Sorry for the long post..can anyone advise

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Hello, I'm new! Came across this site whilst looking for some information.  I will try and keep my story brief

For years now, ive suffered with terrible fatigue, mood swings, lack of energy or motivation, weakened immune system, headaches, irrational thoughts, general feeling of malaise.  I was eventually diagnosed with chronic fatigue syndrome by a specialist around 4 yrs ago.  At this point, I had frequented my doctors regularly for blood test, anaemia tests, blood pressure tests etc always to be told I was normal and sent on my way.  I was told I was depressed, needed anti depressant and cbt.  I felt like no one took me seriously and even doubted myself as an hypochondriac when nothing came back on any of the tests time after time.  

Moving on on a few years, the CFS is still present, however last year i developed double vision.  Being 42 i suspected I was needing an eye test.  To cut another long story short, I was diagnosed with a brain anuersym last April after a MRI (done privately as once again my own gp's blamed depression as the reason for my headaches/visual problems) 

I was assigned a neurosurgeon and after several scans and meetings it was decided that the anuersym posed no major threat and that risks of surgery far outweighed the other risks.  I was relieved to hear this as the thought of brain surgery obviously was quite a worry.   However having lived with the brain anuerysm now for 12 months Im now beyond fed up.  My headaches are horrific, my vision is all out of sync, I'm full of brain fog and have felt out of it now for months.  

I asked the neurosurgeon on my last check up whether the intial CFS diagnosis could be linked to this anuerysm but he didn't think it was.

The reason I'm writing is Im now suspecting my thyroid isn't functioning properly due to the pressure of the anuerysm as its very close to the pituatary. However as my blood tests always read normal how likely am I to getting this taken seriously.  I honestly feel my CFS is a result of my anuerysm but if the neurosurgeon won't operate on the anuerysm & the CFS never goes away then where do I go next as Im feeling so dreadful and weak

Thanks for reading

 

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  • Posted

    Hi Lyn

    Have you had thyroid bloods done in your tests ?

    TSH, T4, T3 and antibody ?

    also when i was age 42 i was in peri menopause having lots of hormone decline symptoms, are your periods regular still.

    Another good one to check is blood test for Vit B12 and Vit D

    I have deiciency in both of these too.

    Stay positive hun

    Jay x

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  • Posted

    Hi Lynn

    Have you had ferritin, B12, folate ,cortisol and vitamin D levels done?

    Jay is spot on.

    Try to persuade the drs to do a FULL thyroid screening. If they refuse then consider having this done privately. You need the tests plus thyroid antibody screening, cortisol level and possibly a few more that can be found in other postings on this website.

    I am not an expert in this but others on this site are more au fait with the tests than I am.

    Despite being a former trained nurse I am a novice when it comes to thyroid disorders.

    However what I have learned from others on this site has been invaluable, highly accurate and humbling. It has been and still is a huge learning curve for me as well as a very humbling as well as a gigantic learning curve for myself.

    I had a CTPA scan which showed an incidental finding of multinodular goitre and am awaiting an urgent referral to an endocrine surgeon and endo physician who work in conjunction.

    Since December 2013 I have had and still have the same signs and symptoms as yourself plus peripheral neuropathy.After being subjected to the same treatment as yourself by the Doubting Thomas''s of the medical profession I can see exactly where you are coming from in terms of sellf doubt.

    However you are not going mad etc. You are sane.

    As well as the excellent advice from Jay  I would advise getting checked out for adrenal fatigue and fibromyalgia.

    Have you ever had any antibiotics even for a few days?

    For in depth information on antibiotic toxicity try the floxiehope website and antibiotic toxicity.

    Also check out statins.

    There is help out there once someone is pointed in the right direction.

    Kind regards

    Jean

     

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  • Posted

    Hi Lyn

    Jay is spot on .

    You do need the full range of tests for thyroid screening.

    Have you ever had a second opinion re the aneurysm and surgery?

    Stay positive.

    Jean x

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  • Posted

    Hello Lynbolton:  I am an RN and live in the USA.  reading your post, I am extremely concerned.  I lost 2 couisn to anuerysm's , back in the day before all of the good imaging of today.  Having the anuersym is like a time bomb. They can put a shunt in and I know someone who had that done.

    I guess UK and USA have different approaches to this but I am worried by that comment to leave it alone. My cousin who was only 35 had a bad headache and went to sleep and never woke up!!!  I will be honest here, leaving that in there is playing russian roulette and if I were you, I would have it fixed. You can have loss of motor  function and balance and it could be too late at some point.  Can you see another doctor? 2nd opinion? 

    Please watch your T 3 & T 4 levels but I would not fool around with an anuersym at all.  An anuersym will grow slow over time.  Can you tell me why you would want to keep that in your brain?  It is so fixable today. God Bless.

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    • Posted

      Shelly

      I too share a lot of the signs and symptoms that Lynn has.

      These include poor balance and numbness and p. neuropathy.

      I have hippocampal sclerosis and TLE.

      I started having blinding headaches in December 2013 these were attributed  to small doses of codeine prescribed for a dislocated shoulder after I lost my balance and went spinning round.

      I ad an MRI scan but without contrast medium whuch showed blockages in  the brain but NO dementia.

      . My balance is poor with p.neuropathy and signs and symptoms of plantar faciitis. I have recently been diagnosed with a multi nodular goitre which has yet to be investigated. I have been refrred to an endocrine surgeon. Basically I am fed up with being ill not being as mobile as previously and also worried in case I have thyroid cancer. THE GOITRE WAS FOUND AS AN INCIDENTAL FINDING.

      My aunt passed away due to an aneurysm.

      Do you think I need another MRI scan of the hhead?

      I am taking warfarin for re occurring blood clots. I have hypertension, long QT sybdrome and av conduction problem.

      I feel so ill and yet nothing much is ever done.

      I live in the UK.

      Jeanx

       

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    • Posted

      Hello Jean,  I lost 2 cousins in the 1970's to aneursym's  one died in his sleep at 35 and another died at 37 in the shower. This is a serious medical situation and I know a lady who collapsed and they rushed her to the hospital and found a brain aneruysm and she had the surgery, shunt placed in and is recovering since March 2015. 

      Yes, I would ask for another MRI, of the head for sure.  Aneruysm's can run in families and all in your immediate family should be checked!!!  It can't be found early and save a life!   Since 2 of my cousins had it, both my sister and I were checked for it.

      I do not understand your healthcare in UK, can't you see a doctor when you need to? I have read comments that "NHS takes a long time" and I don't have that here in USA. Today with our imaging and surgery it can be fixed when small.  Do not take a  wait and see attitude,  and then for it to explode and cause death. 

      Yes, you will be on blood thinners as you are now (warfarin), but it is only a bandaid to help keep the blood thin, you could still have a clot form and balance problems, motor skills such as walking you may get dizzy and fall/collapse. If the aneursym grows it can press on an area that deals with crainial nerves and that can give you neuropathy alone.

      The multi-nodular goitre is not a big issue as most turn out to be benign. Thyroid meds can be taken if  T 3 & T 4 levels are low in you.

      I do not like fooling around with a wait and see issue, with any aneursym, it is a serious medical problem and fixable by modern medicine and a skilled surgeon with a shunt.  Please have another scan and consider having it fixed by surgery.

      Aneursym's cause severe headaches, and balance issues, nerve problems, even being able to speak. They start off slow, and get bigger over time, and then go off like a bomb in the brain. The skull can't expand, so the blood pushes and you do not have that long before it pushes the brain like a pancake!  In USA they operate and fix it when small, because later may be too late!!!  God Bless.

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    • Posted

      Hi Jean, yes I think you must insist for the MRI.  I ended up going private for the scan as I was getting no where with the NHS, if one more doctor blamed everything on me being depressed or tired cause of my job I would have gone mad!! you know your own body.  Hope you get sorted and start to feel better soon.  Lynne 
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  • Posted

    Good morning, gosh was shocked anyone had replied...Thankyou all for your kind words.  Unfortunately here in the UK a brain anuerysm isn't really seen as a life threatening problem.  Every bit of info I can find is American based findings, there's no support groups here as I can find.  Ive changed routine doctors three times in as many years as getting an appointment or being taken seriously is quite a task tbh! Without sounding like im poo pooing the nhs, our GPs here seem to be happy to spend your ten minute window slot writing out prescriptions for anthing thats anti...bios/depressants/acids etc.. Suppose it keeps the pharmaceutical  industry afloat!! But to me it just bandaids the problems, nothing gets sorted.  So I try to use alternative therapies for general probs nowadays..but this is just my opinion and I don't wish to offend anyone from the NHS.

    Ive had about 10 blood tests over the last seven years, all come back "normal" even this last one once the anuerysm was found? Way back when, people kept saying thyroid problems and I mentioned this to the doctors but they said my bloods were fine.  Ive never seen anything in writing though, so I'll look into this.  I have considered the peri menopausal thing too, but my monthlys are fine.  I did mention B12 to the docotrs ages ago, as I did suspect that too.  I took supplements for a while, which did help my fatigue to some degree, but the docs said I shouldn't be taking them as I didn't give a low reading on this.  Plus lot of my problems have been blamed by the medicals as being my job (im cabin crew for an airline) because ive worked shifts and done longhaul for over 18 years, obviously being tired and fatigued is routine so the best advice they could give was give up my job...easier said than done! 

    As for the anuerysm, I was very concerned initially but my neuro team have put my mind at ease.  Problem we have is my Ann isn't berry shaped so they cannot put a stent in or coil it, and it's in a tricky part of the brain to get too.  If it goes it goes I suppose, ive accepted this.  I just wish I could be one of those people who let a major set back like this make me more positive and inspired to live out a wonderful life but because I feel so fatigued and foggy I literally spend all my non flying hours in bed and my flying duties being ditsy and praying for home time! I'm in a permanent bad mood, snap at everyone, ive fell out with most of my family and friends as I cannot handle all of this.  Ive not had a partner in over eight years as I permanently feel so exhausted, going on a date would be painful! Sorry im going on.  I will definately look into trying to get a doctor who will do the more detailed bloodwork as the more I read the more im convinced the anuersym is affecting my pituatary which In turn is affecting my thyroid making me feel so ghastly.  Cheers all, this means a lot x

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    • Posted

      Hello Lynbolten:  From what you say, some of your mood swings can be signs of the aneursym effecting you. I know a lady who just had the coil put in this past March 2015.  She had horrible headaches, mood problems, balance issues, then she collapsed and they rushed her to the hospital and were able to put the coil in.  If the area is hard to get to, I could maybe understand the wait and see.

      It is amazing you can fly for your job. Do the pressure changes in the plane bother you?  Are you having more trouble in the air with headaches?

      A few things to consider:  Do you take blood thinners?  Do you have high blood pressure?  Make sure these are looked at. It can run in families, do any other family members have it?

      Yes, the Pituitary Gland and Thyroid work together and  if the aneursym is pressing it or near it, you may see problems with your Pit. Gland and or Thyroid. 

      I hope your doctor's keep an eye on it, and I wish the best for your health.  God Bless, stay well.

       

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  • Posted

    Hi,have you had your pituitary checked? Cortisol blood tests and pituitary scan?

    Pituitary problems can often affect eyesight.Gill

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    • Posted

      It can affect your visual fields,which are now checked,I believe,when you visit the opticians.You don't see things so easily when they are in the outer areas of your vision.Also eyesight problems and headaches can go hand in hand.I had my visual fields checked in hospital before my surgery,and then again a few days afterwards,and was told that they had improved.The pituitary is located very near the optic nerves.A lot of people with pituitary problems only find out they have them after seeing their doctor or optician complaining of headache.It wasn't like this for me,though.I had the typical physical symptoms relating to Cushing's disease.Gill
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    • Posted

      Hi Gill, yes my anuerysm was found after I went the opticians for an eye test as my peripheral vision seemed out of sync, initially last year when driving but now as times gone on,more peripheral vision loss has occurred. The opticians didn't find anything so I was referred to an optimologist who did more tests then sent me for an mri which is when the anuerysm was detected.  The anuersm presses on my optic nerve.  I don't know if the pituatary is anything to do with this, my concerns were that the anuerysm which is quite big presses on my optic nerve but could it also press on the pituatary, this causing these more debilitating problems such as what comes with hypothyroidism.  Lyn
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    • Posted

      Sorry,I don't know,Lyn.I know the repercussions of hypopituitarism and hypothyroidism,as I have both.I would definitely ask your doctor or specialist if your aneurysm could be pressing on the pituitary as well.Wish you well.Gill
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    • Posted

      Gill

      Thanks for your quick reply.

      I started feeling really ill in December 2013 with night sweats, some nights I had to change my nightie 3 to 4 times severe headaches, throbbing pain in my right eye, loss of appetite, severe anxiety and depression, restlessness, an urge to leave the house , feelig unsafe- this has never happened to me before.

      I just wanted to lie down, could not relax, watch TV, read or do anything.

      Completely demotivated.

      I saw an ophthalmologist privately who sent me to a neurologist who specialises in headaches. He said it was an analgesia induced chronic migrIaine due to co codamol, codeine, despite the fact that I was only taking 3 to 4 a WEEK for a dislocated shoulder.

      I had anas done privately this came back positive 1 in 80 The test for ebv came back that I had ben exposed to this virus a some point but the date was unknown.

      I also started with peripheral neuropathy in December 20113 . This has worsened.

      On April 27 2015 a ctpa scan showed a multinodular goitre as an incidental finding . Now I await referral to aan endocrine surgeon who runs a joint clinic withan endocrine physician.

      I feel terrible but have been told that feeling really ill , depressed, anxious are features of thyroid disorders.

      I aso had a severe Vit D deficiency disorder and was diagnosed with secondary hyperparathyroidism in 2009. I think it was hypo not hyper.

      I was prescribed ergocalciferol drops (Vit D2) but the GP said I should have been prescribed Cholecalciferol which is Vit D3.

      What a nightmare.

      Jean

       

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    • Posted

      Hello Jean

      All the symptoms you describe are what i had/have and mine is menopause symptoms, hormonal headaches like migraine lasting days, i am post menopause now aged 51 in june, no longer get the headaches.

      Jay x

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    • Posted

      Hi,yes that's why my GP finds me so complicated.Panhypopituitarism,hypothyroidism and menopause have so much in common,but I've been 'not right' for so many years,and am now 50.Before my Cushing's disease was diagnosed,amongst other things,it was suggested I had early menopause,but I actually had a pituitary tumour.That was at the age of 32.There are so many symptom crossovers.Really hoping a new endocrinologist can unravel me mid-June in Oxford.Gill
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