latest appointment.

[brjoyce]

i finally got to see an NHS endo last monday what a waste of time. she didnt seem concerned about my neck pain and said i should forget i have a thyroid problem.she took no blood pressure or pulse reading. on the electronic board in the waiting area it stated that last month 1400 people didnt attend their out patient appointments. I cant say I blame them when we just get fobbed off.

[gimel]

We hear from many UK hypothyroid patients with the same story about how they are inadequately diagnosed and treated due to the over reliance on TSH and Free T4 levels compared to the so-called "normal" ranges.  That does not work for most people.  TSH is a pituitary hormone that is affected by so many things that at best it is only an indicator, to be considered along with more important indicators such as symptoms, and also levels of the biologically active thyroid hormones, Free T4 and Free T3.  A good thyroid doctor will treat a hypothyroid patient clinically by testing and adjusting Free T4 and Free T3 as needed to relieve symptoms, without being constrained by resultant TSH levels.  Symptom relief should be all important, not just test results, and especially not TSH results.   Many members here have gotten the best results by getting Free T4 to the middle of its range, and Free T3 high enough in the upper half of its range, to relieve symptoms.  So those should be the objective for future discussions with doctors:  being treated clinically for symptoms, by testing and adjusting Free T4 and Free T3 as needed to relieve symptoms.  

One of our members from the UK who had the same difficulty with getting properly diagnosed and treated was finally successful after going to a number of doctors.  This is what she told us.

"What I have learned from my experience is that you have to go to the Dr's office and TELL THEM WHAT YOU WANT and to go backed up with knowledge.  You have to tell them that you have done your reading and looked into your condition and care about the long-term treatment of your health and thyroid.  If you fight for what you want, you will eventually find someone that is happy to go along with your wishes.  But we all have to take charge of our own health, right?"

So for your next doctor appointment, we need to help you get better prepared.  I suggest that you can get some good info from this link written by a good thyroid doctor.  

ww.medhelp.org/posts/Thyroid-Disorders/latest-
appointment/show/2882579#post_13857138

In addition, hypo patients are frequently too low in the ranges for Vitamin D, B12 and ferritin.  You should try to get those tested and then supplement as needed to optimize.  D should be about 55, B12 in the upper end of the range, and ferritin should be about 70.

Please stay with us and let us know of your progress and we will try to answer any questions and advise further.  

[brjoyce]

many thanks gimel i have informed patient relations at the hospital (where i also work as a nurse although it makes no difference). their going to look into things for me and try to get a second opinion.

[gimel]

Certainly a T4 of 10, with a  range of 10-22 would be suspect to me, and an indication of the need for thyroid med.  In addition, even though TSH is a poor indicator of thyroid status, a TSH of 10.8 would also be an indication of the need for thyroid med.  You mentioned "before your were treated".  What treatment are you talking about?  Are you taking thyroid med?

[brjoyce]

i was put on levothyroxine in 2014 four months and a blood test later the dr refused to give me any more the TSH was 4.02 apparently my thyroid had 'healed' the following week i felt ill and my daughter took me to A and E. no-one had any answers. i had another blood test 6 weeks later at a new surgery TSH was 6.85 with high antibodies and a student dr to her credit diagnosed hashimotos.

[gimel]

Just because your thyroid test results are within the range does not mean that is adequate for you.  Due to the erroneous assumptions used to establish ranges, they are far too broad to be functional across their entire breadth for everyone.  If you will please tell us about any and all symptoms you have, and also post your test results and reference ranges shown on the lab report we can better assess your status and make some suggestions.

[brjoyce]

thats why i think ive been incorrectly diagnosed gimel as the lab range for T4 where i live is (10-22) before i was treated my T4 was just 10. at the moment iam still waiting for the lastest blood results but back in 2004 my TSH was 10.8 does that sound like borderline to you? I wasnt told the results at the time and assumed everything was ok. I did feel unwell at the time but put it down to just having lost my mother then a few years later my father died suddenly.

[brjoyce]

i have neck pains in the night, constant urine infections,itching skin to name but a few. the endo seems to think the neck pains are anxiety so now iam back under a mental health team for the 3rd time this year.

[gimel]

How did the Endo come to the conclusion that you did not have a thyroid problem? Have you ever been tested at all?  What symptoms, if any, do you have besides the neck pain?  

[brjoyce]

i was diagnosed with hashimotos 2 years ago but the gps and endos i see always say the same 'well bloods are in range no problem' I did however have a private scan done where a physician said i have signs of thyroid gland fibrosis.