Hi all! I am so delighted that I have discovered this forum! It’s so amazing to see all the knowledge shared among fellow thyroid fighters! You are all amazing and very strong!
I just wanted to share the worst quote I have came across. Could you imagine what is happening to you if you have TSH above 10? I can only imagine... I had raised antibodies, TSH 5.7, and attacks of blood pressure 195/110/140, extreme vertigo, feeling cold with shivering, high cholesterol and he never checked my FT3. He then added: “From years of experience you will not feel any different on thyroxine but you are welcome to try.” Thyroxine literally changed my life.
I would like to also point out that he is an endo, private practitioner in few private hospitals in London with experience around the world.
I thought that my GP is silly when with above symptoms she insisted that I have inflammation of my ear and would rather send me for a brain scan (I did really go) then do a full thyroid blood tests.
Anyway, that was beginning of my hashi journey!
Written by
Chrisroses78
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Yes, it is shocking (sadistic) that some doctors will not treat thyroid until TSH is well over (often more than double) the top of the "normal" reference range, It makes a mockery of even having a reference range.
One can only assume that they don't apply the same rule to themselves if they ever become hypo x
Oh, how many times have I been told 'I've never had a patient that didn't get well on levo, there must be something wrong with you'. Well, one can draw several conclusions from that:
a) Doctors never ask their patients how they feel, so how would they know they were well?
b) If they should happen to ask and the patient tells them, they don't listen. It's easy to believe all your patients get well on levo if you don't hear them say they're still sick.
c) If they should happen to ask, and actually do listen to the patient saying they're still unwell, they just don't believe them. After all, it's well-know that all patients are attention-seeking, whiney hypchondriacs, why would you believe anything they say? Of course they're well, their TSH is back in range, isn't it? They just watn to get high on levo!
But, it's not the doctors you have to fight. It's Big Pharma. They are responsible for doctors' education, and it's not in their interests that doctors understand thyroid and make us well. I expect that BP has Boris and all his cronies in their pocket, too. They certainly have the NHS.
Our treatment is heartbreaking because as we know the misery is completely unnecessary. Hard to believe in this day and age that it is actually worse for lots of us and that in the distant past we would of got natural thyroid without any fancy tests.
So many forced to self treat, to buy tests and to listen to our bodies and actually heal ourselves, heal is too strong a word, self manage! Without this forum so many on here would be far worse so I thank all the wonderful admin who support and help us.😀
Where are the informed femail endocrinologists who should be fighting our corner...... why do we have so little support? It can't be all about the costs when paying for the fallout of thyroid storms, chronic fatigue, fibromyalgia, compensation etc......the list must be huge.
Someone needs to update the medical schools and their training and even the laboratories who refuse to test T3 , who also make suggestions to the doctors. It's criminal and thinking about it is raising my blood pressure I'm sure😂.
When medics can perform amazing life saving treatments I will never fully understand why they fail so dramatically and so consistently when faced with thyroid disease.
Hmmm.....poor education!
It is a medical scandal of monumental proportions!
Without this amazing forum very many of us would be in dire straights......failed by "the experts".
Welcome! Your understanding of thyroid disease and your recovery starts here.
Unfortunately the NHS is getting worse. I tried to get an appt at docs the other day and they are only doing daily appts, you can’t book one in advance. You have to phone at 8am (no online appts)- all appts are gone by 8:20 and there’s one phone line for 8,000 patients which genius thought that was gonna work My daughter tried to get a family planning appt and same there. Crazy
My TSH was 15 when I got tested in march and I had to convince my gp to even let me start to take 25mg with statements such as, "I'm pretty sure it's not normal to sleep for 13 hours" etc. I only knew about the thyroid because my mum had hers removed and I read up on my results. If it wasn't for me pushing I'd just be left to get worse.
Since then I've been the one testing myself privately and pushing for dose increases as a result.
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Hi new to forum
I am new here and would like to say hi!
Labs in Western Sussex NHS instructed by CCG not to test FT4 unless TSH is out of range!
Liothyronine request refused
