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Can anyone relate I'm really scared

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pamela2016
pamela2016

Hi everyone I was on this forums few months ago I'm back as I really am at a loss as to where to turn. I've been to Dr numerous times. Labs was normal she said my thyroid was normal but I'm having non stop symptoms since October. It started out with bad hit flashes that was so bad they was making me nauseas those lasted three weeks just to develop hot and cold at same time nervousness jitters which I still have. To sweating my hands and feet sweeting to the point of feeling sticky hands that subsided to develop off balance dizzy woozy all day everyday I'm still doing this I also have heart palps racing heart off and on but more in them off I feel flutters weird sensations in my chest and when this starts in I feel anxiety on me out if the blue on its on. I start feeling like I can't swallow I have constant feeling like I can't breathe good don't really short of breathe but the feeling I am and taking deep breathes all day long. Now when hearts racing it's worse with the breathing. At night I'm scared to sleep my heart acts up and every sec if the day I'm scared I'm gonna die from heart attack. I've had a EKG in the er two months ago they said it was normal I know something is going on and it's all connected all of this started same time. I'm so depressed and no answers I'm tired of being told this is anxiety I know it's not all anxiety. Also if I get upset alittle it really sets the racing heart off. Please can anyone relate to any of this.

0 likes, 30 replies

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  • jan.h
    jan.h pamela2016

    Posted

    I had 3 years of tests, bloods which showed normal, all the symptoms which only a locum finally pieced together.

    it doesn't mean you're well, only that they can't label, and so treat,myou.

    im so sorry you're at this point.

    you need to insist on more tests, simply put, it's not right to feel this way and I'm sad they've left you to it.

    i was sent home from A&e after being drugged with Valium till I passed out , yeh, stopped my shaking eh??!! Right there when I woke up, and labelled as 'anxious' .

    its so frustrating....keep at them, find your light at the end of the long illness tunnel....

    youre not alone xx

    • pamela2016
      pamela2016 jan.h

      Posted

      Thank you for replying does this sound like hyperthyroidism at all? I do have my lab levels from nov I'll post them as soon as I find where I out them
    • jan.h
      jan.h pamela2016

      Posted

      Your symptoms mirror some of mine but...like they say...could be something different.

      and you NEED to find out ....xxx

  • christine57219
    christine57219 pamela2016

    Posted

    Hi Pamela,

    yes from my experience as a Hyper/Graves sufferer, you have a lot of the classic symptoms of Hyperthyroidism and they are, as you say, very very scary !  Post your lab results as soon as you can.  The results may be within "normal" range to the GP/Endo because they only go by the result of the blood test which has a variable range and they do not seem to take heed of how a thyroid patient is feeling.  If THEY had a thyroid problem and felt as bad as we did, they'd soon be doing all they could to try and alleviate at least some of the symptoms !!

    Rest as much as is possible, difficult to do sometimes but your mind and body needs to !

    Christine

    • pamela2016
      pamela2016 christine57219

      Posted

      My levels were

      Tsh 1.130 range(0.450-4.500)

      T4 0.99 range (0.82-1.77)

      Thyroid peroxidase (tpo) ab serum 8 range(0-34)

      Parathyroid (pth) 2.2

      She didn't check t3 I don't know why my t4 to me is low normal but I don't know anything about thyroid

    • jan.h
      jan.h pamela2016

      Posted

      Your T3 is important here. No number??  Your T4 is low, TSH is low.....ask for more tests and clarification.

      avoid caffeine and artificial sweeteners as they mess with the thyroid. Try yoga and try to keep positive and relax and rest x good luck...don't worry, you're not alone here xx

    • pamela2016
      pamela2016 jan.h

      Posted

      Thank you im trying to find a new Dr at present mine seems to think this is all in my head and it's not. With them being low your opinion what does this mean? I know nobody is a doctor and can tell me for sure but I'm really at a loss til I can get a new Dr to listen to me. I mean what I'm asking is what does this mean with them being low hyper or hypo I'm confused as to which way levels go upnor down for either hyper or hypo
    • jan.h
      jan.h pamela2016

      Posted

      Low thyroid function is hypo

      high thyroid is hyper ( mine was at T3 toxicosis at 30) and usually termed as Graves , with some tendency to eye problems, and racing pulse

      hashimoto is when it swings up and down

      pleaee don't stress, relax, get answers xxx

    • christine57219
      christine57219 jan.h

      Posted

      Hi Jan - low TSH is HYPER and high TSH is HYPO  - I have copied and pasted this below to confirm:-

      Thyroid-stimulating hormone (TSH) produced by the pituitary will be decreased in hyperthyroidism. Thus, the diagnosis of hyperthyroidism is nearly always associated with a low (suppressed) TSH level. If the TSH levels are not low, then other tests must be run. Thyroid hormones themselves (T3, T4) will be increased

    • christine57219
      christine57219

      Posted

      When TSH is low and T3 and T4 are high = HYPER

      When TSH is high and T3 and T4 are low = HYPO

    • christine57219
      christine57219 pamela2016

      Posted

      Hi Pamela,

      I don't know much about anti-bodies although I do have a high count of them but your TSH and T4 don't look bad to me. For most to feel ok, they need a TSH of around 1 and T4 and T3 in the upper quadrant of their ranges.

    • pamela2016
      pamela2016 christine57219

      Posted

      It's confusing tsh is on low side so is t4 my pituitary was fine that was checked and my adrenals
    • pamela2016
      pamela2016

      Posted

      I also wanted to ask if anyone can relate to this I can be trying to doze off and take a nap or go to sleep at night and i get this adrenaline feeling in my chest every single time I doze off and it wakes me as soon as I doze off. I'm not sure how else to explain it but I'm not having panic I'm calm when this happens I just get woke up with that feeling.
    • jan.h
      jan.h pamela2016

      Posted

      Same for me every night!

      ive been recommended to try changing my dose so I get a higher carbimazole at night to reduce these symptoms.

      and I take biotin and selenium too.

      good luck!

    • christine57219
      christine57219 pamela2016

      Posted

      http://www.thyroiduk.org.uk/tuk/index.html

      If you click on the above link and then on the right hand side click on "about the thyroid" you will find lots of information on there.  Hope it helps.  We have all had to do our own research as we have found our GP's and Endo's do not give us enough information about our problem.

    • christine57219
      christine57219 pamela2016

      Posted

      When I was first diagnosed in August 2013 I had all the symptoms you describe and MANY more - my blood results were as follows - you can compare them with yours and hopefully see that even though you are having some symptoms, your results are not bad :-

      My TSH was   0.04  (0.34 - 5.6)  Below low reference limit

      My FT3 was     15.09  (3.0 - 5.0)  Above high reference limit

      My FT4 was      45.2   (7.5 - 21.1) Above high reference limit

      I was therefore HYPERthyroid

      In October, after being on some medication for a couple of months and bloods re-tested, my results were as follows:-

      TSH   32.61   (0.34 - 5.6)   Above high reference range

      FT3    2.54     (3.0 - 5.0)     Below low reference range

      FT4    3.5       (7.5 - 21.1)   Below low reference range

      I had now become HYPOthyroid

      This can happen (going from hypER to hyPO until the medication adjusted and right dose found. It can also happen if you have both Graves and Hashimotos anti-bodies - I am Hyper/Graves.

      Hope this helps in some way.

    • jan.h
      jan.h christine57219

      Posted

      Hi...I've been to,d I'm hyper graves, T3 toxicosis, thyroid antibodies off the scale, now I'm drooping, yesterday I was a bit manic.....up and down....weight too.

      how long till you felt better please? X( if you do?)

    • christine57219
      christine57219 jan.h

      Posted

      If you've only been on the Carbimazole for a few weeks it wont be long before you start to feel better.  Took me about 6 weeks after first taking Carbimazole for my body AND mind to settle down a bit to a more normal pace.  After being on Carbimazole for about 2 months I went HYPO so had to stop taking the Carb for a while.  When bloods were at a satsfactory level I was put on Block & Replace treatment by my Endo - taking Carbimazole and Levo Thyroxine.  Was on this for about 20 months and then both medications stopped to see if my thyroid "behaved".  It did NOT behave, so I was put back on Carb and then back on both Carb and Levo.  Had lots of problems with meds and adjusting doses and blood results up and down.  I am still taking 40 mgs Carb and 75 mcgs Levo and see my Endo on 4th April at which time I will be asking him to put me on the Carbimazole Titration treatment and stop the Levo completely as I don't think Levo agrees with me.  The last time I saw my Endo was last October (2015) and he wanted me to think about having RAI (Radio Active Iodine) but I am NOT willing to have that at this stage and want to hold onto my thyroid for as long as is possible - RAI or surgery would be an extreme resort for me.  I will continue on medication for as long as is possible and hope for remission at some stage.

      Some patients go into remission after a short while - not me, but you could !

      Christine

    • jan.h
      jan.h christine57219

      Posted

      I'm a bit hyper tonight, had the shakes, feel awful.

      this illness is the pits, don't like how I feel and think....

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