New! Determined! Angry! (That's the testosterone)
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aresvallis
Posts: 30 Member
Hi everyone! I've been using mapmyrun for a few years now and finally decided to get on the boat with the pal rather than use the annoying apps I was on my phone that wouldn't sync together properly.
I'm 33, was diagnosed properly 3 years ago although I've suspected I've had it since at least 2008. I'm not currently being treated. I'm doing this lifestyle change bit, totally not on doctor's orders because I need some way of controlling it and they haven't said a darned thing in months, which is most of my problem.
Related, I had a massive cyst show up in 2013, got it drained, it came back, only just got it out last year today. My side is constantly pained, still healing and I have to deal with having a 12" hitch in my core muscles.
in 2015, I got put on the contraceptive, wasn't happy on progesterone, switched to the estrogen tablet they use to treat PCOS here at the end of 2016, Cerelle. Last summer, got told by one of the GPs I didn't have to do the seven day off period and I'd be fine just taking them every day, so I did. Everything was great!
My mood stabilized, my weight was down without doing anything, and even my facial hair started fading I was pretty happy.
Then six months ago, after being on the estrogen for ages, started having a month long light bleed for no apparent reason. Did they do anything about this to figure out if there was something else wrong? Nope, the On Call that day just told me to stop, immediately, didn't mention any of the side effects that stopping estrogen so suddenly would cause, but I like to think she didn't know the debilitating month long headache coming off the estrogen that replaced the bleed would happen. But she did tell me to lose six stone, whatever those are! I remember being rather shocked she just said just like that "You should also lose weight." Not because of the PCOS but as a complete aside.
And no I'm not kidding, the headache was that bad, the entire one side of my head throbbed constantly to the point where I did in fact go back because the pain was worse than the time I had a cyst pop. The on call I saw for the headaches (same one that took me off the pills in the first place) referred me to a gyno appointment, which only just a few days ago got an appointment letter for. For June. So I've been without all this time and my beard hair has come back with a vengeance and I swear I can feel the testosterone when it is high because it's like having ants crawl around my nerves and I want to punch walls. I call those days my Banner Days. Because, you know, Bruce Banner hulking out.
And out of all of that, what is the most irritating thing? Being told to lose weight despite already having an decent diet and very active and was already down. That one is... like, really?? I didn't have a car for years, I walked everywhere, I don't eat things that make me feel sick which is most junk food and dairy, and that's habit now, most of the weight is muscle mass and that kinda thing doesn't just disappear. I wear a 16(us size)! Still do despite the recent gain. I used to run miles and bike 8 miles every few days in the summer before I got the Cyst. Of course while doing so I didn't lose an inch, just gained muscle under the fat layer thanks Scandinavian genes. Even when I had little body fat before my PCOS set in proper, I still couldn't wear leather boots because you get those giant calf muscles, it's so irritating.
I'm very determined now because I'm sorta tired of falling through the cracks. Half the people involved in my care doesn't seem to either know what to do or don't care, or realize this is an actual condition that matters and zeroed out my quality of life on top of the post-surgical problems, and then there's that salt in the wound some of them don't realize that I'm already eating healthily and trying to kepe off weight and it still goes up sometimes and, well, people who don't get weight gain as a symptom makes Hulk want to Smash.
While I do hope to lose some, I'm just trying to get back to where I was, biking 8 miles and running 1. Besides having a complete record of my calorie and exercise to print out to wave around is a nice bonus.
Mostly I just want to channel all that Rage into something productive to get my hormones back into balance and I didn't feel like taking up Death Metal.
So hi!
I'm 33, was diagnosed properly 3 years ago although I've suspected I've had it since at least 2008. I'm not currently being treated. I'm doing this lifestyle change bit, totally not on doctor's orders because I need some way of controlling it and they haven't said a darned thing in months, which is most of my problem.
Related, I had a massive cyst show up in 2013, got it drained, it came back, only just got it out last year today. My side is constantly pained, still healing and I have to deal with having a 12" hitch in my core muscles.
in 2015, I got put on the contraceptive, wasn't happy on progesterone, switched to the estrogen tablet they use to treat PCOS here at the end of 2016, Cerelle. Last summer, got told by one of the GPs I didn't have to do the seven day off period and I'd be fine just taking them every day, so I did. Everything was great!
My mood stabilized, my weight was down without doing anything, and even my facial hair started fading I was pretty happy.
Then six months ago, after being on the estrogen for ages, started having a month long light bleed for no apparent reason. Did they do anything about this to figure out if there was something else wrong? Nope, the On Call that day just told me to stop, immediately, didn't mention any of the side effects that stopping estrogen so suddenly would cause, but I like to think she didn't know the debilitating month long headache coming off the estrogen that replaced the bleed would happen. But she did tell me to lose six stone, whatever those are! I remember being rather shocked she just said just like that "You should also lose weight." Not because of the PCOS but as a complete aside.
And no I'm not kidding, the headache was that bad, the entire one side of my head throbbed constantly to the point where I did in fact go back because the pain was worse than the time I had a cyst pop. The on call I saw for the headaches (same one that took me off the pills in the first place) referred me to a gyno appointment, which only just a few days ago got an appointment letter for. For June. So I've been without all this time and my beard hair has come back with a vengeance and I swear I can feel the testosterone when it is high because it's like having ants crawl around my nerves and I want to punch walls. I call those days my Banner Days. Because, you know, Bruce Banner hulking out.
And out of all of that, what is the most irritating thing? Being told to lose weight despite already having an decent diet and very active and was already down. That one is... like, really?? I didn't have a car for years, I walked everywhere, I don't eat things that make me feel sick which is most junk food and dairy, and that's habit now, most of the weight is muscle mass and that kinda thing doesn't just disappear. I wear a 16(us size)! Still do despite the recent gain. I used to run miles and bike 8 miles every few days in the summer before I got the Cyst. Of course while doing so I didn't lose an inch, just gained muscle under the fat layer thanks Scandinavian genes. Even when I had little body fat before my PCOS set in proper, I still couldn't wear leather boots because you get those giant calf muscles, it's so irritating.
I'm very determined now because I'm sorta tired of falling through the cracks. Half the people involved in my care doesn't seem to either know what to do or don't care, or realize this is an actual condition that matters and zeroed out my quality of life on top of the post-surgical problems, and then there's that salt in the wound some of them don't realize that I'm already eating healthily and trying to kepe off weight and it still goes up sometimes and, well, people who don't get weight gain as a symptom makes Hulk want to Smash.
While I do hope to lose some, I'm just trying to get back to where I was, biking 8 miles and running 1. Besides having a complete record of my calorie and exercise to print out to wave around is a nice bonus.
Mostly I just want to channel all that Rage into something productive to get my hormones back into balance and I didn't feel like taking up Death Metal.
So hi!
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Replies
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I don't even have words for all this. I'm sorry for all of your struggles. And docs who don't have hormonal issues don't get it.
1 stone = 14 pounds, so she was telling you to lose 84 pounds, which if you have a good lean body mass percentage, makes no sense.
I'm sorry for your struggles.
But, I would go to see an Endocrinologist if you can. My Endo is the one who formally diagnosed my PCOS, got me on metformin, diagnosed a side along thyroid condition, etc. He's given me my life back.
Inositol is a hormone balancing vitamin that might help you, but you probably want to get a full lab panel work up before adding it in.
Sending the best thoughts...
And death metal is cool and all, but it's really just gutteral screaming atop regular metal, which is much better...
(hugs)1 -
I feel you. Oh, do I.
10 or so years since diagnosis and all I've gotten is a few stints of Metformin, three suggestions to join Weight Watchers, and a weight management specialist who had the gall to tell me "it's just a numbers game" (with regard to my weight).
I'm literally tracking my food and other data so that I can print it out and beat the next person over the head who says that.0 -
Thanks! You guys are sweet. Sometimes I don't even have words. There is so much I haven't even mentioned yet like how they wanted to get me out of the hospital two days after having a highly invasive abdomen surgery and yet left me without painkiller for over 4 hours and the epidural tube in my back for another 12. AND never bothered removing the ovary cysts while they were at it.
Oh gosh, 84?? That would have put me ridiculously below comfort zone for my Scandiwhoovian body type. It probably would have required reducing muscle mass too. Yeah, Doc L would have been surprised if she actually started poking me, what with my lean mass not being all that soft. I was around 230ish at the time, quite a normal weight for being muscley and slightly overweight for me. I could have gone down 20 lbs and fit into a size 12 easily, possibly smaller. I start getting uncomfortable at 190. Right now I'm at 250ish.
I really, really hate the BMI. I have a funny story from graduating college. When I put in my order for a gown, I made the mistake of putting my height and weight on the form and they gave me a gown that literally could have been a tent. It was ten sizes too big or something like that. The sleeve was five. FIVE. I measured, inches beyond the tips of my fingers. The gown itself dragged on the ground like I was a little girl dressed up in mommy's clothes. I took it back to the store and put it on for the gowns clerk and she said "Oh my god." They got me a new one just in time and it's a good thing because if they hadn't... I found out later the grad ceremony was televised.
I can't. It's the NHS, and an particularly annoying example of the Not Listening game. I've been asking for an Endo referral for over a year and a half and when they finally decided I needed one it was the gyno despite I'd just told Dr L "I want to see an endo." AND the gynecologist is the one that gave me the progesterone and the awful anti-hair cream for my face, and didn't suggest jack beyond that in the first place. I'm doubting they're going to do anything in this upcoming appointment. I was assured that they were 'fully equipped to deal with PCOS' and I'm thinking then why didn't they go more in depth with my PCOS once they diagnosed me.
I read articles and I see all these breakthroughs and studies and I keep asking myself why aren't doctors actually using these things. Symptoms that I have to live with daily are considered abnormal for others and then they get treatment and I find that so amazing that you can live without something that doctors have basically told me there was nothing wrong with me for.
I've already been using Inositol, spearmint, coffee, and extra vitamins off and on and have been considering trying fenugreek (blessed thistle). My labs come back normal last month, which I find difficult to believe, and I keep asking myself if the results are actually off for me despite being within average. Averages don't account for you being not average.KnitOrMiss wrote: »
And death metal is cool and all, but it's really just gutteral screaming atop regular metal, which is much better...
(hugs)
Omg Aggretsuko is such a cute show! You should see it if you haven't. It's hilarious and so on point for everyone who has to deal with daily grind.Dragonwolf wrote: »I'm literally tracking my food and other data so that I can print it out and beat the next person over the head who says that.
This is literally one of the reasons why I picked MFP. If I wind up with Dr L again, I'll have it right on my app if not printed.
I think this time I'm going to aim for body building as a long term goal. It's hard to tell someone to lose weight when their muscles are rippling at you.1 -
As far as the inositol, there is a difference between types (myo vs. whatever the other form is)... Also, I think therapeutic numbers are 8-12 grams....??? I want to say. I know I never made it anywhere close to the numbers. @Dragonwolf probably remembers - she's the one who told me!
Vitex can be better at actually balancing the hormones, but there's more ... risks I think? Inositol is B8, that especially for PCOS folks, we don't make it or don't make enough at all...hence the supplementing.
Being in the UK, @aresvallis , I would check the HealthUnlocked forums.
Maybe if you can get someone to do a TSH, FT4, FT3, just for laughs, you might be able to get that endo referral. I can say first hand that if you've been dealing with PCOS for any length of time, by now, it's created cascading hormonal failure, up to and including insulin and thyroid hormone levels, at the very least.
the forums on:
https://healthunlocked.com/
will have more info on how to navigate and work within NHS. And actually, there are private pay Endo's, if you've the means. BUT, that being said, I don't think there is a specific group for PCOS, but bounce around on there and see if anything ELSE fits you...
Raw carrot daily can help sop up excess estrogen (I can get a link if that would help), which might help any remaining headache withdrawal mess. But as rude as it is, I'm thankful for you sharing your experience, because I take continuous BCP with estrogen (my progesterone situation is disastrous, and has been for over a decade now, so it would have never worked anyway)...and I really can't bear any more headaches/migraines than I already have...
As far as the other stuff, inositol just created hormonal havoc for me, as I was on suppressive birth control pills. I didn't like the way it made me feel.
I have a number of other comorbidities, and no one can really say which started the whole mess... I can say that with getting my thyroid decently treated has helped, but I'm still not 100%, etc. Oh, and metformin has to be started in 250 doses, 1 time a day, for a week or two at a time before increasing dose, up to an optimum of 2000 mg daily, so 1000 mg twice a day. Going that slowing minimizes digestive issues and optimizes results, etc. 1000 mg is considered the minimum therapeutic dose, and 2000 is the optimum therapeutic dose.
Happy to answer ANYTHING... (HUGS)0 -
No worries, I'm used to being very frank in discussions of medical issues. If it helps at all then the experience isn't put to waste. I'm sorta used to it because my sister has Cystic Fibrosis, actually.
I have to say I'm not unaware of healthunlocked but I haven't found it particularly helpful at the moment. Sometimes the posts on there take a certain amount of deciphering. The main issue with my GP is you have to call in precisely at 8am to get an appointment, which if you're lucky you MAY get through. It will usually beep busy until 8:10am, at which someone will usually say all the appointments for the day have been taken. And, they do not schedule in advance nor have any kind of queue or waiting system for the phone. There's multiple people leaving reviews that have called for weeks and weeks and never got a single appointment. So that's a big issue trying to get anywhere. The hospital is worse, current waiting time is seven months for an appointment. I actually have no idea how to change GPs otherwise I'd do it though.
Oh, that reminds me, have you guys read the recent study published? Supposedly there's new evidence that suggests PCOS starts in utero; https://www.newscientist.com/article/2168705-cause-of-polycystic-ovary-syndrome-discovered-at-last/
That sums up the findings so far. Nothing starts the mess apparently, it starts everything else.
I've had my thyroid function checked about a year ago, but like the A1C it fell within "average" so they aren't going to do anything, despite that my mother has both diabetes and hypothyroidism. (They also said my testosterone was down at the time). I'm very confused at the whole thing because even my husband and friends can tell when my blood sugar goes low, and I always feel exhausted or tired.
Oh no! Why did it have to be carrot? There's not a lot of vegetables I will not eat, but carrot and eggplant top the list. That's good to know, though.
To expand on my headaches issue. I used to get the same kind of headaches occasionally on the progesterone whenever I got a period, and. Well. Any time oxytocin happened. Yeah. That and the zero libido the progesterone caused. That was truly annoying. One of the many reasons why I wanted to go to the estrogen, which after many times of asking, one of the GPs finally switched me.
I did not have many headaches on the estrogen in contrast, it wasn't until I went cold turkey that I had The Migraine. Some days I cried because I couldn't even sit up without having a wave of pain and nausea swamp me. Taking painkillers only made it bearable. It would not stop until about December and then I wound up with the flu so I had Migraine plus flu migraine, so that was fun. If I compared the pain of my surgery to the Migraine, Migraine would win.0 -
If you're over 20, your TSH should be under 2. Labs will allow higher numbers, but it's wrong. I'll try to look up the letter to take to your GP to explain... It's a NHS letter....
My fasting glucose and fasting A1c are great, but my fasting insulin is high. I'm somewhere between a pre-diabetic and unconventional/undiscovered diabetic...with a binge eating disorder and such. Fun.0 -
I'm 33, though I didn't have any definitive symptoms for PCOS until I was mid-20s. Notably the facial hair because that's what finally made the campus nurse go "Okay, you're probably right this sudden six month period gap isn't normal." but not, hilariously, my protests I'd never been late, irregular or off before since I started.
If there's something that'll help out I'll definitely high tail it down to the GP with it. Truth is I'm completely lost in regards to the NHS, there doesn't seem to be a lot of channels to go. Back home I'd just get a second opinion. Really missing that here.0 -
KnitOrMiss wrote: »As far as the inositol, there is a difference between types (myo vs. whatever the other form is)... Also, I think therapeutic numbers are 8-12 grams....??? I want to say. I know I never made it anywhere close to the numbers. @Dragonwolf probably remembers - she's the one who told me!
Vitex can be better at actually balancing the hormones, but there's more ... risks I think? Inositol is B8, that especially for PCOS folks, we don't make it or don't make enough at all...hence the supplementing.
Being in the UK, @aresvallis , I would check the HealthUnlocked forums.
Maybe if you can get someone to do a TSH, FT4, FT3, just for laughs, you might be able to get that endo referral. I can say first hand that if you've been dealing with PCOS for any length of time, by now, it's created cascading hormonal failure, up to and including insulin and thyroid hormone levels, at the very least.
the forums on:
https://healthunlocked.com/
will have more info on how to navigate and work within NHS. And actually, there are private pay Endo's, if you've the means. BUT, that being said, I don't think there is a specific group for PCOS, but bounce around on there and see if anything ELSE fits you...
Raw carrot daily can help sop up excess estrogen (I can get a link if that would help), which might help any remaining headache withdrawal mess. But as rude as it is, I'm thankful for you sharing your experience, because I take continuous BCP with estrogen (my progesterone situation is disastrous, and has been for over a decade now, so it would have never worked anyway)...and I really can't bear any more headaches/migraines than I already have...
As far as the other stuff, inositol just created hormonal havoc for me, as I was on suppressive birth control pills. I didn't like the way it made me feel.
I have a number of other comorbidities, and no one can really say which started the whole mess... I can say that with getting my thyroid decently treated has helped, but I'm still not 100%, etc. Oh, and metformin has to be started in 250 doses, 1 time a day, for a week or two at a time before increasing dose, up to an optimum of 2000 mg daily, so 1000 mg twice a day. Going that slowing minimizes digestive issues and optimizes results, etc. 1000 mg is considered the minimum therapeutic dose, and 2000 is the optimum therapeutic dose.
Happy to answer ANYTHING... (HUGS)
D-chiro (DCI) is the other. They generally work best when combined, but DCI is hard to come by and rather expensive. Therapeutic dose of Myo for PCOS starts at 4g, and 12g for anxiety/mental health stuff. There's no known upper limit.
And yeah, Vitex is more active in balancing hormones, but is also more drug like. The biggest risk, though, is with pregnancy, so be careful or just avoid it if you're trying to get pregnant or think you might be. Otherwise, you should be okay. Always do your homework, though, especially if you're on other meds.
Red clover is another one worth looking into, as well.0 -
According to my last test my TSH is 2.4 and T4 is 11.5. It also says "No action" so I guess they aren't going to do anything about it. What was that letter to take in to the GP? I think I might need it.0
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@aresvallis
This was the info I saved down.
If you want your GP to increase Levothyroxine dose you could show GP Dr. Toft's article in Pulse Magazine a few years ago. Read Treatment Options in
http://www.thyroiduk.org.uk/tuk/about_the_thyroid/hypothyroidism.html
Email louise.roberts@thyroiduk.org if you would like a copy of the Pulse article to show your GP.
Do you have the ranges that show with the numbers there?
There are also many co-factors. A good breakdown can be found on this site:
https://stopthethyroidmadness.com/recommended-labwork/
https://stopthethyroidmadness.com/lab-values/
But I did look the healthunlocked site does actually have a PCOS section...I still haven't looked too deeply there.
And with a diagnosis of PCOS, you should be able to get the sachets of inositol through NHS...the good stuff, too!0 -
The TSH upper range is 4.4 for the lab that did my work.
I have a gynecology appointment (that I didn't ask for) this week so I'll try to do what I can.0 -
aresvallis wrote: »The TSH upper range is 4.4 for the lab that did my work.
I have a gynecology appointment (that I didn't ask for) this week so I'll try to do what I can.
@aresvallis
So yes, that is not optimal, but not horrible, either, on the TSH...
However, on the T4, is that Total T4? Or Free T4? Total T4 is a meaningless number without the point of reference of Free T4. Either way, is it at 75% of the range given?? 75% or higher? My TOTAL values allow for 5-14 or so...but again, without the FREE number, it doesn't really represent much.0 -
It's serum free T4, but as I understand it I should have had the full thyroid panel considering my PCOS status instead of just TSH and free T4. The TSH is .1 below what American doctors would consider abnormal-- 2.5 is the upper range and the NHS seems to have it twice as high?? It's so strange.
I just got back from the gynecology department at the local hospital where the gynecologist I saw also brought in the consultant on floor because I had such a weird reaction to coming off the Dianette. Well we started getting into the PCOS and how to reduce symptoms, and they basically told me EVERYTHING EVER I've learned from other PCOS ladies and you guys "has no evidence." Taking a pill was *it*.
Specific diet "has no evidence" it helps us lose weight or reduce the insulin resistance.
"Your T4 levels are normal so you don't have it and we don't deal with the insulin/thyroid side and don't do in house referrals. Go see your GP." Completely ignored me when I said it runs in my family.
Metformin "doesn't do anything, there's no evidence it does unless you're trying to get pregnant." Like that right there tells me it does??? They admitted this is something the hospital itself practices.
"PCOS is caused by the testosterone" they kept doing that one until I pulled out the anti-Mullerian hormone study that shows it causes the extra testosterone and messes with the pituitary which is where all the problems come in. They were confused by the headaches that I got while coming off of the estrogen.
In the end they prescribed a different estrogen tablet that isn't as strong as Dianette and something called spirunalax or something like that to 'sop up the extra testosterone.' I managed to do that much despite that they said they typically don't if the patient's BMI is too high- I flat out stated "American doctors don't even *use* BMI anymore.
I wear a size 16 and have a lot of muscle mass from running."
According to the gynecologist all of my labs are perfectly normal! My FSH, my LH, my TSH (an American doctor would have said it was high) so why the heck do I feel tired all the time and exhausted especially the day after a work out? This is worse than its ever been, I didn't have a car so I walked and cycled everywhere and with exercise I should be getting MORE energetic and I'm not.
I am incensed and frustrated.
Especially considering if I HAD said "yes I want kids I want to start trying" they probably would have done more than sent me on my way after taking 40 minutes to convince me everything that's recommended for PCOS by international doctors AND EVEN OTHER NHS DISTRICTS didn't work.0 -
@aresvallis
I don't like spiro (lactone or something). It caused me bad dehydration and stripped me of potassium, so I ended up with muscle cramps. And it did NOTHING for my chin/beard and lip/mustache hair. NOTHING. So noped right out of that one. But my testosterone levels aren't elevated. I can't fine any test where they were. It was an assumption due to the hair - and the PCOS. In fact, now, they're super artificially suppressed due to me taking an estrogen based BCP. To the point where I feel the effects of Low T...which they don't treat in women unless its extreme... STUPID.
**Do you have a link to that study? That's a new one on me. I wonder if I'm an outlier on that, too?**
And really, there is no evidence of those things, because PCOS is a syndrome. Syndrome is a collection of symptoms, which means no two people have exactly the same PCOS. There is overlap, sure. But much like all the variations of autism or dementia, no one medication cocktail works for everyone. So sure, no one thing has medical proof because the underlying factors are so different.
Plus, when it comes to diet or medication adherence, there have to be tightly controlled clinical studies. PLUS, the studies NEVER go for long enough. And there are never 100% proof, so "no evidence." Medical science regularly runs 20-30 years behind actual science... Sad but true.
I mention quite regularly that my anecdotal evidence works for me. When others recommend something to me, and it has the exact effect expected, or if I even just feel better for months on end, that works for ME, even if it doesn't work for everyone.
As for the biggest takeaway here that I see - feeling more exhausted after working out - while it can be thyroid related, that sounds WAY MORE LIKE AN ADRENAL ISSUE to me...spike/crash, like blood sugar...
That all being said, I'd probably start a post in the thyroid group on the healthunlocked forum. They can tell you if they're aware of NHS/GP intelligent doctors in your area that you can transfer to, and how to do it. As well as they can vindicate you as to what is normal for your numbers (make sure you list ranges with results), as well as tell you any over the counter stuff than can help.
Remind me of the TSH, with range, and the Free T4, with range. The TSH should be in the lowest 25% of the range, and the Free T4 should be in the highest 25% of the range. If those both are not the case, then you have subclinical thyroid dysfunction. Period. And that doctor is out of his/her element.
If they didn't run D3, B12, and iron as a minimum, I'd demand that at your next GP appointment, whenever that is. Mostly, D3 and B12 are hard to overdose on, especially in 6 months (assuming you do a yearly with the GP) or so, before you'd see a new GP. D3, especially in cloudy UK, is low in most ladies, especially with the issues/meds you have. B12 gets interfered with when on Metformin (but you're not taking currently, right), and BCP deplete it, too, so you're probably okay with a supplement there, too. I'd look up low and high symptoms on both and make an educated choice.
Since you had a month long (even light) bleed, iron is a gray area. you could have had high iron, which triggered the bleed, to get rid of some...so I'd hold off on that one until a test, maybe...
But D3 and B12 should be okay to start. Both support thyroid function.
P.S. TSH is not actually a thyroid hormone. It's a thyroid STIMULATING hormone produced by the PITUITARY and is the worst indicator of thyroid function. You can have problems for 10-15 years before it shows up in the TSH number. And if, as you mentioned, the pituitary is already messed up, it could be messed up here, too. I don't have a lot of experience with that info, though... Maybe @Dragonwolf has studied that angle more....
For your sanity, I would look up low adrenal functions, too, just to see where your symptoms line up. After a decade of thyroid issues, I'm starting to see that my thyroid issues might actually just be a result of my adrenals being a disaster for so long...0 -
Which study do you mean? The Anti-Mullerian hormone causality factor? The French Institute of Health did it. They injected pregnant mice with AMH and it caused their daughters to exhibit all the signs of PCOS when they grew up. So basically being exposed to AMH in utero causes excess AMH later in live. The researchers tried an IVF drug (cetrorelix I think) to reduce the AMH response and the daughter mice started functioning as if they didn't have it. There's a clinical trial for AMH treatment using cetrorelix starting this year. The newscientist article I linked up there is it, though I'm trying to find a place to access the published study itself.
Previous labs have shown my testosterone was actually high, the second one they said it had reduced but was still high. Seems to me I was happier and more laid back when it was lower. I think I can feel when I get a spike because it's all like ants along my nerves and I get angry all the time.
I know, TSH is more indicative of a pituitary and I pointed that out to her that it's hardly indicative of an actual thyroid issue, but she waved the singular free T4 test and said they don't check it if it's "normal like yours". They DID say I might try to get an endo referral to see why I might be fatigued, it was just they couldn't do it 'in house.' At this point I kinda want to request my appointments in London if that's even possible and I'll just eat the long bus ride because it seems like most of the progress on PCOS is being made there. (I'm actually used to traveling hundreds of miles between cities regularly so I can swing it.)
I'm just gonna post an pic of my test results with the names blanked out because there is a B12 result on there (it's 199 where the lowest range is 130 to 900 upper) and there's a note as well. ...and now I'm wondering what the heck the doctors are considering an deficiency. I've had a giant gray streak since I was 17. I'm only 33 and keep getting told that's natural to go gray at this age. Uh, not for my family, not at 17. My dad was in his 70s, STILL dark curly hair. Mom didn't start going until she was in her late 40s.
I don't think I see a D vitamin panel. Would it be different having only been here about three and a half years? The place I'm from tends to be sunnier in the summer but cloudy most of the winter. I'm not familiar much with D3 function.
The spike/crash only happens occasionally and under conditions I'm not entirely certain which triggers it. Most days I can get away without eating if I choose to, and then sometimes when I forget I start getting shaky, anxious and starving, and I can eat two large Domino's in a single sitting.
I've also been having very. ... I really don't want to share but if it will help, really smelly urine lately- stuff that smells like fish, smoked salmon to be precise, is cloudy no matter how much water I drink and seems to come and go. The last time I had this urine thing happen, I was in college and my period stopped for the first time and I started growing my first beard hair. That was back in 2009. When I went to the on campus clinic and it was first said I should get tested out for PCOS (before that, I thought I might have endometriosis because of the heavy bleeds, giant clots, and excruciating cramping).
But anyway the urine thing and a fainting spell is what made me go in for an A1C in April. So I'm still lost on what could be causing that. I was diagnosed with syncope for the fainting spell.
I have an appointment with the Dr who ordered this test on the 4th anyway, to discuss the results. He's fairly reasonable and has a good bedside manner.0 -
My D3 level can drop in days/weeks, so I would absolutely think it could go bad.
I have to say that something in their note makes me angry. My B12 level was around 250-280 when I discovered it was low (same allowable range). I have a PERMANENT NEUROPATHY SPOT IN MY THUMB. I can no longer open water bottles and such due to it. So if you WAIT until you develop neuropathy, IT'S PERMANENT most of the time.
Like WHAT??? Why would they do that!
Your Free T4 is far below optimal. 16.575 is the 75% mark. If you are not at or above that for your Free T4, something is off there. Especially since that TSH is a little high. Being in your 30's, you should be between 0.5 to 1.5. The combination here SCREAMS out that something is causing subclinical thyroid dysfunction.
Your ferritin should also be higher...but your hemoglobin and hemocrit aren't super low, so that could be anything... But you need the full iron panel with binding capacity, total iron, and percentage saturation. I've been told that treating from ferritin levels alone can be dangerous.
D3 affects just about everything in your body. I have urine smell reactions to foods like asparagus, but then also when I'm in nutritional ketosis and dumping ketones, it smells odd. The cloudly stuff can be dehydration, low electrolytes, a low level bladder infection, some kind of hormonal imbalance.
If you can go without eating sometimes, that's your liver dumping glycogen for you to keep functioning. But it's a limited store, and if you don't refuel it, that ability minimizes. But if that is happening pretty regularly, that means somewhere your glucose management function is impaired.
And since all hormones are connected - adrenal, thyroid, sex hormones, insulin, all of it - if one thing is off, eventually, they will all be out of balance.
I think the best thing to do, since you have an appointment in 2-3 weeks, is to go and do as much research as you can, and make a list of questions to ask.
Google the Vitamin D council for more info there. I can look up links tomorrow or next week if you can't find stuff. On the B12, there is new research showing that any level below 500 can cause nerve damage.
PCOS and Endometriosis can exist together.
Will re-read in the morning... Good luck figuring this out. I think you and I are about equally confusing! (HUGS)0 -
Re: B12 and the neighboring tests - eat more eggs. They're not low, per se, but incorporating more eggs in your diet should help bring them up into more optimal levels.
I concur with adrenal issues. Also, see about a cortisol test.
Re: thyroid, Stop The Thyroid Madness is a fantastic resource for that.0 -
I have PCOS, endometriosis and Andometriosis as well as hypothyroid and a severe vitamin d deficiency. The can absolutely go together.0
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I took in Stop the Thyroid Madness stuff and they poo-poohed it at the gynecology appointment. But at the end she did say where I was getting at it she just said mine was normal. I wasn't going to stand there and argue with her if she wasn't going to do anything about it so I just went "so what is making me feel tired all the time if everything is normal?" and left.
I know, but haven't had a blood clot since I went on the pill and I've had open abdomen surgery so I think it would have been mentioned if there was any loose tissue from endo. That's one good thing anyway. Most of the pain from periods is on my right side where the cysts are.
The hilarious part is I have been eating more eggs, had been when I went in for the test. BUT, that does explain why I have had some tingling in my fingers. I thought it was part of the urine/diabetes thing and apparently the doctor forgot when I told him I was having tingling in my fingers and toes. They knew that when they took the labs. Again, got poo-poohed when I told the gynecologist that, yet she had the test results up on her SCREEN.
What I haven't said is, the gynecologist and the consultant yesterday said that if they treated me for hypothyroidism/under active thyroid, it wouldn't do anything for me because "your levels are normal" and I would experience no change.
Is it just me or do they desperately want me to shut up and go away? That isn't my imagination is it?
Every time I've been to the hospital, whatever it was for, they wanted me to take the minimal option and go. Every time I question or push something they look a bit confused and then bring someone else in to convince me (this has happened too many times to be coincidence.)
This is an actual thing that's happening, right?
Don't they realize I'm American and that ain't gonna fly?1 -
aresvallis wrote: »I took in Stop the Thyroid Madness stuff and they poo-poohed it at the gynecology appointment. But at the end she did say where I was getting at it she just said mine was normal. I wasn't going to stand there and argue with her if she wasn't going to do anything about it so I just went "so what is making me feel tired all the time if everything is normal?" and left.
I know, but haven't had a blood clot since I went on the pill and I've had open abdomen surgery so I think it would have been mentioned if there was any loose tissue from endo. That's one good thing anyway. Most of the pain from periods is on my right side where the cysts are.
The hilarious part is I have been eating more eggs, had been when I went in for the test. BUT, that does explain why I have had some tingling in my fingers. I thought it was part of the urine/diabetes thing and apparently the doctor forgot when I told him I was having tingling in my fingers and toes. They knew that when they took the labs. Again, got poo-poohed when I told the gynecologist that, yet she had the test results up on her SCREEN.
What I haven't said is, the gynecologist and the consultant yesterday said that if they treated me for hypothyroidism/under active thyroid, it wouldn't do anything for me because "your levels are normal" and I would experience no change.
Is it just me or do they desperately want me to shut up and go away? That isn't my imagination is it?
Every time I've been to the hospital, whatever it was for, they wanted me to take the minimal option and go. Every time I question or push something they look a bit confused and then bring someone else in to convince me (this has happened too many times to be coincidence.)
This is an actual thing that's happening, right?
Don't they realize I'm American and that ain't gonna fly?
They poo-poohed at because the science they were taught in medical school is roughly 30 years out of date. Most of the MODERN thyroid stuff is in the last decade that it's really made strides. Unless they intentionally pursued specialized continuing education in a endocrinology related specialization, THAT WASN'T MEDICALLY REQUIRED FOR THEIR DISEASE, even my American born and raised Endocrinologist has taken research I've brought in and dug in himself. He is a specialist, dealing with diabetes, PCOS, and thyroid/adrenal issues - and he's appreciated the crowd-sourced information that I've brought in from groups like this - because once he researched it himself, he was able to translate that info and use it with other patients. Like Vitamin K2, paired with D3. It was just starting to make waves in the medical circles around him, and he dug in and now embraces the research, even though it's less common.
But, I had 3 crappy, horrid endocrinologists before and since him. My first one, he told me that if I could find a way to get off my butt, stop shoving crap in my face, and stop being fat, he **MIGHT** be able to fix my thyroid, though with a TSH at a 4.2 or something, he didn't know why my PCP bothered to put me on thyroid medication, unless it was to shut me up, because a 4 is fine. He didn't give a crap about my symptoms. He asked how long I'd been on Armour, which was maybe 60 days, and I was on the lowest dose possible. So rather than saying, "you still have symptoms, let's increase the dose a little and see if that helps," he said, "if you haven't started feeling better by now, it's not helping, BECAUSE YOU DON'T HAVE A THYROID ISSUE." And this was despite being over 300 pounds, and 5'4", and in my early 30's, having been to the gym, having had hormonal treatments, having had secondary infertility, having had problems sleeping, problems staying awake at work, being unable to function without caffeine, hair falling out, always cold, and so many other symptoms I can't even remember....
Needless to say, I fired him and never went back.
The second one, I think he retired before I even got an appointment, just blew me off and said I didn't need another referral because I wasn't a problem WITHOUT EVER SEEING OR SPEAKING TO ME.
Apparently, when you're obese, morbidly obese, people see you and assume you sit around eating ho-ho's and live at McDonald's. It's atrocious. And obviously, you being a fat lazy cow is your own fault - not an underlying medical condition that caused you to rapidly gain weight and be unable to lose it, despite trying nearly every diet/exercise plan under the freaking sun...
My most recent one, I was looking to transfer to someone within my City (I moved from a super small city to a larger city, but I had been seeing one in the nearest major city, which was 45 minutes away or so. I wanted to find one 5-10 minutes away from me. However, I went in, and this petite woman who looked like (and later confirmed) that she'd never been overweight in her life -- she told me, since I did okay on synthetic Levo before, with Lio added, and I just couldn't get level or feel good. Literally every 3-6 months, we had to increase or add medications. Since my doc finally agreed to switch me over to naturally dessicated medications, it's been life-changing.
She wanted me to switch back to the synthetics because she could change the dosages more readily. She said that the NDT is a inferior product, and it's inconsistent, and that the increments between doses was too large for them to treat someone well. Despite the fact that I felt fantastic compared to my previous medications. Apparently my symptoms didn't matter to her.
When she asked if my PCOS was "controlled," I indicated that I was on BCP, and so most of my symptoms were suppressed, but not treated... She immediately started asking if I wanted weight loss drugs or surgery. I agreed to try it. She literally prescribed one that makes my BCP like half as effective. I have Pelvic Organ Prolapse. Pregnancy at this stage (I'll be 42 next month) is literally dangerous, high risk, and just not an option I choose to have. I'm still, despite maintaining a 40 pound weight loss for 5-6 years, morbidly obese. But she felt it was okay to compromise my chosen birth control method. WITHOUT EVEN REALIZING IT. I found the risk when I googled before agreeing to pick up the prescription.
When I came back to follow up on labs, she just asked about whether I was ready to do the weight loss stuff. My TSH was 2.04, and she didn't care about symptoms, because the labs said I should be fine, etc. She didn't care that my testosterone was well below range, that my SHBG was skyrocketing through the stratosphere, that I felt completely unable to gain muscle or much benefits from working out, etc. That my Free T4 was BELOW ACCEPTABLE RANGE when optimal is at 75% of range or higher and my Free T3 was mid-range - not at 75% optimal... That my hemocrit and hemoglobin had dropped below range - she prescribed some crappy iron that has horrible absorption after I complained that asking my pharmacist for an OTC med wasn't going to cut it. Put anemia and something else on my chart without even discussing it with me or explaining anything.
Needless to say there were many other factors, and I didn't go back...
My current Endo can be a ...weird guy sometimes...and I don't always feel like he listens to me, but he listens a lot more than anyone else. He diagnosed my IR, confirmed and treated my PCOS, didn't act like me researching things was stupid...etc. He said that especially in women, who have such a hormonal crapstorm normally, he has to treat to the symptoms more than labs, because so many women's conditions hide behind each other....etc.
In most doctor's experience, google diagnoses should be eliminated, no eradicated. No good comes from educating the patient. They should take your experience, because obviously doctors know best and medicine doesn't change. Most of them have to "tow the party line" or comply with whatever companies want to keep their insurance program status. They don't want to cure people, just make money treating them, etc. Most docs have some kind of superiority issue anyway, so they don't want their knowledge questioned by us tiny humans... They also don't want to feel fallable... So there's way too many factors.
I think the medical profession here in the US and abroad is hard wired to think that most people are hypochondriacs that got a diagnosis off of Google or WebMD and have convinced themselves. Many medical folks don't understand how prevalent some issues are becoming. The standard high carbohydrate/low fat diet is killing the world, slowly. That, and they are pushed to see more and more patients daily, do more and more work with fewer resources. They simply don't have the time to delve in deeper...or the mental energy anymore, etc.
I try to remember those things when I go in, but I've also come to the point where I'm my own advocate. I won't let them fob me off. I understand that it's a little simpler here in the US, although far more expensive...
Sending you good thoughts on the rest of your journey.1
