I have been taking levothyroxine for 15 years but have just gone through menopause and have severe joint/muscle pain. It ruins my sleep, my face feels puffy and I am so depressed. Has anyone else experienced this? Does anyone have any advice perhaps?
Levothyroxine, menopause and chronic joint/musc... - Thyroid UK
Levothyroxine, menopause and chronic joint/muscle pain
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UKGirl1966
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SlowDragonAdministrator
Welcome to the forum
Do you always get same brand of levothyroxine?
What vitamin supplements are you currently taking?
Are you on any HRT ?
It’s very common for levels to go a bit haywire after/during menopause
For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also EXTREMELY important to test vitamin D, folate, ferritin and B12
Low vitamin levels are extremely common, especially if you have autoimmune thyroid disease (Hashimoto's) diagnosed by raised Thyroid antibodies
Ask GP to test vitamin levels
Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .
Last dose of Levothyroxine 24 hours prior to blood test. (taking delayed dose immediately after blood draw).
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)
Is this how you do your tests?
Private tests are available as NHS currently rarely tests Ft3 or thyroid antibodies or all relevant vitamins
List of private testing options
thyroiduk.org/getting-a-dia...
Medichecks Thyroid plus vitamins including folate (private blood draw required)
medichecks.com/products/thy...
Thriva Thyroid plus antibodies and vitamins By DIY fingerpick test
Thriva also offer just vitamin testing
Blue Horizon Thyroid Premium Gold includes antibodies, cortisol and vitamins by DIY fingerprick test
bluehorizonbloodtests.co.uk...
If you can get GP to test vitamins and antibodies then cheapest option for just TSH, FT4 and FT3
£29 (via NHS private service ) and 10% off if go on thyroid uk for code
thyroiduk.org/getting-a-dia...
monitormyhealth.org.uk/thyr...
Joint pain is often linked to low vitamin D
Hi SlowDragon,
I changed brands a couple of years ago. Is this sometimes a problem?
I take B12, Selenium, pre and probiotics, Vit D, Osteocare, Magnesium and Turmeric supplements.
I started HRT but came off it after a couple of months due to the cancer scare. That was over a year ago now.
I have never been asked not to eat or drink before panel testing or to leave 24 hours between taking levothyroxine. Thank you for the heads-up on that.
This aching is a nightmare. I find it difficult to even stretch as my muscles seem very tight and limit my movement and the pain can be really sharp. It also seems to make the pain worse. No sleep is the worst as the extreme aching starts a couple of hours after lying down. I'm lucky if I get 5 hours a night all in all.
Have you tried dropping the probiotics to see if it is that causing the ac hing.
Levothyroxine is Ft4 and needs to convert into Ft3 before we can us it
Good vitamin levels are needed for good conversion
Tight muscles and poor sleep often linked to low ft3
First step is to get full thyroid and vitamin testing
How much levothyroxine are you currently taking?
Which brand of levothyroxine are you currently taking
Which brand were you on before?
Any magnesium or calcium must be minimum of four hours away from levothyroxine
Why are you taking calcium?
Have you actually been tested. Are you vegan?
If eating dairy you may not need extra calcium
Hi, I have always taken 50mcg. I was taking Actavis but am now on Euthyrox.
I am taking calcium as Im going through menopause and am worried about osteoporosis. I do always take magnesium and calcium over 4 hours from my levothyroxine.
I know that my last Free T3 test was 4.1 which is low.
I will have a new panel done with vitamin counts.
Thanks for your help and advice.
50mcg levothyroxine is only a starter dose
You are likely very under medicated
Dose levothyroxine should be increased slowly upwards in 25mcg steps until Ft4 is in top third of range and Ft3 at least 60% through range
Bloods should be retested 6-8 weeks after each dose increase
guidelines on dose levothyroxine by weight
Even if we don’t start on full replacement dose, most people need to increase levothyroxine dose slowly upwards in 25mcg steps (retesting 6-8 weeks after each increase) until on full replacement dose
NICE guidelines on full replacement dose
nice.org.uk/guidance/ng145/...
1.3.6
Consider starting levothyroxine at a dosage of 1.6 micrograms per kilogram of body weight per day (rounded to the nearest 25 micrograms) for adults under 65 with primary hypothyroidism and no history of cardiovascular disease.
gp-update.co.uk/Latest-Upda...
Traditionally we have tended to start patients on a low dose of levothyroxine and titrate it up over a period of months. RCT evidence suggests that for the majority of patients this is not necessary and may waste resources.
For patients aged >60y or with ischaemic heart disease, start levothyroxine at 25–50μg daily and titrate up every 3 to 6 weeks as tolerated.
For ALL other patients start at full replacement dose. For most this will equate to 1.6 μg/kg/day (approximately 100μg for a 60kg woman and 125μg for a 75kg man).
If you are starting treatment for subclinical hypothyroidism, this article advises starting at a dose close to the full treatment dose on the basis that it is difficult to assess symptom response unless a therapeutic dose has been trialled.
A small Dutch double-blind cross-over study (ArchIntMed 2010;170:1996) demonstrated that night time rather than morning dosing improved TSH suppression and free T4 measurements, but made no difference to subjective wellbeing. It is reasonable to take levothyroxine at night rather than in the morning, especially for individuals who do not eat late at night.
BMJ also clear on dose required
bestpractice.bmj.com/topics...
Recommend getting full thyroid and vitamin testing ASAP
Come back with new post once you get results
Thank you! I'm going to do just that.
If taking any supplements that contain biotin (eg vitamin B complex) it’s important to stop these a week before all blood tests as biotin can falsely affect test results
After my thyroidectomy 4 yrs ago I have been riddled with body pains and feeling swollen all the time and Im also menopausal...... I believe in my heart their is a connection between hypothyroidism and menopause but getting ANY doctor to see this is like pulling teeth from a tiger, impossible.
Its a hormone nightmare!
Hi there - there is a connection if you speak to most people they say their thyroid problems start at around 50 odd. See below which explains. The adrenal glands should supply the oestrogen needed after the menopause and sometimes they are unable to - if that happens if affects the thyroid.
I read your responses and I know for me HRT has not solved my pain issues at all since Ive been on them since my surgical menopause almost 18 yrs ago and now T4/T3 past 4 years.
I became crippled after the thyroidectomy and have struggled with burning skin sensation, tight muscles and joint pains only for the past 4 yrs. Prior to Surgical Menopause and Thyroidectomy I had aches off and on but nothing even close to the past 4 yrs. I actually had to quit my job because of the pains and of course it’s EVERYTHING else but hormonal disruption according to my doctors.... its just sad !
Hi there - I am so sorry you are suffering so - I wasn't advocating HRT I wouldn't do that other than give my own experience on it - what I was trying to explain is WHY we get problems at and around the menopause - because of the adrenal glands not supplying enough oestrogen for our bodies that we were used to.
Hi there - unfortunately when you hit the menopause it can cause adrenal glands issues - the adrenal glands take up the slack supplying oestrogen when the ovaries stop producing - but ................if they are 'worn out' then there is not enough of the sex hormones - oestrogen particularly to supply what you need. You have two options - going for adrenal support which would be steroids which would not be an option really or go on HRT which will help the adrenal glands - they need the oestrogen to work well. There are implications with taking oestrogen for the thyroid but you can cross that bridge when you get to that stage - i.e. you might need to up your dose of thyroid hormone to account for the oestrogen binding with the hormone and depleting it slightly. Hope this helps.
Sorry forgot to add - the pains you are feeling are because the adrenals are trying to keep going supplying you with the cortisol your body needs but they are now having to produce the main bulk of oestrogen and struggling - as they also need oestrogen to work well - they have little to give the situation - so there is an imbalance - try taking Vitamin C which helps the adrenal glands too - there is more Vit C within the adrenal glands than anywhere else in the body.
Make sure you have really gone through menopause. Insist on extensive tests, some 3 months apart to be sure.
I was told was post menopausal and started HRT due to similar symptoms to yours, only to have horrendous side effects (Oestrogen from >60 to over 1200 in 2 months) and my periods starting again.
I would not wish that rollercoaster on anyone...
Turmeric can affect the kidneys - have you tried dropping this to see if it is this causes ng the problem.
I found menopause really messed me up, thyroid wise. I had previously been on 150 mcg Levo for 15 yrs, I'm 54 and stopped periods about 7 yrs ago , since then my FT4 level has kept creeping up on the same dose, leading to a couple of dose reductions, and i did have problems with nasty aching at night that ruined sleep for a long while. It's stopped now you'll be relieved to know, and i've slept well again for the last year or so.
But menopause does seem to change things. And i can't seem to find a dose that works for me and keeps the doctor happy nowadays. Something about menopause has definitely changed how my body is using Levo.
It's so confusing. I wish there was a specialist just for thyroid problems. I would happily pay for that.
Me too , i've been looking for 'Thyroidology Dept.' in vain for years. They make out like it's such a simple problem, but that's certainly not my experience with it.
There are recommended thyroid specialist endocrinologists
But before considering seeing one, first step is to get FULL thyroid and vitamin testing
Getting levothyroxine dose fine tuned and all four vitamins optimal
If, after this Ft3 remains low, then it’s time to see specialist
As you are only on tiny dose levothyroxine, likely increase in dose will help
Email Dionne at Thyroid UK for list of recommend thyroid specialist endocrinologists...NHS and Private
tukadmin@thyroiduk.org
The aim of levothyroxine is to increase dose upwards until Ft4 is in top third of range and Ft3 at least half way through range (regardless of where TSH is) ...important to have optimal vitamin levels too as this helps reduce symptoms and improve how levothyroxine works
Hi SlowDragon, I eventually have some results from my tests and would appreciate any advice you might have.TSH 2.20
FT4 1.2
FT3 2.5
Ferritin 94.4
Vit D 46.3
B12 539.3
Thank you
Please add ranges (figures in brackets after each result)
Is vitamin D in nmol or ng/ml
Suggest you put these results and ranges on a new post
Then more members will see them
Just noticed you have been on 50mcg for 15 yrs, Were you doing Ok on that before menopause ? seems a small dose to me, but we're all different. I've been on 150 for most of the time and i weigh under 10st... now arguing about 100 or125 with GP....
Yes, always only 50mcg. Have tests regularly and it’s never changed. Before peri and menopause I was perfectly fine.
I’ve also been on 50mcg Levo for nearly 30years, never changed even sailed through menopause! Recent a brand change coupled with COVID resulted in an awful experience but that’s another story (part of my bio if interested)
I am very, very interested. This could be my issue. I also changed brands and m6 issues started at around the same time. This also coincided with menopause. I wonder if I am concentrating on the wrong thing perhaps?
Can you tell me what brand you used and also which one you switched to?
Of course - I have always been on Accord (from Lloyds pharmacy) then I switched to TEVA (from Boots) - different size tablet, different ingredients, took around 3 months when I started with what I can only descibe as paranoia... hellish!
I've been informed on this site that differing pharmacies use different brands, I've also noticed the box brand does not always match the tablet blister strip.
Hope this helps - I have just received my blood results, it's the first time I have missed Levo and fasted before a blood test, results (as always) have come back normal no further action.
Thank you for the information and advice. I am going to get my bloods checked this week. I am leaving 48 hours without levo and will not eat until the tests have been taken. Is that the right thing to do?
I believe you only miss Levo for 24 hours before bloods and fast apart from water!
Thank you for sharing Jonathon. I have been reading a lot of material from Izabella Wentz but will definitely enjoy reading a different perspective.
Also, how does your wife take Turmeric? Does she use a certain brand? Thank you
You might find going dairy free helpful at present.
What were your concerns with the HRT and breast cancer? Is it in your family? You don’t have to take tablets. The patches and pessaries have a lot lower risk of cancer. I was on the patches for 10 years after an urgent full hysterectomy at age 44. I’ve just come of in order to change to the pessaries but haven’t started them yet.
I used to get aches and a lot of pain in my hands and wrists. Getting my FT3 levels higher has helped a huge amount. Also making sure that it’s level is at least 100nmol (I think that’s the correct letters, I’m in the uk). The pain is bearable now and I make sure I wear gloves out when it’s chilly just in case. 🌻
There was a big news story about how it can cause breast cancer and it frightened me. At that time I was taking it for hot flushes and so thought I could cope. I nw just feel Ill, achy and tired all the time.
Hi far be it from me to encourage anyone to take HRT but what I can say is that the research you mention was actually disputed - a bit like the Dr who years ago said that fat was bad for us when it wasn't etc. etc. Here is a link:
megsmenopause.com/2018/03/3...
They now believe that the symptoms you suffer when not on HRT are more debilitating and bad for health than being on it - it can protect from heart attacks and also make strong bones etc. etc.
I agree with you. Lots of research required. I feel that the patches and pessaries are less problematic than the actual tablets. (They gave me constant migraines anyway). But that is my opinion and we all have to form our own.
The symptoms of menopause can be really awful for some ladies. 🙁
Hi there, just a word of warning - the pessaries only help the intimate regions they do not go into the blood stream of the body - no matter what a GP or others say it is not HRT - it took me ages to verify this but eventually found out.
Thank you for this tip.
I had to leave a 4-6 weeks gap of nothing when changing, and it’s been 8 weeks. I’ve been feeling pretty good in the last 10 days and don’t want to rock the boat by adding anything yet. Apart from getting warm flushes (not dripping hot like some people) and being a little emotional I’m not feeling too bad with the menopause symptoms. I have no ovaries (had to be removed due to a growth) so I am concerned about osteoporosis more than ever.
I still have some patches and can always go back to them if I choose to.
I was the same I have cancer in the family and I’ve been struggling through naturally but I feel like an old woman. All I would say to you is go and listen to the Liz Earle podcasts and Dr Louise Newson the menopause doctor and be informed correctly rather than through main stream media. Then make an informed decision for you. You can even have a private appointment with them rather than a go who only have half a day’s training on the menopause. Good luck xx
Hi there I had a lightbulb moment last night regarding your pain - whether you take it on board is up to you of course. Because Hashi's is auto immune - the immune system will rebel and certainly show you by giving you aches and pains as if you had flu. I know this because I have Hashi's and Lupus to contend with - both auto immune issues.
Years ago I desperately wanted and needed to take pre and probiotics as I know how good they are for you but they caused me big issues. I see my Lupus consultant every three months and have extensive bloods taken - obviously some of them regarding my immune response. My immune response had settled and was stable until I started to take probiotics - he asked me on looking at my results one day - have you been taking anything that might have disturbed your immune response - I asked him why and he told me my responses where showing the immune system was fighting something.
I told him about the probiotics but he said he didn't believe that could be the problem - nevertheless I didn't feel well on them so stopped it - my bloods went back to normal.
Then a few years down the line I tried again and once again my immune system was showing an attack - and my consultant and I had the same conversation - only this time he jokingly said - you aren't taking those probiotics again are you - I said yes - why - he then confirmed they were not for me. My immune system saw the 'healthy bugs' as an invader.
As an aside - if I start to ache all over - then it is something that has caused it - either by eating a food that has caused inflammation which shows as aches and pains like the flu or something you are taking as a supplement - I have a drawer full of supplements that were supposed to help me but caused me issues.
As would happen if you went to see an allergy specialist - it is trial and error to find out what is causing your pain which I know is substantial - so it is worth trying to do this by eliminating and seeing if there is a difference.
I would suggest you stop the pro biotics for a while to see if the pain subsides.
Stop the osteocare for a while it could also be you are taking too much calcium which also results in aches and pains as the body tries to lay it down in the joints etc. - if II take calcium on its own I am floored with pain. Because most thyroid patients are magnesium losers.
It isn't lack of calcium that causes osteoporosis but lack of magnesium to carry the calcium to the bones.
Turmeric even though supposed to be an anti inflammatory could be causing you pain - worth stopping it for a few days to see if it helps. It caused me so many issues I had to stop it.
I also think you are on too little thyroid hormone which could be causing a problem too - what you are looking at is a complete set of symptoms and you need to identify what the root cause is - you should also not be afraid of HRT - it is needed by the adrenal glands - there is a lot of hysteria regarding this hormone but as someone on here has said if you don't have a family history of breast cancer then the benefits outweigh the side effects - and that is now official I believe. I have been on HRT oestrogen only since I was 33 years of age and I am now 71 - and it changed my life - as little did I know down the line I had an adrenal gland issue and it was feeding my adrenals - I felt so well and energised and...............my bones are like an elephants.
Hope this helps.
Regarding probiotics, if you have mast cell activation syndrome or histamine issues, then many strains can be very problematic, but others ok. See article below.
healinghistamine.com/these-...
Thank you
I’m listening and will try to stop the supplements. I will also see a doctor about HRT. Thank you for taking the time to tell me about your story and experience. It’s very much appreciated.
Hi no problem pleased to help - hope it does - do keep in touch on here to let us know if you find the cause.
Hi, I’ve only been on Levothyroxine for 3 years and I also experience bad joint pain , especially at night , my husband says I have restless legs as I have to move them constantly to try to get some pain relief, and they click all the time. I have not Pune any solution to this , but I sympathise with you.
Hi there - restless legs has been found to be low iron problem. Hope this helps.
If I find anything that helps I will pass it on. nearly every joint I have clicks now and the pain in my lower back is constant, nagging and draining. I think the lack of sleep doesnt help!!
Or low magnesium/low vitamin D
Posts that mention Restless legs
Hi,
Thanks for your reply. I’ve never told my GP or endocrinologist about it, as I just thought it was normal, but I will be telling them now.
Menopause and after can be the start of all sorts of aches and pains. Getting older doesn’t help! You don’t have to assume it’s to do with your thyroid but always worth seeing if need any adjustments. I was lucky in that I took HRT after having an early (42) menopause with no problem for years. Hope you get a yearly check on your thyroid as the symptoms sound like you may need an increase in thyroxine. Make sure you take it preferably in the morning an hour before anything even tea or coffee is taken. Good luck!
What is NDT?
NDT stands for Natural Desiccated Thyroid. That is, it is dried, standardised animal thyroid made into tablets.
Most often doctors refer to it as Desiccated Thyroid, Desiccated Thyroid Extract (DTE), or Thyroid USP (though that is actually the powder used to make the tablets, in the USA) or one of the brand names such as Erfa Thyroid, Armour Thyroid, or one of the other makes.
All makes of prescription-quality desiccated thyroid that I know of are from porcine sources. All makes of desiccated thyroid contain similar amounts of T4 and T3 hormones - though they do vary a little.
Some people feel better by taking desiccated thyroid rather than levothyroxine.
(There are several products which are made from dried animal thyroid that do not declare their thyroid hormone content. In general, we do not know how much - if any - thyroid hormone these products contain.)
Many other abbreviations and acronyms can be found in my document created expressly for this forum:
Thank you for your advice.
Hi I’m the same, are you on anything for the menopause? Go and listen to Liz Earle podcast and Dr Louise Newson. I have been trying to go through the menopause naturally and my body feels like an old woman. I have saved to have private appointment with this Dr’s specialist clinic and have decided on HRT bio identical gel and am trialing to see if I feel any different, I also have hashimotos.
Hello UKGirl1966, I am also on 50mcg Levo and have joint pain and feet pain. My vitamins are similar to yours. My FT4 is in upper range, so increasing Levo dose is not recommended. My FT3 is in mid-range. Did you find any resolution for your problem? I am going through perimenopause and have sleep issues. For me, chasteberry seems to help with sleep. Can you please share if you found anything to help with joint pain? Thank you much.
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