All over joint pain

Hi there

I am new to the forum and found you after many GP and specialist appointments, blood tests, nuclear bone scan, MRI scan, ultrasound scan, private Endocrinologist appointment ... all of which have told me that there is absolutely nothing wrong with me, and all my results are within range! I am 49 years old and have been experiencing extreme joint pain all over my body for at least 18 months, in particular shoulders and hips but also elbows, wrists, knees, thumbs ... it makes me feel about 80 years old so I know something isn't right!

I haven't been able to get my T3 levels tested despite many requests so I am about to get blood tests done through Blue Horizon - as suggested on this forum. Is it possible that I am not converting and need T3?

I have also read an account on here of someone with side-effects due to a particular brand of Levothyroxine? I currently take 125mcg per day, of which 100mcg is 'Actavis' and 25mcg is 'MercuryPharma'. I have a vague recollection of the taste of one of the tablets changing (MercuryPharma) maybe 2 years ago ... Is it possible that these symptoms are a side-effect of the tablets themselves? I am not aware of being intolerant to lactose or sodium. I have been taking Levothyroxine for approximately 10 years.

If anyone has any ideas of what might be causing the aches and pains or can make recommendations for treating these symptoms I would really appreciate it. Ibuprofen and paracetamol don't touch it, however the GP prescribed Diclofenac which does help, however I can't take that all the time.

The only other symptom I have really is that my mood is often quite low which makes me irritable and bad-tempered!

Please help!

13 Replies

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  • How are your levels of B12 - Iron - Ferritin - Folate - VitD ???

  • Hi März

    All of the above were tested when I first saw the GP, almost a year ago now:

    Serum vitamin B12 level (XE2pf) = 343 ng/L (200.0-900.0)

    Serum ferritin level (XE24r) = 12ug/L (10.0-320.0)

    Serum vitamin D level (XE2e7) = 69 nmol/L (Adequate 25-hydroxy Vitamin D)

    Serum folate level (42U5) = 8.55 ug/L (4.6-18.7)

    Haemoglobin A1c level - IFCC standardised (XaPbt) = 36mmol/mol (20.0-42.0

    My GP put me on Iron tablets for a short time after these tests which improved my energy levels but had no impact on the joint pain.

    My last 3 Thyroid function tests are as follows:

    Dec 2014 TSH = 0.18 (0.3-4.5) free T4 = 18.9 (10.0-22.0)

    Feb 2015 TSH = 0.35 free T4 = 17.7

    April 2015 TSH = 0.57 free T4 = 18.7

    As that is the last time I was tested, this has reminded me to go to my GP to ask for them to be re-tested :-)

    Any clues in all of this detail?

    Many thanks!

  • Hi Maria

    Sounds like your T3 maybe low, you may not be converting T4 to T3, if that's the case then it's a good idea you are having T3 measured. I had extreme joint pain, no fun at all when I was on my feet all day at work. I did the Urine T3 test, which showed hardly no T3 at all, so I bought T3 from Mexico, and since then my pain has disappeared.

    Hope that helps, keep us posted

  • Oh Dear ! Typed loads then lost it ! B12 is very LOW and needs to be around 900. Anything below 500 will present with Neurological symptoms. VitD only halfway and needs to be higher. Ferritin needs to be around 90. Folate OK.

    Treatment suggestions - Take 5000mcg of B12 Jarrow Methylcobalamin - keep under tongue until dissolved. Also take a GOOD B Complex to keep all the B's in balance. Go back to the Iron treatment with VitC to aid absorption. Take at least 5000 IU's of D3 - it is fat soluble so eat with main meal or good fats. Also take VitK2 to keep calcium going to the right place.

    B12 and VitD will so help with your low mood as well as aches and pains !

    grassrootshealth.net To convert your D reading to match this website - divide by 2.5 - which is 27.6 - so you are LOW.

    b12deficiency.info/signs-an...

    Everything you need to know in the above link about B12.

    Do not expect your GP to agree with my comments - just knowledge gained from this forum and various books and websites - and of course my own experiences. I am not a medical person - click onto my name and read my edited Profile....

  • Thanks Marz - you have certainly given me some things to think about!

    What do you mean by a GOOD B Complex? And where would you recommend sourcing these vitamins from - Are Holland & Barratt on the High Street good enough or should I be looking on-line (assuming my GP doesn't offer to help!)?

    I have ordered the Blue Horizon blood tests today and will go armed with all of this when I see GP again in a week or so! :-)

    Thanks again for all the info.

    M.

  • It was suggested to me on this forum to take Thorne Research B complex - yes I buy on-line as I live in Crete. The B Complex I have suggested contains Methylfolate - which is natural - instead of Folic Acid which is synthetic.....

    I can only assume that as Holland and Barrett products are quite cheap that they contain lots of fillers. Only a guess. Certain products from there will be fine. I do honestly think it is worth paying for good quality.

    Hope all goes well for you - do post your results in a new post when you receive them - am interested ! What are you having tested ?

    There are loads of different VitD on-line too - just go with the one you feel good about. You can also buy D sprays that also contain VitK2

  • Thanks for the advice re buying online ... I guessed that would be the case!

    I've gone for the Blue Horizon 'Thyroid Check PLUS TEN' which includes TSH, FT4, FT3, TT4, Thyroid Peroxidase Antibodies, Thyroglobulin Antibodies, Ferritin, Folate, B12, C Reactive Protein ... the only thing it won't give me is VitaminD so I'll try to get the GP to test that again for me.

    Will keep you posted!

    M.

  • if you want to get vitamin D done privately, it can be done with a finger prick test and it isn't outrageously expensive :

    vitamindtest.org.uk/

    betteryou.com/vitamin-d-tes...

  • Straightforward Compound vit b from Boots or any pharmacy is fine but you also need to take the jarrow b12 one too

  • sorry to be brief - too brain foggy. read my earlier posts.try stop taking levo. You sound like where I was. After two days my muscle pains eased. it won't kill you - sorry i'll rephrase that - it didn't kill me.

  • Thank you! I never occurred to me that I could prove whether it was the Levo by stopping taking it for a while! 😝 I'll do that when I have a quiet couple of weeks coming up in case it makes me tired and / or other symptoms occur.

    Many thanks, M.

  • I hit rock bottom when my GP was on holiday. At least I had an excuse for acting without consulting. I had had an MRI, lumbar puncture etc. I was off levo for a couple of months before my GP arranged for bloods and accessed an endo for advice. It was interesting to find out what hypo symptoms really are. I was exhausted but not in pain and felt good because of that. Heaven knows whether I did any internal/long term damage.

    With hindsight I should have seen the GP after a week or so. As soon as I was confident that I felt improved off levo. Because you will need alternative treatment. My TSH went to 65 and then 98 before being prescribed T3. I think I'm just not good on drugs. No pain with T3 but still no joy/balance/life. Good luck!

  • Levothyroxine and even t3 can cause intense joint and muscle pain

    My husband our daughter and all 3 of her daughters cannot tolerate any brand of levo or t3

    They are only pain free on NDT its easily availble pm me for details

    If you live in Reading you wont get an ounce of help from any of the consultants they are all clueless

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