Thank you everyone for the advice you gave me...........I ordered a test for a full thyroid screen from Medichecks.com, it arrived last Saturday and I posted it off this morning. I had also asked the GP for a repeat thyroid test last week, I visited the practice to have the blood taken this morning. Because I feel really sick and have done for over a year, I am worried about what the GP will say when I go back for my NHS results in a couple of days, my test last October was Serum TSH Levels 3 mU/L 0.35-5.50mU/L
, Serum free T4 level 10.9 pmol/L 7.00-17.00pmol/L, they said that was normal and to stay on my 25mcg dose of Levothyroxine, symptom wise it isn't because I feel terrible. I wanted advice about seeing someone privately, how do I find an endocrinologist who will be more sympathetic to how I feel, is there a website or anything that any of you could suggest, I live in North Wales...Thank you very much everyone
Written by
tonyturnip01
To view profiles and participate in discussions please or .
I live in North Wales too. I don't know of anyone who you could see privately in this area. As far as NHS endos are concerned, I saw Dr W at Bangor in 2002, he was an absolute pig, reduced my Levo to bring my TSH into range but was not bothered that it made my FT4 plummet to the bottom of range and turned me into a zombie who had to give up working in my own business and be looked after for 2 years, never mind, he was happy! His speciality is diabetes. I think he's supposed to be retired but 'helps out' due I believe to shortage of specialist staff. I was more recently offered the opportunity to see Dr S at Wrexham (can also be seen privately at Spire Yale Wrexham) and again he's a diabetes specialist. I read that one patient complained that the amount of hair loss when she showered blocked the drain, his reply was that his wife loses hair when she showers too. I turned down the opportunity to see him! So two to avoid there.
If you email Dionne at tukadmin@thyroiduk.org she can send you the list of thyroid friendly endos and you can ask for feedback from members. I think there might be one at Glan Clywd who might be a bit more sympathetic but that's not a recommendation as I have no personal knowledge.
SeasideSusie....Thank you very much, two to avoid for sure. I will send Dionne an e mail and try and find a thyroid friendly Dr, I feel awful enough already, I don't want a horrible experience with an unsympathetic Dr on top of everything, last thing anyone wants when they are ill...thanks
So many members had been really looking forward to seeing an Endocrinologist and hopes built up that they could resolve their symptoms but are despondent afterwards as the Professional showed no interest and some were very, very arrogant.
You are always better to get the name from TUK at least your money wont be wasted.
You don't need to tell your GP you've had private tests. It is none of his business but you will have something to compare with the ones he tests.
25mcg of levo is an incremental dose. Everyone should start on 50mcg with 25mcg increases every six weeks until TSH is 1 or lower with FT4 and FT3 in the upper part of the range but they rarely test these.
Too low a dose can rebound and the patient feels worse as there's insufficient thyroid hormones to enable our body to function. That's what thyroid hormones do, enable the whole of our metabolism to work from head to toe.
is there any clinical literature or guidelines that establish this, that we patients could refer doctors to?
And i agree about private tests. I also get medichecks to compare. Trouble is, with medichecks i can test early, with NHS, even if i book the first slot in the morning, they always run late, so tsh always looks better on NHS tests!
This is basic information and if we, the sufferers, can find out the best way to have tests why has this not been explained to GPs, after all general practice covers most of the common complaints and hypo is being missed right/left/centre.
They have never learned clinical symptoms (basic) and only diagnose by blood tests and they are ignorant of the fact that some people's tests do not reveal hypo but symptoms can and do.
Before blood tests/levothyroxine were introduced our symptoms enabled a trial of NDT and if we improved we were hypo because we weren't limited due to a blood test and were given sufficient to gradually ease clinical symptoms.
Even one top doctor, the other week, published the following - a condemnation if ever there was one - I do hope the other Specialists don't ignore but listen to his comments (and the patients worldwide) which they have done to other good doctors in the past - some losing their licences or their life through the strain of accusations.
They also don't realise that levothyroxine does not suit many patients but are willing to prescribe anti-d's, pain relief or anything else and think their patients are a nuisance. They don't realise it is their fault the patient keeps appearing in the surgery complaining or feeling far worse on medication supposed to make them well.
Being on 25mcg of Levothyroxine may explain why I have never felt OK in the last 10 years, the last year has been terrible though, I have had severe acid reflux and LPR on top of everything else after I was admitted to our local casualty with a bad strep throat, I was given an overdose of antibiotics and reacted badly to them. I was discharged from hospital with severe swallowing difficulties, and although I told them I couldn't swallow my own saliva no one took any notice, I had oesophageal candidas because of the antibiotic overload which I found out about a month later when given an endoscopy.I even ended up with H influenza and Pneumonia and felt so awful.
I have had severe acid reflux and swallowing problems since that period and I have lost two stones because I cannot eat, I think now I have SIBO also. I have been backwards and forwards to the GP with various things such as joint pain, ear infections, palpitations,eye infections, and not once was my thyroid mentioned, I realise now that the swelling on my throat is the actual thyroid gland and not the result of a sore throat and laryngitis. What has been odd is that however ill I have felt, even with a bad infection, my temperature has never gone above 35.5, even when I had pneumonia, I am a bit angry with myself for not realising sooner and feel that I have suffered for over a year because I have been a little dim...thank you all so much for your advice....
Don't be angry with yourself but vent it at those who are supposed to be trained and knowledgeable. Those who have made these 'guidelines' which leave a large majority of the hypo population unwell and lose their jobs/home/families.
This never happened before the introduction of blood tests accompanied by levothyroxine. We were diagnosed upon clinical symptoms alone (from 1892) but Big Pharma wanted a share of profits and gradually they must have given some sweeteners in order for levo and blood tests now at No.1 alone for diagnosis and treatment.
Some of us get well on 'old fashioned' but sensible advice and hormone options. Of course we might have to switch from one to another but are not even given the option nowadays.
Many posts this week were by members whose dose varied between 25mcg and 50mcg and diagnosed from 2010+. Whereas another doctor stated we used to get prescribed between 200 and 400mcg (NDT) and that we were now in a parlous situation.
Your TSH should be nearer 1 or less but so many docs think it is ok if your reading is within the range!! have you had any tests for thyroid antibodies?
My GP was quite happy tolook and file my results but would not put them on the computer record with NHS results.Some GPs referred to on this site have been dismissive of private tests
I'm in north Wales I went to chester the Nuffield hospital privately the specialist there is good Dr Ewins a £200 cost he ordered tests etc now i am on T3 hell of a lot better
Well, your bloods suggest you need an increase as (according to Dr Toft Pulse article) free T4 should be in top quarter of range or even over range, so that you have enough T4 to convert to T3 and that means a TSH under 1 or even slightly suppressed. You might try taking a copy of the article to your GP/endo and asking for an increase As your bloods will still be "normal" when your free T4 is 17.
We note that you are taking this test to investigate symptoms. I understand that you have an underactive thyroid and that you have been taking 25mcg of levothyroxine for the past ten years. You continue to experience lethargy, gritty eyes, ear problems, joint pains, palpitations, pins and needles, dizzines, brain fog, low body temperature and new onset acid reflux. I understand that you struggle to swallow your own saliva and that you have lost two stone in weight.
Reviewing your symptoms I am concerned by the recent development of acid reflux, swallowing difficulties and loss of weight. I recommend that you discuss these promptly with your GP as these are likely to need further investigation.
Your thyroid stimulating hormone is low whilst you have normal levels of thyroxine and T3. This suggests that your dose of levothyroxine is too high. If you are free of symptoms of an overactive thyroid then you may prefer to repeat the test in three months to assess the trend. If you are experiencing symptoms then you should discuss this result with your GP.
Having very low levels of thyroid stimulating hormone for several years has been associated with the development of osteoporosis. If your thyroid stimulating hormone always tends to be substantially below the normal range then it may be worth discussing with your GP whether a bone density scan is advised to monitor for the development of osteoporosis. You do not need to worry about the occasional low reading, only if you get repeated very low levels.
Your thyroglobulin antibodies are positive. This can be associated with autoimmune thyroid disease and in particular Hashimoto’s disease.
Your thyroid peroxidase antibodies are elevated. This antibody is commonly associated with autoimmune thyroid disease. It is frequently seen in conditions such as Hashimoto’s disease (where the thyroid becomes underactive) but confusingly can also be seen in Grave’s disease (where the thyroid becomes overactive).
You have high levels of vitamin B12, if you are taking a B12 supplement then I recommend decreasing your dose. If you are not taking a supplement then I recommend checking your full blood count and liver function to assess whether this is significant.
You have normal levels of folate.
Your CRP level is normal, suggesting low levels of inflammation within the body.
Your ferritin level is normal indicating healthy iron stores.
My NHS ones which I got this morning are
Thyroid function test-Abnormal
see task.
For primary hypothyroidism,levothyroxine replacement should be targeted toward a TSH within the reference range,after dose adjustments allow 8 weeks to stabilise.
Serum TST level 0.09 mU/L 0.35-5.50 mU/L
serum T4 level 13 pmol/L 7.00-17.00pmol/L
I have absolutely no idea what is going on, my symptoms are the same and i do not experience any hyper symptoms, the only change I have made is when I take the Levothyroxine, a week ago I started taking it at night with water and not in the morning with my multivitamins etc, still the same dose 25mcg, I can't understand why my levels have changed but not the horrible symptoms.Last tests results were
Serum TSH Levels 3 mU/L 0.35-5.50mU/L
, Serum free T4 level 10.9 pmol/L 7.00-17.00pmol/L October 2017.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Can anyone tell me if I should worry about my blood test results? 
Help needed with test results, my GP is unhelpful!
Medichecks Test Results
Medichecks blood test results
