no one listens

[Shreddie]

47 years old, severe depression - on fluoxetine, hospitalised with chest pains - told it was anxiety.  No period for 2 years...told it was menopause.  Hair loss - head, pubic hair all gone, eyebrows too only half the size they were.  Tingling, numbness periodic sharp pain in hands and feet, and sometimes legs.  Itching rash on hands which flares up and dies down daily.  Extreme fatigue - sleeping a LOT.  Feel as though my throat has something in it.  Hoarse voice but not all the time.  Pain in my neck and ears.  Extreme weight gain - steadily rising, I have gained 30 pounds in past few months despite trying to lose weight...this is a lot because I am only 5' 2".  My nails break very easily and my vision is gradually getting blurrier.  I get headaches every day and I basically feel dreadful.  Was tested for thyroid problems in September and told I was normal.  I have gradually been getting worse and worse and the symptoms are piling on.  Doctor seems to think I am hypochondriac.  Please....what is wrong with me?  I feel as though I am slowly dying.

[Shreddie]

Dear carolT,

Thank you for your message and I am sorry to hear you are still, after all this time, suffering such awful symptoms.  I cannot advise you because I know so little about this disease...but please know my thoughts are with you and I hope you find a solution soon.

[carolT]

I can completely understand all you are going through.  I have had thyroid problems for 40 years although it was not diagnosed for 10 years (I am 52). Endocrinologists have all given up - say I am a mystery. TSH has been as high as 81 on synthroid. I am currently taking T3 but it is now not helping much. I know it is scary to find lumps, I have too. I just recently went through a PET scan and found out that my thyroid is growing down into my neck and under my sternum.  The lump you feel in your throat is also normal if your thyroid is internally enlarged. I choke easily and feel like I have to clear my throat or cough. I also am exhausted, have headaches, blackouts, constant muscle and joint pain,  and now my muscles are spontaneously tearing through.  I have to take one day at a time because I never know what is going to happen.  Don't give up is my motto even though some doctors think I am making it all up. I think when you feel terrible all the time depression is inevitable. I take Cymbalta although I don't think it has helped depression or aches and pains. I hope you can find a doctor who will listen!
PS  has anyone who reads this had spontaneous tearing of muscles due to thyroid. Doctors have no clue but right now I can't lift my arms because biceps and suprastinatus muscles (shoulder to chest) are torn.

[Shreddie]

Thanks Cheryl.  I am having a really bad day...I found a lump between my collarbones and one in the left side of my neck last night and I have lost my voice.  I panicked and went to the doc (which was a tremendous effort on my part) who said he could find no lump - though he didn't check where I said.  When I insisted there was something he gave me co-codamol.  He also said I need to go to the menopause clinic because I am perimenopausal even though I haven't had a period for 2 years and also said I just have to wait for the thyroid test results which could take another week.  I've to just wait.  Never mind that I can hardly walk I am so fatigued and have 2 kids to take care of.  Never mind that I can't swallow and my eyesight is blurring and I feel as though I am falling to pieces.  Never mind that I am so worried about the lumps which apparently don't exist.  They just don't listen do they?  Maybe in a week I will get someone to hear what I am saying.

[ChitChatNine]

Feel free to visit the depression community ... or you can PM the CL over there .. her name is Paramedflorena ... or Hensley258 .. both women are wonderfully supportive .. let them know I sent you over if you go or PM either one ok?

Hang in there .... if it is thyroid it can mess you up like this .... it is so misdiagnosed oftentimes .. so you trust your instincts ..

Cheryl

[Shreddie]

Hi,

Thanks for your message.  I appreciate your good wishes and want to send some in return.  It is awful that people have to go through so much...and all the wait and see sounds fine to the medics but they seem to forget that each wait is time out of our lives...time that is virtually wasted due to ill health.  I fully sympathise with the 1-2 hours a day thing...I manage a couple more than that but most of the time I am laid up too.  I can't remember a time ever that I have wakened and felt refreshed it is so long ago...  

You are right that we must just hope and pray.  Good luck in your quest for health.

[AJWS6]

Hi,
I understand all your going through, hope you get some answers & treatment soon, hope you feel better.  

I have been battling a thyroid condtion now for 1.5 years, I have thyroid mass of 5.5 x 3.3, I have a crooked windpipe, the shape of a C, surgeon does not want to remove, for the reason all my tests are normal, which is making the quality of my life very poor & miserable, I have had many tests done, they all return normal, and yet I can only get out of bed 1-2 hours per day, and the rest of the time, I lay in bed from exhaustion, no matter how much I sleep.  I've lost 82 pounds in a year, muscle pains, dizzy, distorted vision, etc....  And yet, nothing can be found.  I could write a book concerning all I've gone through the past 1.5 years.

We just have to hope & pray, for answers, and I hope they come soon.  Hope you feel better soon.  
  

[Shreddie]

Thank you very much for replying...I am so grateful for your taking time.  I am in the UK too J...I haven't seen the results from September's test...I've been feeling so low that it is difficult to even stand up for myself and the GP seems so disinterested...in fact when I said my hair was falling out he said it wasn't because I have no bald patches.  I have managed to get him to take more blood for further tests and am having thyroid and hormone tests done though they won't be back till next week.  My quality of life at the moment is nil...I can only stay on my feet for an hour before needing to lie down again.  I can't drive, have difficulty getting up and down stairs because I am breathless with any exertion and it is all a bit overwhelming.   Just when I need to be standing up for my rights I have no energy to do so.  Can I ask to see an endicronologist and how long will it take for an appointment on the NHS?  As a widow and single parent I have no partner to help out and have been too unwell to work so we are a bit strapped financially..though I would gladly sell anything if the cash would help get a diagnosis.

I will ask for a copy of my results but any other suggestions would be very welcome.  And thank you again.

[redhed87]

Did you get a copy of your test results?  Usually general practicioners look at only the numbers and lab ranges or the normal right after each number.  An endocrinologist or other doctor might look at the actual TSH number.  Get a copy.  It's your right.

[jeblondon]

Hi there, you will find a lot of information here and some very knowledgable people to help you with ideas/possible answers.  
I am also 47 and a year ago was feeling miserable and sick all the time.  Mentally I was very low and thought, like you, that I people assumed I was just hypochondriac. You are not - you just need to be heard and to get some answers. Some of it is possibly menopausal-type symptoms - I am getting lots of those as well as the thyroid stuff! But you need to be able to separate it out.  I know how hard it is when you feel like you are drowning and no one is listening.
You didn't say if you have seen an Endocrinologist?  If not perhaps that might be an idea as they are the Thyroid people.  I had a lot of the symptoms that you are describing and was refered to one by my Doctor, (the system is different her in the UK), and have found help.  As well as treating my thyroid problems - I have had a nodule on my thyroid removed plus half of the thyroid itself - he diagnosed me as having Coeliac Disease which is a total intolerance to gluten in the diet.  When I went g/free the difference to my life both physically and mentally was incredible.
I would say you definitely need to get your symptoms further investigated and maybe a different opinion.
I am no expert as I am fairly new to all this but I have found this forum an incredible source of support and information.  If nothing else it is so reassuring to know that you are not the only one out there and that you can come here any time.  Hang in there and keep asking questions.
kind regards
J

[stella5349]

If it is thyroid related - could you put your lab number here in your post? It would help alot to see those numbers.