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Undiagnosed

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Maggiemoo
Maggiemoo

Hi all

I'm a 55 YO woman, having fluttery palpatations, hot flushes when I eat,  Night sweats, cant lose weight, RSI in wrist, feeling fine one minute and literally the next I feel very low. Had an ECG on Friday and having bloods done on Monday to check thyroid. I also get the urge to cough but don't have a cough. Having read up on thyroid, does this sound like typical symptoms? 

 

0 likes, 39 replies

39 Replies

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  • ooops64
    ooops64 Maggiemoo

    Posted

    Sorry really not sure what the test is called. They rarely test T3 which is a shame, as some people have problems converting T4 to T3. So the T4 count is acceptable and it's automatically believed that the transfer to T3 will  follow. Are you I. UK ? 
    • shellyC19
      shellyC19 ooops64

      Posted

      Hello Ooops:  I am one of the people who have trouble getting T4 to convert to T3.  I am an RN and live in USA, and I know they test it here. I do not know why UK would not.  That is why I say tell the doctor, about family members who have problems with Hyper or Hypo Thyroidism.  I do not know if they are doing it as a cost saving measure, but with modern medicine it is easy to test for.  I never lived in UK so I am not familiar with how NHS operates.  In USA we have insurance and it pays for all Lab tests like this.  I try to help where I can and I can't understand the NHS system from the posts people write - maybe you could give me a rundown in brief.  God Bless.
    • shellyC19
      shellyC19 jean34329

      Posted

      Jean, Thanks for the answer.  That is not proper of NHS to do that. These tests are expensive but so easy to do and they provide a good look at the T3 & T4 levels side by side.  I guess you can't ask for it?  Is there an appeal process?  Maybe an Endocrinologist is only allowed to order the T3 & T4 ?  I am happy to help answer what I know and I try to let all know I am in USA.  Thanks for the reply.biggrin
    • jean34329
      jean34329 shellyC19

      Posted

      THANKS Shelly

      This NHS has got me down. The aggravating thing is that I have relatives in the US and one of them is a doctor. This seems to rub in the fact that no one wants to help .

      Getting tests done privately is the only way out for me. Each day is tortuus as I also have peripheral neuropathy.

      Jean

       

    • jean34329
      jean34329 shellyC19

      Posted

      Shelly

      I am sure that I have hypo and this has caused everything ellse.

    • shellyC19
      shellyC19 jean34329

      Posted

      Hello Jean, If you get tested Privately do you have to pay your own funds? It seems so unfair. 

      The thyroid is so important and having these blood tests help so much to detect problems with the gland. There are meds on the market for Neuropathy, one is Gabapentin, and the other is Lyrica. The meds were designed for other conditions but they stop nerve pain.  Can you ask for meds from your doctor?  If you can get tested correctly, I think the answer will come.  I always thought UK had a good medical system but I am learning it does not cover all blood and meds.

    • jean34329
      jean34329 shellyC19

      Posted

      Hi Shelly

      Thanks.

      Sadly I am a complex case due to having epilepsy and long qt and being on warfarin. I am unable to have any of the usual nerve pain analgesics including low dose amytrytilline due to the conditions I suffer from plus interactions with warfarin. I was prescribed Lyrica prwgabelin for epilepsy and it caused coortical myoclonus. However I am now queryting this diagnosis because it coincided with the onset of numbness of my feet and unsteady gait. I hhad perampanel in December 2013 then three ots of antibiotics at thhe same tme. On Decembber 14 2013 I woke up with very cold heavy legs and felt unable to move. I FPRCED myself out of bed to walk to get warm if nothing else as I was in hospital. No one took any notice of me .

      The signs and symptoms went worse over the next few months. I am now seriously uestioning whther all this was a kind of auto immune disease and the antibiotics was the last straw. The side effects of perampanel are horrendous and I only had four tablets 2mgms one every night x 4.

      I believe that this drug has been banned in some countries so why is it used here in Britain?

      I live in the same town whhere the nurse has just been found guilty of murdering patients with insulin contaminated drips.

      Jeanx

    • shellyC19
      shellyC19 jean34329

      Posted

      Hello Jean:  Oh my God, you sure do have a lot going on!  When did you start having Epilepsy?  Was it childhood or early adulthood?  Warfarin is an old-timey drug that makes the blood NOT clot.  Did you know that drug/chemical is used in RAT Poison?  It makes the Rats bleed internally.  In USA they use heparin, and newer drugs made for this.  I wonder why they still use warfarin?  It must be they get a deal on the drug.  Having a long QT segment your heart is not in proper rhythm, and you have to watch what you take.

      I can see why you can't take other meds to help your neuropathy.  They have found other ways to help neuropathy with nerve blocks but it requires injections and since you have other conditions, that might be contraindicated.  I never heard of Perapanel, maybe it goes by another name?  i will try and look it up later.  Why did you need it? 

      Oh my a nurse killing people?  I did not hear about that in USA, but we have our own problems too.  I hope you feel better, God Bless. Shelly

    • jean34329
      jean34329 shellyC19

      Posted

      hi Shelly

      PERAMPANEL the other name is fycompa for epilepsy.

      I was diagnosed with hippocampal sclerosis and TLE in 1991. It does not present like the text book description of epilepsy hence being able to get through nurse training with a deja vu every few years as the only sign and symptom. Then it flared up in 1990 and that was when I was investigated and diagnosed by a London hospital.

      Heparin keeps the blood thin and is used initially and if INR drops too low below the therapeutic level but warfarin acts in a different way to prevent blood clots.

      The new anticoagulant drugs are not suitable for me.

      Nurse killing people. He murdered several and harmed many more by inducing hypoglycaemic attacks. It has been on the news channels all day. He will be sentanced tomorrow. Expected to get a life sentance.

      Jean

    • shellyC19
      shellyC19 jean34329

      Posted

      Hello Jean:  Yes, I looked up that drug, fycompa.  I do not think we use that in USA. Yes, you are right Heparin is used in the hospital and then they change over to a newer drug.  If it does not agree with you, that is okay. Stay on warfarin.  It's been around forever. I am sorry you have hippocampal sclerosis.   Did you say you had a deep vein thrombosis?  That is very scary and could have killed you, so keep your blood thin!  Stay on warafin.  Lucky the clot did not get into your lung area.

      OMG,  to that Nurse who did that.  We have our bad people also. So sad to hear about this.  I guess our national news is so filled with our own bad people -they do not have time to report on another countries people.  LOL.  I enjoy this forum and back when I was diagnosed we did not have computers and the wonderful internet!  XO  Shelly

  • shellyC19
    shellyC19 Maggiemoo

    Posted

    Hello Maggiemoo:  I am an RN and live in USA.  I am 54.  I have some of the same symptoms.   Night sweats and hot flashes can be menopuase symptoms and or diabetes adult onset. I do not know if you fully menopuased yet, but  it can be that, also can be high thyroid signs and also signs of low thyroid.   So you need to have T3 & T 4 levels as well as TSH checked.  A mineral panel is also important to have tested.  They draw blood for that.  Also some people can develop an allergy to a food product or an ingredient in the food like sulfites and that can make some of the symptoms also.  Having the blood work done is a correct way to approach this.  Does thyroid problems run in your immediate family or say cousins?  This would be helpful to know. You may be swinging high and then low or vice versa.  how long has this been happening?  Try and see if anyone else in your family has a thyroid problem, as it does run in families and will help diagnose you better.
    • jean34329
      jean34329 shellyC19

      Posted

      Hi ShellyC19

      I am experiencing the sweats, nightmares, severe anxiety, depression, muscular aches and stiffness, peripheral neuropathy, headaches, loss of appetite, slow heart rate but was fast to begin with.

      I feel completely demotivated and depressed.

      I cannot get comfortable due to the peripheral neuropathy. I have osteomalacia, osteoporosis, osteopenia. I am unsteady and have spasms.

      I am nearly going out of my mind with all this. This started in December 2013 following perampanel x four tablets plus three lots of antibiotics prescribed at the same time.

      In April I had a cpa scan to excllude another pe and the multinodular goitre showed up as an incidental finding.

      I am tking life long warfarin .

      My two aunties had thyroid disorders but were hyper.

      Thanks

      Jeanx 

    • jean34329
      jean34329 shellyC19

      Posted

      Shelly

      Forgot to say I am intolerant to gluten, soy,yeast and milk. Recent finding at a nutrition clinic. I live in the UK.

      Jean

    • shellyC19
      shellyC19 jean34329

      Posted

      Hello Jean,  The thyroid gland controls so much in the body. It is called the "master gland" and it controls:

      1. Periods/egg ripen and ability to conceive

      2. Temperature

      3. Meatbolism

      4. Energy

      5. sends signals to other glands and brain.

      Many people get a condition called Hashimoto's Disease which is an auto-immune problem.  It causes antibodies in the body to attack your own gland as if it was a foreign object/tissue.  There are marker tests for it an antibody protein they can detect in the blood and sometimes they use a sedimentation rate test, this test is to see how long it takes for blood to settle in a marked time test. If it takes a while it can indicate a problem with an auto-immune conditon like LUPUS, Hashimoto's  or Rheumatoid Arthritis.  They do order in the USA a marker test so they can check for the above auto-immune problems. I do not know if UK does it, but I think they would.

      If you have a family member who has Hyper or Hypo Thyroidism it does help the doctor know and order these tests. They take a while to do so they look for a family connection as a way to link the need for these blood tests.

      Many thyroid patients get IBS or bowel problems. Avoid dairy helps and eating a protein diet more and low carbs can help.  You may be able to see a nutritionist in the UK and have them help you with diet items. 

      Night sweats and anxiety and depression can happen in thyroid patients so - please see s good GP or Endocrinologist and tell them about your symptoms.

      Now as we age and people who are low thyroid tend to get VIT D.  Low Vit D causes osteoporosis, and muscles to ache badly.  maybe you saw an old woman bent over and that is osteoporosis.  Today we can prevent this by taking good VIT D tablets.  The sooner the better.  It avoids brittle bones.

      Also have your blood glucose taken to see if any Diabetes is present.  That can cause neuropathy also.   I hope this helps.

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