help with results/serious symptoms

Thyroid Plus full test: Total thyroid T4 (127.0) range 58-154nmol/L, Thyroid stimulating hormone (TSH) (1.90) range 0.4-4.0, Free thyroxine (Ft4) (14.9) range 10-22pmol/L, Peripheral thyroid function: Free T3 (6.59) range 2.8-6.5pmol/L, FT4:FT3 Ratio (2.3) range 2.0-4.5,Reverse T3 (0.42) range0.14-0.54IU/ml. Thyroid auto immunity: Thyroglobulin (TG) (29.9) range0-40 IU/ml, Peroxidase (TPO) (179) Range 0-35 IU/ml. Comprehensive Adrenal stress profile: sample one: (33.2) range 12-22, sample two: (11.2) range 5.0-9.0, sample three: (7.0) range 3.0-7.0, sample four: (11.4) range 1.0-3.0, daily cortisol range: (62.8) range 21-41nmol/L. DHEA levels:sample two am 0.70/sample three: pm 0.67 DHEA Cortisol ratio 1.09. secretory Iga results-saliva (502.4) range 118-641. The GP surgery and the hospital have told her that it is nothing to worry about and there are no issues. Lyn Mynott has personally phoned and said that there is a problem, but need a private Dr who can authorise medication for thyroid via telephone/skype consultation and work alongside Dr Myhill. Any help and advice appreciated. I got these tests done as I was not happy at the NHS tests showing nothing, but they refuse to acknowledge the private tests/doctors and will disregard this information.

Her symptoms are: lichen sclerosis, swollen/sore tongue (comes and goes), excessive thirst and dry mouth, white spots in mouth, weight loss from 7st to 6st 8ins within a week (now stable at that weight), joint pain/muscle weakness all over the body, insomnia (3/4 hours sleep a night in the last 8 years, heat/cold intolerance (hands and feet always cold), rapid/missed heartbeats, difficulty concentrating/focusing, feeling tired and chronically fatigued, hair loss, abdominal pain (IBS), mouth ulcers, numbness/tingling in hands and feet, food intolerances and rashes that come and go.

Anyone who can give an input it would be most appreciated.

12 Replies

  • Have you made an appointment with a private specialist? If the NHS won't help it is time to look elsewhere. Jane x

  • the person has been ill eighteen years was advised by thyroid uk to put results up here for people to interpret, down here in the south west there are no private thyroid doctors or endos and the person is housebound /bedbound now.

  • I wonder why you say there are no private endos or doctors in the south west.

  • Hello, Yes I am well aware that there are no private doctors in the south west as it's where I live with my daughter. I have had to take her to doctors in London, Belgium and finally the USA to get help for her, so I do understand that there are difficulties. It is a horrendous logistical task but it can be done.

    We need to know exactly what measures have been taken to see a private specialist if that was what Lyn advised as we are not doctors ourselves and cannot prescribe anything. Has a private doctor seen this person and/or suggested tests/diagnosis/treatment? We need more details please of any action taken. Thank you.

    Jane x

  • dr myhill ran tests three years ago that showed an issue with the thyroid etc but the nhs gp kept stringing her along- now she is housebound/bedbound they are refusing to do anything and refusing to acknowledge any tests or private doctors recommendations. It is important to bear in mind because she is housebound/bedbound she is not able to travel any great distance. Dr Myhill has said that she will do a telephone consultation but she needs clinical input re:thyroid tests. I have had the above redone on full thyroid test and have also got to complete active B12 test and also the comprehensive gut analysis test as she has had trouble with her stomach (IBS) from birth and they have not got to the bottom of that either.

  • I do understand the problem with the NHS as we have had the same problem - i.e. absolutely zero help (more of a hindrance really due to misdiagnoses) from that quarter when tests are within range, would not take notice of private tests etc., which forced us to go private. Don't waste valuable time or energy beating yourselves up about getting no help from NHS - they are VERY unlikely to change their minds so it's counter productive to keep going back to them.

    It seems to me that if you have now had tests done that you can go ahead and make appointment with Dr. Myhill. Have you seen the information on her site re. gut and all kinds of related thyroid issues?

    Jane x

  • I also live in the south west and I have seen some very good private endos, currently I am seeing endos at Spire, RUH and. Southmead. No complaints with any of them and receiving excellent care.

  • Hi hypohen, They are I think in Bristol aren't they? Unfortunately without a referral from our GP in Devon because of "normal" blood tests it was impossible to move forward, so had to go private. Jane x

  • have looked at gut problems on dr myhill's site, moving forward with questionaire at the moment. did you see the endo's at bristol privately or did you go elsewhere?.

  • We've been to London, Birmingham, Brussels and latterly California and FINALLY know what caused her thyroid problems. Jane x

  • I see 1 endo privately at Spire Bristol and didn't need a referral to see her. The others at RUH and Southmead are nhs. I have had a huge number of tests done, some private but most my GP has done on private endos request. I don't have any complaints with any of them.

  • To me, reading those symptoms, you are describing someone with B12 deficiency / pernicious anaemia, probably with folate and iron anaemia as well. Have all those things been properly tested / discounted?

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