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RA, Fibro, thryoid or just plain madness?

(20 Posts)
itwillbebetter Wed 17-Jul-13 17:36:41

I have come to the conclusion that it is just madness. Had results back from MRI and my spine is in great condition. All my joints have been ultrasounded and no arthritis seen. No abnormal bloods apart from initial c protein elevation and very high ferritin.
They keep telling me that my tsh, t4 and t3 are 'normal' even though I could attribute most of my symptoms to underactive thyroid. I understand that normal is however not optimal!

Rheumy has now mentioned fibromyalgia however I have no muscle pain, no headaches and good sleep quality. The only time I cannot sleep is when my joints are flaring up and I can't lie down. I am on the maximum dose of anti- inflammatories and boy, do I know it if I miss a dose. They cannot give me a reason as to why my nails have changed so dramatically and because the ridges are vertical they are not worried. So now I am left with being on anti inflam's until review in Sept, with the general consensus being to wait and see if anything happens.

I am obviously very glad that they have not diagnosed me with any of the big 'nasties' however I feel very much in limbo and although the meds are making me feel much better I am still not pain free and have to adjust my life on a day to day basis.

I just don't know what else to do. sad

RockinD Fri 12-Jul-13 13:29:45

GP should not discount thyroid when TSH is at 2.3 on TSH alone. The TSH test is notoriously unreliable. Did they do FT4/FT3 this time?

Also, you have some classic hypothyroid symptoms (incuding those nails) and the fact that there is no inflammation seen does make me wonder.

sorry didn't read right.sounds like psa.when I had inflammatory changes noted on mri suddenly things started moving along treatment wise.

did the rheumy mention psoriatic arthritis it's a "seronegative" condition so generally inflammatory markers not as raised as ra etc. nails and skin lesions are what are making me think of it.I have psa and no skin involvement.

itwillbebetter Thu 11-Jul-13 18:03:39

Just to update - have had thyroid levels checked again and the tsh had come down to 2.3 so Gp discounted that.

Have seen rheumatologist and had ultrasound - no active inflammation seen. Blood tests are now normal for everything, crp back to "normal" no rheumatoid factor. Has done a host of other bloods which are not shedding light on anything. Still feel bloody awful and have progressed from naproxen to Arcoxia and am now on 2gms of nabumetone daily. If I am late with a dose I can feel the pain creeping up instantly. My nails have gone weird - they are a strange square shape with loads of vertical ridges and feel like they have been sand papered. I have just had an MRI for my spine as Consultant has an inkling of spondyloarthropy with entheosis? I also have small patches of possible psoriasis so guess there could be a chance of psoriatic arthritis.

I'm a bit bemused that nothing is showing in bloods and ultrasounds when I am in so much pain. I guess it takes a while to get diagnosis. Does any of this ring any bells with any arthritis people?

itwillbebetter Thu 16-May-13 15:56:30

Thanks for all the responses. Have been so ill this week with flu like symptoms and awful joint pain, no energy at all, been sick and terrible brain fog. My husband called emergency doctor on Sunday and I've been given naproxen which helped initially. Today I felt so low and in pain I cried down the phone to gp (how mortifying) and he's doubled the naproxen and given codeine to try and manage the pain until I see the rheumatologist on Monday. I'm so scared I think I'm loosing the plot. I have hours where I'm in total despair and then meds kick in and I think I've made it all up. I have no quality of life, I just lie on the settee drifting out of sleep trying to get myself together for the school run and ensuing chaos of tea and homework. So sorry to vent I just am on my knees with the never ending crapness sad

You have classic hypothyroid symptoms, alongside a raised crp and inflammatory markers could point towards autoimmune disease

It is also possible that you have a b12 and d3 deficiency so I would be getting those checked too

Ask for a referral to an endocrinologist ASAP, thyroid care is woefully lacking in this country and many many people are fobbed off with so called normal lab results when they are very sick indeed

catslave Tue 14-May-13 16:30:56

itwillbebetter - those are NOT good thyroid readings! Your T4 should be in the upper third of the range (12-24 in our area, so you should be 20 or above), and T3 should likewise be higher (range is 3-8 here). If you are having symptoms, go back again and ask for another opinion. Puffy morning fingers and joint pains are a big red thyroid flag....

zipzap Tue 14-May-13 12:45:31

There was an article the other day about how they have discovered that some incurable back pain (which doctors, as they hadn't been able to cure it, had put down to the fact these patients were wingers, hysterical etc) could be down to a bacterial infection and can be significantly improved by a course of antibiotics.

the bacteria responsible was the one also responsible for acne; the thinking goes that these people managed to get the bacteria into their bloodstream from where it ended up in their backbone and slowly developed little colonies. HOwever, whilst they were harmless in some respects - ie no immediate obvious temperature, rashes, sickness etc - so you didn't know this was happening, one of the things they did was leach calcium (?) (sorry, can't remember exactly what but the gist is the same!) from the bones to support their function and by doing this, they slowly weakened the bones, which then became painful.

When they tried antibiotics on a group of these long term back problem patients, it worked for a very significant number of them. Didn't cut the pain completely but reduced its severity and they went from being in pain for 18 hours a day to 2 hours a day.

It's one of those leaps of medical science, a bit like when the chap in NZ realised that the majority of ulcers were caused by an infection - completely goes against what medicine thought at the time, but soon became recognised as right and he got a nobel prize for it.

Sounds a really weird thing I know - and I know your pain is beyond just back pain - but might be worth digging out the article and taking it with you to the doctor or consultant when you go next to see if they think that it is worth taking a course of antibiotics to see if it would help. Long shot - yes. But would be fantastic if it worked or helped!

Good luck and hope you feel better soon.

Pandsbear Tue 14-May-13 12:20:09

Hi -I think that you probably could do with some more anti-inflams. You really need to take them regularly to see the most benefit. Stabbing pains in knees and wrists are not good things to be having. At worst the anti-inflamms won't help you in which case you won't be any worse off (but my guess is that it will lessen some of the pain).

itwillbebetter Fri 10-May-13 09:39:18

RockinD - I have had t3 & T4 checked and I think it was normal 4.3 and 14 respectively. Also parathyroid hormone? was normal at 5.31 so taking these readings together I'm not sure whether it indicates a thyroid issue or not?

dsmama - I can't remember exactly what antibiotics I had after the op but I'm sure I had a fair few as I had a complication with surgery and had to have a catheter for an extra 5 days. Its something to look into, thank you

RunnerHasbeen have just googled polymyositis and I'm not sure it fits? I certainly have no thickening of skin on my hands.

crashdoll - No, I'm not on any pain medication at the moment, although naproxen helps when my feet are really bad. Ice helps with my feet but yesterday I had to wallow in a warm bath because I felt so stiff, almost like I was coming down with flu? My arms and back ached so badly I could hardly move them. I also found I couldn't think clearly and had trouble putting a conversation together. But today I feel better, just got stabbing pains in my knees and wrists. (changing gears whilst on the school run was interesting!)
I fear I am actually just plain bonkers!

crashdoll Fri 10-May-13 08:07:52

Just throwing it out there - I have RA and my inflammatory markers can be high when I have no visible swelling and feel relatively fine and low when I'm visibly swollen and in agony. I don't trust bloods for autoimmune conditions and you need a good clinical to see the whole picture, so it's good you've got referred to a rheumatologist. I'd also insist on more thyroid tests and then ask for an endocrinologist referral too.

Are you taking any pain medication? Also, do you find any relief from ice or heat? I was told general rule is ice for swelling and heat for stiffness but my physio who specialises in rheumatology said to go for whatever gives you relief.

Good luck!

dsmama Fri 10-May-13 07:16:29

I'm asking about antibiotics because after I had a lot of them I developed the same symptoms as you (though not as severe). GP wasn't very interested so I went to a naturopath who diagnosed (through blood tests) gut dysbiosis and leaky gut syndrome brought on by antibiotic use. He is treating me for this and, for now, I am on a very restricted diet to support the treatment, and I am recovering. These syndromes are known to be connected to the development of a wide range of auto-immune disorders, eg RA, fibro etc, so should be taken seriously. Good luck!

dsmama Thu 09-May-13 18:03:11

Poor you it sounds miserable! Did you have a lot of antibiotics after your hysterectomy?

RunnerHasbeen Thu 09-May-13 15:25:27

I have RA, diagnosed at 20 so wondering how old Caja must be?

If it was RA I would be surprised at how low your inflammation levels are compared to the level of pain you are experiencing. For RA it tends to be the inflammation causing the pain, so even when I am completely controlled and pain free my CRP hovers around 15 and shoots up to 60-90 when bad. I also don't have a problem with my muscles and lifting things, not quite in the way you describe. For me it is either impossible or too painful to lift things when a joint is swollen but it doesn't feel muscular and exhausting.

I think it sounds like the same family of conditions, and a rheumatologist is the best person to see. In my unqualified opinion, I would say it sounds more like polymyositis, which is more muscle than joint based. I have a cousin with this and given my background she started off assuming it was RA, but it didn't quite fit, much like your symptoms. We're both completely indistinguishable from healthy people now though, so there is hope for whatever the diagnosis turns out to be.

Perhaps ask to see an endocrinologist as well as the thyroid result is poor. There is no reason that having one condition means there isn't something else going on as well.

RockinD Thu 09-May-13 13:41:22

These symptoms sound horribly familiar and I would be suspicious of a TSH at 3.98, when it should be around 1 in a healthy person. You really need a full thyroid test, TSH, FT4, FT3, TPO and TgAB to assess what's really going on there, especially as you have some classic thyroid symptoms in that list.

Then there's the question of these inflammatory markers and your GP should really be doing something about those.

Time to go back and bang the table!

itwillbebetter Thu 09-May-13 12:24:03

CajaDeLaMemoria - yes our results are similar! Funny that you were told that you were too young for RA, my GP told me the opposite and said I was just showing 'old age' I'm 42 shock

Pandsbear - I have had antinflammatories before when my feet were so bad I had to crawl but I don't think I'm at that stage now. This is why I'm not sure its RA because from my understanding and from reading other threads on here the pain with RA seems very intense, but for me at the moment its bearable just a bit ouchy and wearing. Perhaps I'm in early stages and it will get worse if untreated? I just assumed I would have signs of massive red swollen joints, which I do not.

I have tried a few eye drops but will ask about the one you mentioned,thanks for that. Some days are worse than others and I have to wear glasses instead of lenses, which makes me feel even older!

The other thing that I forgot to mention is the sudden hypersensitivity to cold with my fingers, particularly the ones with joint pain. During the cold weather they throbbed so intensely the pain was almost unbearable.

Pandsbear Thu 09-May-13 11:56:13

CajaDeLaMemoria - I don't know how old you are but think you've been fobbed off a bit as you can (sadly) get RA at any age. I was diagnosed at 28 but prob had it for a couple of years before that (I am 41 now). I really hope your new rheumatologist is more helpful.

OP - I would say that lots of your symptoms are similar to my RA and associated problems I have (I have some secondary illnesses linked to my main diagnosis of RA). It doesn't sound like you are making things up and it sounds quite debilitating. Has your GP prescribed anything like anti-inflammatories or painkillers again for you before the rheumy appointment comes through? I think you sound like you need them again.

And you might find some eye drops are needed for your eyes as well - over the counter you can get a few but I have one prescribed called Hylo-Tear via the opthamologist at the hospital which has been the most successful . Can you stop wearing contact lenses for a while to see if that helps with the eye grittiness?

I hope your appointment comes through quickly - best wishes.

CajaDeLaMemoria Thu 09-May-13 10:36:22

I have this.

Exactly the same.

Unfortunately, it's not an easy fix. Results suggested RA, then I was told I'm too young. Got a fibromyalgia diagnosis, but they can't treat that, so it was just taking sleeping tablets and painkillers. Worked up to huge doses of morphine, before seeing a new rheumatologist who said it's not fibro, and that fibro is just a convenient catch-all diagnosis for the tougher cases.

I'm being assessed again now. Your results are striking similar to mine - Ferratin - 211, CRP - 15. No idea what my Tsh is, though!

I sympathise, but I don't really have any advice. All together, it feels so unbearable!

itwillbebetter Thu 09-May-13 10:25:29

Am I going mad or do any of the above seem likely? Sorry the background info is quite long but I'd be really grateful if anyone with any experience of the above could cast their eyes over it smile

Following on from a total hysterectomy 3 years ago when I was 39, I have been in various degrees of pain. Had to have secondary op to repair a trapped nerve and hernia and have not been 'right' since.

For the last 2 years I have suffered from achilles tendonitis and plantar fasciitis (both sides) that just will not respond to any treatment. I have tried stretching, icing, podiatrist has taped my feet, have had bio mechanical assessment and custom made orthotics, steroid injections (twice), courses of naproxen, acupuncture, ultrasound and osteopath/sports therapy massage. I never go barefoot and have thoroughly researched footwear. It was the osteopath who picked up that most of my joints seemed painful along with great hypersensitivity in many surrounding areas and I had quite a few other symptoms;

Sticky 'trigger fingers' permanently in 3 fingers and often in others.
Stiff slightly puffy fingers in the morning that take about 1/2 hour to loosen.
Various painful joints - knuckles, wrists, shoulders, hip, lower back, ankles and toes! They are not hugely painful, bright red or swollen, just an awful aching along with some numbness and tingling and shooting pains.
Extreme tenderness over some joints, almost as if someone is holding a blowtorch on my skin.
I find I cannot pick up a saucepan unless I use both hands and things like using the hairdryer makes my hands and shoulders ache dreadfully. I cannot put any great pressure on my wrists ie, lie on my side with my head in my hands or push up from a sitting position.
My knees have just started to get shooting pains when I get up from sitting or use the stairs.
I also have shooting aching pains in tendons near my wrists, ankles etc.
Dry gritty eyes (seen optician several times and cannot now get a comfortable contact lense)
Sore throat with lump on left hand side (this comes and goes on a daily basis)
Itchy shins and shoulders! It seems the itch is inside the skin iyswim!
Complete lethargy and my stamina seems to have deserted me completely!
No sex drive whatsoever
anxiety and general 'downess'
Night sweats about once a week.

Gp run some blood tests which flagged up some inflammatory markers;
Ferritin 192 (normal range of 13-150)
CRP 11 ( normal should be under 6)
sed rate is normal, antibodies not yet checked

Tsh 3.98 borderline underactive?

Somedays when I feel Ok I think I'm making this up but other days when my joints are stiff and on fire I think there's something going on. I'm on the list for rheumatologist appt but in the meantime any thoughts before I go insane!
flowers for reading the essay !

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