Hi everyone. I was diagnosed as hypothyroid about four months ago. I have been taking NDT for the last three months. I've been suffering with chronic pain in my back shoulders and neck on and off for about 18 months and have had pain issues for most of my adult life. This is just one of the many symptoms I was suffering and whilst the NDT has changed my life in terms with my mental health and my energy levels I am still suffering daily with chronic pain which is preventing me from working and doing lots of other stuff. My clinician has suggested that the pain will ease as my oestrogen levels rise which should happen 3 to 6 months after starting NDT. I'm reaching out in the hope that someone else has experience of this and can share whether they have found relief through NDT or have found another effective way to conquer the pain! Many thanks
Chronic pain and hypothyroidism - ideas? Will N... - Thyroid UK
Chronic pain and hypothyroidism - ideas? Will NDT eventually bring relief?
To add... the pain is mainly localised but is systemic across my whole body, with any muscle/tissue seemingly prone to flaring up in an over the top response to stimulae. I was diagnosed as fibromyalgia earlier in the year but my research suggests hypothyroidism can be misdiagnosed as fibro so hoping that it the case!
What were your latest thyroid results with ranges? Also results for ferritin, folate, B12 and D3? HYpothyroid people can get low vitamin levels due to low stomach acid. We need OPTIMAL vitamin levels to be well.
Hi fpardoe and welcome to the forum. I have actually read up quite a bit on fibromyalgia and the likely connection to hypothyrodism as I've been in a lot of pain myself this past year with back and shoulder especially and I'm now awaiting an appt. with a rheumy. I actually think my problem is arthritis (but shall have to wait and see) but I've splashed out on acupuncture which has definitely helped and at least has managed to keep me mobile. I've also been on NDT for years so not sure that this could help in any way but who knows - as Jaydee has already said people could advise you further with regard to the thyroid if you could post your latest thyroid results with ranges (the ones in brackets) together with vitamin results.
Fibromyalgia is a word that describes symptoms. What causes it? Apparently no one knows for certain. Since that is the case why not expand your search past hypothyroidism? Could you have picked up an infected tick in your area or while traveling?
Something interesting from an observant Doctor way back in 1899
healthunlocked.com/thyroidu... (quote from page 33 of the document liked to by this post)
"Apart from the sacral and back pain attributable to uterine disorders, there is a special spinal pain in chronic benign hypothyroidism, which must be emphasized. It most often sits between the shoulder blades. Patients say that the back is like gnawed, hollowed out. This spinal pain has this characteristic and pathognomonic that it worsens during the night. Some women, to escape their beds and their pains, get up early, broken, beaten. It is as if they have slept on a hard body, in a forced position. The pain improves, as does cephalalgia, towards the evening, when muscular exercise and diet have determined the rise in body temperature, chilled during the night"
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
A Helpful Quote from another members GP ,on what to expect when starting treatment for hypothyroidism.
"The way my new GP described it was ..."You know how your body is continually breaking down and rebuilding itself? Well, the thyroid controls the rebuilding, so if it isn't working you carry on breaking down but don't rebuild properly. Your body now has a lot of catching up to do, which will take a minimum of 12 months, probably a lot longer...." or words to that effect. He also said it would be a saw tooth recovery (get better, go backwards a bit, get better, go backwards a bit) and he's been right so far."
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
So ... give it time and fingers crossed , things will improve as the rest of your body slowly recovers. But it is likely to take quite a long time.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
your back/ neck pain may, or may not be related to your hypothyroidism .. but you have my sympathy ... i know all too well the misery of chronic or recurrent pain from back / neck/ sacro-illiac issues .. mine has finally stopped being a problem ,(thank f***) but sadly i can't tell you thyroid hormone treatment is what fixed it .
I now know exactly how to recognise it's starting signs immediately , before it has chance to become a problem again , and i know which pelvic core exercise re-aligns my pelvis rapidly before everything else (between my shoulder blades , then neck) start to tense up and join in the party. ( thanks to a young NHS physiotherapist who spotted a weakness all the other people i'd seen for 25 years didn't)
I don't really think mine were directly related to my hypothyroidism , as they initially started long before i became hypo , and i had given my sacro-illeac joint a couple of really heavy whacks in my more careless youth . But when i read that description in the quote above about 'between the shoulder blades' i was struck by the similarity to my experience... if i had a pound for every time iv'e complained "it's between my shoulder blades" to a physio / osteopath / masseur/ etc etc etc....... i'd be extremely rich .
Thanks tatty - as usual I have learnt from you - funny you should mention sacroilliac issues as that's where my worst pain is and nothing seems to improve it. Perhaps I should book a private consultation with you😁
Used to suffer a lot with this when I had a herniated disk and found that my sciatic nerve would get pinched by my piriformis muscle, found positioning a tennis ball at point of pain and sitting on it would release the muscle, better than trying to do the recommended stretch to release which aggravated my SJ and would sometimes move it out of alignment.... I would then wedge myself in a door frame and push hard on my SJ to re-align.... such fun days 🙄
Will look for a tennis ball in the morning - I'm up for trying anything 😗
Have you a sharp point of pain or a dull ache?
Point of pain was pinched nerve (like being poked by a stick) and sickening dull ache was miss aligned SJ
Just roll around gently on ball until on the point of pain, you might have to raise your leg and then press down hard briefly for that on fire feeling and release, if out and about the corner of a table, shopping trolley or something similar would work (never mind the queer looks)
The other way I would reset my SJ was to stand on a chair or if out walking, sit atop a 5 bar gate worked too, jump down landing evenly on both feet which would do the trick 🤗
Thanks Eeyore - will try out everything you have said although I do know that I have curvature of the spine (scoliosis) which I was told 8 years ago - never made the connection then that possibly the osteoporosis was the cause. I wasn't given any info and was only told to come back when I was in pain so feel very let down over this but hey ho things are what they are 😁
Also try a lacrosse ball. Smaller and harder. Larger than a golf ball though.
Delgor . Try this:
Lie on your back on the floor .
Knees up - feel flat on floor - ankles hip width apart - nothing under head.
Feel for the sticky up bony bits at front of pelvis with your fingers ,, move fingers about 1 inch in from there (towards each other)
under that spot there are some muscles , you need to identify them ( tricky)and learn to tense/ 'engage' them,... when you are doing it right you can feel and see the muscles push the fingers up.
The trick to 'finding' them is to cough.. once you've found then then you can learn to engage them without needing to cough .
You need to strengthen them, and get both working equally strongly by repeating the above exercise regularly and tensing / releasing them till they get stronger.. this bit is very tedious/ frustrating and you may need some help initially to identify them.
in my case one side was fairly strong and easily lifted my finger, the other was totally weak , i couldn't move it at all initially... nothing at all.
Then ( several weeks later ) when you can engage them both , and they are both equally strong .
Same position on floor . (nothing under head)
engage both sides and hold .
then also engage pelvic floor muscles (as in standard 'pelvic floor exercises') ~vaginal followed by anal muscles~ till all is engaged .
While all are strongly engaged , push lower back into floor and slowly roll your bum off the floor . Hold , then SLOWLY release (in opposite order).
As you get stronger you can lift your bum totally off the floor but DONT do it without all the other bits engaged .
somewhere during this process of rolling/ lifting the bum , (IF you have the same problem as me ) you will feel a little painless 'click' from your Sacro-illiac joint .. et viola ... problem solved.
I recommend anyone with back / neck/ shoulder issues to investigate their pelvic /sacro-illiac region with some skilled help ,(eg sports injury physiotherapist) as this is often where a lot of these issues actually stem from ,
The Muscles that hold the pelvis together should act like a load of elastic bands holding a 'broken bowl' together , if some of the elastic bands are weaker than others /stretched, or we never learned to engage them correctly, then the bowl is not held in shape correctly.
The Sacro-illiac is part of that bowl and the base of the spine sits on it ,so the shape of the bowl affects everything else about the alignment of your back, If it's not straight the back is out of alignment this leads to the build up of tensions in other muscles to compensate..,.... which stop the mid-back / neck (and shoulders) relaxing properly , they stay tense, causing chronic pain and frequent 'pulled muscle' injuries .
The sacro-illiac also has all the nerves going through it... if it's not 'right' they can get squished leading to pain.
In my experience things such as osteopathy / acupuncture / massage etc will all help for a short while , but the problem will usually return and you will have to keep going back to pay the very nice osteopath (at their very nice house ,with their very nice car parked outside) to put you right again.
For some curious reason .. none of them will offer to teach you how to identify weaknesses and strengthen your own pelvic / core muscles so that you can maintain your own back properly in your own living room.. but maybe that's why they have a Merc on their gravel drive and you turned up in a rusty ford fiesta .
P.s Delgor .... that will be £485 , thanks in anticipation of your prompt remittance,
lol 
Oh wow - will definitely try out everything you have said and thank you so much for going into such detail - it's very kind of you! I definitely get the point when it comes to finding a solution and not lining the pockets of those who have mercks in the drive and yes I do own a red fiesta as it happens which I am very attached to😁 Believe you and me I will gladly foot your bill and just hope that some of this will also help others as I fear I've hijacked the post somewhat which was never my intention. Off now to try stuff out.😙
That's very interesting. I've only been taught a basic bridge, but this is different. I have one hip weaker than the other and have had upper back pain for decades.
My daughter has hypothyroidism and fibromyalgia, and has had pain years like you describe, and Armour thyroid made a huge difference. Low dose Naltexone also helps a little, and watching the vitamin D and all that. The people here have great advice about the details, but the description of your pain aligned with hers so much, I just wanted to jump in and say there’s hope!
Lost
Thank you! Naltexone looks interesting.. I'm very reluctant to take any drugs. Are there any notable side effects associated with it? So glad she's found relief!
Hello Fpardoe and welcome to the forum :
There is nothing on your profile page and I'm wondering which country are you living in ?
In the UK once diagnosed hypothyroid we are prescribed T4 - Levothyroxine first as this is the cheapest and easiest thyroid hormone treatment option to manage and suits around 80% of all those taking it.
Natural Desiccated Thyroid was the original treatment for hypothyroidism and used successfully for over 100 years and long before we even knew the value of it's contents or knew about how to analyse bloods to see their content.
Have you received a diagnosis of the reason for your hypothyroidism ?
NDT contains al the same known as that of the human gland and we generally advise slowly increasing in 1/4 grain increments weekly, the dose you are taking.
You can monitor your progress taking blood pressure, pulse and temperature twice daily as you increase the dose and hopefully relieve symptoms being suffered.
Did you take any blood tests before starting NDT and is your doctor monitoring you as your dose is slowly built up to optimum ?
No thyroid hormone replacement works well until ferritin, folate, B12 and vitamin D are up and maintained at optimal levels - do you have any results of these core strength vitamins and minerals you can share with forum members.
NDT is a slow build and I found my symptoms continued to improve well over 6 months into being on my optimal dose.
That's a nice bit of hope for me @pennyannie as I've newly started NDT having got nowhere with Levo and combo.
I switched to 2 grains. After a period of a few days settling and then a few days feeling quite nice and then a deterioration again I increased by 1/4 grain. I've popped the 1/4 grain in at bedtime and split the 2 grains 7:30am and 3pm. I think I've had the extra for 5 nights now, perhaps last night was 6 nights. But my HR has increased a bit and my sleep isn't great. Do you think I need to stop on this dose a while, 2 weeks say, because it might settle down? I'm probably not far off my requirements, but I definitely felt like the 2 grains wasn't enough. I'm hoping not to have to mess around adding in fiddly bits of Levo if I can help it.
It's generally suggested that when you get to 2 grains you hold that dose for 6 - 8 weeks allowing it to bed in - and then take a blood test to compare with bench mark readings of FT3 and FT4 from before starting this experiment.
On NDT your TSH will likely be low suppressed and your T4 likely lower BUT your T3 should be proportionately higher than when on T4 only -
I would think all you can do if you swopped direct from a T3/T4 combo is to compare results and symptom relief and well being experienced from both treatment options.
I'd be inclined to drop the 1/4 grain night time dose and give the 2 grains sufficient time to settle, 6 - 8 weeks.
If you feel improved on NDT but still ' not there yet ' after being on the same dose for 6 - 8 weeks you start again building up in 1/4 grain increments -
There will come a week where you feel as though you have gone a little over and too far and you may become a bit anxious, edgey or just uncomfortable in your skin - so you drop back down to the previous weeks dosing regime and stay there for 6 - 8 weeks and then reassess your progress.
I tracked myself on blood pressure, pulse and temperature twice daily throughout my experiment and whilst the first 2 physical symptoms remained constant I watched my temperature nudge up from 35.4 to 36.6 where it usually hangs around now, some 5 years later.
I also saw my T3 and T4 readings swop places from when on being on T4 only and on NDT my first blood test after 10 /11hours from dose was a T3 at 110% and my T4 at 25% through the ranges with a TSH at 0.001 - which has dogged me since RAI and all I was ever dosed and monitored on and which caused me to become very unwell:
Had I eaten breakfast my T3 would likely have dropped down into range :
Had I waited longer, obviously the T3 would have been systematically reducing throughout the day - but I'm self medicating so not obliged to fit into any boxes or guidelines by my own.
I'm with Graves Disease post RAI thyroid ablation in 2005.
I swapped over from equivalent T4/T3, in fact the T3 element of 2 grains is slightly lower than the combo. Which is why I thought it might be necessary to take another 1/4 grain when I started to feel tired and low.
My temp is low in the morning but picks up. My hr is less reliable than yours because I have permanent AF. But I notice trends. I felt rubbish for years on Levo, and combo treatment seemed to be easily switching on the D3 enzyme and reducing the effectiveness of my doses very easily.
I admit that the 2&1/4 grains have not made me feel better, but I thought it might be necessary to stick it out for a bit. Not sure what to do really. On 2 grains I started nodding off at the wheel and I have a long motorway journey to make next week. What I wouldn’t do to get my life back after 9 years of under performance.
I find NDT is much softer and more subtle than synthetic T3/T4 :
I'm not sure you can simply swop from synthetic T3/T4 to NDT even at the same dose levels and expect the same symptom relief as they work very differently within the body with the T3 and T4 in NDT attached to Thyroglobulin and so much more slowly released in the blood stream.
Trialling a new treatment option and putting yourself under pressure, with a long car journey is not sustainable - please think this through and share the journey or make alternative travel arrangements. and take some pressure off yourself.
I took 2.25 grains of NDT for years. 1.25 at 6am and the other one at 1pm. Taking it at bedtime could cause problems sleeping it did me. Take a blood test after about six weeks and see how your FT4 and FT3 readings go. My FT4 is never low, or my FT3 only my TSH is suppressed which is good.
Just to clarify and to put your mind at rest FancyPants, I only meant that NDT hadn't helped me with the pain I'm experiencing. NDT did in fact give me my life back so many years ago and all was well - it's a shame that Nature Thyroid was withdrawn from sale as I'm not sure the new Armour is suiting me as well but really difficult to know when so many other things have gone wrong. Fingers crossed that it will prove the right thing for you!
I hope so, because after 2 years of trialing combo with ample T3 to play with, I had almost no improvements. None physically, just a few mentally.
Really sorry to hear that - I have the upmost sympathy for anyone who has thyroid problems because I know it has affected me both physically and mentally but of course it really is one of the most misunderstood conditions to have. So many times people have said "oh you look well" when I've felt awful but I've given up trying to explain it to people. I will definitely be routing for you but do heed Pennyannie's advice and think twice before undertaking a long drive by yourself - I know I wouldn't do it. Take care!
I live in rural Northamptonshire. I don't have a choice other than to drive. But I won't take unnecessary risks, so will see how the week goes.
😀😀😀
Hi fpardoe. Just jumping on to say that I have been diagnosed with hypothyroidism and Hashimotos for about 6 years. I’ve been suffering with chronic pain and fatigue, depression and anxiety for over 3 years. After going through numerous medical tests and hospital appointments I was diagnosed with fibromyalgia and ME/CFS last year. It’s been hard going, but I’m trying to optimise my vitamin levels to see if that helps. Hopefully you get an answer soon.
Loislincmum, not to complicate fpardoe's thread with this , but just to take the opportunity point it out . As you are only on 75mcg Levo and recently given diagnosis of Fibro / CFS/ME. it would be a good idea to post a new question with your current thyroid results on 75mcg + vitamin levels . It is possible that your thyroid hormones could also do with being improved., 75mcg is a fairly low dose. many of us need somewhere between 75mcg -150mcg , fine tuning of doses (not just 25mcg increments) can also be very helpful. Perhaps put your thyroid/ vitamin result's up in a new post when you feel up to it , and we may be able to offer some helpful observations.
The following link is by a doctor/scientist (deceased) who was an Adviser to Thyroiduk before his death due to an accident. He was also a doctor/researcher/expert on the use of T3.
I hope this link is helpful:-
Thank you all so much for your replies! Here are the full details of my blood tests before I started NDT and recent ones after 2.5 months on it. I'm seeing an amazing specialist Doctor privately. She has said my vitamin levels are all very good. And my T3 and T4 are now exactly where they should be. I've also had tests recently for pre-arthritic markers that were fine. I also had a full month long hormone profile in September which showed by hormones were all over the shop with no progesterone, oestrogen up and down and high cortisol. So a lot to sort out!
I'm on Amour 60mg - 1/2 grain in the morning 1/2 in the afternoon
6/10/22:
C Reactive Protein (high sensitivity) 0.58 <3.0 mg/L
25 OH Vitamin D 93 50 - 200 nmol/L
LIVER FUNCTION TESTS
Albumin 43 35 - 50 g/L
HAEMATINICS
Ferritin 60 30 - 150 ug/L
Please note change in ref range for females in line with NICE recommendations.
Total Vit B12 251 145 - 569 pmol/L
Folate (serum) 18.3 8.83 - 60.8 nmol/L
THYROID FUNCTION TESTS
Thyroid Stim. Hormone 0.75 0.270 - 4.2 mIU/L
Free T3 3.5 3.1 - 6.8 pmol/L
Free Thyroxine (FT4) 14.0 12 - 22 pmol/L
Thyroglobulin Antibodies 15.0 0 - 115 kIU/L Method: Roche Cobas
Thyroid Peroxidase Antibodies 10.7 0 - 34 kIU/L Method: Roche Cobas
17-Beta Oestradiol 174 pmol/L
Female - Oestradiol (pmol/L)
Ref Range
Follicular 84 - 510)
Ref Range Luteal 154 - 1240)
Ref Range Peri-Ovulatory 304 - 1872)
Ref Range Post-meno < 176)
Sex Hormone Binding Glob 101 24.6 - 122 nmol/L
Prolactin 263 71 - 569 mIU/
20/12/22:
THYROID FUNCTION TESTS
Thyroid Stim. Hormone L 0.04 0.270 - 4.2 mIU/L
Free T3 5.7 3.1 - 6.8 pmol/L
Free Thyroxine (FT4) 13.5 12 - 22 pmol/
These blood results don't look great to me. Your latest show a very low T3 level. But I'm no expert on when to dose NDT before a test to show general levels. Your thyroid results are all worse in October than they were in the original test above it.
fpardoe .
can you clarify dates ... Which TFT is the latest one ?
This:
Thyroid Stim. Hormone L 0.04 [0.27 - 4.2]
Free T3 5.7 [3.1 - 6.8]
FT4 13.5 [12 - 22]
or this :
Thyroid Stim. Hormone 0.75 [0.27 - 4.2]
Free T3 3.5 [3.1 - 6.8]
FT4 14.0 [12 - 22] .. if this one is latest and you were told "T4 and T3 levels are exactly where they should be," most people here would disagree.
Both T4 and T3 are very low in range , on this test. T4 is only 20% , T3 is worse at 10% thyroid.dopiaza.org/ (% through range calculator).
I've just edited for clarity and I wrote the date wrong! Latest 20/12/22:
Thyroid Stim. Hormone L 0.04 0.270 - 4.2 mIU/L
Free T3 5.7 3.1 - 6.8 pmol/L
Free Thyroxine (FT4) 13.5 12 - 22 pmol/
Sorry for confusion!
SeasideSusie / SlowDragon Help please fpardoe's post has gone a bit off track and test dates were originally confused , she has now edited to clarify , but i can't help much with vit's and NDT advice, so have tidied it up so you can find it easily ~TFT's, % ,vit's below ~ female hormones and a few other results are still in an earlier reply above this.
" Here are the full details of my blood tests before I started NDT and recent ones after 2.5 months on it. I'm seeing an amazing specialist Doctor privately. She has said my vitamin levels are all very good. And my T3 and T4 are now exactly where they should be. I've also had tests recently for pre-arthritic markers that were fine. I also had a full month long hormone profile in September which showed by hormones were all over the shop with no progesterone, oestrogen up and down and high cortisol. So a lot to sort out!
I'm on Amour 60mg - 1/2 grain in the morning 1/2 in the afternoon
6/10/22:
25 OH Vitamin D 93 [50 - 200] nmol/L
Ferritin 60 [30 - 150] ug/L
Total Vit B12 251 [145 - 569] pmol/L
Folate (serum) 18.3 [8.83 - 60.8[ nmol/L
TSH 0.75 (0.27 - 4.2)
FT3 3.5 [3.1 - 6.8] 10%
FT4 14.0 [12 - 22] 20%
Tg Antibodies 15.0 0 (- 115)
TPo Antibodies 10.7 0 (- 34)
20/12/22:
Latest THYROID FUNCTION TESTS
TSH 0.04 [0.27 - 4.2]
FT3 5.7 [3.1 - 6.8] 70%
FT4 13.5 [12 - 22] 15%
fpardoe, now the confusion is sorted it might be best to repost your thyroid / vitamin results in a new post for advice on them .. i can't help much with NDT / and vitamin levels and i suspect no-one has noticed them since this post went on a bit of a wander into 'bad backs' ( sorry X)
Curious. Are you 100% gluten and dairy free? I'm hypo and had the same pains as well as bone and nerve pains in my hands, knees, feet. I've never had any issues with gluten or dairy until I began levothyroxine. I did a self test and gave up gluten and dairy. After 2 weeks, my pains stopped. I got back on gluten and my pains started again. I stopped and started about a dozen times. My kidney area would also hurt when I was eating gluten. I finally just gave up on gluten and dairy. Pain free ever since. Gluten causes inflammation throughout the body. The one thing that stood out for me with gluten though is abdominal sounds. Every time I ate gluten, my abdomen would let me know. It sounded like a war going on with demons lol. If you are not 100% gluten free, give it a try for a couple of weeks to see if your pains ease up.
I became severely gluten intolerant about 4 years ago and can't go near the stuff now. I'm about 90% dairy free with the very occasional smidge of butter or yoghurt creeping in. And bit more relaxed with goats cheese.. Going to try complete elimination and also sugar for a little while.
I was the same way. Cutting a little here and there. Cheating lol. But any amount of gluten will put me down in severe pain for days. I haven't worked in 2 years. I was misdiagnosed for 7 years. Once I completely cut gluten out, I began to feel better after a couple of weeks. It is hard for me as my wife eats gluten. I had to buy my own cooking pans and I even bought my own refrigerator to make 100% sure gluten couldn't touch my foods. Overkill I know, but it has worked for me :). Try it for a couple of weeks just to see.
You probably need to see a Rheumatologist to see if Arthritis is the cause of your pain. I also always suffered with pain my whole life but it never became a problem until I lost my thyroid and became hypo and no amount of medication solved the pain which just went insane eventually I was diagnosed with Psoriatic Arthritis (PSA) but the delay of diagnosis has just destroyed my body and really turnt my world upside down.
That's rubbish I'm sorry to hear it. I had test for arthritic markers that came back negative so looks like this isn't the cause for me
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