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Undiagnosed

Posted , 6 users are following.

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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  • Nickademus
    Nickademus Maggiemoo

    Posted

    Hi Maggie

    I have all those symptoms with my Sarcoid but some of them are due to side affects of the medication. I cant regulate my bod temperature. If I get too cold I struggle to warm up. Particularly in the evening I heat up after tea about 8pm onwards and them I overhrat. Its like a hot flush but im not menopausal. I lost quite a bit of weight before diagnosis but I had cut out dairy and wheat from my diet so I put it down to that.I lost more weight in hospital mainly because I was too ill to eat and the food wasnt fit for pig swill! After over 2 years on steroids Ive put it all on and more and its very slowly going down, my weight and people are commenting but its for me, one of the biggest battles. I have a cough which is normal and when I do cough it scares people that its so strong. Its worse now im off steroids. I get deep strong pain in my joints and in particular my elbows. A friend who has sarcoid in her skin also complains of pains in her elbows. My hands go numb and I suppose its the same as RSI. I cant always use my hands and my left is worse as Im left handed. I understand that is a side effect of medication.It could also be a trapped nerve. Night sweats were proliphic when I was diagnosed and whilst I still get them they arent as intense. I do get them in the day too especially I get stressed. I had an interview the otherday and got ready, make-up done, hair done etc and as i finished getting ready I had a hige sweat, my hair was soaked through and had to dry it and start again and my face slid off. But its how it is. The chronic fatigue is a massive one too

    Im not a medic in any way but your symptoms do sound menopausal related. Be careful what you read medically as I have all the symptoms of thyroid issues but I dont have a diagnosis. You can have thryroid issues but it depends on severity. If you dont hit their scale they will tell you there is nothing wrong even though you are symptomatic

    .I imagine that is financially based. As tough as it is, wait for the diagnosis or you will drive yourself mad

    All the best

    Nicola

    • jean34329
      jean34329 Nickademus

      Posted

      Dear Nicola

      You mention the side  effects of meds. Could you elaborate on this please because I blame some of my signs and symptoms on side effects.

      Thanks

      Jean

    • Nickademus
      Nickademus jean34329

      Posted

      Hi Jean

      well for my hands and arms - I dont have the grip or the dexterity I had, I shake a bit and cant hold things. I have a weakness in my arms and wrists. I read this is a side effect but cant remember which tablet. I will look at the sheet when i get a new prescription. The combination of tablets I take cause severe dry mouth added with the cpap machine my mouth makes a budgies bird cage seem like a pool its so dry. They also cause my eyes to be dry, I have limited use of my contact lens. They dryness has damaged the surface of my eyes. Incontinence, I have to pee immediately and same at the other end.which can be a problem. My food intolerance is poor, upset stomachs, all affecting my liver. Then there is the itching. Oh my word. Its deep and burning. mood swings, skin ulcers, hair falling out, nails are so soft they rip. Foggy head all the time, not thinking straight

      I take prednisolone, hydroxine, ibuprofen, co-dyramol, frusomide, hydrochoxocloroquine, losartan, Vit D, 

      I know I take a water tablet but they have regulated the incontinence

      Hope they help

      Nicola

    • jean34329
      jean34329 Nickademus

      Posted

      Thanks for replying.

      I feel rather guilty asking for details.

      I recognise that some of the meds may be responsible.A HOSPITAL REGISTRAR  then a pharmacist recentlly told me that one of the drugs I am prescribed and which you are also prescribed for high blood pressure can cause swelling and burning in the legs.

      I am also taking warfarin, however the cause of the swelling was investigated and thought not to be another deep vein thrombosis. 

      Jean

    • Nickademus
      Nickademus jean34329

      Posted

      please dont feel guilty, its how it is

      My legs swell massively, hence the water tablets.

    • jean34329
      jean34329 Nickademus

      Posted

      Dear Nickademus

      Thanks for your response. I am sorry to hear this. I feel tht it may possibly be due t medication but that is what a dr told me about three weekks ago.

      I am agoing to ask my GP to review my meds and posisblly change/lower the dose of the valsartan as suggested by the hospital registrar..

       

  • shirley68565
    shirley68565 Maggiemoo

    Posted

    Hi. I had a parathyroid removal recently which has been a success however I still am having sweats and palpitations like you. I thought these could be part of the parathyroid problem but when I saw my consultant last week he is testing me for phaeochromocytoma which I had never heard of but is to do with a tumour on the adrenal gland. All might be fine after the 48hr urine collection and heart monitor, we'll see. I do not have blood pressure and have been tested for thyroid but was told my levels are fine. I am on vit d 1000.

    Shirley

    • jean34329
      jean34329 shirley68565

      Posted

      Shirley/Maggiemoo

      Incorrect calcium levels; can cause all sorts of signs and symptoms.

      This is why it is importaant to take calcium as well as vit D because Vit D alters calcium levells in the body.

      This is what my neurologist told me.

      A LOW CALCIUM CAN MAKE YOU FEEL PRETTY ILL, AGAIN MY NEURO TOLD ME THIS.

      JEAN. Sorry caps left on.

    • shirley68565
      shirley68565 jean34329

      Posted

      Hi. I know. That was what the parathyroid operation was for. The parathyroid the body to make too much calcium and a problem with vit d. My calcium is fine now and the parathyroid hormone level is normal.

      Shirley

    • jean34329
      jean34329 shirley68565

      Posted

      Hi Shirley

      t least you got the parathyroid sorted out. My pth was 10.8 but nothing done about it by neurologist. I take phenytoin for epilepsy which depletes the bones of calcium bypreventing the intestine from absorbing calcium. This lowers the Vit D.

      I have reduced the phenytoin right down but signs and symptoms continue.As discusssed previouslly I have a multinodular goitre , this was a very recent diagnosis as an incidental finding on a CTPA scan.

      I take a beta blocker for long qt syndrome and anti hypertensive drug for high blood blood pressure.

      I have a kidney problem with reoccurring cystitis.

      The more I read the more convinced I am that these conditions are linked.

      Feeling very stressed out with all this and especially with the signs and symptoms.

      How do you cope with it all?

      Jeanx

  • ooops64
    ooops64 Maggiemoo

    Posted

    Yes does sound like underactive Thyroid (Hypothyroid) or like me Hashimoto disease which makes you sometimes underactive. Your blood test should let you know, however because my Hashimoto, it took a long time for the labs, to find this fact. 
    • jean34329
      jean34329 ooops64

      Posted

      Hi ooops64 and Maggiemoo

      regarding the diagnosis of Hashimotos Disease.

      Please, please could you tell me how it was diagnosed/ What tests were done etc.

      I am feeling desperate due to the signs and symptoms and have very recently was diagnosed with a multinodular goitre . This was an incidental finding on a CTPA scan using contrast medium of iodine that was done to exclude a pulmonary embolism.

      I also have epilepsy, vit D deficiency disorder, long qt syndrome. I am taking a small dose of phenytoin now as well as clobazam for epilepsy. I take an anti hypertensive drug , warfarin, Vit D3 and calcium, I have been taking codeine albeit not supposed to as it caused chronic migraine in the past.

      However i could not stand the spasms, cramps, burning sensations in both buttocks, thighs, legs, feet and soles of feet.

      Now I started with hheadaches some five days ago possibly due to the codeine which was prescribed. I am not going to take any more because I do not intend to have any more headaches.

      I started with severe headaches in December 2013 and hhad it continually until the end of May 2014 when I saw a neurologist who speciallises in chronic migraine. He told me that even though I was only taking between 3 to 4 a WEEK, yes a WEEK, that that was enough to induce a analgesic/codeine induced chronic migraine.

       I stopped taking the co codamol and about ten days later the headaches subsided.

      I have been headache free since June 2014 until five days ago when I started to take codeine for the pain caused by the viit d disorder, osteoporosis and probably as the result of the thyroid disorder which as of yet is undiagnosed. 

      I am feeling extremely anxious all the time mainly due to the fact that the multi nodular goitre was not even suspected as being the possible cause of my signs and symptoms and because it was found completely by chance when as I keep writing on this Forum I had a CTPA scan for a suspected pulmonary embolism.

       I am worrying now that the relevant blood tests will not be done due to cutbacks etc.

      The reason for the worry is because on the phone a nurse practitioner in endo told me that the hyper and hypo swiings. She told me to ask the GP  to get an urgent referral to endo surgeon and also to do TSH, Free T3 and T4. The nurse said that thyroid antibodies did not need doing!

      I  feel so puzzled by these inconsistencies. 

      Supposing the diagnosis is missed?

      Jeanx

       

  • ooops64
    ooops64 Maggiemoo

    Posted

    After many ears of feeling fatigued, and having blood tests for Hypothyroid problems. I finally got the not surprising diagnoses. I had been told previously by my GP, that I will probably one day have to take

    Levothyroxine .  I was usually borderline underactive. The thing was I had bouts of Hypothyroidism, I would not feel like going to the doctor and getting blood test as I felt so rotten. I would slightly improve then go. I used to get a swollen tongue, this was one of the 28 symptoms of Hypo, you do not have to have all of the symptoms either. I was never overweight one of the most popular ideas of someone Hypo. Onone of my visits to the doctor, he gave me the blood test paperwork, and said have it taken in 6 months. I did not do this, I waited till I felt one of my really rough times coming, I got my husband to take me to the hospital for the blood test. No long after I went to the Dr he said I was going to phone you, you have Hashimoto disease. I had read about this as I always felt this was the reason I had swings of good and bad health. Apparently I read it is the Lab who makes the decision to test for Antigens (Hashimoto Antigens attack the Thyroid Hormones that will make you underactive) after the look at the TSH levels at T4 levels. Obviously the lab saw something and tested for Antigens. I have to take just a small amount of Levothyroxine, as a precaution as the Antigens are not always in my system so high. So I have a blood test every 6 months, or if I am feeling rotten will go to doc. I used to weigh around 9stone 4lb now I weigh about 8stone. 

    Hope that helps Regards Maureen

    • jean34329
      jean34329 ooops64

      Posted

      Hi ooops64

      This is so revealing

      May I ask you do you knoow tha range or the specific test that was used to diagnose Hashimotos> I am determined to get these tests done but I understand  that all the tests especiallt FreT3 and T$ have to be done at thhe same time for comparison.

      I think that the test for the Hashimotos disease is called the TPAO but I am very unsure.

      Do you know if I am correct in thinking this or not.

      Jean

    • shellyC19
      shellyC19 jean34329

      Posted

      Hello Jean,  Yes Protein marker tests help diagnosed Hashimoto's Disease. Also sedimentation rate tests which help identify it, are used. You are correct T3 (sometimes called Free T3 & Free T 4) must be done together. Your Thyroid gland takes the T4 and coverts it to T 3 and in some of us, we do not do that do to the Hashimoto's disease.  It tells the doctor if the thyroid is making the 2 hormones or that the medicine (replacement thyroid) is working.   Not having these tests is kind of foolish in modern medicine.  Ask the doctor to test for it.   i hope this helps.  Ask any question you need to and I hope this helps.
    • jean34329
      jean34329 shellyC19

      Posted

      Hi shellyC19

      Thanks for this info which is invaluable .

      Can you please advise as to whether thyroid disorders cause neuro muscular problems. If so is this reversible and how long would it take?

      Thanks

      Jean.

    • shellyC19
      shellyC19 jean34329

      Posted

      Hello Jean:  I never heard of Thyroid disorders causing Neuro-muscular problems  per se.  Certain Neuro- Muscular diseases like MS and Duchenne's Muscular Dystrophy can run in families, and may have a genetic code in the DNA of the person.

      Having an Auto-immune condition like Hashimoto's Thyroid Disease can be related to Lupus, Rheumatoid Arthritis.  These are known aut-immune diseases.

      Now, having that said, you need to have a proper thyroid level for medications to work on another disease.  Having low thyroid for years undiagnosed can lead to muscle atrophy, (shrinking of muscles), and it can lead to brain chemical problems.  If brain chemicals get so low because not enough thyroid is coming in, you can see problems with concentration, thinking, ability to have and follow directions, and motor skills like doing a task.

      Having thyroid horomones replace the needed horomones but do not cure it. if meds stop, symptoms will return.  The body must have the horomones and the Thyroid makes 2 very needed ones, which are T3 & T4.  It can be replaced by pills which help to stop the bad symptoms and many people have different levels of relief.  if caught early in life, less damage to the gland and body.  If caught later a Goiter may develop and that will not go away.

      I suppose if it was not diagnosed or treated you could see other areas of the brain act up.  You should get tested to see if you have Hypothyroidism and if so get on meds for it. I hope this helps.

    • jean34329
      jean34329 shellyC19

      Posted

      Hi Shelly

      I did have a pulmonary embolism.

      anyway I will know more about the goitre after seeing the endo surgeon and physician. I expect to be seen in two weeks time.

      I hope the nodules in the goitre are benign.

      Thank you for your supportive comments.

      How are you.

      Jean

    • shellyC19
      shellyC19 jean34329

      Posted

      Hello Jean,  Oh my having a Pulmonary Embolism,  that is a very serious situation and you are so lucky to be alive!  Most of the time nodules are benign but they can turn cancerous in some people. The only problem if the nodules interfere with swallowing or get so big that they press on the trachea.  I have 3 of them all benign.  Nodules can also cause the thyroid to not work well.  So keep the appt. and let me know how it goes.  They can remove the nodules most of the time without having to remove the gland.

      I suffer with Hashimoto's and I really had symptoms back around 12 years old.  I was always cold and I grew up in Pennsylvania.  I hated snow and cold weather.  So I moved to Hawaii and have been here ever since.  I stay warm, as the weather is always 75-84 degrees. I was diagnosed at age 27. I developed a Goiter and it has stayed despite meds.

      We all get something in life and now I am 54, and I love being able to connect with people who have what I have.  When I first heard of it, I felt alone and knew nobody else who had it.  I wish we had the internet back then! 

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