1. Community
  2. Diabetes and hormone problems
  3. Hypothyroidism

Sorry for the long post..can anyone advise

Posted , 7 users are following.

lynbolton
lynbolton

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

 

5 likes, 36 replies

36 Replies

Prev Next
  • lynbolton
    lynbolton

    Posted

    Hello, hope everyone has had a nice weekend.  Wanted to thank all for the replies I got.  Ive felt Rough as toast for days so not been able to reply.  Luckily work are being quite supportive as ive been unable to fly due to extreme fatigue, dizziness and extreme anxiety driving home after work.  ive just been back for my next mri scan to see if the Anuerysm has grown since the finding last year.  I can't begin to describe how dreadful im feeling,Ive not left the house or got dressed in days...havent seen anyone or spoke with anyone for five days (apart from my poor dog who is desperate for a walk but I can barely function). I'm praying this mri will lead to some further investigations as I can't go on like this.  I'm 43 and though I'm not suicidal I feel so fed up with feeling so horrendous.  I can't face going to my GP to be fobbed off with a stress or depressed diagnosis again.  How can I get them to send me to an Endo when my bloods are always showing normal an they think I'm just a time waster.  Completely at a loss with it all
    • jean34329
      jean34329 lynbolton

      Posted

      Lynn

      The way you describe you feel is 'normal' for someone with a thyroid disorder.

      I seem to recall you live in the UK so I appreciate the reluctance to get a thyroid screening or even to be taken seriously.

      .

      I understand where you are coming from because what you describe could apply to the way I feel.

      The only thing I can advise is the following.

      1. Blood tests. I would advise ringing round and finding out which surgery, hospital will do a full thyroid screening plus thyroid antibodies.

      Armed with some evidence then no one can fob you off with the anxiety 'diagnosis.'

      If you PM I can send you my contact details due to technical difficulties with a new laptop that is driving me mad I cannot seem to be able to pm . I get very frustrated with this laptop which my husband only bought a couple of weeks ago.

      Jean

       

    • shellyC19
      shellyC19 lynbolton

      Posted

      Hello again Lynbolten:  I am extremely worried for you.  I would think the pressure changes in the airplane would bother your Anuerysm.  This is a very serious condition and I hope the MRI is okay. 

      It can grow and press on a myriad of places in your brain.  As I said before, this is not to be taken lightly.  I am an American and an RN, and I do not understand how NHS works.  Can you see if your Neurologist can refer you rather than a GP.  In USA our doc's refer to a specialist fairly easily.  I would think a "Neuro" doc would hold more power in your NHS system than a GP.  God Bless.

    • shellyC19
      shellyC19 jean34329

      Posted

      Jean, that is so sad. I lost 2 cousins to anuerysms.  They died before we had all of this imaging.  I know another lady, a friend who just had the coil put in and she is doing okay.  I hope for the best for Lynn.
    • lynbolton
      lynbolton shellyC19

      Posted

      Hi Shelly, thanks for your concerns thats very sweet.  I wasn't allowed to fly initially but after I had my first mri and ct scan the neurosurgeon confirmed he didn't think the Anuerysm would pose any major threat to rupturing, certainley not due to flying...obviously this was my first concern.  To be honest when I'm feeling ok, the best place for me is on the plane as the environment is a tunnel type contained one, I don't need to use my peripheral vision, so i tend to feel better at work than anywhere (usually!!) I have worse problems in the busy airport or all the hassle and bustle at security etc, find these things far more stressful.  

      As for the NHS like Jean says, It's not the best.  We pay extortionate taxes here for a substandard service, it's a pity because it's not really the docs and nurses fault, they are fab in most cases,miss the limited resources...but all a political argument Im not really in the frame of mind to get into!!   I actually went private (paid for by medical insurance policy) for the MRI scan and luckily my neurosurgeon and his team work privately and alongside the NHS so he has agreed to be my neuro for as long as it takes, so I feel Im in the best hands.

      I don't believe anuerysms are taken half as seriously here in the UK as other countries so I am limited Im afraid but ai sincerely Thankyou for your concerns and support.  kind regards Lyn

    • jean34329
      jean34329 lynbolton

      Posted

      Hi Lynn

      I think you have to trust the neuro's judgment.

      The nurse who murdered patients at Stepping Hill Hospital is being sentenced today.

      Jean

    • lynbolton
      lynbolton jean34329

      Posted

      Oh it's shocking, and I Was watching something on tv about Harold shipman last night!! Yes I'm happy with my neuro team...I am gonna ask again if there's anything they can do when I go back.  Hope your feeling ok today Jean 
    • jean34329
      jean34329 lynbolton

      Posted

      Thanks Lynn

      I am going to physio this afternoon . This neuropathic pain is driving me mad. Private physio of course!!!!!

    • lynbolton
      lynbolton jean34329

      Posted

      Of course!  Well good luck with it all Jean, hope you get some good results
    • shellyC19
      shellyC19 lynbolton

      Posted

      Hello Lyn:  Well, at least you had the MRI and have a private medical insurance plan.  Since I am an American, and never lived in UK, I always thought that your system was good. It seems like the Veteran's Administration we have in the USA.  My husband was in the military and he is entitled to free medical care, (from the Vet's Admin.),  but they have a limited drug formulary and you can wait months or longer for an appt.  Lucky we also have private insurance and can go outside of them.  They are okay, if you don't really need them.  LOL.

      I trust your Neuro-team.  I lost 2 family members back in the 1970's to aneurysm's and hate to see anyone else lose to this.  It all depends if they can get to it.  If symptoms get worse  such as bad migraines & loss of motor coordination, more visual field loss, please go back to the doc. This is kind of a timely topic since I have a friend who is in her late 30's and she collapsed and they found the aneurysm and put the coil in her. She is walking around with a walker but she is ALIVE!!  Keep in touch and let us all know how you are.  God Bless. XO Shelly

  • lynbolton
    lynbolton

    Posted

    Hi all, hope your all well since we last spoke.  its a few months on and im still none the wiser, plagued by fatigue, lack of motivation and generally Fed up with what feels like another wasted summer in bed feeling like lifes passing me by.  I managed to get an appointment with an endocrinologist who sent me for a basal pituatary function test in July only to be told ONCE again, all tests fine, nothing's up, must be stress, here's some anti depressants...off you trot.  So ive give in, took the stupid anti depressants (SSri) type which have further added to my loss of motivation and lethargy.  Beyond fed up, not been to work in ages, not seen friends or got anything done in weeks, takes all my energy to brush my teeth before I need another nap to recuperate.  So it's not then anuerysm, hormones, pituatary or thyroid....im completely lost as to where to go next without being made to feel like it's all in my head.  Any ideas.... 
    • jean34329
      jean34329 lynbolton

      Posted

      Lynn

      Nice to hear from you again. I am sorry that you are still having problems.

      Do you have copies of your blood tests and MRI scan Reports?

      I think you should be reviewed with new eyes.

      On the subject of eyess have you hhad any vision screening done?

      Sometimes chronic headaches/migraine can cause a lot of the signs and symptoms you are experiencing. I agree with you about the SSRi's, they have been given a bad press and the side effects are or can be worse than the condition itself.

      I feel that you need new bloodworks doing plus thorugh eye screeening.

      Incidentally I was diagnosed with a gluten intilerance. I am now on day 5 of a gluten free diet.

      This is horrendous due to the withdrawal symptoms. Gluten contains addictive opiates.

      Wheat has toxinx in it which damage our bodies, this is backed up bt scientific research material and evidence.

      I would google the Gluten Syndrome and Gluten Ataxia and the link to the thyroid.I would not give up.

      People have experienced the most ghastly conditions including severe depression, joint and muscle pain and stiffness due to eating wheat which contains a protein that causes inflammation in any organ of the body.

      Antibiotics can also cause similar toxicity.

      Jean x

      Jean x

      Plscalled

       

    • jean34329
      jean34329 lynbolton

      Posted

      LYNN

      Don't let anyone put you down . We know that you are truthful and that it is not in your head.

      I seem to recall that you received a diagnosis of an aneurysm.

      Has anything been done about this?

      On the subject of blood reult it is worth getting copies. One Trust reference ranges can vary so much. In thconsidered normal at a much higher rate than in the UK. Why the difference?

      To be able to make an accurate assessment of blood results one needs to be looking at the real thing, in other words the acual blood results themselves.

      It is only by reading the actual results and reference ranges and comparing like for like elsewhere at home and/or abroad that one can get a full picture of what is going on.

      Can you obtain a cd of your MRI scan so you could perhaps send it to another neuro radiologist for a second, even third opinion?

      You can apply for your rrecrds by making a Subject Access reuest under the Access to Mdical records Act and thhe Data Protection Act. you may be askked for the reason but nder the DPA you do not need to state a reason. It is best o request ALL your medica records including all x ray reports, scan Reports, all ultra sound , CT , MRI scan Reports.

      Don;t forget to include all laboratory Reports including ALL haematological, biochemical, bacteriology blood results.

      All immunology Reports.

      Plus the medical and nursing records.

      Jean

  • lynbolton
    lynbolton

    Posted

    Hi Jean, how are you? ThAnks for replying.  The test results for the latest blood screening are quite detailed, as I was in the hospital all day having bloods taken every 30 mins.  I asked for a copy of the results, Ive questioned why my cortisol levels ranged from 282 at 9am raising up to as high as 1033 by the last test done at 3pm but yet to have a reply.  Was also confused as to all my results being in black apart from some which were in red with a note "urgent" next to them?? again ive questioned.  The red results are all under range as so

    Free T4 11.8

    Growth hormone 1.85/7.72/4.39/1.94/1.99 (timed throughout the day)

    incidently i i noticed my ferritin and my t3 were not checked but the endo has ruled out thyroid adrenal or pit probs so doubt I can push this further now.

    was just reading about celiac on another forum, something worth looking, so thanks for that into.  Not sure what vision screening is, my neuro surgeon says my anuerysm presses on my optic nerves, which is why I feel so disorientated and get the double vision probs.  

    praying for for a day I can spring out of bed and feel alive, full of excitement, hope and visual clairity.  

    👍

     

    • jean34329
      jean34329 lynbolton

      Posted

      Hi Lynn

      Sorry about the spelling mistakes in the previous e mail. I have cataracts and yesterday had drops instilled at the eye hospital hence making so many errors.

      What I was trying to say which I think you gathered anyway was that what is a normal or acceptable level for xyz can vary between hospital to hospital and certainly from country to country.

      I think that it is essential that your ferratin level be checked and treated if low. Low ferratin can cause damage to the central nervous system and nerves.

      Vit B6 and B12 are available in supplement form as you  know. Low ferratin levels suggests anaemia which can make you feel quite  ill in itself.

      Again the values vary so important if this is checked to get copies of any results.

      In the US the accepted Ferratin level is much higher than the one that is accepted in the UK.

      I do not know much about the interpretation of cortisol levels except except they can vary throughout the day hence the frequent testing.

      The endo/neuro team are obviously checking for adrenal stress/fatigue.

      Have you seen a neuro ophthalmologist about the pressure of the aneurysm on the optic nerve?

      I will research this as I know that using a computer, reading, watching tv is a big effort when you have visual problems. Been there, done that worn the T shirt.

      Keep telling yourself thqqt you are going to be alright. Tomorrow is another day and may be the day when your health begins to improve.

      That is what keeps me going as well as the support from this forum.

      Kind regards

      Jean x

       

Back to top
Prev Next

Report or request deletion

Thanks for your help!

We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.