Diagnosed hypo on 20 May this year with TSH of 4.24 (0.22-4.20)
And over range TGO antibodies at 180 (<115)
My main symptom is muscle aches, especially of the vastus medialis - I am a keen cyclist.
Private endo started me on 50 Levo, which I took for 5 weeks, but stopped because my muscles got worse.
Then had a break for 2 weeks and then took 1/2 grain NDT for the next 3 weeks.
Stopped again, as once more, the muscles were worse.
Not sure why as TSH now at 2.70 (0.22-4.20) and antibodies 274 <115
Then took a break for a week and restarted 50 Levo, but after 4 weeks stopped again for the same reason.
I would have gladly kept on taking the meds , and then tested and increased dose at the 6 week mark, if the muscles didn't get worse. But they didn't, so I stopped.
Then tried 1 capsule of Immu Plus by Vega Vero, which is supposed to help the immune system, on 30 September, but by the same evening the medialis was much worse!
Then took just 1/2 NDT on 7 October and after just 6 HOURS! the medialis was so much worse. This surprised me.
Then this Monday 14 October tried 50 Levo, and again, after about 6 HOURS!, I felt so much worse.
Not sure what is going on! Seems I can't tolerate even a small dose of Thyroid meds any more.
Any ideas why I only very gradually got worse with Levo/NDT a few months ago but now get worse after just 6 hours?
Maybe it's not thyroid problem that's giving you muscle ache but low vitamin D, ferritin, B12 or folate which are all common deficiencies in people with autoimmune thyroid antibodies. Have you had vitamins levels tested?
I don't think you should try to cycle until you are fully medicated and your TSH, T4 and T3 are in range. A lot of people feel better when their TSH is about 1 and their T4 and T3 is in the upper third of the range. Having said that everyone is different and I feel well when my TSH is 0.70. You need to not push your body too much because your metabolism isn't working properly and you might actually collapse. I am not trying to alarm you but I went to a wedding in July of this year and over did it by dancing and drinking a few wines etc. The Sunday after the wedding my husband was driving us home when I became very ill and was admitted to hospital with a suspected heart attack it was infact a thyroid storm. I don't think for one minute you will have one because you have an under active thryoid but you could make yourself ill by trying to exercise when your body is not working properly. Good luck.
I often scribble notes in various places when I read something of interest ( to me ! ) In my address book ( I must have been away ! ) there is the following - B12 involved in the conversion of ATP to ADP affecting muscles. Could this be a lead ?
From my own experience with Addison's low cortisol issues - muscle aches and pains particularly in the thighs and front of legs (shinsplints) is a sign the adrenal glands are under pressure to perform as the increase in your metabolism takes place.
I am experiencing the same thing - muscle aches in the thighs and MRI diagnosed shin splints/stage 1 stress reactions in both legs, although the right leg is much more painful. I do not exercise nor am I athletic, so there is no reason why I would have shin splints and I keep telling my doctors the thyroid meds are causing them. I am on week 2 of NDT starter dose. Synthetic thyroid meds made this much worse. Adrenals and cortisol and ACTH have been tested inside out and upside down and always come back fine via CT scan, labs, saliva, and Addison’s and Cushings tests. Do you have any suggestions on how to help this? I read elsewhere that someone suggested taking creatine supplements to help rebuild muscles, but would love a suggestion from the adrenal point of view. Thank you so much!
Hi there sorry you are suffering so - it is so painful - I know ....... no no no to creatine - as a kidney patient as well as everything else this supplement could damage your kidneys or at least make things worse. Vitamin C is needed by the adrenal glands - in fact the largest amount of Vitamin C is within the adrenal gland process. I would suggest you take 1,000 mg but not all at once - I now use the Holland & Barrett ones - I used to take the professional Vitamin C but it was a bit too strong for my kidneys - so now I drip feed 250 mg - it is in an orange bottle C-250 mg with rose hips - it isn't that expensive either. If you can take up to 4 a day - it will help your stomach too.
Also try to buy some Magnesium oil - this you can get online from Better You - I would get the one for sensitive skin and only the original one not the new ones with all the different additions - not necessary in my view.
Rub the magnesium oil on the areas that are paining you - follow instructions as to how much and be careful it can be a bit messy for your clothing. Then the other thing that will amaze is apples - they are amazing for the adrenals - eat a couple a day.
FYI often the pain you are experiencing is adrenaline running through the muscles because the adrenals are under pressure and don't have enough cortisol so you will run on adrenaline instead - going for nice walks will help get the adrenaline out of the muscles so the pain should diminish - if it doesn't then there is another reason relating to the adrenals which is the opposite of this.
Taking a Vitamin B complex supplement will also help - if you are taking statins - they stop cholesterol being produced and cholesterol is actually needed by the adrenal glands to make cortisol - but I cannot say to you that you shouldn't take them - just saying for information.
Thank you so so much for your tips and suggestions. I find them to be very valuable. The link you posted was amazing and described exactly what I’m dealing with. I feel like printing it out and taking it back to every single doctor who has turned me away the last 19 months of dealing with this. My adrenaline/adrenal issues began after I suddenly lost my mom, so I believe the extreme stress burned out the adrenals, but of course the doctors say it is impossible. All along I knew the muscle pain and shin splints were part of the equation though.
Walking, swimming, etc does help the muscle pain, so it makes sense that it is pushing the adrenaline out. If I sit like I do in work all day, the leg muscles and pain are so much worse. I do not take statins thankfully, so I don’t need to worry about that.
I am going to look into purchasing what you recommended as far as the Vitamin C and Magnesium Oil. And I can definitely eat apples. It was once suggested to me that taking a methylated form of Vitamin B complex was also good for the adrenals. Do you have thoughts on that? A few weeks back I was started on propranolol to help with the excess adrenaline and it made a big difference with my ability to tolerate the thyroid medicine better but hasn’t helped the leg pain, muscle pain, and shin splints. I so very much appreciated your help!!! Thank you!
Hi there glad to help - yes methyl B is fine but make sure they haven't put loads of extras in like they are doing lately - i.e. B vitamins plus ??????? it makes me so cross - because this could cause more issues for an adrenal person. Good luck and so hope you feel better soon.
I had severe muscle pain and weakness in my legs and arms right after taking my daily dose of Levothyroxine 112mcg for years. It was so bad I could barely walk at times. I just started taking 5grams of Creatine Monohydrate daily about an hour and a half after I take the Levothyroxine dose. I have noticed a significant difference in just two weeks of taking it. It is helping me with muscle pain and weakness. Just make sure you educate yourself about it and let your doctor know you are taking it. You have to drink lots of water with it. I found out about it by finding this article:
Oh my gosh, thanks for your reply! That’s the exact same article that was referred to me before. I’m so glad to hear the creatine seems to be helping you. I see my doctor in two weeks and I’m going to inquire about this as well. No doctor ever seems to believe the thyroid medicine is causing these muscle pains, but I know you understand. It most certainly is causing these pains! I just had a creatine kinase blood test and my number was towards the low end of the range. I wonder if that plays a role in it. I clearly have room to improve to at least even get mid range. Have you ever had your creatine levels tested?
No, never had my levels tested but I am going to ask to have it checked at my 3 month check up. All I know is that it is helping a lot. None of my doctors have ever believed my muscle pain and weakness is caused by Levothyroxine. I have had every neuro test, MRI ,etc under the sun and nothing is wrong with me except that I have had Hashimoto's hypothyroidism for 20 years and have been on Levothyroxine the whole time. It's actually the only medicine I take and when I skip it for a few days I feel great and have no muscle pain or weakness, which is why I know that is what is causing it. I recently found out my hormones are off as well and I have adrenal fatigue. I know adrenal problems can cause this too. I have low cortisol, low estrogen, low progesterone, and high DHEA. I had low vitamin D and B12 but am supplementing and bringing my levels up. I am in the United States in the state of Oregon. It has taken me two years of being so miserable I can't function to finally find a good clinic where they tested the whole picture (thyroid, sex hormones, and adrenals.) I am taking herbal vitamin supplements made by them to balance adrenals and I am on Progesterone cream. It's been two weeks and I feel so much better already. Hope you find some luck with it.
I’m in the United States too (Florida) and have been all over the country searching for answers too. I’ve even been to the Mayo Clinic and Cleveland Clinic and have been told repeatedly it can not be from the meds, but like you, it gets better when I don’t take them. I’ve had all of the tests, scans, etc and have been very ill. Even a functional medicine/hormone doctor basically turned me away. I’ve known in my gut all along it’s adrenal fatigue but good luck getting help with that 😩 please keep in touch and let me know how things continue with the creatine.
Very interesting article, thanks for posting. How did you decide the dose of Creatine Monohydrate? 5grams sounds a lot but I know nothing about this sort of thing!
It's actually a very low dose. Body-builders sometimes take up to 20grams a day. It is usually made with powder into smoothies but I am taking capsules. I came up with the 5grams because in the article the guy took 5grams for a year and then dropped down to 2 grams after that.
With thyroid issues, when we take replacement thyroid hormones, these don't "top up" our own body's hormones.....but because TSH drops, they replace them
So when first start on low starter dose, this can result in actually having less thyroid hormones than before......until dose is slowly increased.....
For example....if on average you need equivalent of 150mcg per day when well......as your thyroid starts to pack up ......you might get diagnosed when your own thyroid output has dropped to around 100mcg
If you start on Levothyroxine....initially you have your own 100mcg plus the 50mcg starter dose of Levothyroxine and you feel good....but over next few weeks slowly TSH drops (as pituitary senses the Levothyroxine replacement dose) .....so after a few weeks .....your FT4 and especially FT3 may drop lower than when you started .....i.e. Ready for blood test and next 25mcg dose increase in Levothyroxine
This scenario can repeat at each dose increase, until on correct dose. That's usually somewhere between 100mcg and 200mcg
If taking any medication that includes T3, (e.g. Any NDT) then TSH drops rapidly even if not on anywhere near high enough dose. That's why generally we need to get Levothyroxine dose high enough, BEFORE considering adding any T3. Or if trying NDT the dose has to step up quicker.
It isn't until on high enough dose Levothyroxine that you can see wether you are good converter of FT4 to FT3.
Early on, on low dose Levothyroxine, FT3 will be often low because FT4 is inadequate, not necessarily due to poor conversion.
Low FT3 can cause tight muscles
Generally people who have high TSH at diagnosis seem to establish correct dose Levothyroxine quicker than those of us whose TSH wasn't very high. TSH can be not very responsive in many people
Your TSH was barely above range
Important to regularly retest vitamin D, folate, ferritin and B12. Maintaining optimal vitamin levels helps symptoms.
Reducing or stopping replacement thyroid hormones often results in low vitamin levels
Oh yes everything has been checked inside out and upside down over and over again for the last 19/20 months. It’s definitely adrenal related. So far just a little bit of NDT and propranolol seems to be helping. I’m hypersensitive to all meds now so it’s making it really tough.
I'm so sorry your having to experience muscle pain . It can be very debilitating . I would suggest to have your vitamin "D" levels checked , B12/folate , magnesium, minerals, Iron/ferritin, electrolytes. You might want to add some Celtic Sea Salt into your sports drink.
I’m a cyclist too. I was training for a competitive event and I thought the muscle pain was due to that. I became concerned when I pretty much wasn’t able to turn the pedals!! After two increases in Levothyroxine the pain is much reduced and whilst still slightly there I can now cycle again.
My advice is:
Stick with the medication.
Get the blood tests.
Increase according to the advice on here.
Take it easy on the exercise.
Be kind to yourself
Hot Epsom salts baths ease the muscle pain.
Having just come through what your describing i can tell you it does get better, we just have to go through a slow process to get there.
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Can you swing from Hypo to Hyper and when you do, can continuing with Thyroid meds actually make your symptoms worse?
Symptoms worsening toward next levothyroxine increase?
