This Pernicious Anaemia Society blog was highlighted by Sleepybunny - and almost immediately stolen and posted here by me.
This was her blog:
This one written by PAS (Pernicious Anaemia Society) chair Katrina Burchell is definitely worth reading. I'm sure many of us can relate to these issues.
Excellent account of what so, so many on this forum have reported too. If it's any consolation at all, it's not just here in the UK either.
From the comment by JED 18th October (who would appear to be in Australia):
'When you say you need a full evaluation of your thyroid and they give you an order for a TSH only test, you should have educated yourself enough to realise they just don’t get it! '
Excellent article and I see so many parallels to people with thyroid diseases.
'Your results are normal therefore you are well and no longer have a thyroid condition'. They may as well add 'Now sod off and leave us alone, as it's all in your head'.
Many patients have their medication doses reduced without any discussions, and prescriptions are written out without any consultation. Upon questioning, you get 'Oh, but your TSH is low, so WE need to lower your dose'. No discussion on how you feel or if you even agree to this.
Next thing we know, patient does not feel well, glucose levels rise, lipid levels go up, they are depressed and anxious. Back to the GP, as patient feels sick. Of course nothing to do with your metabolism, as it is your fault that you are gaining weight. So they throw some metformin at you, a few statins for good measure and of course a bit of antidepressants for your anxiety and tell you to exercise more and eat less.
Some patients get informed and can get the support to fight where they need to be, but some may not want to confront their GP or are perhaps to ill to do something about it. I often wonder, how many diagnoses of pre-diabetes (or even diabetes), high cholesterol and anxiety/depression could be avoided in people with thyroid disease, if GPs would really listen to their patients. And how much costs the NHS would save in the long-term, if they would not blindly follow their guidelines. There is a lot of talk about personalised medicine at present - sadly it is NOT happening yet.
It’s more than doubly discomfiting that PA sufferers are getting pretty much the same lousy treatment as we are. I definitely could recognise virtually everything said.
I wonder if there is a way of cross fertilising with all these groups saying similar things?
Thyroid, PA, ME, CFS, Fibromyalgia, menopause, endometriosis, Mental health. Has ill health changed and no-one was looking?
That way another display could be created to demonstrate to those in power that the problems observed are duplicated/triplicated etc etc and something very central is going on.
It’s hard to believe our crème de la crème alleged brain boxes (doctors) have not noticed. At least they do not seem to be standing up for patients, making you wonder.
The NHS is a business which can’t be run like a business. It’s not a charity because most of us pay. It is a hybrid and probably needs a unique handling.
Are our medics or admin managers capable of running this unique body? No it would seem not. It’s actually a mess on so many levels. Doctors appear to not be getting an effective structure around them and we are suffering.
Patients can/should never be treated ‘en masse’. Healing us our last contact with humanity. We are all in a lot of trouble if that’s where we have reached. It’s too late to fix it by the time you are ill. By then you depend on the system working and it’s clear it is not.
We certainly have quite a number of members in common with PAS!
There haven't always been the best relations between ME/CFS/FM and thyroid. Those who appreciate thyroid look through thyroid-tinted glasses with a tendency to interpret everything as being due to thyroid. And those who do not end up looking a thyroid as if it is unrelated.
Or at least that is how it can appear even with the bets of intentions by every individual.
The other part of this that we often see here and which leaves me horrified:
The frustration I feel is not just over the money wasted in retesting blood in these circumstances, but for those poor people who slide into a very real fear that their symptoms will return, and they will be again debilitated
And not believed…
There’s still a prevailing view that doctors know best. And that if they say that you no longer have a particular condition or that you no longer need as much medication to deal with it, that it MUST be true and there must be something else going on. And then, family and friends pile on the gaslighting. “The doctor says it’s not your thyroid/B12 deficiency. It must be anxiety. You just need to snap out of this pattern of negative thinking… Pull yourself together.”
How many people are on antidepressants instead of the right medication for their condition?
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.
