"Level 4 breathing difficulties for over 4 years, thyroxine not working, and long road back from TSH Hell"

(as the patient),

Level 4 breathing difficulties for over 4 years, thyroxine not working, and long road back from TSH Hell

I have been suffering from Hashimoto’s disease for many years, I only just got diagnosed with it after asking for an antibodies test myself. You see, Drs just rely on the TSH (Thyroid-stimulating hormone) and T4 thyroid test to see if you are 'controlled' as they call it on Thyroxine. Never mind whether or not you are having rotten symptoms of hypothyroidism on the drug, never mind if there are free T3 and free T4 tests, which are much more reliable for how you feel. Nevertheless blood tests should never be used instead of treating a person's symptoms, just because they are 'within range'. I had to buy my own alternative meds because the Drs in this area simply refused to give me anything but Thyroxine, which was leaving me in such a state I was diagnosed with CFS 21/2 years ago and also had to be admitted to hospital with terrifying symptoms.

All this time I have been so breathless, so tired, so ill I couldn't even leave the house to go to the Drs to ask them to investigate this terrible breathlessness. I am diagnosed asthmatic but this isn't always asthma, I know the difference, however I had to visit another Dr in the practice to ask for further investigations.

It seems once they think you have something, they try and treat a symptom but unless you press and press you get no further investigations. When we are so ill we don't have the energy to press. Luckily my other thyroid meds which have to be imported and should be available on a named patient basis have given me some energy to chase a little until we find the cause. I shouldn't have to fight so hard for my health and I certainly shouldn't have to spend so much on meds which ARE available on the NHS but unlicensed because of the seemingly draconian attitude of the British Thyroid Association and the Royal College of Physician guidelines, who scare the Drs out prescribing different medication.

This must be the only condition for which only one treatment is available and as we know one size does NOT fit all! I am spending all my available money on meds and supplements to try and get better and there has been hardly any input from my GP who said he thought I needed a Private Dr. Yes, if someone wants to pay for it I will take it but my family and myself have paid a fortune into the health service all our lives, now we need it, something has gone wrong. We need the NHS. What we don't need is NGOs poking their noses in and highly paid 'Diversity Officers' and other silly jobs at the top getting money which could be used for the care of patients and funding of meds that help and not a million unnecessary types of antidepressants/statins (evil for your body) when a few would do it. Meanwhile no Natural Dessicated Thyroid Hormone meds available for us :(

At least the lady Dr I spoke to Friday ordered a test to look at a possible other problem, at least she is trying.

I am hoping the Drs can help me track down my problem now if too much damage has not been done by whatever is causing this. I should not have been left so long in between, left to rot in CFS and Thyroid Hell.

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