Been on thyroxine for abt year and half feel terrible am on 100mg a day moods swings are awful but its because am in pain constantly.

[linda0944]

My joints ache all the time find it difficult to walk sometimes, went doc just give you pain killers no answers to cause. I now went to another GP he's says he thinks it rheumatoid athritist waiting on bloods coming back can i ask to see blood results can't go on like this.

[Hidden]

Hi - sorry you are having these troubles. I'm hypothyroid and have Rheumatoid Arthritis and if you do get diagnosed you could find the RA HealthUnlocked and NRAS do give out very good information.

You need to know that blood tests don't always show positive results for rheumatoid factor and nor does every person with RA show inflammation in their blood - but about 70% do. If you have negative results but are still in pain then I suggest that you push your GP to refer you to a rheumatologist ASAP - if he or she doesn't anyway. Only a rheumatologist can diagnose RA or any other type of autoimmune arthritis.

You could ask for a print off of your blood test results but they may not necessarily make things much clearer to you because there is rarely anything black and white about these inflammatory arthritis diseases. Getting an early diagnosis is very important though. Join NRAS and look at their information and learn as much as you can so you can push for a quick diagnosis. Good luck. Tilda

[PinkNinja in reply to Hidden]

Can I just ask; does your RA get worse when you are not properly medicated for your thyroid?

Carolyn x

[shaws Administrator]

Hi Linda

Your complaints are not uncommon. If you can please get a copy of your latest thyroid gland blood tests complete with the ranges, post them on another question. If you haven't had one recently, request one from the GP plus Vitamin B12, Vit D, iron, ferritin and folate. You sound undermedicated and hypos are usually deficient in the first two.

I had severe pain shortly after beginning treatment and it got worse and eventually it was whole body stiffness/pain and could only shuffle. I am fine now. The GP had no clue. If we are not on optimum meds (as they believe when your bloods come back 'within normal range') they don't increase medication. If you complain of other problems they say 'it's nothing to do with thyroid gland' and prescribe for the additional symptoms but don't think/know to increase your thyroid meds.

Post your results and someone will comment upon them. Always ask for a copy of your blood test results and keep for your own reference.

[linda0944]

Thank you have you got painful lumps on your joints as I have was just wondering if this is part of it.

[shaws Administrator in reply to linda0944]

No, I didn't so your GP may be right in checking for RA.I

[PinkNinja in reply to shaws]

Agreed! You may not get a positive test the first time. If it comes back negative but your symptoms persist you will need to have another test next year. It can take a long time for the tests to be conclusively positive for RA. I am having annual tests although my joint pain and stiffness had improved somewhat since switching from levo to NDT. I still get occasional 'flare-ups' though that feel like having a head-cold in my joints, if that makes sense, along with the pain and stiffness. It also still takes about an hour to be able to move properly in the morning.

[Hidden in reply to PinkNinja]

I did ask a GP recently if she would check my T3 because I was experiencing a lot more stiffness and had met someone (who ONLY had thyroid problems) who advised me to check this out asap as she was also struggling with stiffness and aches in the morning when her T3 was too low. The GP said quite an adamant no to this request! In our area they only test for TSH (is that right?) and and T4 and they take their advice from the senior Scottish consultant Endo. She felt that, as I've been taking an immuno suppressant Disease Modifying Antirheumatic Drug (DMARD) for 18 months since diagnosis it was probably the recent drop in dose, due to side effects. She phoned later on and told me that my ESR was up high again and this would seem to confirm that my increase in stiffness and aches was due to the lowering of the dose of injectable Methotrexate.

I am never quite sure that I really have RA despite a positive Rheumatoid Factor and high inflammation markers plus symptoms and a diagnosis - whereas I never really think much about my hypothyroidism but just take the levo and assume it works.

But the idea that I might be having problems with my T3 and also be Vitamin D deficient has cropped up in my mind and I plan to ask my GP to test for Vitamin D tomorrow when I have my monthly bloods taken. I also take 100mg of Levo. Would a deficiency in T3 cause similar symptoms to RA even if T4 and TSH (?!) were coming back okay? And would a deficiency cause the sedementary rate (ESR) to rise in our blood or is this really an RA matter as my GPs seem to believe? Thanks and sorry to hijack this post a bit Linda. Tilda

[PinkNinja in reply to Hidden]

A lack of T3, or even too much T4, can cause similar symptoms although not as bad, I don't think. I have a friend with RA and it is very much worse than I experience.

I have to be very careful about my T4 level. If it is too high my joints are much worse. This can apparently be caused by something called pseudo-gout. It could be contributing to your symptoms perhaps, along with your RA.

I found a good improvement when sorting out my vitamin D deficiency. This might be part of the equation too. As I don't ever seem to completely get rid of my joint problems, I do wonder if my doctor's initial suspicion of RA was correct and that I just haven't tested positive yet. I notice red areas around my knuckle joints (hands and feet) when they are sore. Luckily the pain isn't nearly so bad lately

Some people find their ESR does raise when they have a hashimoto's flare-up.

It does sound like you do have RA if you are needing the drugs you have to take but I did wonder if you found your thyroid could make it worse at times. It sounds like you might have a combination of things. It would be good if sorting your vitamin D out helped with your RA too so you could reduce the dosages of your RA drugs.

Sorry I couldn't be much help. It's a bit of a mine-field isn't it?

[Hidden in reply to PinkNinja]

Yes a minefield describes it pretty well thanks Carolyn. I was diagnosed as hypothyroid by my GP about 12 years ago and have been fine on varying amounts of Levo for all that time. I have had to choose, quite flakily I'm afraid, whether to trust my two GPs to treat me properly or read up and find out more about my thyroid condition. I chose to trust them both because it's too exhausting not to and I like both of them in different ways. They have become like friends in a sense.

There just isn't the time in the day to research everything because I work too and have teenagers and dogs and two different autoimmune conditions to manage. I found RA to be really pretty excruciating at it's worst and when people describe general arthritis symptoms to me now it's like a different ballgame entirely. But I haven't been in excruciating pain myself more than a dozen or so times - and each time has lasted a day or two and been brought under control by NSAIDs or steroids (with great reluctance). I do have Osteoarthritis too - which seemed to arrive shortly after the RA in my case - but then I had quite an early menopause. So now my pain is all relatively low level and it's hard to distinguish between RA and OA.

My ESR is all I have to go by really so I rather optimistically use this one to determine RA disease activity and the rest gets forgotten about. But as I can't tolerate the main RA drug, Methotrexate at a higher dose now - I have come down to the highest amount I can bear and have dropped another DMARD (doctor's decision) and failed a third. So this week coming I'm having my DAS taken (disease activity score) and my consultant, whom I haven't met with for over a year, will decide whether I qualify for the next, extremely expensive and quite scary tier of drugs called Biologics.

I personally don't think I will qualify and if I don't I need a fallback plan. So Vitamin D test and finding out more about thyroid disease and management are possible next goals if I can persuade my GP tomorrow (and he's a cautious type who believes I do have RA and blames most of my problems on this) to take my vitamin D then I will feel I'm getting somewhere at last. I also seem to have very high blood pressure just now despite being a stickler for daily workouts and eating very healthily and trying to keep weight off. It's good being holistic sometimes but it can get me into the most awful muddle!

So don't assume RA is always excruciating - sometimes it can be low level throbbing and flu like aches and stiffness and if left to it's own devices it can gnaw away and do a lot of damage so I'm endlessly told. My fingers are doing quite whacky things these days and I'm always looking for other things to blame for this but we will see what the rheumy says on Thursday about them.

Perhaps I'll come here more often now HU has changed and you can advise me on your area of expertese (thyroid stuff) and I will try to help you about RA too if you want me to?

Knuckles are always a bit of a tell tale RA feature I feel so do keep pushing - you may well have sero negative RA that is slow acting and quite mild for now. Only a rheumatologist can work this out though. Tilda x

[PinkNinja in reply to Hidden]

Thanks for all this info. I have had severe pain in my knuckles, knees, hips and feet that reduced me to tears a couple of times when walking to collect the kids from school. It did get much better getting my thyroid and vitamin D sorted out and has been much more mild recently. I can certainly walk easily again, although turning over in bed is hard work for some reason! I know what you mean about the low level flu aches. I always describe it as a head-cold in my joints.

Luckily I don't seem to have nearly as much trouble as you but I will keep an eye on things and push the doctor if I notice it getting worse again. I am only 40 (only 40?) so if it gets bad again I know that's not right and will ask for a referral.

I hope you get the treatment you need and your vitamin D test. The trick with vitamin D is to not increase it too quickly. It will help the inflammation but raising too quickly could cause the disease to progress more slowly. The best thing is to get plenty of sun and supplement with relatively low doses if you need to, especially during the winter. Best to get tested first though to make sure you actually need to supplement.

I'm glad you're going to stick around. I like forums like this where we can all help each other

Take care and I hope your treatments help.

Carolyn x

[Hidden in reply to PinkNinja]

Hey youthfulness is all relative Carolyn! 40 seems very young to me because I've recently turned 50 - but then compared to some people on the NRAS HU I feel quite young. I was diagnosed with Hypothyroidism when I was 38. I'm not the sort to lie down and accept things but somehow I did with my thyroid? I think I just thought that it might help me lose weight if I took Levothryoxine and I had three young kids and needed energising.

With RA I've thrown myself into researching the drugs (well they are in a league of their own!) and the implications and am doing volunteering and stuff so I do really know quite a lot about it now. I'm not even quite sure what an underactive thyroid is and I certainly haven't a clue what my blood markers for T4 or the other thing are. I'm getting print outs of my bloods this time for the impending rheumatology appointment so will ask them to put my most recent thyroid figures on there too so I can ask what they mean. I do trust my GPs to look out for me and they do tweak my Levo sometimes - usually down the way lately.

I think the thing that worries me most about RA, apart from the heavy duty drugs, is the systemic damage it can do. I think any trouble turning about in bed suggests inflammation to me and for that you do need some medication but please don't just put up with low level pain for too long. RA can go in stages and your symptoms do concern me. Why don't you just ask for a referral from your GP and see what the rheumy says anyway?

Tilda x

[PinkNinja in reply to Hidden]

I will do. Thanks

[tegz in reply to PinkNinja]

Carolyn- have you ever had a Serum Uric Acid test for gout?

[PinkNinja in reply to tegz]

I did when he did the RA and lupus tests. It was not gout. I think some of it is pseudo gout as it is worse when I am taking too much T4.

[tegz in reply to PinkNinja]

That is interesting. I've just had a gout attack after starting in T4- but to cloud the issue I did have to change meds due to non supply of old one. The new one is potentially more effective and can stir up old sites when first used. I blamed this - but now not so sure.

If you have your old figures check to see if your SUA was anything over 350 umol/l -if so it could be enough if you have the disposition for gout [hereditary, with RA].

Once triggered the SUA needs to be much lower to be safe. Much higher levels are no problem- IF you've never had an attack- but you may not realise this has happened.

I've done more research on Gout than UAT- but catching up fast!

[PinkNinja in reply to tegz]

Thanks. I'll look into it, maybe get another test

[linda0944]

Thanks everyone will let you know how I get on just had a real bad few days hate moaning I know there are people a lot worse than me, but the pain drags you done a bit and when walking is so bad it worries me. Xx Linda

[Hidden in reply to linda0944]

I'm not surprised you are worried but this really is the worse stage that you are at if you do have RA. X

[sherryleez]

Hi Linda, I had the same problem with severe muscle and joint pain shortly after starting thyroxine a couple of years ago. I was in agony for months until I read a response from someone in the forums that was recommending magnesium to another person in the same situation. I bought MAGNESIUM CITRATE from Holland & Barratt's and that solved my problem. There are different kinds of magnesium, but it you buy it get the magnesium citrate one as that is fast acting and quickly absorbed into the areas of the body that need it most and is good long term, unlike epsom salts which are very short lived.

[linda0944 in reply to sherryleez]

Hi sherry lees thank you for the reply I will go tomorrow and get some thank you.