Tactics for making a doctor do a silicone test please!
I am seeing my gp this week and plan to ask her for my silicone levels to be tested. I am quite concerne3d that she will refuse and I need to be able to convince her of it. Am also seeing my neurologist tis week, who it has to be said this the most patronising and arrogant person I have ever met! I want to hit him.
I there anyone in the uk, anywhere who has been able to get this done and how did you approach it. My current situation as that my MRI and previous blood tests have come back with nothing significant. I have a nerve test coming up.
My main aim is just to know what has been left in my blood and then to treat it appropriately! At the risk of sounding crazy to my gp, I want some anwers! Just need to work out how I can get round her!
Have printed up sections of this site, iformation on silicone toxicity (particularly related to Norplant) and all symptoms of poisoning. I want her to read these and then tell me it's just the internet and it should be taken with a pinch of salt, when I have most of the hideous symtoms!
Anyway ladies, any tactics would be much appreciated!
Happy new Year and may it be a better one for us all!
I wish you all the luck in the world with this, ClareBear! Iím in the US myself, and canít even fi...
I wish you all the luck in the world with this, ClareBear! I'm in the US myself, and can't even find a laboratory that tests for silicone. I'd be more than happy to pay for it myself (do you even have that option over in the UK?), if I could just find out where to have the test done. I'm sorry I can't be of any help to you (other than moral support).
I do wish we could get all of us who are suffering with these horrible symptoms together in a room with all the doctors who poo-poo our symptoms and try to tell us they're all in our heads. If we could show them our sheer numbers and get them to listen to the same story over and over from thousands of different women, maybe they'd realize we can't all be crazy.
The neurologist said if my brain MRI showed anything he would do further testing on things that at...
The neurologist said if my brain MRI showed anything he would do further testing on things that attack myelin (nerve sheaths). I did bring up silicone and Lyme's disease and he seems open minded. Here are a few more articles for the fire. The first is very technical, so maybe it will carry more weight with drs. They tested for silicone antibodies.
I tell every dr. I see that I visit 2 Mirena websites, and in total there are over 24,000 negative comments on Mirena. I usually leave it at that, or sometimes I say, would you buy a car if it had 24,000 negative reviews? The one time I tried taking the first page of this site (showing the 6 million page views, etc.), the woman wouldn't even take it from my hand. But hey, maybe a seed has been planted. I pray everyone has a better year for 2011!!!
Hello Melanderso, ... ... Great to hear from you! The doctor Myhill report that you posted is th...
Great to hear from you! The doctor Myhill report that you posted is the one I am taking with me to my doctor! It makes perfect sense and is the only thing I have seen which completely fits my symtoms. I have been tested for auto immune diseases and Lupus which came back negative.
I like your line about not buying a car with .... Very good! I might try that one! I think my main plan is to try and stay calm. I have tended to get either extremely angry (to the point where I was scared that I might be violent) or to cry (or both). Maintaining control has to be the key otherwise they seem to assume we are mental. Thank you for you comment and good luck on this roller coaster!
Great articles - thanks for posting them! With my continued neurological issues and muscle weakne...
Great articles - thanks for posting them! With my continued neurological issues and muscle weakness, I've become more and more worried about other diseases I might have developed. Reading these articles makes me remember again that the silicone reaction might be playing more of role than I realize. I guess it's just that because I'm 13 months post, I feel like my recovery should be further along (or finished!) and that because I'm not back to normal, something else must be wrong.
I continue to believe that adrenal weakness/fatigue play a large role in autoimmune/hormone/thyroid/autonomic dysfunction. I've been reading from here:
This explains so much of what I'm experiencing with autoimmune issues, allergies, autonomic dysfunction, and obvious hormone imbalance. And it even points out that for someone in this state, lab work and tests can be fairly normal even though one definitely is not functioning normally.
If the adrenal fatigue is the reason for the body's reaction to the silicone (and subsequent autoimmune condition) and hormone imbalance, it makes sense to work on strengthening the adrenals as a part of the recovery. Maybe that's what helps the body to "burn out" on the silicone reaction in time. Maybe women with stronger adrenal function are the ones with the Mirena who have NOT had a reaction (yet, anyway!). Maybe it explains why I started having a more severe reaction after the strep throat infections I couldn't get rid of last year. Maybe the Mirena weakened me, which allowed me to develop the strep (which I had NEVER had before), and then this weakened my adrenals sufficiently to allow the downward spiraling of my health and development of autoantibodies. Maybe the hormones in the IUD further upset the adrenal/hormonal balance in the body (which is addressed in the article). Maybe this is why many women have finally recovered in time. They get the IUD out, try to focus on healing, which strengthens their adrenal system, and then they stop posting on this forum! ;) At least I'd like to think that many of the women, especially from a few years ago, no longer post because they are better.
Any thoughts? Does this make sense? Sorry to ramble. I'm just thinking out loud on my keyboard.
Itís a complete nightmare isnít it! Iíve found form a doctors report that there is only one test ...
It's a complete nightmare isn't it! I've found form a doctors report that there is only one test available in the uk concerning silicone, so I'm I'm going to tell the doctore the code of this when I see her.
Why does this have to be so difficult. As if we haven't already got enough to deal with! I wish I had some answers for you! There must be a place someone that will do it for you. I have become so suspicious of the medical profession that I don't believe they tell the truth about anything much!
I think that this test must be available, but that they are protecting themselves! Verging on paranoia I know, but it's not paranoia if it's the truth. Good lucki and don't give up! One day this thing will come out. It will probably be very cleverly covered up and the Mirena will just disapear off the market.
Anyway, I'm praying that I don't scream at My neurologist. That wouldn't be a good move! He'll deffinately think I'm mad then!
Hey Clare! How are you? Any luck getting your silicone levels tested? I plan to see a neurologist ...
Hey Clare! How are you? Any luck getting your silicone levels tested? I plan to see a neurologist bc I noticed my speech has been slurred, my train of thought has been limited and panic attacks came back so I'm asking they test my silocone levels too hopefully they will but anyways have u gotten any better since ur mirena removal. If so, what have you done to improve. Please help by replying!
HI ClareBear. Did you have any luck getting your silicone levels tested? ... Iím also in the UK &...
HI ClareBear. Did you have any luck getting your silicone levels tested?
I'm also in the UK & trying to find a doctor that will refer me for silicone testing.
I had the mirena fitted almost 2 years ago & a month later my health deteriorated very quickly.
As a result I've been completely housebound for over a year & a half. I have constant joint pain, great difficulty walking with burning & tingling from the top of both legs down to my feet continuously. Along with all the other classic symptoms associated with silicone poisoning . I'm having my coil removed on Thursday & I'm really hoping I don't go through the Mirena crash. My life has literally become a living hell. Does anyone know where I can be tested in the UK or if there's a lab online that I I can send a blood sample too? I'd really appreciate any help.
I am getting this health destroying IUD removed today. I have had 3 Mirena IUD's over 13 years & a baby I between. This last time I have had 2 different IUD's for 10 years now.
I have had horrible debilitating side effects & many diagnoses of autoimmune diseases to neurological problems. I feel POISONED!!
My latest symptoms are those of silicone poisoning- dizziness, debilitating fatigue, chronic joint & muscle pain, numb tingling extremities, epic brain fog... I found Standard Process supplements were recommended for silicone detox- Has anyone tried these??
Also if you have had an IUD as long as I have, will the healing take a much longer time??
I am SO angry I was totally misinformed by 4 doctors in 3 States over the years who all said the horomone was very small & localized to the uterus!! They lied!! And I nursed my baby almost 2 years with these chemicals in my breast milk!!!!
I donít know anything about silicone poisoning and I donít want to suggest that itís not a problem...
I don't know anything about silicone poisoning and I don't want to suggest that it's not a problem with Mirena; I have no idea one way or another. But a lot of the symptoms that people here associate with silicone poisoning are also symptoms of hormone imbalances (especially low progesterone). I saw this website arguing that it's BECAUSE the hormones are localized to the uterus that's the problemóour bodies get confused and stop producing progesterone in sufficient amounts. But the entire body (including the nervous system!) needs progesterone, not just the reproductive organs, so when there isn't enough of it, bad things ensue. (Because progesterone is important for calming the nervous system, it gets overstimulated when there isn't enough progesterone, leading to things like heart palpitations, elevated heart rate and blood pressure, anxiety, and peripheral neuropathy--all things that I experienced, and that I've seen on this forum over and over and over.) Since I've had the Mirena out I've been tracking my fertility signs with the Fertility Awareness Method (not trying to get pregnant--actually trying to avoid it, and also trying to better understand what's going on with my hormones), and recurrences of my symptoms (which are almost but not completely gone) are definitely tied to hormonal shifts, which at this point (8 weeks post removal) are not back to normal.
"It seems that Mirena is a common factor in the majority of the cases Iím seeing. The possible reason is that, although Mirena provides progestins to the uterus, its hormones do not reach progesterone receptors in other areas of the body, for example the breasts, adipose tissue or brain, where progesterone normally will have an effect. While oral contraceptives act by preventing ovulation (some women donít even menstruate while using the IUD), which in turn prevents the secretion of natural progesterone from the corpus luteum (formed in the ovary after ovulation), many of them also supply a dose of synthetic progesterone. Since the Mirena IUD only secretes progesterone to local tissues and therefore only acts at local receptors, it may be turning off the bodyís ability to secrete natural progesteroneónegative feedback loops might instruct the pituitary gland and the adrenal glands to stop making the bodyís own progesterone."