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.

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)

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.

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.

@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!

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.

@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...

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)

I have PCOS, endometriosis and Andometriosis as well as hypothyroid and a severe vitamin d deficiency. The can absolutely go together.

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.

The fluorescent light stuff is probably more adrenal if I remember correctly...and the super tired all the time can be both. Because there is so much overlap between the two, it literally takes a number of blood tests sometimes to get to the root of it...

I spend 8-10 hours a day underneath fluorescent lights, but I do have a daylight lamp I use sometimes...but the whole D3/K2, magnesium, zinc, boron, Vitamin A (12 hours offset) really helped get me back on my feet in that regard.

I simply cannot fathom that your GP, upon hearing you're tired regularly, didn't do a D test.... Like WHAT? Super easy/cheap test, super easy/cheap fix.... UGH.

And yes, I get tired of "your weight is the cause of all your symptoms." Nope, the symptoms came first, then then weight, then the symptoms got worse. The weight - and freaking inability to lose it - IS A SYMPTOM.... UGH.

We have to be our own best advocates, @aresvallis

Good luck as you continue on...don't lose hope, come back here and vent, ask questions, share what you learn, etc.

I will say though that starting on Metformin SUPER SLOWLY and ramping up SUPER SLOWLY stopped all the diarrhea side effects - and legit helped both my hunger, the rampant weight gain, and tolerance of foods. Before I thought I was going to die taking it....

The metformin titration is really relatively new, and not widely known, but nearly everyone who has the issues swears by it:

http://www.mendosa.com/blog/?p=1261

I also did the brand named Glucophage for a while, and that was WAY better as far as side effects, but I got into an argument with my insurance over it, and decided to go back and try the generic again... So far I'm doing okay, but I'm on an "increase" week, and it's been a little challenging. I'm trying to hit max dose per my Endo's request. I'm to 1500 mg, as of this week... We'll see if it sticks.

I'll respond with more, soon.

I have also passed the information on to my daughter, ex, and stepmom to make sure they keep an eye on her for issues, since she's 17... She's almost the opposite of me physically, though, and inherited far more from her dad as far as disorders and asthma, etc., so I'm hoping it skips her...

I'm sorry that you had to suffer to gain that knowledge, but thank you for sharing it...

That being said, I agree that it is completely asinine to suggest someone lose muscle and health to adhere to some ridiculous chart that has no bearing... I'd probably have argued back with my body fat percentage... UGH...

I'm so sorry...

I downloaded a chart that I can't find right now, but it basically compared which had the most estrogen, progesterone, and adrogens, etc.

My pill is higher in estrogen, but that's what it took me to get level... Perhaps the artificial estrogen forced my body to stop producing it, reducing my estrogen dominance? I really don't know. I'll see if I can find the chart again...