Joint pain advice please

[Val-55]

I'm posting at 3am ,can't sleep yet again due to painfull joints . I was diagnosed 10 years ago with hypothyroidism and initially took 25' then 50 now 75 thyroxine . My recent blood test was TSH 0.4( 0.01-5) t4 22( range up to 20. T3 4.2 ( 2-6) have had blood tests looking for raised esr but seems ok . My whole body is sore , throbbing even my ribs . I'm wondering if the Throxine is causing this it is def worse than it was a few years ago when my TSH was 8 . Would a change to armour be a possibility , would my dr even consider it .?or do you have to buy privately . I'm at a loss as how to best cope with this as I know I will feel so tired tomorrow Thanks for you thoughts .

[Marz]

Hi Val-55 ......How did you get along with following Dr P's Adrenal protocol ? It was three months ago I believe. How are your levels of Iron - Ferritin - Folate - B12 - VitD ? All those levels need to be good for the uptake of thyroid hormones. If you have aches and pains it could be low VitD. Have you had your thyroid anti-bodies tested for Hashimotos ?

I too have suffered with horrible inflammation and pain in the joints having been diagnosed with Fibro some 14 years ago. I now realise it was low thyroid hormones was part of the problem. Having optimised the treatment I have improved greatly. Being Gluten Free may also help you to reduce inflammation in the body....I posted yesterday bout this very thing....

Hope you soon feel better... someone else will comment on Armour. However it is important to lay the foundations firmly first with good levels of the above vitamins and minerals - otherwise you are trying to build wellness on shaky ground.....

[Val-55 in reply to Marz]

hello and thanks for your reply. yes I took adrenal supplement , but no improvement with joints. I had a vit d test about 2 years ago and it said adequate, should I have another now. I havnt had B12, for a long time. yes I had high antibodies when first diagnosed but they won't test again. I do try and eat little gluten , but I'm not totally free, perhaps I shouldn't try . j saw a rheumatologist about 5 years ago as I had painful joints then and my father has RA she said keep am eye on thyroid. My levels seem ok apart from high T4(conversion ??) But the pain is so much worse now and I an so stiff in the mornings and it doesn't really wear off until bed then it gets worse again. Argh, sorry to moan on !, I am 54 and I feel a lot older. Should hoovering , a bit of weed pulling cause such pain in hand and shoulders ,back ? something is really wrong , bur Dr said won't do ESRlast time because was fine 2 years ago !! I have private health care , but don't know really who to see. !!! Ps I always used to take Wockhard thyroxine but I have a mix of Activas as well , could that not help ?.

[humanbean in reply to Val-55]

My vitamin D was also in the adequate range (but very low in that range). I felt so much better - far fewer aches and pains in muscles and joints - when I started supplementing with 3000 iU Vitamin D3 per day. I know some people take a lot more.

It really is worth knowing the actual numbers and the reference ranges.

If you want a test done privately for vitamin D it can be done for £28 with a finger prick test from here :

vitamindtest.org.uk/index.html

[Marz in reply to Val-55]

Sorry am afraid I am not familiar with the various makes of T4 - but I have read different people improve with different makes. I think you need to go back to the beginning - obtain as many results as you can with ranges and post them here in another post. These are my suggestions : TSH FT4 FT3 Anti-TPO - Ferritin - Folate - B12 - VitD - Iron. The last 5 tests need results at the top of the range - Ferritin around 80.

Am afraid eating a little gluten is not good when you have anti-bodies. Have you been able to listen to the on-line summits - The Hashimotos Institute ? All the speakers talk of gluten being one of the known problems for anyone with auto-immune diseases...any auto-immune illness which of course includes RA. The health of the gut is everything....

Don't think Adrenals are involved in the joints - obviously everything is linked in the body - but more likely the raised TPO and low VitD. As you have private cover could you have these tests done privately - via Thyroid UK so you can receive a discount....

[Hidden in reply to Val-55]

Hi there.......I recognise your problem as I've suffered the same myself,having been under medicated for a long time.When my GP finally agreed to raise my Levo although somethings improved my joint pain got worse.Eventually I was referred to an understanding Endo who was willing to prescribe T3.( a conversion problem) My GP has accepted prescribing it for me too,though was surprised at the cost on NHS.

My joint pain didn't disappear completely but did improve.Taking myself off bread,cakes,biscuits etc also helped.

I have tried Armour( self purchase) which is OK butI have approached my GP about it and have given him info about getting it on a " Named Patient Basis" and he was going to have to consult his team......so far I've heard nothing,so not looking good.

However,at the moment I'm currently prescribed 75 mcgs Levo and 10mcgs T3 but today going to raise my Levo back to 100 mcgs.( my nails were much stronger on 100mcgs Levo before adding T3) but Levo was reduced in order to add T3 .

I recently read a newspaper article by Arlene Phillips who was suffering joint pain and recommended taking GoPo Rosehip capsules and said that her movement was much improved.( 120 capsules £17.99 )

I have purchased some on line and they are definitely helping me,but it is early days( only been on them for a week) Arlene reckoned she needed a month for a great improvement.

If you have a conversion problem then some T3 may be your solution and a good Endo would recognise that.

However,I think it is a lot more difficult to get NDT prescribed for most people as it's not licensed in UK.If you have private health care it might be worth enquiring.Sorry for the long post ,but hope info on my own journey might be of help.It certainly takes a lot of trial and error to get sorted not to mention the time involved....good luck.

[Hidden]

Hello, my hip pain (mainly at night) was caused by low vit. D, which I tested for privately. Aftet 2 weeks of taking vit. D drops, the paint almost went away. It came back recently in a much lighter form and it heppends I tested myself for magnesium and it turned out it was low too. So supplementing with liquid magnesium now and the pain it gone. Hope this helps.

[jacqui1957]

hya well iv got the same stmptoms as ur self and i dnt get the sleep i want either iv something wrong with my ankle feels like iv twistered it and sprained it bad hurts when i walk on it so it makes you wonder what causes all the problems were having tablets were taking or gettting older iv got syatica on my left side which is un bearable at times i could cry

[Val-55 in reply to jacqui1957]

It really is no fun is it, do you take thyroxine , did it start ok and has it got worse over the years. I do wonder if the Throxine is causing it because I didn't have it 5/6 years ago .

[jacqui1957 in reply to Val-55]

hi val it started about 12 months ago but iv had syatica for about 7yrs and its painfull i was told by my doctor 2 weeks ago that iv got arthoritous in my left foot as thats the one thats hurting like hell i do take thyroxine tablets 50mg but im on a lot more medication diabetic pills blood preasure tablets u name it i take it

[Hypopotamus]

When I was first diagnosed with hypothyroidism I was put on thyroxine. Two months later, another blood test showed the TSH was going up not down, so they increased my dose. This happened twice more by which time I had severe pain in my joints.

After literally a fight with my GP, I secured an appointment with an endo. He agreed to put me on liothyronine (T3), and the joint paints disappeared within a few days.

[jacqui1957 in reply to Hypopotamus]

whats the T3

[Hypopotamus in reply to jacqui1957]

T3 is liothyronine. It's what we convert T4 (thyroxine) to in our bodies.

[Caze]

Hi Val 55

yr T4 is high but yr T3 is low. U cd have a conversion problem and might benefit from the addition of T3. I become v stiff if under medicated and T3 definitely improved this fr me. Gluten free diet plus optimum levels of B12, ferritin and vit D are essential. If u are considering Armour which contains T3 I would recommend u read Stop the Thyroid Madness which is full of useful information.

[Val-55]

Thank you all for your very helpful information, I am going to get all the basics tested b12 vit D ferritin etc and I have ordered a private blood test for antibodies and take it from there . I am going to stop dabbling with gluten free and try and cut it all out .I will try and discuss with my Dr about Throxine causing pain, though it is included on the medical instructions in the packet as a possible side effect,though she is not really interested !! And will see how it all goes . I will post results as I get them. Thanks again Val x

[Ladywell]

Since no one else has mentioned them, I can also suggest daily intake of Bromelain (an anti-inflammatory tablet carried by Healthspan), Ubiquinol (a high-dose Co-Q10 for quick absorption for over-50s [and others who needs it], also found at Healthspan) to assist mental clarity, and the juice of Montmorency cherries (condensed and found at Holland & Barrett and other places) which is well-known to address hand, joint and muscle pain. Also good to see yourself/docs as collaboration: those who are disrespectful and obstructive should not be on the team. I finally realised that wasting energy on such people when help is definitely out there - especially when you're so unwell - makes no sense. Also, trust your own experiences. When you know you've followed advice that isn't working, do as scientists do and redirect the search - which is what this website is here for! These long waits while docs consult each other usually amount to avoiding something that will make them stand out from the pack. Really hope you feel better soon.

[Val-55 in reply to Ladywell]

Thank you for you advise , yes I agree the Dr seems to be no help, or are just too busy to help and I have always tried to help myself, but sometimes you feel a bit bogged down and want a solution from someone else !!!! I find this site so invaluable and there is always someone on hand . I will try bromelene, is it pineapple base and the co q10 , I bought glucosamine and msm but doesn't seem to help , but perhaps a month isn't long enough , and I have always taken fish oil for inflammation . Dr said take ibuprofen every other day.,which I don't do as I get indigestion . Am going to try gluten free too as I have only half done it and see .Thanks again for your kind advice Val

[jacqui1957 in reply to Ladywell]

my doctor wont give me antiflamtory tablets because im on warferine tablets to thin my blood as he as taken me off my quinine tablets too as i suffer from bad cramps at night time

[shaws Administrator]

I was the same as you, worse on levo than before being diagnosed. Ask your GP if he will add 20mcg of T3 on a trial basis for a reduced 50mcg of levo. It may well give you some relief.

[carolr]

It could be an infection?

Carol

[Val-55 in reply to carolr]

I can't see so as it has been for too long , but thanks for your reply, I will ask Dr .

[carolr]

It could be an infection?

Carol

[Gillykins]

Hello, Just like to say that I felt very much the same as you and it felt like bone rubbing on bone.

My results showed inflammation so I took ibuprophen 3 times a day with food. I take my levothyroxin at 4 in the morning so no medicines interfered with each other. At the same time as this I picked up a different brand from the chemist called Almus ,( I had previously been taking Mercury brand.) The results have been good and I am getting out of a chair and walking without pain. The chemist kindly cuts the 50mg in half for me so I get the correct dose,( I take 125mg) as Almus don't do a 25mg tablet.

Hope you will find the correct medication for yourself. Best wishes.

[Diane333]

Hi I would suggest to also get your Calcium vitamin D and a test for PTH done all at the same time. There is a possiblility it could be Hyperparathyroidism, this is different to thyroid although many people who get this desease also have thyroid problems. There is a lot of new research on this desease, it was concidered a rare desease but findings have shown it to be under diagnosed due to the lack of understanding by endo's on how to read the blood tests. Many people have been misdiagnosed with Fibro, but may have this curable desease.

Diagnosis: Top of the lab range or higher Calcium levels in blood , PTH high, a Low vitamin D reading is a indicator of this desease.

PTH should be very low in responce to a high calcium if it was working correcly. If you have high calcium and your PTH is not very low more investigation is required by your endo.

Symptoms

Joint pain, muscle cramps,lack of sleep, frequent urination, headaches, fatigue, depression, anxiety, kidney stones, osteoporosis, and many more. See parathyroid.com this site explains in much more detai.

[Val-55 in reply to Diane333]

Thats really interesting I will look it up, I don't feel it is osteo as I have full range of movement in joints , they just hurt and are very sore,also if I bump myself the pain goes on and on for ages ,real extreme .I always feel daft if I stub my toe or hit my shin, my husband says I over react , but it wasn't like that 5 / 6 years ago .Thankyou for your kind response Val x

[r0dg3r]

HI, well I'm not sure how helpfull you'll find this but I suffered from pain in all my joints and have a physical disability that it didn't relate to. After numerous scans and blood tests etc for to see what was happening I was put on a dose of diclophenic three times a day. At one stage I was still getting breakthough pain and swelling in my joints. I read an article somewhere about cutting out citrus ie orange lemon etc from your diet also nuts, caffine and cheese. I've folloed that for 10 years now and I also started to do pilates three years ago three times a week for an hour and a half. At first the pilates was a battle but within six weeks I began to notice that if I woke with pain and did some exercise for just ten mins before getting up I was infact getting rid of the pain without the need for other types of pain relief. I do that every day now, follow the diet, only allow a treet of chocolate and red wine once a week. The swelling in all my joints has gone, my wedding ring is now three sizes to big, I've reduced the dose of pain relief to the lowest possible, (the doctor actually rang to check I was still taking it as he'd not done a prescription for a few months) OK I just thought I'd share this with you as I honestly do know what youre going through, I've lived with my underactiive thyroid now for 30 years, you might find it worth a try good luck and feel free to contact me if you'd like to ask anything

[Val-55 in reply to r0dg3r]

thanks for your comment , yes I do find that red wine makes pain worse next day, so try to avoid now ,I do eat a couple of Brazil nuts for selenium and drink usually one coffee a day. I was thinking of taking up yoga : Pilates ,I used to do a lot a few years ago,but I am very active and walk a lot everyday with dogs .u think you get used to living with anything if you have it long enough but I'm sure things should be better.I really don't think it is osteo as I have good movement in all my joints.it is constant soreness ,throbbing particularly at night, so yes more exercise could be the answer !,

[r0dg3r in reply to Val-55]

Wi9sh I knew were you are my pilates teacher offers a free class so you can try it. Fortunatly I find I tolerate the red wine better then white but evan the two nuts would drive the pain home the next day. ps I'm in Berkshire

[GRConwy]

I had joint pains until I switched to T3, which I have to buy myself, apart from the occasional twinge I'm pain free. Geraint.

[Val-55 in reply to GRConwy]

I'm going to be brave and ask Dr about T3

[GRConwy in reply to Val-55]

Don't ask, don't get. My GP wouldn't prerscribe it and the endo I saw said that the only treatment is T4 (levothyroxine), I never went to see the endo again and he's well aware of my view of his suggested treatment!

I buy my own T3, it costs about £40 / 300 x 25mcgm tablets. I'd tried a mix of T3/T4 combo therapy and T3 alone, for me T3 alone worked best.

A lot of people do well on natural dessicated thyroid (NDT), it has a mix of T4, T3, T2, T1 and calcitonin (spelling?), something I'm going to try again.

The 'trouble' with T3 is that you have to multi dose throughout the day, I take 5 doses starting at 4 in the morning, but don't let that put you off!

Go for it with the GP, tell him about other peoples successes and ask for a trial at least.

Geraint.

[Diane333]

Hi some people with hyperparathyroidism have many but not all of the symptoms I mentioned. You can have this for years and not know about it until symptoms start to develop. Osteoporosis is a condition that will develop as the disease develops and you may have no symptoms of this. A DEXA scan would be done to check for osteoporosis but this would only be done if you had a high calcium blood test. If possible it is worth doing the bllod test early morning after fasting. The difficulty with this disease is you can have a normal reading sometimes so it is advised to have these tests done on more than one occasion, this is why the diagnosis can often be missed in non classical cases. In America there is much more awareness of the non classical cases but it is still difficult to get a diagnosis. Your low vitamin D, joint pain. sleep problems and Thyroid history are all symptoms of this. These symptoms can absolutely be caused by other problems but it is worth a few blood tests just to rule it out. If you get a test done and post them. Calcium, PTH and Vitamin D to be done at the same time early morning, I no expert but have been researching this for some time so could have a look at them for you.

[Val-55]

thank you for your kind interest,no I had not considered parathyroid disease,my father has spondylitis and I have always thought joint pains were possibly that ,Dr says no !, I have made an appointment will write things down and try and get some more tests to try and iliminate some things.Thanks again Val

[Diane333]

For info only -

Some Symptoms of Hyperparathyroidism. It is not common but often misdiagnosed.

Fatigue

Muscle weakness

Palpitations

Bone pain

Joint pain

Difficulty concentrating

Difficulty sleeping

Memory problems

Feeling depressed

Feeling anxious

Eye problems

Abdominal pain

Nausea or vomiting

Heartburn

Constipation

Frequent urination

Nighttime urination

Kidney stones

Fractures

Thinning hair

Headaches

[Mystory4u]

Hi Val-55,

I had terrible muscular pain, stiffness and cramps as well as fatigue and take a magnesium supplement called muscle soothe that also contains other ingredients that help you to absorb the magnesium and support recovery. (These supplements can be obtained from shops that sell sports drinks and sports supplements as well as health food shops.). The magnesium supplement has made a huge difference to me. I take I teaspoon dissolved in water twice a day. It's a pleasant citrus tasting drink when made up. Taken before bedtime is most effective and aids sleep. I also take a good brand of fish oil, I teaspoon on my food or in a juice a day - you have to get a reputable brand (get the help of a really good qualified naturopath and get the brand she recommends and keep it in the fridge away from light) - not all fish oil brands are equal. I also have to supplement iron, 10mg a day in liquid form that is in my cranberry juice on an empty stomach at least 4 hours away from when I took my thyroxine or it will prevent absorption of the thyroxine. I take 50,000 (yes that's fifty thousand)ug of vit D in capsules once a month (a daily dose doesn't help me much but a big monthly dose does) - my GP gave me a script for this and I have to get it filled by a compounding pharmacy every six months. Like you I have Hashimoto's. I take 600ug of levothyroxine T4 a week (100 x 5 days and 50 x 2 days). I encourage you to seek out a really good naturopath or integrative physician (a GP who also uses naturopathy and complementary medicine etc) to help you get the right supplements, dietary advice and lifestyle support. I imagine that you don't drink alcohol or smoke tobacco - if you do you need to get help to give these up before you can recover.

I wish you well and hope you return to a pain free life quickly. (I had terrible cramps that paralysed my limbs and hands before starting the magnesium so really encourage you to try this ASAP.)

Mx

[Val-55]

Thank you for you very interesting reply , yes I will certainly try the magnesium, and I have already started on vit d and have a good fish oil.No I don't smoke ,and only occasionaly drink because I find it makes joint pain worse.I have alot to think about here from all you kind posts ..I will let you know how I get on.Val x