question to those who have stopped using estrogen - Thyroid UK

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question to those who have stopped using estrogen

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I would really appreciate hearing about other women's experience in this area.

I stopped using Estrogel (bioidentical estrogen cream) a month ago, perhaps foolishly, after reading over and over again (not so much here as elsewhere) that no woman should ever use E for more than five years, or there is an increased risk of breast (and possibly ovary?) cancer.

I was not put on E and P because I was peri-menopausal back in 2011 (I was 42 at the time), but because I was diagnosed with adrenal fatigue.

After my last cycle finished three weeks ago, I did not go back on E. I have continued to use Utrogestan, bio-identical progesterone, which I was put on at the same time as E back in late 2011. I have been using E day 5-15 of cycle, and P day 15-25, thus following my doctor's instructions. The reason I continued to use P is that I've read that peri-menopausal women are likely to be P deficient as the P production decreases by as much as 90% during this period...much more than E.

These past few weeks, I have noticed something strange: an increased need to urinate. I can go to the bathroom and then feel the need to go again 10-15-minutes later. At first, I thought it was just psychological, but I really seem to be producing much more urine lately. This has been even more noticeable on two occasions: three weeks ago, about the time my last period started, and for the past few days (this is day 19 of cycle). I know E levels are low right before menstruation and start decreasing during the second half of cycle as P levels peak, and wonder if low E levels can cause you to urinate more frequently...therefore, it would be interesting to find out if anyone else has experienced this? There is no other logical explanation that I can think of...because I have not started drinking more lately.

Lately, I have been going to the bathroom much more frequently than usual; sometimes up to three times an hour...and I've really needed to go.

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Thank you very much for this useful input!

I was diagnosed by a so called Hertoghe doctor in Belgium (they were previously known as Barnes doctors, but it seems they are now referred to as Hertoghe doctors).

The reason I was put on E-gel, along with progesterone (both bioidentical) and Medrol was because I was told my adrenal output was suboptimal (cortisol levels measured in blood and 24 h urine). At the same time, I was also put on NDT instead of T4 which I had been on since I was diagnosed with Hashi's in 2000.

In late 2011, I was told my FT3 levels were at the very bottom of range, both in blood and 24 h urine, although I had taken 200 mcg of T4 daily for years. I was also told this had caused my adrenals to be fatigued (for lack of a better word).

At the time, I did not question anything, I was just happy to get a diagnosis and I did feel much better once I started taking the hormones. After all, that is why I went through the time and trouble (not to mention costs) of seeing a Hertoghe doctor. It's only recently that I have starting reading about HRT and seen that estrogen should never be taken for more than five years, preferably not even that long, and only if your menopausal symptoms get so severe they are deemed intolerable. I was not even peri-menopausal at the time I was put on E-gel...

My doctor keeps renewing all my prescriptions, year after year, based on tests (now blood tests only, as the 24 h urine analysis test is used only once - between your first and second appointment).

About six months ago, I managed to wean off Medrol (it was a slow process as I had been on it for five years) and, so far, so good.

My doctor is in Belgium.

The problem with mainstream endos is that they focus on the TSH only and freak out as soon as it's suppressed. I will see if there is any endo specialising in HRT not too far from where I live.

I have begun to question those so called specialists recently...I have to admit I seem to do better on NDT than on T4 only drugs (synthetic T3 is not available in Belgium) but, so far, I have refused human growth hormone injections.

My most recent labs (from late August 2016, on day 21 of cycle as instructed):

FSH 5.0 UI/L (ref luteal phase: 1.4-5.5; menopause: 27-133)

LH 5.4 UI/L (ref luteal phase: 0.6-14; menopause 5.2-62)

oestradiol (101 pg/mL (ref luteal phase 21-312; menopause: <28); back then, I was still using E-gel from day 5-25 of cycle

progesterone 4.3 ng/mL (luteal phase 1.2-15.9; menopause <0.2) while on 200 mg Utrogestan from day 15-25 of cycle

total testosterone 0.34 ng/mL (ref 0.10-0.70)

Labs from December 2016, ordered by my gynecologist (on day three of period, so not on any sex hormones at the time; I guess this is the follicular phase?) I had these labs one week before my 48th birthday:

FSH 7.9 UI/L (ref follicular phase 3.0-8.1; menopause 27-133)

LH 5.0 UI/L (ref follicular phase 1.8-11.8; menopause 5.2-62)

oestradiol 17 pg/mL (ref follicular phase 21-251; menopause <28)

total testosterone 0.32 ng/mL (ref 0.10-0.70)

Progesterone was not measured.

Any input would be welcome.

One problem with the so called Hertoghe doctors is that they are so busy that they never have time to do anything except see you once a year and renew your prescriptions...it's not the kind of doctors you can call or email any time to ask them questions about your treatment or discuss alternative treatment methods. They simply don't have the time (I am not saying there are no exceptions to that rule, but that is my personal experience).

I realise it's all about money (one single visit lasting 60-90 minutes costs ca 200€ which I think is +/- 170 GBP), and labs cost several hundreds of €. Not all tests are covered by health insurance either. So, you could easily end up spending 1000€ or more during a single year if you take into account doctors' fees, labs, and drugs...NDT is terribly expensive and not reimbursed in Belgium as it's not a registered drug. Nowadays, I simply order it from Thailand at a fraction of that cost, because I refuse to pay that much for something that is not working optimally (and neither Armour nor Erfa is, IMO).

I know what you mean, I appreciate your concern, and agree with you 100%.

I think one problem with doctors if, like me, you feel best on NDT and that will inevitably suppress my TSH, is that they freak out at the sight of a TSH <0...most doctors I've consulted over the years have tested my TSH only, only one wanted to test FT4 levels as well, and no doctor that I have consulted except the Hertoghe doctor has cared about my FT3 levels. All I've been told over the years is: "If your TSH is normal, than that means the rest is fine as well, so ordering more labs would be a waste of time and money".

I wish I could feel optimal on T4 only, with a low-normal TSH. That would hardly cost me anything, my GP would be happy, and I would not have to spend a lot of time and money on hormone doctors and labs and drugs that are only available in a few pharmacies in Belgium...

I know several people who consult Hertoghe doctors in Belgium, and these doctors all seem to have one thing in common: once they have diagnosed you, they consider the treatment to be life-long. Most articles I've read about adrenal fatigue state you should be on adrenal support for anything from a couple of weeks to a few months, but I have never seen anyone else recommend you stay on HC or Medrol for the rest of your life.

HGH is said to be "the fountain of youth"...Dr. H himself uses it and has for years, and I am sure some of the other doctors working according to his methods do as well. I know of several patients of theirs who have used it in the past but had to give it up because of the cost.

Sorry if I didn't express myself clearly earlier; it's not my GP who has been renewing my prescriptions, but my so called hormone doctor. My GP does not even know I am taking all those hormones...

Also, you have to remember that Dr. Hertoghe is originally an anti-ageing medicine doctor. Many hypothyroid patients make appointments with Hertoghe doctors (I don't believe Dr. H himself is actually working as a doctor anymore, but devotes his time to writing books and lecturing) because they need NDT, and the only way to get NDT in Belgium is to see a Hertoghe doctor...patients come to Belgium from all over Europe because it's one of the few countries where NDT can be legally prescribed (and that is thanks to four generations of Hertoghe doctors, so I don't want to appear overly critical either).

But, if you read his book "The hormone solution", you will realise that it focuses mainly on how to remain young by maintaining the hormone levels you enjoyed in your early to mid-20s.

Which is a bit funny, because H himself, his sister (who used to work in his practice, but now has her own practice) and several of other H doctors are hypothyroid themselves, take NDT, and other hormones such as cortisol. So sometimes, it's hard to understand the focus on anti-ageing medicine...to be honest, the latter does not interest me at all. I want my thyroid hormone levels in range along with other essential hormones such as cortisol, progesterone and estrogen, but that is in order to enjoy a good quality of life, not to look younger.

jacrjacr profile image
jacrjacr

there is something called MACA...it is a root from peru, it claims to balance hormones without artificially raising them and their is a lot of evidence behind it if you start googling...I was taking it before a dr put me also on bhrt hormones years ago and it does work and sort of wished I had stayed that route. I am now in menopause to the point they have to give me more estradiol so I know where you are coming from. I have been looking into maca again recently for the same reasons. If it s gelatized it is better on the digestion and you can buy it in capsule or powder form and is very tempting to try. If I were in your shoes going off estrogen , I think I would try it bec it is also great for bones and it considered a food grade supplement but must be processed correctly as far as dried and cured in a way that doesn't destroy the properties. Just a idea for you to investigate. Many manufactures so do your research. Also you can buy it in capsule form 4:1 extract concentrate from NOW vitamins but you have to take a lot of capsules so powder may be easier.

in reply to jacrjacr

Thanks, really interesting! I'll look into it.

in reply to jacrjacr

PS. I found this very interesting article on Maca and it seems quite extraordinary:

hormonesbalance.com/article...

I will most definitely give it a try.

jacrjacr profile image
jacrjacr in reply to

awesome article...thanks

samaja profile image
samaja

It may not be very helpful but I know a lady who is over 80 and stayed on HRT ever since her 40s when menopause made her life hell. Any attempts to stop hormones resulted in return to this hell for her so she just continued and is no worse for it (and does not look her age at all). Her daughter is now following suit.

I suspect that the issue of supplementing/replacing sex hormones may be just as individualised as it is with thyroid and whatever medication you might be on or not or with diets and foods which suit your body, in other words - no 'one size fits all' solution.

Also I believe that most of the data about going off estrogen after 5 years and most of the literature on sex hormones and HRT refers to the synthetic versions as these were the ones studied and researched by medical/pharmaceutical companies rather than the bioidentical ones.

There are a number of 'hormonal' groups on Facebook. Have you tried sounding them out too?

Hope you discover your solution soon!

in reply to samaja

No, I have not visited any other forums yet.

Your post is very helpful as it's like many pieces of puzzle that need to fit together...I see every new post as another part of that puzzle.

I just stumbled upon this article by an MD whom I like very much, Dr. Lam:

drlam.com/blog/consideratio...

He seems to think not even bioidentical hormones are 100% safe, although the Hertoghe doctors claim they are as the body cannot distinguish them from the hormones it produces itself...

The hormone replacement I personally have the strongest objections to is human growth hormone injections...to me, HGH is something you administer to children who would otherwise not develop normally; not to healthy, middle-aged adults who are afraid of gaining weight or looking their actual age. That's where I draw the line. It's interesting to read what Dr. Lam says about HGH.

Anyway, it was really interesting hearing about this lady who has been for HRT for about 40 years without any ill effects...! It just goes to show, once again, that we are all different, and there is no "one size fits all" when HRT is concerned...

Thanks again,

Anna

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