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Any advice ?

Posted , 6 users are following.

diane94845
diane94845

Hi,  I have been to the doctor yet again today with what I think are all the symptoms of hypothyroidism. Over the last 5 years I have had several blood tests which all come back "normal" and I have just put up with the tiredness, body pain etc.  Since my teens Ive had severe back / hip pain for which I have been given my body weight in painkillers.  I had xrays which found damaged discs so had a couple of injections which helped for a short while each time, umpteen courses of physiotherapy which I felt made no difference, was going to be put forward for surgery then discharged from the hospital clinic with no explanation despite asking why.  For the last 6 months or so (I think following a chest infection which turned into bronchitis) Ive felt the worst Ive ever felt - a "different" back pain, higher up on both sides which becomes worse when Im asleep along with leg pain, numb arms, joint pain especially in fingers - it even hurts to hold a pen or cutlery, constantly feeling cold, swollen feet, dry skin & hair.  Ive always had watery eyes - noticed someone else commenting on that.  Im going for blood tests on Thursday and am really hoping that something shows up so that I know Im not making it up because that if how Ive felt when Ive attended doctor or hospital before.  My Grandma had goitre when I was a child, my aunt had Sjogrens, and now Im thinking that my mum has something along these lines as she has had extreme tiredness and joint pain linked to arthritis for years, also had hip replacement 6 years ago then a a year later had seven stents insterted for a heart complaint but she really is not a "making an appointment with the doc" type and has to be forced to go! She is becoming extremely forgetfull and I am thinking the worst possible scenario that she has onset of dementia but it perhaps is a thyroid related situation instead. Any advice or information would be greatly appreciated.  Thanks very much  smile

2 likes, 30 replies

30 Replies

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  • Gizmo1963
    Gizmo1963 diane94845

    Posted

    Hi Diane, sorry to hear of all the pain you have endured over the years,?i too have 6 degenerative discs so know what the pain is like. I also have osteoarthritis and fibromyalgia and am thinking more than likely your mum has osteo too. May I please ask both of your ages? Have you seen a rheumatologist and has fibromyalgia been ruled out? Take care x
    • diane94845
      diane94845 Gizmo1963

      Posted

      Hi Gizmo, thanks so much for replying, yes I believe Mum does have osteo - she has just had her 76th birthday and I will be 50 in October. No, I've not seen anyone apart from GP's and hospital regarding my back over the years.  Blood tests all came back "normal" so really hoping doctor I saw today (female, older than myself) asks for tests for everything! Thanks again xx
    • wendy94915
      wendy94915 diane94845

      Posted

      Hi diane94845, hmm...I've heard that before, all results are normal...then I got copies of the reports myself...funny how some tests were not "normal" Get copies of the reports and look for yourself. Don't take their word for it. Keep going, it sounds like you have some thyroid problems, muscle aches, tendonitis, Carpal tunnel syndrome, etc. can be caused by hypothyroid. Keep going till you get some answers! Good luck. And it does run in families, too. 
  • gill43753
    gill43753 diane94845

    Posted

    Hi Diane,I've heard that thyroid problems run in families.Have you ever mentioned this to your doctor.Also,I know it sounds obvious,but write down the complete list of symptoms together prior to seeing your doctor.This way,not only will you remember everything without being hurried,but your doctor can put the whole picture together.Sometimes you can see a doctor and tell them what's worrying you most at the time,then something else at another time.

    It happened to me with a DIFFERENT ILLNESS.I had so many symptoms.One blood test came back abnormal,when it was eventually tested for,then I wrote down everything and sent it to the Endocrinologist I had been referred to.She saw me immediately she received it,and knew I had Cushing's disease.Since then,I have also developed hypothyroidism,because my pituitary no longer makes my thyroid work.

    The other thing is are you able to request a referral to an endocrinologist,insisting that you feel things are not right and suggest that it runs in the family.

    I do hope you get somewhere.I'm struggling as well,so know how you feel,except I do have a diagnosis.That is the key thing,otherwise you think you're going mad or imagining it all.Just try my suggestions,it might work.Good luck.Gill

    • diane94845
      diane94845 gill43753

      Posted

      Hi Gill, thank for replying, much appreciated. No, thyroid has never been mentioned until today when doctor asked if anyone in family had it. I knew about my grandma but it was only after speaking to mum, who was a nurse that I was aware of my auntie having Sjogrens and as I said, mum has never been tested so she may well have something too. I will definitely make a note of that plus a list of all my symptoms though and see what doctor says. Thanks again x
  • shellyC19
    shellyC19 diane94845

    Posted

    Hi, Diane,  I have Hashimoto's which causes Hypothyroidism and I have a lot of the symptoms that you describe. I was also diagnosed with Sjogrens syndrome which is part of the arthritis family of diseases. That alone can cause muscle/joint pain.  I had 2 discs that hernaited but I went through a microdiscetomy and that has now subsided.  You should get tested for Sjogrens and or Oseto & Rheumatoid Arthritis. Also get tested for Lupus and fibromyalgia. Many of times one condition can cause another, like a rolling snowball effect.   As we age more problems come about.  Please see if all your blood work is normal like RBC's & WBC's  & sed rate.  Also minerals in body like Sodium and Magnesium and iron.  My thoughts are you have another undiagnosed condition going on.  See a specialist as they know much more and deal with this everyday.
    • diane94845
      diane94845 shellyC19

      Posted

      Hi Shelly, thank you for your reply - everyone on here is so nice! Thinking back, Ive had the tiredness for probably over 10 years but just put it down to a busy life, the joint pain has been gradually getting worse over the same sort of period but I never really gave it much thought until the last couple of years. Mum has always had neck / back pain and the joints on her fingers have been shot & twisted for many years - she is so embarassed by her hands. My auntie had a serious kidney condition from childhood, lots of medication, operations to remove one useless kidney leaving her with one which had virtually nil function - she was on dialysis for over 20 years and I believe it was possible her condition masked other ailments. She was told she had Sjogrens about 7 years ago and sadly passed away just over a year ago.  I  Googled my "symptoms" a couple of months ago and Lupus, Fybromyalgia, ME, Chronich Fatigue Syndrome were all suggested. I never thought about thyroid - the doctor mentioned that first yesterday and it was when she asked if there was any family history, I remembered my grandma having an operation when I was about 6 r seven years ago, and when I asked my mum she said about her sister having Sjogrens. Its likely that my mum has something related too.  I will have the blood tests on Thursday and see what the results are. Doctor also mentioned pernicious anaemia which I think my auntie had too.. Thanks again, I really appreciate everyones input. xx
  • shellyC19
    shellyC19 diane94845

    Posted

    Hi Diane:

     You need to let the doctor's know about your family member who had sjogren's because it is not clearly looked for. They have a blood test that can show markers for it and if you don't have it -then you have peace of mind. Women have Thyroid problems as our bodies change monthly and child bearing can create problems on our glands. Many conditions like Lupus, Fibromyalgia and Rheumatoid can be missed or masked. Get a good endocrinologist or specialist and let them know about your symptoms of being tired. Write down family history of major gland problems too. It will help them diagnose you correctly. You have to be your own advocate and ask for tests for the above conditions.

    • diane94845
      diane94845 shellyC19

      Posted

      Thank you Shelly, I really wish I had known about this site earlier - I could have gone to the doctor armed with information and possibly something could have been done before now.  Ive had blood tests done a few times before but no idea what they were testing me for, and everything came back "normal" and I was starting to feel like a fraud, going to courses of physio for "unexplained" pain which made no difference at all. I will certainly be writing everything down that I have been told about. I feel a bit weird, hoping that they diagnose me with something but it will be more reassuring than being told Im "normal" again.  xx
  • Gizmo1963
    Gizmo1963 diane94845

    Posted

    Hi Diane, I hope you are feeling a little easier today. I'm with Shelly on all the information she has given you as there are several conditions which all have many of the same symptoms. A good endocrinologist or rheumatologist will be able to properly diagnose you and then start you on the correct medication. It can be a little hit and miss to begin with but I hope you will begin to feel better soon. Hey, we are a nice bunch lol. We are all lucky to have one another to turn to in times of need. Xx
    • diane94845
      diane94845 Gizmo1963

      Posted

      Hi Gizmo, thank you, it has certainly opened my eyes to lots of things that all seemed to be linked. Ive actually just phoned my mum & told her that she has to make an appointment with a doctor to get tested - I clicked on a link which said that "furring of the heart arteries" is related to hypothyroidism - she had 7 stents inserted in her arteries just under 5 years ago, she has been tired for a long long time, but she blames that on not being able to sleep properly following the death of my brother in 1979 then my dad had a massive stroke in 2005 and she is his principle carer as he is unable to even get out of a chair unaided. They live in very sheltered accommodation with carers but Mum still insists on doing the lions share of looking after him. He tends to have very unsettled nights which also keeps her awake. Its ironic that she was a nurse for 36 years, the last 15 in the rheumatology department at Aberdeen Royal Infirmary!  Can I request to see an endocrinologist or rheumatologist through the doctors surgery or is that something I do on my own?  Its like a whole new world has opened up and Ive not even been diagnosed with anything yet!  Thank you all, I will certainly keep in touch and I hope that if I have whatever I will be able to do the same for other folk one day!  Thanks again xxx

       

    • Gizmo1963
      Gizmo1963 diane94845

      Posted

      Hi Diane, wow you and your family are going through an awful lot and quite often it can be stress or a long term infection that can be the root cause of these illnesses as our bodies can struggle to cope. When you see your GP tell him you would like to be referred to a rheumatologist for your symptoms but also want a blood test arranged through your surgery for thyroid, cholesterol, vits b12 and d3 deficiency, full blood count etc so as to rule out any deficiency or thyroid issues - remaining tests like autoimmune disorders will be carried out by the rheumatologist. I know it's hard, but try not to click on random links to try and diagnose your mum as you will get carried away in believing that everything is wrong with you both. Take it from someone who also did the same lol xx
    • diane94845
      diane94845 Gizmo1963

      Posted

      Hi Gizmo, yeah I know but you just get on with it and dont really consider it as a cause for anything. I honestly only Googled yesterday & this morning, so I will stop, have the blood tests on Thursday and wait to see what comes back. She definitely mentioned those tests above, thats the 1st doctor who I feel has taken me seriously (probably because I burst into tears as soon as I sat down and she asked me what she could help me with) I was just so sore yesterday, and same today, my right wrist is so painful that I cant hold my cup of water in that hand - typing with left hand only at work just now! Thank you x

       

    • Gizmo1963
      Gizmo1963 diane94845

      Posted

      Hey I google till my hearts content - I sometimes am my own worst enemy but we get frustrated don't we? Just can't help it! Yes I got to the stage where I had trouble using my fingers on the keyboard, felt tired all the time, lack of concentration due to high pain levels, brain fog and feeling of panic - it's so horrible as to begin with you feel you are going mad.
    • diane94845
      diane94845 Gizmo1963

      Posted

      Gizmo that is exactly how Ive been feeling since before Christmas, I had a chest infection which went into bronchitis, on antibiotics and almost 3 weeks off work in October and thought that would be me sorted but I dont think its left me, Ive a persistent cough and keep having a sore throat for a few days, then it goes away then I wake up in the middle of the night with it sore again. I forgot to say to doc yesterday that I have a really dry mouth in the morning which Ive only had for last few weeks, feels like Ive not had a drink for days and intermittent blinding headaches as well. I was blaming work for my sore wrists because my desk had no room for resting my wrists (been there for nearly 7 years and only 6 weeks ago did they insert a triangular bit of wood for me to have somewhere to put wrists while typing) - ongoing issue since I started! When they are sore like this Ive to remember not to lift a hot kettle, my excuse for not making the coffee at home!  I cant say Ive felt panicky but the fog has become "normal" for me -  I think its always been there in some form or other!! xx
    • Gizmo1963
      Gizmo1963 diane94845

      Posted

      Yes I too had a chest infection and sinuses too which turned into bronchitis and I needed 4 weeks of antibiotic treatment to get rid of it. I have had a funny sounding cough for over 2 years now. Yep, if you forget and lift that kettle, you wrist just bends and boy does it hurt. May I ask how old you are? I was diagnosed via an MRI scan 10 years ago with cervical and lumbar degenerative disc disease so had lots of steroid injections in my spine. They then found I have widespread osteoarthritis. Then 2 years ago my blood pressure and cholestrol went through the roof. 2012 diagnosed with severe fibromyalgia, 2014 with CFS/me and low and behold after a year of my thyroid results showing borderline and then under active I'm now on Levothyroxine and it has began to really help a lot of my symptoms as my body is working again - slowly - but I can now wake up in the morning and get out of bed rather than have no energy at all. No more severe constipation, blocked sinuses, sore throat, dry mouth, sore eyes, feeling exhausted all day. I still have all my pain as it won't help my fibro or arthritis but at least I can function a bit better finally. You will also begin to feel better once the specialist finds out what's wrong and treats you. It all takes time to diagnose but your work needs to know what's going on so they can't say they were not informed of what you are going through. They also by law need to ensure your work station is set up correctly for you and you have the right kind of chair. Good luck! Xx
    • diane94845
      diane94845 Gizmo1963

      Posted

      Hi,  I will be 50 in October.  I was told in 2008 that I had worn discs in lower back, had injections which made no difference so was given different ones which I thought helped but this happened at same time as I removed myself from a very bad violent relationship and I felt better as I no longer had the severe pain that I had to bum shuffle around the house as it hurt to much to stand,  it became bearable for about 6 months so not sure if it was the 2nd lot of injections or just not living under the stress of the relationship...possibly a bit of both perhaps. Lower back pain is still there but not nearly so bad. I had to go for a check-up at the hospital and was told I was being discharged but never given a reason why.  My blood pressure is always fine when I have that checked, weight has increased a lot over the last 9 -12 months and my diet has not changed at all, Im not a gym-goer but I love walking although Ive found if I go for a decent walk I suffer for about 3 days after but still do it for enjoyment!  My fingers swell up quite a lot and I always have feet like balloons by time I get home from work, also feel like my skin is being stretched over my face, its a weird sensation!  Ive changed how I wash & condition my hair by not shampooing so often, just wetting it and conditioning - has made a bit of a difference as not near so dry. I have noticed a difference in the bowel movements - I go from constipation to the total opposite.  The work situation is shocking - Im 5' 11" tall and just have the same bog standard chair that my shorter colleagues all have, not even a proper desk (made out of the boss's old kitchen units). We have to fill in a form for H & S every year and every year I have the same complaints but nothing gets done.  Im currently looking for a new job with part time hours but not had any joy there yet. I hope you continue to improve, and thank you again for your advice.  xx
    • Gizmo1963
      Gizmo1963 diane94845

      Posted

      I will be 52 in August and just 5'2". I have also put on lots of weight - over 3 stone. I always loved walking especially in the countryside so miss being able to do it so so much. The other problem we girls also have is menopause symptoms which make it that bit more difficult to diagnose us. The symptoms you can get with hypothyroid are so similar to peri or post menopause! The numbness and tingling in the face is horrible but can be nerve problems relating to degenerating discs. Xx
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