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Trying to get doctors to listen and test

Posted , 5 users are following.

angieM
angieM

Hi

I was wondering if anybody can advise me or offer information.  I am in terrible pain all over the body and have symptons of an underactive thyroid.  I had a test done which came back boarderline and then another test which the doctor just said was fine.  He sent me for an xray on my hips but he thinks this will be all fine, just elimination purpose.  He didnt listen to me at all and I came out devastated as he just said its probably 'fibromyalgia'.

After a terrible weekend feeling like my life is on hold due to pain and inability to function normally, I decided to research myself.  I have been back intouch with the surgery and have asked for a doctor to ring me and go through my blood results, can I suggest that she sends me for ft3,ft4 and TSH levels, not the same doctor I hasten to add?

Has anybody out there had severe pain an dbeen treated successfully?

I am so glad for this forum an dthe information it provides.

Any advise or information greatly appreciated.

Yours hopefully

Angie

 

0 likes, 12 replies

12 Replies

  • shellyC19
    shellyC19 angieM

    Posted

    Hello AngieM:

    My name is Shelly and I am a nurse in the USA.  I have Hashimoto's thyroid disease.

    Symptoms of low thyroid are: weight gain, feeling cold, brain foggy, unable to concentrate, muscle aches, brittle nails and dry skin, being tired a lot despite rest, low pulse/heart rate.  There are more but these are common ones.

    certain blood tests, TSH, T3 and T4 levels Ft3 and Ft4 and TPOA antibodies level help diagnose it. You should ask the GP to run these blood tests.  If not, ask for a referal to an Endocrinologist who specailty is the thyroid and glands.

    Along with the above Thyroid blood work, please get a mineral panel, to include: Potassium, calcium, magnesium, sodium, iron and ferritin levels, and Vit D and B-12.

    Many of us with thyroid problems are low in Vit D and when you are low you may feel muscle aches and pains.  B-12 is for energy and it can be replaced.

    Many of us, start out boderline and may have been missed, so it would be wise to ask for these tests. When you get your blood work and you are allowed your copy of it. Then come back and post the results and we can discuss it with you.

    Thyroid disease can come from a family trait, (DNA as in autoimmune), or it can come from a virus called Epstein-Barr also called MONO.  Thyroid diseae has been known to attack women between  the ages of 20 to 40 yrs. old. Some people get it from another condition like Lupus or even cancer in the body.

    It is treatable and you can live a good life.  I am now 54 and have had it since 1987. 

    Any questions just ask, many of us have been in your shoes and can help you.

    Regards,

    Shelly

    • angieM
      angieM shellyC19

      Posted

      Thanks Shelley, I have made a note of the blood tests you mentioned.

      Wish me luck as I speak later today to a doctor.

      Thanks again for your input

      Angie

    • angieM
      angieM shellyC19

      Posted

      Hi Folks

      Well that seemed a waste of time the doctor gave me the following information:

      Said my thyroid Tf4 was normal at 17, TSH was 6.49 previously but had come down to 5.34, low Vitamin D. Not clinically sound to go any further with investigating the thyroid, her words.

      She got very defensive when I tried asking her questions and I really dont know what to think now.

      I've got  adoctors appointment in 2.5 weeks, so I need to start gathering information.  I have been sufferring with perimenopause and this can cause the same symptons, again any help or advise is most welcome.

      I feel at a loss but know that my body is not right and I am getting really frustrated at not being listened to.

      Many thanks

      Angie

    • shellyC19
      shellyC19 angieM

      Posted

      Hello Angie:

      TSH normal is  0.45- 4.50 UK ref. range,  (USA ref range 0.34-5.60), but you are  at 5.34 but that means you are Hypothyroid.  With your previous blood and this one, you are not exactly normal range.  I think you need a better GP! 

      Here is what I would do:  Please write her an e-mail or fax a letter to your GP and be to the point on the reference above and demand that she send you to an Endocrinologist. Then I would contact a patient advocate at the medical facility you go to.  When you write a letter it has to be included in your file, and allows for a start of a paper trail.  It also shows you mean business!  I also would say in the letter that if I am left untreated, a lawsuit may happen.  Please take Vit D because that can be also giving you problems. I also am low in that and take 2000IU a day.

      Do not let her win, you are experiencing the symptoms of low thyroid and please document the symptoms.

      Many women get Hypothyroid in later life and esp. during peri-menopause as it puts stress on the body.  There are dumb doctors and the thyroid is a complex area, and not all doctors understand it. I am just being truthful, because symptoms mean a lot.

      So please write a letter and fax it or e-mail it or even snail mail it. 

      As to Peri-menopause, (I am going through it also), does not cause all of the symptoms you have. You may experience warm/hot flashes from the neck up, feeling moody, infrequent periods, but it is not like the thyroid symptoms. 

      Also in the letter you need to say, you want a starter dose of 25mcg Levothyroxine.  You have nothing to lose and like I said once a letter is written they have to respond and it documents your appointment.   Send a copy to whom ever runs the medical facility you go to.

      I hope this helps, I am in the USA but many of the women on the forum have written letters to  their doctors or the advocate.

      Keep us posted,

      Shelly

       

  • tcb04
    tcb04 angieM

    Posted

    Hi Angie I had an overactive thyroid then had rai treatment. Which then causedunderactive thyroid. Cut a long story short after a very good consultant my thyroid is now touch wood stable. However because of the thyroid problems I now have fibromalgia and the pain is cronic I am now waiting to see a specialist.in dec.as.most medicines have not worked but it is pain all.over body, they diagnosis it by pressure.points effects your sleep 💤 makes you depressed,but hang intherr

    • angieM
      angieM tcb04

      Posted

      Hi tcb04

      Yu are right about it effecting sleep and the feeling that I may be like this forever more does make me very down at times, once I know what I'm dealing with I think it will help.

      Hope all goes well for you when you see the specialist in December.

      Angie

    • tcb04
      tcb04 angieM

      Posted

      Thank you and good luck to hope you get it sorted.

      Denise

  • barbara98940
    barbara98940 angieM

    Posted

    Hi angie also ask for zinc and selenium to be added to the list of things to be added to the blood test (as these are needed to convert T4 (thyroxine - that your thyroid makes) to T3 (liothyronine - the active thyroid hormone that gives you energy). Ask for a printout of the results (the receptionists at my doctors do this).

    A couple of ideas of what might cause the pain: I get really bad pains in my joints when I've eaten something I'm allergic/intolerant to. Allergy tests can find out what you're allergic to, but the only way to find out intolerances is by following an exclusion diet. Usual candidates for causing allergies are: dairy, gluten, soya, seafood, wheat. So try cutting these out and then reintroduce foods one at a time every 2 days. Obviously you can't do this if you're diabetic or have other health conditions that might be adversely affected.

    I also get bad pains in muscles when my thyroid hormones aee too low.

    • angieM
      angieM barbara98940

      Posted

      Thanks Barbara, I have added zinc to the list, I am speaking later with the doctor, see what she says.  I just want to get a proper diagnosis so that I can start to get my life back on track.

      Thanks for your input

      Angie

    • angieM
      angieM barbara98940

      Posted

      Hi Folks

      Well that seemed a waste of time the doctor gave me the following information:

      Said my thyroid Tf4 was normal at 17, TSH was 6.49 previously but had come down to 5.34, low Vitamin D. Not clinically sound to go any further with investigating the thyroid, her words.

      She got very defensive when I tried asking her questions and I really dont know what to think now.

      I've got  adoctors appointment in 2.5 weeks, so I need to start gathering information.  I have been sufferring with perimenopause and this can cause the same symptons, again any help or advise is most welcome.

      I feel at a loss but know that my body is not right and I am getting really frustrated at not being listened to.

      Many thanks

      Angie

  • angieM
    angieM

    Posted

    Hi Folks

    Well that seemed a waste of time the doctor gave me the following information:

    Said my thyroid Tf4 was normal at 17, TSH was 6.49 previously but had come down to 5.34, low Vitamin D. Not clinically sound to go any further with investigating the thyroid, her words.

    She got very defensive when I tried asking her questions and I really dont know what to think now.

    I've got  adoctors appointment in 2.5 weeks, so I need to start gathering information.  I have been sufferring with perimenopause and this can cause the same symptons, again any help or advise is most welcome.

    I feel at a loss but know that my body is not right and I am getting really frustrated at not being listened to.

    Many thanks

    Angie

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