Many symptoms, lots of tests so far and nothing found, feeling lost

[MsWhistledown]

I am new to this amazingly helpful and friendly site. I have already posted on Thyroid and received some really helpful responses and advice.

I am posting on RA as well as Thyroid because latest consultation with GP has led to her sending me for autoimmune testing predominantly Rheumatoid and Thyroid PO.

Symptoms: insomnia, aching legs (knees and ankles painful) aching feet(keeps me awake at night) restless legs. Digestive issues (constipation, acid reflux, pain). Dizzy spells, fatigue, brain fog, itchy skin and scalp (no rashes). Weight gain especially around the middle and difficulty losing weight (never a problem in the past).

I am finding that it is taking me much longer to recover from exercise, it exhausts me and my muscles are hurting for longer afterwards. I sometimes have slight swelling in some of my fingers with pain and itching. This comes and goes.

I have a strong family history of under active thyroid and rheumatoid arthritis.

Are any of these symptoms usual for RA in your experience? My sister started getting symptoms in her mid 40’s and I recall her getting some of these symptoms. She was misdiagnosed for many years and I fear this happening to me.

Any advice would be greatly appreciated.

Thank you 😊

[JenniferW]

Hi Mrs Whistledown

I have both RA and an underactive thyroid and I have or had a lot of those symptoms.

Quite a few of those symptoms are common for an underactive thyroid. Mostly they can be resolved by levothyroxine. Insomnia, fatigue, weight giain and brain fog are classic symptoms

The digestive difficulties could be from the thyroid problems, the administrators on the Thyroid UK site will be able to give you chapter and verse, but the simple version is that an underactive thyroid causes your digestion to work poorly. You then absorb fewer vitamins and less iron. This then makes your thyroid work even less well! It's a vicious circle.

The tiredness is a symptom of both an underactive thyroid and rheumatoid arthritis.

The pain in your hands and feet are classic symptoms of rheumatoid arthritis.

Both these problems are caused by your immune system overreacting and attacking your body, that's why you've been hit by them both at once, they are related conditions..

If you haven't already done so pop your blood test results onto the Thyroid UK site, they can give you advice.

It's a bit more complicated with Rheumatoid arthritis as there are many overlapping autoimmune conditions and you need the rheumatology consultants to advise you.

When you get to the rheumatology appointment they will do a further set of tests and start treatment according to exactly what they diagnose you with and how severe they class it to be. There are many treatments for RA but they vary in cost and side effects, so it's a bit of a case of try treatments and see how you react.

Best of luck

Jennifer

[MsWhistledown in reply to JenniferW]

Hi JenniferW,

Thank you so much for letting me know your experience of symptoms and advice. It helps to feel I am not alone or going mad.

Awaiting testing and then test results both Thyroid and RA and will post back here for invaluable feedback.

Thanks again.

[Deeb1764]

the list can be endless with autoimmune i have Ra with lots of other add ons plus fibro and now being checked for heart and lung issues.

Wait till you get a CRP Ra test done as googling will lead you down many wrong paths and if RA this site will help immensely as will NRAS.

The wait for a diagnosis can be hard I have been waiting 6 months for my Papworth heart day but it has finally arrived tomorrow and hoping some form of diagnosis is coming.

[MsWhistledown in reply to Deeb1764]

Thank you Deeb1764.

I wish you lots of luck for tomorrow and hope it all goes well for you. 🍀

[Neonkittie17 in reply to Deeb1764]

Thinking of you. 💗

[janmary in reply to Deeb1764]

Best wishes for today’s appointment

[Runrig01 in reply to Deeb1764]

good luck with your appointment, hopefully you’ll get some answers 🤗

[Neonkittie17]

I hope you find out what’s going on and can feel better soon. Nothing to add but hope your consultants can run some tests and if RA or thyroid you can get started on meds to get it under control. 🙏🏻

[MsWhistledown in reply to Neonkittie17]

Thank you Neonkittie17 🙂

[AgedCrone]

If I understand you correctly you have no diagnosis yet …..so why not wait until the results of the tests your GP has organised come back and then you will find out if you will need any treatment?

I’m sure the symptoms you mention ring lots of bells with those diagnosed with RA……but they will also resonate with other Auto immune conditions.

If you need further tests I’m sure your GP will arrange for you to see a suitable Consultant.

[Sammie48]

Hi

I was diagnosed in my 20's with hypothyroidism. I slept for 18 hours a day , dry skin, hair fell out , erratic periods and weight gain.

Fast forward to 2019 and i developed fast onset ra.

The fatigue is awful although not as bad as with the hypothyroidism. Unfortunately most of my joints are damaged.

What blood tests have you had for hypothyroidism? I have my fsh, t4, t3, free t4 tested by my endocrinologist. What tests have you had for ra ?

[MsWhistledown in reply to Sammie48]

Hi Sammie48.

Sorry to hear about your experience with both diseases.

I have only recently had my test results printed and found out I have only been tested for TSH. It has come back as GP stated as mildly elevated and the GP didn’t want to test for another year. Since being on this site I have found out that I need full testing on my Thyroid to actually find out if I do have a problem with it. So I am most likely going to get that tested privately. Recent consultation with a different GP suggested that the slight elevation in TSH wouldn’t cause all my symptoms and my thyroid would be compensating for it. However, she has sent me for the antibody test on my thyroid as well as RA and autoimmune tests. They will take place next Tuesday.

I am hoping that I don’t have RA and I do suspect that the culprit is my Thyroid. I have a strong family history of under active thyroid.

[Sammie48 in reply to MsWhistledown]

Not sure your age but perimenopause can cause very similar symptoms to hypothyroidism but i have no relatives who have hypothyroidism so not always hereditary as with Ra. Testing privately for hypothyroidism can be dangerous. Levothyroxine is not always the cure too which is what most people are lead to believe. Vitamin d should be tested which can cause some of your symptoms also such as joint pain.

[MsWhistledown in reply to Sammie48]

Hi Sammie48,

I am in my early 40’s and I’m considering perimenopause as a cause as well. However, my GP is not very helpful with this, has said I’m too young, done hormonal blood tests in the past that came back okay according to them and didn’t want to know anymore. Even though I know that blood testing for menopause is not helpful, especially when perimenopausal.

This is why I am feeling I am being pushed to go private.

Going to see what results come of tests next week and take it from there 🙂

[Sammie48 in reply to MsWhistledown]

I was 40 when i started with perimenopause do not too early. There is a list of symptoms for perimenopause on the net so maybe listing all your symptoms before you see the doctor may help. Good luck

[Angels54]

Hi, I have underactive thyroid and have had all of the symptoms you are describing, I’m now on biological , I still have pain everyday but I think that’s normal , we want to do the things we used to do and end up suffering the next day , keep pushing forward to get sorted 👍

[MsWhistledown in reply to Angels54]

Thank you Angels54 🙏

[medway-lady]

I think there are 2 things 1, Hashimoto’s disease which is auto immmune, and 2 RA and you may have that as auto immune or you have a thyroid just wearing out and RA but don’t test positive. It’s very confusing so I’d advise trying not to worry and wait for the thyroid results. I also stress thyroid is easily treated and I’ve been taking thyroxine for over 30 years without any issues. Your GP is correct as you may have normal T3 and T4 but bad TSH and that is not part of the normal NHS blood screen.It is best to leave this to a doctor as too much thyroxine can cause heart issues. It might also be low B12 so try to be patient and even if you test positive for Hashimotos and / or RA then both are conditions that once diagnosed are treatable. X

[Sammie48 in reply to medway-lady]

Hi

I think that you have made a sweeping statement about thyroid testing. My endocrinologists do test me regularly for t3 , t4 and tsh. Too much thyroxine causes palpitations but not permanently but no thyroxine can damage the heart permanently as it beats too slow. This can lead to a coma and potentially death at the worst case scenario. Too much thyroxine can cause oesteoporosis.

[medway-lady in reply to Sammie48]

No I didn't I simply said that the NHS doesn't check for all thyroid functions ask your GP if your in the UK. And yes it can cause heart issues again ask your GP, which is why you won't get it unless its needed someone near here died from using thyroxine to loose weight as it caused a heart attack. And I'm fully aware of coma and death risk as I said been taking it for years and it's controlled but I still have regular blood tests to keep in the sweet spot. Hashimoto's is the disease tested for AI thyroid conditions so please do talk to your doctor.

[Sammie48 in reply to medway-lady]

Sorry think your confused. Im not cared for by my Gp but by my endocrinologist in the Uk. Ive had hypothyroidism for 23 yrs and see my nhs endocrinologist approx 3 times a year. My endocrinologist is a teaching Professor and has an Mbe and i trust her implicitly. Maybe you should speak to your doctor or gp as there other medications that help with diagnosed hypothyroidism so ive no need to speak to my Gp as i can just text my Nhs Endocrinologist

[medway-lady in reply to Sammie48]

I have to say I’m not confused but your post which was addressed to me following the original post has caused the confusion as I said to the OP to talk to GP, frankly it is usual to see an endocrinologist for the relatively common thyroid issue. So please do not cause any more confusion whatever your opinions about thyroxine it is prescribed to a great many people by their GP’s and I am one having Hashimoto’s Disease an AI disease.. Perhaps then I should just say ask your medical professional?

[Sheila_G]

I can verify what Jennifer is saying as I too have RA and an underactive thyroid. I have all the same symptoms. I have had RA for 21 years and Hypothyroidism for 40 years.