For info: Just had a big rant on government sur... - Thyroid UK

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For info: Just had a big rant on government survey on women's health

jsy_girl profile image
15 Replies

UK Government are doing a consultation on women's health until 13 June (although in England only sadly)

You don't have to be a woman to complete it i..e you can complete as an ally (friend/family member)

Sure this has been shared before but i found it very therapeutic to have a rant by completing the survey. Whether anything will come of it i've no idea!

gov.uk/government/consultat...

One of my longer comments on the survey in case you were interested:

Doctors need to test and understand full thyroid panel, TSH is not enough on it's on as it’s a pituitary hormone; free T3 and free T4 are essential. And just being in range is also not good enough, especially when you no longer have a thyroid gland. Patients should be helped to treat all their symptoms not just get their bloods in range and be dismissed. The decision to prescribe T3 needs to be reviewed, especially as the cost comes down. The government should intervene to insist the pricing of T3 by the monopoly providers in the UK be reduced. If people would benefit from T3 they should be allowed access to it. Vitamin levels should also be tested - B12, Vitamin D, Folate and Ferritin - all need to be optimal in range (i.e. at least mid way through if not higher, not just tipping into the early part of the band). If people are lower in range for vitamin B12 they should be tested for pernicious anaemia. If someone is found to have pernicious anaemia they should be offered B12 injections for life - these should not later be withdrawn. These vitamins and minerals all contribute to conversion of the inactive thyroid hormone to the active thyroid hormone and are therefore vital for someone to feel well.

People should also not be offered radioactive iodine treatment without fully understanding what else they could do to reduce their autoimmune response, and potentially support a healthy functioning thyroid. They should also be made aware of the cancer implications of having RAI treatment.

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jsy_girl
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15 Replies
nightingale-56 profile image
nightingale-56

Good 'in a nutshell' information for Doctors, which could help treat us better.

helvella profile image
helvellaAdministratorThyroid UK

Whilst very pleased that you have had your say, and I encourage others also to do so, please note that it is restricted to England. It is not available to those who are in Northern Ireland, Scotland or Wales.

jsy_girl profile image
jsy_girl in reply to helvella

Thanks have edited

SeasideSusie profile image
SeasideSusieRemembering

👍 👏

TVOReason profile image
TVOReason

Hi jsy_girlI have just done consultation and I have suggested a specialised nurse in GP surgeries, if diabetics can have one so should thyroid patients

jsy_girl profile image
jsy_girl in reply to TVOReason

Great idea. Or one of the doctors should undertake a specialist course to bring the up to date with current thinking.

Maybe they could also do group patient consultations. It might help those who are not able to advocate for themselves to be heard and also for doctors to see that it’s not just one patient being difficult we are all suffering to various extents.

nellie237 profile image
nellie237 in reply to TVOReason

I hate to rain on what are essentially very good ideas.

1. Diabetes nurses are useful when 1st diagnosed, but after that...........as with thyroid, not one size fits all. I've had 20yrs of experience with diabetes nurses (my daughter is Type 1)........the best ones are diabetic, some are worse than useless.

2. Unless you've got a 'sympathetic' Dr training the nurses........you will be dismissed as 'In Range'......and it could just be yet another obstacle to overcome.

3. Group patient consultations would be excellent. I will eat my hat if this ever happens......too many people in the same room questioning why their treatment isn't making them feel better. Ouch.

jsy_girl profile image
jsy_girl in reply to nellie237

Haha 😆 yes tbf I can’t see them signing up to that level of interrogation.

And you’re right on point 2 for sure. Another person you have to bring round to your way of thinking.

And I can imagine on point 2 as I’ve found similar - my doctor who has been the best also has pcos and a thyroid problem.

TVOReason profile image
TVOReason in reply to jsy_girl

We can only try to make a difference as my Mum used to say ‘ shy girls get nowt if you don’t ask you don’t have a chance of getting.’

fuchsia-pink profile image
fuchsia-pink

Thank you - have done mine now too :)

jsy_girl profile image
jsy_girl in reply to fuchsia-pink

Fantastic 😁 ❤️

Alanna012 profile image
Alanna012

Oh I'm going to enjoy filling this in! I think womens healthcare is abysmal. Thanks for posting!

jsy_girl profile image
jsy_girl in reply to Alanna012

It was therapeutic. It is abysmal, agree!!! Sounds like some of the charities are able to submit written responses which is good.

humanbean profile image
humanbean

I filled this in a week or two ago. I had a bit of a rant too. One thing I pointed out is that women are told that everything they suffer from is "normal" as soon as they hit puberty.

Are you female and suffering from one or more of the following?

Pain, fatigue, anaemia, headaches, insomnia, diarrhoea, constipation, skin complaints, and hair loss?

Doctor's responses :

It's because you have periods and this is "normal for women".

It's because you've had kids and hold down a job, so being tired is "normal for women".

It's because you are approaching menopause and this is "normal for women".

It's because you are ageing and this is "normal for women".

It's because you've gone through menopause and this is "normal for women".

I also pointed out that there is no point in a woman's life once they've hit puberty in which being and feeling healthy is considered "normal for women".

jsy_girl profile image
jsy_girl in reply to humanbean

This is so true. I wish I’d put that on there as well. I did add that they need to stop treating the symptoms of anything related to your menstrual cycle by putting you on the combined contraceptive pill rather than trying to work out the root cause of what is causing the irregularity (ie any of your listed symptoms haha).

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