Barriers to good health care for autistic women

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Amity
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02 Sep 2019, 7:35 am

I suspect that I have an underactive thyroid, it runs in my family.
I had 3 T3 &T4 tests, but the results are borderline underactive each time.
Feeling tired so easily these days, despite making healthy changes.
Has anyone experienced something like this?



B19
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02 Sep 2019, 10:48 pm

Hello Amity. What I have recently learned is that the test boundaries (ie the amount of thyroid hormone present in the sample which gets labelled a positive or negative result) are abitrary, different countries set different levels. For example, the positive threshold is very high in New Zealand, (I don't know why, possibly ignorance? cost saving?) so a number of people will receive a negative result and be told their levels are normal, when they would be diagnosed and treated in a country that set the bar lower. I don't know what the USA levels are like.

This has implications for women's health, as women are more likely to have thyroid problems, though of course men too may have debilitating high or low levels.

Generally though, I have noticed, that whenever there is a condition that affects women a lot more than men - this includes all forms of autoimmune disease - less treatment and funding is available, there is less interest in specialisation by health institutions (there is no Department of Autoimmune Diseases", for example, it's absorbed into all the others as an often neglected "add on") and there is more missed diagnosis and more misdiagnosis.

So there is a long way to go. Won't happen in my lifetime, though I hope awareness has started to expand.



Amity
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04 Sep 2019, 4:55 am

It's great to see you back B19 :D
Thanks for the reply, just to clarify I'm in Ireland, not America.
_______

I might have to follow this up privately, thyroiduk.org suggest that the traditional blood test is not always the best indicator of thyroid health. Also for consideration is the adrenal gland...
I am cagey about the side effects of levothyroxine, osteoporosis already features in my family, but so does hypo/hyperthyroidism cholesterol and angina... Catch 22.
There are supplements that support adrenal and thyroid functioning, though taking them would skew results and make it more difficult for the GP to take this subclinical hypothyroidism seriously.



BTDT
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04 Sep 2019, 9:38 am

Is your GP aware of your family history? Perhaps you need to talk to a specialist with more expertise?

I think it makes more sense to first try accepted hormone therapies with medical supervision and lab tests to monitor how your body is reacting than to try supplements.



Amity
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04 Sep 2019, 4:10 pm

BTDT Yes they are aware, I've discussed it each time I've gone for the appointment to arrange tests and at the follow up appointments. Though the anxiety/depression makes its confusing to know whether I am fixating on something in a way thats catastrophrosising, it's something the doctor has hinted at. Deep down I dont think I am.

I dont mean to say that I wouldn't consider prescribed medication, I can feel that something is off with me and until I find out what that is, supplements can't hurt.

Yes I should push to see a consultant, my difficulty thinking things through is another reason I'm posting about this.



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04 Sep 2019, 7:38 pm

One of the things they look for when testing drugs is any effect. A drug that makes a disorder or disease worse means that they may actually be close to finding something that works.



B19
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09 Sep 2019, 4:34 pm

An afterthought re your symptoms Amity: are your iron levels ok, did the doctors rule out anaemia?



B19
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09 Sep 2019, 4:39 pm

I haven't had endometriosis, though I do know of women who suffered twice - from medical prejudice,negligence and ignorance; and the severe pain of their condition.

This morning I heard of this book called "Pain and Prejudice" which may be a must read for every woman and especially young women who have severe pain from this often very painful condition. Here's the link:

https://www.theguardian.com/books/2019/ ... h-about-us



Amity
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09 Sep 2019, 4:51 pm

B19 wrote:
An afterthought re your symptoms Amity: are your iron levels ok, did the doctors rule out anaemia?

I've been borderline anemic many times before supplements helped to sort that out. It hasn't been a problem for a while. Getting bloods checked again next week. Doc reckons tiredness, brain fog etc is linked to the emotionally challenging therapy for past trauma that I've been doing for a few months now. He could be right.



IsabellaLinton
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09 Sep 2019, 4:57 pm

Amity wrote:
B19 wrote:
An afterthought re your symptoms Amity: are your iron levels ok, did the doctors rule out anaemia?

I've been borderline anemic many times before supplements helped to sort that out. It hasn't been a problem for a while. Getting bloods checked again next week. Doc reckons tiredness, brain fog etc is linked to the emotionally challenging therapy for past trauma that I've been doing for a few months now. He could be right.


Have you ever looked into Haemochromatosis? It can mimic anaemia, but it requires very specialised iron tests which might actually indicate you have too much iron. It's confusing, because regular iron tests might indicate a deficiency. This is a fairly common disorder for people in Northern UK, especially women with Irish descent.



Amity
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10 Sep 2019, 2:52 am

IsabellaLinton wrote:
Amity wrote:
B19 wrote:
An afterthought re your symptoms Amity: are your iron levels ok, did the doctors rule out anaemia?

I've been borderline anemic many times before supplements helped to sort that out. It hasn't been a problem for a while. Getting bloods checked again next week. Doc reckons tiredness, brain fog etc is linked to the emotionally challenging therapy for past trauma that I've been doing for a few months now. He could be right.


Have you ever looked into Haemochromatosis? It can mimic anaemia, but it requires very specialised iron tests which might actually indicate you have too much iron. It's confusing, because regular iron tests might indicate a deficiency. This is a fairly common disorder for people in Northern UK, especially women with Irish descent.

At a glance it doesnt seem familiar to me Isabella, but I'll have proper read about it all the same, interesting, thanks.



martianprincess
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10 Sep 2019, 10:46 am

Amity wrote:
IsabellaLinton wrote:
Amity wrote:
B19 wrote:
An afterthought re your symptoms Amity: are your iron levels ok, did the doctors rule out anaemia?

I've been borderline anemic many times before supplements helped to sort that out. It hasn't been a problem for a while. Getting bloods checked again next week. Doc reckons tiredness, brain fog etc is linked to the emotionally challenging therapy for past trauma that I've been doing for a few months now. He could be right.


Have you ever looked into Haemochromatosis? It can mimic anaemia, but it requires very specialised iron tests which might actually indicate you have too much iron. It's confusing, because regular iron tests might indicate a deficiency. This is a fairly common disorder for people in Northern UK, especially women with Irish descent.

At a glance it doesnt seem familiar to me Isabella, but I'll have proper read about it all the same, interesting, thanks.


Hemochromatosis is pretty common - and sometimes women don't know they have it until they're menopausal, because their periods stop and a treatment for hemochromatosis is to donate blood, or getting your period and releasing some of that iron buildup in your system. We used to have people tested for this at the genetics clinic I worked at. The most common cause is a pathogenic variant of the HFE gene.


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Amity
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11 Sep 2019, 3:46 am

martianprincess wrote:
Amity wrote:
IsabellaLinton wrote:
Amity wrote:
B19 wrote:
An afterthought re your symptoms Amity: are your iron levels ok, did the doctors rule out anaemia?

I've been borderline anemic many times before supplements helped to sort that out. It hasn't been a problem for a while. Getting bloods checked again next week. Doc reckons tiredness, brain fog etc is linked to the emotionally challenging therapy for past trauma that I've been doing for a few months now. He could be right.


Have you ever looked into Haemochromatosis? It can mimic anaemia, but it requires very specialised iron tests which might actually indicate you have too much iron. It's confusing, because regular iron tests might indicate a deficiency. This is a fairly common disorder for people in Northern UK, especially women with Irish descent.

At a glance it doesnt seem familiar to me Isabella, but I'll have proper read about it all the same, interesting, thanks.


Hemochromatosis is pretty common - and sometimes women don't know they have it until they're menopausal, because their periods stop and a treatment for hemochromatosis is to donate blood, or getting your period and releasing some of that iron buildup in your system. We used to have people tested for this at the genetics clinic I worked at. The most common cause is a pathogenic variant of the HFE gene.

Hmm this has got me thinking, the two things you mentioned, blood donation and periods are things that have changed.

I used to donate blood regularly, but I stopped meeting the criteria after the contaminated blood scandals here, I needed a blood transfusion as a child, before checks were more tightly regulated.

More recently I've switched to having my period every 3 months...
Was planning on moving to the rod or the coil next week as I kept getting breakthrough, think I might hold off on that now until I've done some more checks...



shortfatbalduglyman
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11 Sep 2019, 12:10 pm

Barriers to health care


My insurance requires that clients phone the Access line for psychiatrist and counselor referrals

The intake clinician tells the client a clinician will call back in 48 hours

They don't tell you what time

If you don't have a phone, you have to try take an incoming call from a pay phone :roll:


You can't make a counselor or psychiatrist appointment online


You can't email the counselor or psychiatrist



This is why I keep postponing both . Among numerous other reasons


:roll:



B19
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13 Sep 2019, 4:34 pm

When I looked at the dangerous drug regime that this man was concurrently prescribed, I felt sick to my stomach, nausea and disgust. It happens to women too - in fact it happens much more often to women. The article is an exemplar as an illustration of the real danger in this "leap to psychiatric diagnosis". I suspect that if we knew the real life rate of this happening, we would all be too shocked to speak, before we were able to comment on the outrage of the harms done by the combined impact of missed diagnosis + misdiagnosis.

https://www.odt.co.nz/regions/central-o ... al-illness

I literally shuddered reading this account. The Otago Daily Times is a paper in NZ that is recognised as non-sensational, thorough and factual reporting.