Diagnosed as Grossly Hypo when will I feel better :(

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I was admitted to Hospital in Dec 2013 with Facial swelling, after being discharged with no known cause, I was re-admitted 4 days later with high protein levels in my urine.

It was initially thought that I had Nephrotic Syndrome, however after finally getting tests done I was diagnosed with being Grossly Hypothyroid my readings were:

TSH - 174 (one hundred and Seventy four)

FT4 - 5.6

FT3 - 1.0

Serum Creatinine - 119

Cholesterol - 8

I was immediately put on Levothyroxine 100mg and Simvastatin 40mg, my Levothyroxine was increased in Jan to 125mg.

My last test showed

TSH - 2.0

FT4 - 20.6

NO FT3 results

Serum Creatinine - 75

Cholesterol - 2.6

My GP has now said I am normal ! and has lowered my Simvastatin to 20mg/day.

Well if this is how normal feels, I would hate to find out what abnormal is, I now suffer with extensive pressure in my neck, hard to swallow, severe pain in my great bone, extreme fatigue which seems to catch up with me and then wipe me out completely, hair loss, periods of feeling cold and other times night sweats, I struggle sleeping at night constant clock watching till around 4-5am if I don't then get up I then can sleep all day!!

I am getting so frustrated with it all, I never get to see the same GP and end up going over and over the same things again and again, some say my conditions relate to me getting stressed about it all, and yes now I am as no one seems to be listening to my symptoms my test are "in normal range" so I must be.

I have persuaded one of the GP's to let me have a thyroid scan, so will see what that shows.

Has anyone else been treated like this, am I being completely stupid ??? are all these things in my head. Any advice to thoughts more than welcome.


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4 Replies

  • Posted

    You need your ft3 checked! Thus us the active part of the hormone that available for the bodies cells to use!
  • Posted

    I know exactly how you are feeling & you are not stupid & not alone there are people out there to help you. I know that because they are helping me after years of being treated for everything except the real problem my thyroid.Look on the Stop the thyroid madness website they are very good& you will learn lots, also Thyroid UK .dont give up you can get better care but probably not from your Dr because they all wear blinkers when it comes to Thyroid treatment you have to learn as you go along.I have found out lots and you can too
  • Posted

    Hmm ,, its so easy to jump about with regards what to do.

    Doctors are human beings, very much so, and for all doctors to know all the possibilities and corrections is 100% impossible, they are general medical practitioners not supersonic humans.

    Go sit in a docs waiting room and note which doc is calling them through quicker,, generally,, then avoid that doc or at least be dashed cautious.

    The job is to find a doctor who has passion about his/her work and also,, to read up about it yourself so you can have a sensible logical conversation, don’t be apprehensive in this regard.

    Walk together down the pathway to getting it resolved together, logically, remembering that the doc may have passed a medical exam but when it comes to disseminating information he or she may not be so good, after all and to be fair understanding all the intricacies is really quite a hell of a job, and they have generally 10 minutes,, then assuming they know all about it which they,,,, don’t,,,,,cant,,, its quite a task, cannot be done logically because of the variables, I am sure we all appreciate that.

    Dropping your dose or changing it in ANY way needs to be done with your docs blessing, walk together doing this and remember you’re the one who is the barometer of these changes.

    As you are aware different people suffer in different ways, because we are all different, and when it comes to the thyroid the permutations are quite massive. Its best to take your tablet at roughly the same time each day before eating anything and with water, its perhaps wise to avoid caffeine especially at this time, I take mine with decaf tea and 30 mins later have a normal instant coffee, no food yet,, but that’s me  .

    Avoid taking stimulants like coffee (caffeine) to much, stimulants heighten the senses and you can do without that.

    I have found over time (for me) that even splitting a 25 micro gram can be desirable, doing this by having 125 one day and 100 the next and so on can be the answer for some.

    If your heating up then I would say your on to much, (I was once) and I know what I would do, but you must do what YOU need to do hand in hand with your doc, your drop was quite a lot as some agree, but then 175 is a fair wack and I expect your doc took that into account, go back and try for 150 with the docs blessing, then remember that over time it may creep one way or the other, depending on you and your lifestyle, health etc. The old boy scout motto of “Be prepared” is wise. it may take more than the 6 weeks period to take real effect, keep trying, be patient (and patient ).

    Really long term its worth remembering that thyroxine has a half life of between 6 and 10 days (seven if you like) (lots of factors) and a half of a half of a half of a half goes on forever, never getting to zero, if indeed it’s a real half life. You can work out what that means.

    To quote the medical profession themselves the principal pharmacological effect of thyroid hormones is to increase the metabolic rate of body tissues, There may be a chap out there who it doesn’t make hot easily,,, there we go,,, we are all different,,, how do you know you are different,, you have to find out, go see your doc, one who you can talk to, its magic.

    Whatever you do, do it with your doctor, one who will listen, you can both learn. Good luck.


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