I have been diagnosed Hypothyroid for a few yeara now. I have steadily gone up in Levothyroxine to 100mcgs.
I have been aware of symptoms when the arise each time. And now i am very symptomatic. I have been very low in mood, have boils appearing on my face around my nose, breathless and my hair is falling out.
I had my blood test the other day and it came back normal. They had only tested my TSH level though.
Last time i had gone bad with my thyroid the tests had come back normal but as at that point i was basically suicidal in mood they allowed me to go up a level. I improved straight away and my tests still showed normal.
I feel i need to push my physical symptoms more to the GP.
Has anyone else had to do this?
Written by
secrethair
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Before the blood tests and levothyroxine were introduced as the 'perfect' way forward', we were diagnosed upon clinical symptoms and given NDT until they were relieved. Doses then were between 200 and 400 and Dr Skinner (RIP) tried to educate Endos that nowadays we were given doses which were too low to relieve our symptoms, or undiagnosed due only to the whereabouts of the TSH and not acknowledging symptoms. He was 'shot down' as he was a virologist and not an endo. Strangely enough the 'left-overs' who could travel to Birmingham to consult him recovered (mainly all). For doing this humane care the 'Powers that Be' enabled the GMC to call him before them 7 times. On one occasion there were Red Bound Folders containing 2,500 testimonials from patients and as many as possible travelled to the GMC hearing.
Unfortunately for us, most of us think that the strain of all of this caused a stroke which caused his demise.
Most doctors and even some endos (pitifully) appear to be the least educated in the role of thyroid hormones in our bodies and the level to be well varies between patients.
We need a TSH of 1 or lower and some of us suppressed. They don't understand this very basic treatment. The make a mistake of believing that anywhere in the range (even the top) is fine and that you're on sufficient hormones. It is a very bad error as it might well cause their patients who are diagnosed as hypo to develop other more serious problems and interferes with everyday living in a way they cannot even envisage..
The blood tests for hypothyroidism are (my view) for diagnosing those who haven't been diagnosed. Once diagnosed the aim is to relieve all clinical symptoms, not give us more symptoms which means the TSH is around 1 or lower or even a change of hormones. There's no point in giving us 1/4 paracetamol for instance when we might need 2 tablets to relieve headache.
Doctoring is supposed to relive suffering - not create it.
Well, secrethair, we should expect our doctors/endos to know this but it appears that they are they ones who need educated.
All that interests us, the poor patients, is that we want to feel well. Theoretically that should be easy if they didn't rely on numbers on the blood tests but the symptoms the patient is having and have enough thyroid hormone replacement to relieve them.
Doctors are following the instructions they are given by their authorities.
You wont be able to argue your case unless your get a proper blood test and get a print-out with the ranges. Follow my explanation and make an appointment. Ask GP to test TSH, T4, T3, Free T4 and Free T3 (he or lab may not do the Frees but you can get these privately). If your T3 is low we cannot function properly as T4 is supposed to convert but we most probably need an increase or some T3 added. Email louise.warvill@thyroiduk.org.uk and ask for the Pulse Online article by Dr Toft. He was President of the BTA. Highlight question 6 (ignore last stupid comment) and discuss with your doctor how low you want your TSH to be - its usually around 1 or lower. Some doctors still ignore this Article.
For blood tests for thyroid hormones, never accept 'normal', o.k. or 'fine'. We have to have a print-out so that we, ourselves, can understand and be knowledgeable about what 'number' makes us well. In fact, it is not numbers but how we feel that is the priority because if on the correct dose and hormones we should have normal health. Our vitamins/minerals also have to be at an optimum.
The blood test should be at earliest possible and don't eat before it (you can drink water). Leave about 24 hours between your last dose of levo and the test and take it afters (put levo somewhere else the day before as sometimes we are in automatic pilot when we get up and might take levo)
Vitamin B12, Vit D, iron, ferritin and folate have to be tested. Get a print-out of these as well as thyroid and post on a new question and make sure the ranges are stated as labs differ.
Very important - B12 is really a hormone with neurological consequences if too low. Dr Chandy says that many people diagnosed with MS have been B12 deficient and have recovered. He has about 600 to 700 detailed records of these patients who either B12 deficiency or P.A. have got well with B12 (injections I think). Recommended level now is 1,000.
Vitamin D is also very important. A previous post.
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What should a normal TSH reading be?
Low tsh, normal ft4/ft3
Normal TSH & T4?
Hypothyroidism symptoms but normal TFT 
Normal TSH but low T4
