Is it correct that I have to believe my gp saying that there will not have been any changes to my thyroid levels since the last blood test which I had in October 2019 despite me feeling and behaving like I've lost my mind ?
I had diagnosis of hypothyroidism in February 2011 when i was registered with another local surgery, they had begun treating me with 50mcg of Levothyroxine.
Changed practice in 2012 and that practice withdrew treatment and wrote on my medical notes that I was sub-clinical hypothyroid. Moving forward to increasing symptoms including terrible depression, anxiety, no appetite yet weight increased, extreme fatigue , tiredness and poor sleep, visual disturbances, throat sensitivity and pain which I liken to feeling strangled, neck pain, hoarseness and deepening of the voice.... apologies but the list of symptoms were and remain huge.
In March 2018 after countless requests from me to review the situation they agreed to do a thyroid function test, no surprise that a telephone call from doctor at the surgery if I had any levothyroxine at home !!!!! I know I did not attend medical school and receive a qualification that the doctors possess , I am a complaining and symptomatic patient but something doesn't feel right to me. I will post the test results once I can get through the fogginess of my brain later on in the hope that someone here may be able to help me get some sense. My gp refuses to refer me to an endocrinologist for follow up or discussing any hormonal issues despite them writing hormonal issues / menopausal symptoms / anxiety, depression etc etc on my notes.
Hoping that someone here can understand this rather long post , I'm frustrated and fed up feeling unwell and feeling like I'm being fobbed off and under treated by these medicians.
Love going out to you all xx
Written by
Radiance1969
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Our blood results change all the time - that is why we are meant to have them re-checked at least once a year! And you know you.
You know if you are not feeling right - all they know (at best) is that you are probably lurking somewhere along that mysterious range called "normal".
You are entitled to your historic blood test results, and it's worth keeping them so that you can see how they vary over time. But if the GP will not test again, it's got to be worth you having the full set of relevant tests - ie TSH, T3, T4, ferritin, folate, vit D and B12 ... which is probably more than the NHS does anyway - and then post the results and ranges
Strongly recommend you get FULL thyroid and vitamin testing ....privately if necessary
For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also EXTREMELY important to test vitamin D, folate, ferritin and B12
Low vitamin levels are extremely common, especially if you have autoimmune thyroid disease (Hashimoto's) diagnosed by raised Thyroid antibodies
Ask GP to test vitamin levels and thyroid antibodies
Or test privately
You may need to get full Thyroid testing privately as NHS refuses to test TG antibodies if TPO antibodies are negative
Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .
Last dose of Levothyroxine 24 hours prior to blood test. (taking delayed dose immediately after blood draw).
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)
Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies
Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have special offers, Medichecks usually have offers on Thursdays, Blue Horizon its more random
If you can get GP to test vitamins and antibodies then cheapest option for just TSH, FT4 and FT3 £29 (via NHS private service )
Don't be despondent although I'm well aware of the reason why.
Members on this forum will respond and enable you to have support. If GP refuses to refer you to an Endocrinologist (it seems this is common throughout the NHS) you will get plenty of responses and help here. Some of us have seen endocrinologists and have been disappointed and not had the support we thought.
Unfortunately, the above reponse may be o.k. for many people but not for us on here.
Serum free T3 level 4.5 pmol/L range 3.1 - 6.8 Normal 6 Jun 2018
Serum free T3 level 3.5 pmol/L range 3.1 - 6.8 Normal 25 Jun 2019
Serum free T4 level 15.2 pmol/L range 12 - 22 pmol/L Normal 30 May 2012
Serum free T4 level 16.5 pmol/L range 12 - 22 Normal 1 Mar 2018
Serum free T4 level 20.1 pmol/L range 12 - 22 Normal 6 Jun 2018
Serum free T4 level 15.1 pmol/L range 12 - 22 Normal 30 Jan 2019
Serum free T4 level 18.3 pmol/L range 12 - 22 Normal 25 Jun 2019
Serum vitamin B12 322 pg/mL range 180 - 900 Normal 21 Mar 2013
Serum vitamin B12 253 pg/mL range 180 - 900 Normal 16 Apr 2015
Serum vitamin B12 223 pg/mL range 180 - 900 Normal 3 Aug 2015
Serum vitamin B12 272 ng/L range 180 - 900 Normal 19 Apr 2018
Serum vitamin B12 262 ng/L range 180 - 900 Normal 6 Jun 2018
Serum vitamin B12 282 ng/L range 180 - 900 Normal 2 Apr 2019
Serum folate 8.6 ug/L range 4.4 - 20.0 Normal 21 Mar 2013
Serum folate 7.6 ug/L range 4.4 - 20.0 Normal 16 Apr 2015
Serum folate 5.7 ug/L range 4.4 - 20.0 Normal 3 Aug 2015
Serum folate 6.3 ug/L range 2.5 - 19.5 Normal 19 Apr 2018
Serum folate 13.4 ug/L range 2.5 - 19.5 Normal 2 Apr 2019
Serum ferritin 59 ug/L range 16 - 445 Normal 21 Mar 2013
Serum ferritin 78 ug/L range 29 - 470 Normal 16 Apr 2015
Serum ferritin 61 ug/L range 29 - 470 Normal 3 Aug 2015
Serum ferritin 67 ug/L range 29 - 470 Normal 11 Jul 2016
Serum ferritin 46 ug/L range 30 - 470 Normal 19 Apr 2018
Serum ferritin 47 ug/L range 30 - 470 Normal 6 Jun 2018
Anti-thyroid peroxidase 12 IU/mL < 34 Normal 19 Apr 2018
Serum total 25-OH vit D level 41 nmol/l N/A 19 Apr 2018
Anti-tissue transglutnase lev 1 U/mL N/A 1 Jun 2015
Thyroid peroxidase antibod lev 20 IU/mL < 100 Normal 21 Mar 2013
Serum magnesium level 0.95 mmol/L 0.70 - 1.00 Normal 1 Mar 2018
I was put on 50mcg levo in March 2018 , remained on that dose till January 2019 when it was increased to 75mcg and remained on that dose ever since. GP refuses to test Vitamin D levels again despite my initial low test results .
I hope this is enough information and not too chaotic or disorganised.
I think you need an increase of 25mcg and then a blood test 6 weeks afterwards my elderly Dad is on 100mcg but that is because he is elderly. Also your Ferritin is a bit low so you could try eating liver or pate a couple of times a week. To increase your vitamin D try using the BetterYou Vitamin D spray which is easily absorbed on your tongue. Usually we feel better when our TSH is 1 or lower and your T4 and T3 are in the upper third of the range.
Thank you Lora7 again , continued health for your father. I recently turned 50 therefore understand the medics shouldn't use the age thing. Have been vegetarian since 2012 , high cholesterol levels which the NHS dietician suggested to limit or omit eating eggs from my diet which I thoughtwere high in vitamin do. Argued till I've been blue in the face raising the issue of high cholesterol and undermedicated hypothyroidism. Alternative is the fear installed and have been on a statin as the lipid team insist on saying high cholesterol levels could cause heart complications.
I've got an emergency appointment with ENT this afternoon, fast tracked by the gp for sore throat that's been going on for longer than I can remember. Have been panicking about that as when I read the referable it was once form for suspected head and neck cancer. Jolly nice doctor failed to tell me this although she ticked the box on the form at say that patient has been informed it's to investigate suspected cancer.
Feeling a little worried about the appointment and I am losing faith and belief in my gp due to misinformation, fobbing me off with rubbish that thyroid levels won't have changed since October. The surgery is happy to keep suggesting taking anti depressants instead. I suppose they have an interest in psychiatric patients and supplying those meds instead of endocrinolgy patients.
Sorry I'm rambling at 5.30 , have slept really poorly for over a week and mental health is not up to par as a result. Averaging 4/5 hours but heavily broken sleep and terrible nightmares.
Sorry you are worried about cancer ... I have been worried over the last 10 years I have had this horrible disease. I have had an ultrasound twice on my goitre just to check there is nothing suspicious there and so far there hasn't been and I just have multinodular goitre. I sometimes suffer with a sore throat and my voice will become hoarse. Also I can choke on food and tablets. A few weeks ago I was alone in the house and I choked on a large antibiotic capsule and had to stick my finger down my throat to cough it up which was very scary. Hopefully everything will be fine but it is always best to get things checked out.
I agree it's better to get it checked as the human condition does predispose us to panic and sometimes resorting to pessimistic thinking. Hoping for your continued good health and peace of mind x
Statins will decrease your B12 making your hypo symptoms worse, set you up for type 2 diabetes and make calcification of the arteries more likely. If your T3 is too low, you will have high cholesterol BUT if you are older, the higher the cholesterol, the longer you live. However, too much starch and sugar may give you high triglycerides, which are a problem. Time for a new doctor with a clue
Radiance1969 I completely agree with all the advise above. Can you change your GP? See someone else in the practice? Thats what I did and its gone really well since. Ive just had a scan. Its Thyroiditis from the auto immune attack on your Thyroid gland. Whats your Thyroglobulin level? x
Went for the ENT appointment , had a nasoendoscopy and next on the agenda is an MRI scan for further investigations. Uncertain whether or not the throat and neck pain is thyroid related after all. I think I may well have been barking up the wrong tree and looking in the wrong direction for a cause , have probably deluding myself and putting all the blame and troubles down to hypothyroidism when that accounts for some of the health concerns.
I have a rather complicated and lengthy relationship with medical practitioners over the years both as a patient and through witnessing my mother go through decades of treatments for major long term health conditions. This I realise adds to the confusion and paranoia that I go through pretty frequently.
Somewhat self inflicted I have to confess as I have been a tobacco smoker for many years as well which I know I need to stop as its not going to help matters improve. My own advice and from others that I've not listened to.
My Dad smoked from the age of 14 and was unable to give it up even though he tried and tried. He had a heart attack when he was 60 and recovered from it but was then advised to give up smoking which he did. Unfortunately he then developed COPD and does struggle with breathlessness and has an inhaler. He does regret smoking but he was not to know it would affect his health because years ago everyone smoked. Hopefully these tests will put your mind at rest and find out what is causing this pain. I myself have been anxious about my health because I watched my Mother die a painful death from breast cancer. I think it is only natural to worry about your health and you are doing what a lot of us do. Thinking about you and hoping everything will be ok.
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I’m losing my mind :(
Feel like giving up!
T3 as opposed to levothyroxine 
I'm so frustrated with my GP!
Feel like I am going mad
