And now for my very long "lady-problems"/thyroid post....

1929Spanish-GW

7 years ago

So I keep complaining about the physical-me. I've been diagnosed hypothyroid for over ten years. Mine is a conversion (T4 to T3) problem. We treat with compounded T3 only. My Endocrinologist tried Armour instead and I felt terrible. Ages ago another doc had me on a bit of Levo as well, but removing it made no difference.

It was a battle getting diagnosed because the blood work didn't present the "normal" hypo thyroid. One highly rated Endo told me he could tell from my physical that something was wrong but the blood work said otherwise. And then he was done. It was a very frustrating time.

Fast forward to now and I'm back to my pre thyroid weight while eating less and exercising more. My clothes don't fit, I bloat like crazy and my energy is dipping again. Taking time off work or underperforming is not an option, so I power through. But I'm tired, "fat" and grumpy.

Finally I got diagnosed with PCOS this month, which came as no surprise. I'm 51. For those who are younger, unless you were married and trying to get pregnant back in the day, my experience always has been docs didn't look very hard for underlying issues. My "lady-problems" have been going on since the beginning. I never wanted kids so they put me on the pill.

So now I'm on progesterone (natural pill form) and also taking the supplement DIM to try and knock down the estrogen. I know that it's going to take a while for this new protocol to kick in. I've been digging into Mary Shomon's materials for more info trying to educate myself more.

Anyone else have the combo of PCOS/hypothyroidism? What has your experience been? I'd love to hear from you.

What a pathetic post. I never needed those lady-bits in the first place. We should be allowed to return them with no repercussions if we aren't going to use them! I am done now.

Featured Answer

cattyles

7 years ago

last modified: 7 years ago

1929Spanish, your post is not pathetic. It's so frustrating to know you don't feel like yourself and that something is wrong.

For me, everything started with hypothyroid. My job requires mental and physical energy and initiative. That was the first thing to go. Then came menopause, the death of my soul mate with whom I had reconnected, the death of my beloved heart cat, the caretaking of my very difficult dad, my son boomeranging back home, and of course......depression.

During all of this, my thyroid tested barely low but I was aching, exhausted, unfocused, had a huge appetite and my face changed. People that I didn't see every day looked shocked when they saw me.

I had been to two Internal Med docs and two endos. They all shrugged because my thyroid levels were high normal on Levo. I finally went to a dear psychiatrist because my depression became debilitating. I would lay in bed remembering how vibrant and competent I had once been and thinking everything was over. My boss was fabulous but I have no doubt I was on the brink of losing my job. I don't know what would have happened if I was not taking care of my dad, I felt like I wasn't any good for anything else. But at the same time, he is a very difficult alcoholic that was exacerbating the stress.

The psychiatrist had seen what was happening with me before. He increased my antidepressant and put me on a med for ADD. This cleared the fog enough to save my job. He then sent me to one more internal med doc. She treated my symptoms instead of my numbers. What helped me was Armour and a specific T3 compound. That was 6 months ago. I no longer take an antidepressant or the ADD med. Twenty pounds came off from my appetite returning to normal, being active again and not eating the junk I was no longer craving. My nose and face went back to normal. The two endos both said coarsening of facial features was a very specific symptom of not being able to convert t3 but would not address it because my numbers were not quite indicative; low, but not what the textbooks taught.

See? Now this is a pathetic post! And all to say, keep trying! If you know you don't feel right, keep going to someone different. What the psychiatrist understood, was that women's hormones and chemicals are complicated and mysterious but we know when something is not right. He even talks about this being part of our psyche and is no different to our wellness and well-being than a healthy heart or liver.

I felt such a definite "ding" of familiarity when you said you hate how you look, I had to (over)share. It sounds like what's going on with you is different but the same. You have to find someone who will treat your symptoms and not be lazy about tracking down exactly what is going to help, instead of shrugging because your labs are ok or borderline. I'm a clinical medical professional that is now in administration and I almost gave up. I wish we all had doctors like Lynn's husband but they are not as common as we would hope, unfortunately.

Sorry to write a book everyone!

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Comments (18)

1929Spanish-GW
Original Author
7 years ago
Thanks Cattyles. Fortunately I'm not "wired" to be unhappy. So while I don't like the physical me, the rest of my life is great. I just miss my beautiful clothes. My enormous shoe collection has had to do double duty. And I have a wandering eye for handbags right now too. But I've walked away from two beautiful dresses lately that I can't get out of my mind like that super hot guy you met one nite and never saw again.....

I'm curious about your doses. I'm at 100mcg compounded T3. When we were treating with both, my former doc had me at 125mcg compounded T3 and 25mcg Levo. New doc didn't like the super high dose of T3 and we tested lower until we could reach an agreement.

The PCOS introduces a new element with, as I've researched, estrogen blocking conversion and progesterone assisting conversion. My estrogen was over 300 and progesterone was .5. Testosterone was above normal too. That's why I'm curious to hear from folks with both.

Okay, now I gotta go work. Will get back to this later. Thanks for indulging me today.
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cattyles
7 years ago
I will look when I get home this evening and let you know.
gsciencechick
7 years ago
I just have plain ol' hypothyroid, but one of the grad students who works with me has both hypo and PCOS. She says she has to do birth control pills but is obviously much younger. She found a good endo in Charleston and has been doing well.

I never wanted to get pregnant either, so I also would have had no idea about PCOS.

Good luck.
ianna
7 years ago
last modified: 7 years ago
I do have PCOS although not thyroid. Then again thyroid runs in the family. I just don't have it. You say you are on the progesterone (regardless of source) but have you been cautioned about using birth control at this age? I have. There are increased risks of cancer and strokes.
robo (z6a)
7 years ago
last modified: 7 years ago
A friend has big thyroid problems (Hashimoto's) and was initially diagnosed with PCOS at age of 40 but displayed none of the symptoms. She figured out that she was just going through really early menopause, which is a family trait.
User
7 years ago
1929Spanish, I have Hashimoto's Disease that causes hypothyroidism, and I've had it most of my adult life. It was stable during my child-bearing years, but has it's getting worse as I get older. I completely understand your frustrations with what are considered "normal" blood levels when you feel anything but normal. I've tried to read Shomon and have gotten some good information from her but the thyroid is so complex, misunderstood, and under-researched that finding consistent, across-the-board guidelines for treating it is impossible. "Exercise, healthy diet, rest, no smoking or drinking"... the same advice given to anyone! I've had to do a lot of experimenting to see what makes me feel better. It's more a holistic approach based on how I feel, which has been a good lesson in listening to my body.

I do not have PCOS, but a friend does. Her doctor is pointing to the relation between insulin resistance and PCOS and has her on a sugar-free, dairy-free, very low carb diet (carbs only coming from vegetables and fruits) along with some supplements that are supposed to support her adrenals. She's not sold on the supplements (and they are very expensive), but she's giving the food guidelines a few months to see if it doesn't help. But it's a very strict diet for her and I'm afraid she's going to have to start seeing some results as motivation to continue.

I know none of this may be helpful to you but just wanted to let you know that I understand your frustrations because so much of this is under-researched by the medical community. I'm heading into menopause and preparing for the ride, which isn't going to be fun.
gsciencechick
7 years ago
On a good note, I have been able to lose about 8 lbs this fall--yay! What has also helped my energy level a lot is a slight restructuring of my schedule. I still work a lot of hours, but I don't teach a night class on Mondays anymore (which was nearly a 12-hour day) and I don't teach on Fridays anymore. Speaking of which, I need to get back to some work! At least I'm able to stay home today and spend some time on the deck on a beautiful day.
cattyles
7 years ago
1929Spanish, I take 125mcg of Synthroid once daily and 50mcg of Cyclomen T3 twice daily. I was mistaken about the armour, we talked about it and my Dr. decided to use the individual synthetic T3 and t4 because it was easier to titrate.
1929Spanish-GW
Original Author
7 years ago
Thanks for sharing.

@gsciencechic, I went off the pill around 45 and that's when I started to feel like the thyroid meds weren't working as well. We tested my lady-hormones to see where I was with meno because I had an ablation and otherwise wouldn't know. (Talk about over-sharing!). We weren't looking for anything abnormal. Congrats on the weight loss. I've gained that much reintroducing Pilates in my exercise plan and eating 1200-1500 calories a day. That's what's making me crazy.

@lanna, you're right. I went off the pill at about 45. Just taking progesterone starting this month. My preference is to not take any medication, but that isn't an option. I have great docs now and we're working through this new diagnosis.

@robo, thanks. When I was in my 30's prior to the thyroid diagnosis, I thought the same.

@Lisad82, that is very helpful. Keep me updated on how she feels. I'm a big supporter of supplements, but they can be expensive. I've altered how I eat over the years, but I like a latte in the morning, a glass of wine and some pasta now and then. I've Ben truthful with my doc that I'm not giving those up entirely and eat otherwise pretty healthy all my life. I know that topic is on the table.

@Cattyles, my t3 is compounded to be time released. It's one of the advantages of compounding.
missymoo12
7 years ago
I have Hashimoto's and several other auto-immune maladies. I had severe endometriosis - but not PCOS. My daughter however is hypothyroid and was dx with PCOS last summer. Has battled weight gain, and has had issues with high Test levels. She has had nothing "work" as far as prescription remedies. she is on the pill after several months of having to be off and takes a hypertensive medication that suppresses testosterone. She has moved out west and has not found a new MD yet, poor thing eats nothing and gains weight.

This crap is seriously uphill...Docs know nothing.
1929Spanish-GW thanked missymoo12
1929Spanish-GW
Original Author
7 years ago
Missy, is your daughter in So Cal by chance?

Thanks again to those who've shared.
missymoo12
7 years ago
No - I should have said Mid-West... She did tell me a pharmacist/nutritionist she is working with has recommended berberine as a supplement. Benefits for PCOS is it functions like a natural metformin.
1929Spanish-GW thanked missymoo12
monicakm_gw
7 years ago
I have Hasimotos but not PCOS. I've been using compounded hormones for years. In June I had my levels tested and after reviewing the results my Dr said she wanted to add just a little more progesterone and DHEA. She would like to add testosterone but I can't tolerate it. OMGoodness! What a difference! Reduced whole body inflammation, eye puffiness, facial skin was near porcelain, libido, anxiety all improved. So after the end of that month, I asked her if we could bump it up a little more. She did...it was too much so the 3rd month we went back to June's amt. That's when all hell broke loose and I thought I was going to die :o Here's what happened. When I got the new formula in June, it was "gritty" in texture. It absorbed but this was the first time the cream was gritty. I just thought it was the progesterone and/or DHEA. July's formula (more progesterone) was gritty as well. August's formula was smooth. Remember, I backed off July's progesterone to the June amt.

Emailed my Dr about the formula difference. She said it was not supposed to be gritty and can't even absorb unless it's totally smooth and micronized. Well obviously it CAN work and DID. So I start on the (smooth) Aug. formula. Some of what I started to experience...face started breaking out, pore size increased, libido...gone! Swelling/inflammation came back, heart palpitations, digestive issues, fatigue, insomnia, emotional and cognitive problems and much more. I could barely put one foot in front of the other. Took me a little while to figure out what was causing all this as I have so many other physical problems including MS, FM. When I did figure it out, I stopped using the cream. Took about 3 days to start feeling better. I stayed off of HRT for about a month. I'm now on half of the dosage till I can do a retest of my levels. This is nothing to take lightly! These hormones can make or break you. I've been from one extreme to the other and shook out like a rag doll.

Along with treating my dog for heart worms (rescue dog that came to us with heart worms) and not being able to leave the house (because he had to be still and keep his heart rate and blood pressure down but would experience separation anxiety whenever left) it's been a long, stressful, and debilitating summer.
1929Spanish-GW thanked monicakm_gw
1929Spanish-GW
Original Author
7 years ago
Thanks Monica. Sorry you're going through this. I've used compounded progesterone creams in the past and aside from sore boobs, didn't feel much of an effect.

The only thing I take compounded now is T3 which can be compounded for time release. Cytomel has a short uptake so you have to take it multiple times a day. Balance that out with no food/caffeine for x hours before/after thyroid meds and the timing gets to be a real mess. I've moved all my vitamins and supplements to pm for that reason as well. The oral progesterone seems to be making a difference.

I go back in for blood work after two months on the meds. I'm hoping for some noticeable changes by then. I also need to book an earlier appt with the endo to make sure we've pulled everything together.
practigal
7 years ago
For a long time my weight would yoyo and I kep relating it to hormones or thyroid...now I think it is ractopamine in the final feedlot (it is outlawed in many countries). Do you eat meat?
1929Spanish-GW thanked practigal
1929Spanish-GW
Original Author
7 years ago
Not much. And almost all of that is organic. I didn't eat it at all for many years, but that's also when my carbs went way up.
strawchicago z5
7 years ago
For more info. on hypothyroidism, see below link:

http://forums.gardenweb.com/discussions/4387687/worthy-roses-that-give-useful-products-and-recipes-for-health-and-sleep?n=12

And now for my very long "lady-problems"/thyroid post....

cattyles

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