stomach, though, so you should have last eaten about 3 hours previously particularly if you'd eaten protein which takes longer to digest. As we are hypo our digestion has usually slowed too along with pulse/temp.
Pains/aches can be due to hypo to and I'll give you a list and I think you'll have more than a few.
T3 can be prescribed if the patient has a clinical need. Research has also shown that most feel better with a combination than levo only. Many, mind you, seem to do o.k. on an optimum dose of levo.
Hi there and really sorry to hear that you have had such a rough and horrible time. I am no expert but from living on Levothyroxine for 2 years (current dose 150 mug) and following all relative posts over the past few months - on this great informative and helpful site, I concluded that Levo is causing the back pain and muscle joints that I currently suffer. (last night in agony again with lower back pain and therefore very little and spasmodic sleep ....again). It might be that your pain is possibly a side effect from the Levo? so you might not be suited to it? check this site for relevant posts by many others with similar issues and you'll be amazed and somewhat relieved to see you are not the only one to suffer this and that there is a possible solution with an alternative drug...however...........that's another journey for you and one that I happen to be currently on at this moment. My advice is to take matters into your own hands and do everything you can to help yourself! (because however nice the GP may seem....it is apparent that they only pay lip service to our situation). I have my own bible on the subject now - written by the acclaimed Dr Durrant-Peatfield who completely understands the thyroid issue and the scandal surrounding the tests and subsequent medication for it. I take it everywhere with me and read it whenever I have free time. Its comforting to know that a qualified physician has taken the time to understand, respect and support the thyroid patients with their problems. Hope you manage to sort your pain out soon. Best wishes, Shon
This book has become my bible...you can purchase it on Amazon - "The great Thyroid Scandal and how to survive it", by Dr Durrant Peatfield. If you do one kind thing for yourself today...buying this book will be it... It has transformed my understanding of the thyroid issues..I now full understand the hormone issues and how T4 gets converted to T3 and the problems associated with it...I also now truly appreciate the difficulties we face trying to get the proper medication from the NHS but above all....I value the power this book has given me to take the matter into my own hands and help myself. It is reassuring to know that a qualified physician advocates NDT - especially when the modern GP tell me it is dangerous!! what a load of crap that was! Buy the Book.....you won't regret it..
I take 150mcg Levo daily....it sorts out the body temperature thing but that's all it really seems to do... That why I have now taken the route of self medicating with NDT - my consignment (one bottle !!) arrives in August....cant wait.
Samwithey31... NDT stands for 'natural desiccated thyroid'. It is a standardized dose of pig thyroid requiring a prescription. Our thyroid gland makes at least 5 different hormones (and maybe more... they aren't sure) and the porcine (pig) product most closely matches what our own thyroid gland produces.
Most synthetic thyroid hormones consist of the T 4 hormone and the medical establishment assumes that our liver will convert the T 4 to the T 3 hormone which is a short-lived but the most active thyroid hormone.
A lot of folks do just fine with the synthetic T 4 (such as Synthroid) and their livers do the conversion of T 4 to T 3. My sis is one who is very happy with her levo (levothyroxine... generic for Synthroid). Others, like myself, never do the conversion of T 4 to T 3 so... we require a whole glandular thyroid replacement medication ... NDT... such as Armour, WP, Naturethroid etc.
I was started off on Synthroid years ago and even tho my blood work was 'normal', I was suffering with depression, brain fog, horrendous body aches (especially hips/thighs), profound fatigue and short term memory problems. After a year, I was finally prescribed NDT and the turn-around was spectacular.. I was bouncing off the walls in pure joy after a week or two on NDT.
Omg, your symptoms pre ndt sounds exactly like mine! Only been taking levo for 9 weeks but no improvement at all. Seeing doctor in two weeks time for blood tests etc so will have a chat with him. Thank you for your response x
in my opinion it is is really important that you let your GP know that you think you are either not suited to Levo? or that your T4 may not be converting properly (get the book and read how it all works -T4 to T3 - so that you know what you are talking about).
This is important because whilst he may not be able or willing to help you...what will happen is that at his next medical converence, he will mention it to someone. Other GP's will also mention that they have patients who are complaining of the same thing...the big guys will see that there is a pattern forming...this may all help in the fight to get T3 recognised as the valuable hormone requirement it is for thyroid sufferers.
I am in the states. My doc was a sweety. He admitted that only a few of his older female patients were still taking NDT and they refused to switch over to Synthroid but he was willing to work with me since Synthroid wasn't doing the trick and I seemed to be getting worse.
It's a good idea to get your B12, ferritin, folate and VitD levels tested too. If we have thyroid problems it can be the case that these are low too.
When B12 is very low we get pain in the muscles and other symptoms similar to underactive thyroid. Low VitD also causes aches and pains..
If you get theses blood tests done always put the ranges alongside the results on here. Different labs use different ranges. The same with your thyroid results.
Hoping you will feel better soon.
MariLiz
Hi I had my thyroid out in Oct 2015. Before that I was not on any medication, and practised yoga and walked miles every week.
I was put on Levo and after 6 months of different doses I was in agony with joint pain, I had to be lifted up off the floor at one stage I couldn't get up.
I then joined this site and switched myself to NDT all of the aches and pains have gone and I have got my life back. I have been on it for one year now.
NDT is mostly taken instead of thyroxine, although a few people do find that adding a small dose of NDT alongside their thyroxine works for them. It's all very much a case of trial and error to find what works for you.
There are several different brands of NDT. Some people are fortunate and get it prescribed, and will therefore be obtaining it through a pharmacist. Others denied it on prescription, end up buying it themselves from abroad. Where they buy it will depend on the brand they have chosen to use.
Sources for buying your own NDT are not permitted to be posted on the forum, so anyone offering this information should do so by PM (private message).
Hi I buy my Thyroid s from Thailand. I completely replaced by stopping Levo and taking the NDT the next as I read on this site. I started with 1/2 a grain and gradually increased every 10/14 days now I am 2.5 grains per day.
Sorry to hear your feeling this way.I am 41 years old and have suffered an underactive thyroid for over 17 years. I take 250 mcgs a day. I have always felt sore, sluggish and slightly depressed, it's a daily battle to get through the day mentally and physically. It's something that we need to live with infortunatley. It affects the whole system. I try to get away from daily life as much as i can and if not i try to meditate. Hope this helps in any way even if it assures u that you are not alone.. love and best wishies.. Julie
Is levothyroxine brand or generic? I was taking Synthroid and was HORRIBLE I switched to generic and felt much better. Then doctor decided I needed to take name brand put me on Levoxyl 125mg and I'm so so still have some joint pain, I too had thyroidrctomy because of cancer. The doctor said no generics with cancer. They gave been wanting,me to take Tirosint it is pure maybe try that drug just go lower on dose to start. Example take 150mg try 125mg in Tirosint it is potent
Ouch sounds awful. The way to be sure if it's the levo dose increase is to drop it back down for a few days and see what happens. In my experience (awful on very low doses of levo) the side effects went pretty quickly. If you drop the dose and get rid of the aches you will know you aren't tolerating that level of levo. As others have posted, levo isn't the wonder drug for everyone. Or It may be you can only tolerate a lower level of levo irrespective what your blood test shows. What I didnt understand from your original post was whether you felt bad or whether it was purely the blood test that drove the higher dose. If you felt ok then I would take the lower dose and ignore the blood test result. To answer you question about aches and pains - yes I had those on levo until I reduced it to a very very low dose (25 mcg). Hope you find a resolution.
Without a thyroid gland in the UK you are likely to feel ill for as long as you live as the only medication you're going to get is levothyroxine. All that will do is keep you alive, you need more to get you well again. Until recently that was T3/Liothyronine, but that is being withdrawn from use for all new patients solely because the price of it has increased beyond reason.
You can ask your GP/endocrinologist for a lifelong supply if you wish, but there is a different solution if you want to retain your sanity which is to either buy your own Liothyronine from abroad to supplement the T4/levothyroxine you now take OR to buy your own NDT from abroad and substitute that for the T4. You would stand more chance of finding a plentiful supply rocking horse poo than getting NDT from the NHS.
In the same state of health as you, I took levo for 8 years then started on NDT/Thyroid-S brand and will NEVER EVER move back to levo, even if supplemented with T3, which I consider to be poisonous to me.
I started on Thyroid-s, now taking Thiroyd. Forced to purchase myself, firstly from Amazon, then from Ebay. You can no longer buy from these 2 places.
NDT was the medicine of choice for many decades until the synthetic equivalents were invented by the Devil, which makes life much easier for the doctors who can now diagnose by blood test result rather than by symptoms. For many of their patients it is, however, a far more harrowing change.
SamWithey, when you changed to 150mcg, was it the same brand of Levo?
I went through a very similar experience. After my total thyroidectomy I was put on Forest Pharma's Levothyroxine (after an initial 2-3 months on cytomel, pure T3). I did fine on that Levo for years until Forest went under and I had to take a different brand. Then my troubles started! All the things you describe I suffered. I moved from brand to brand, the cheap and the expensive (since my Endo didn't know any other criteria!). I finally found a doc who would prescribe NDT Armour and that is what I am on to this day and doing great. You can switch around brands of Levo if you wish but they are 3 month long trials (if you throw dosage into the mix). I would advise you to get on one of the NDT's that can be bought from abroad or beg your doc to prescribe NDT - or keep switching docs until you find an informed one. You could also try mixing in T3 as suggested above.
BTW if you are new to this don't be shy to fire/change your doc or Endo even multiple times (I'm now happily on my fourth), and don't think you are silly to drive hundreds of miles to get the right medication, my doc is a 400 mile round trip but I only have to do it a couple of times a year mostly for blood tests - which I only do to oblige him since he only does TSH and T4 (usually), and to pick up my prescription. You have to think outside the box to survive this mess, but it can be done.
Thank you for your response and glad that you have managed to get your balance correct and living a normal life. I have already ordered some tiromel and will be speaking to my endo to discuss in a couple of weeks time to try a low dose. Same brand of levo. I will be fighting to get well as I love my busy life pre: thyroidectomy and I'm desperate to get it back!! Xx
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