Seen hormone specialist, more confused than ever...!

So I've been for my long overdue annual visit to my hormone doctor in Belgium and I have to admit I received quite a lot of confusing and even contradictory advice that I would love for members to comment on:

First of all, when it comes to my massive weight gain (+25 kg) since being treated with high doses of steroids last autumn, the doctor said that although my fasting blood glucose levels were out of range for the first time (110 mg/dL; ref 70-105), that was all caused by the steroids and the most important thing is that my fasting insulin looks good which it does (according to doctor). However, I am not so sure; my fasting insulin came back at 18.0 uU/mL (ref 2.6-24.9), but I have read that it should ideally be <5. However, the doctor claimed it looked "just fine", so no need to do anything about that ATM...

She does not test cortisol since she has put me on Medrol (4-6 mg daily) for adrenal fatigue but, based on my DHEA-S (107 ug/dL; ref 56-283) she concluded that the steroids have suppressed my adrenals to the point of making me need to take up to 8 mg of Medrol (the equivalent of 40 mg of HC or 10 mg of prednisolone) daily for three months. After that, I should try to stop Medrol and see how I feel. If I feel worse, I should go back on it, only take 6 mg next time, take it for another three months, then stop and see how I feel...she said it can be preferable to take HC or Medrol or pred cyclically rather than continually. This is the first time I have ever heard anyone say that and it sounds strange to me because, as far as I know, you either take adrenal support (be it glandulars or prescription meds) for a limited period of time and then try to wean off them to see if your own adrenal glands can pick up where they left off, or you take them continually. But I've never heard of anyone using adrenal support cyclically, especially prescription drugs such as Medrol (or pred or HC). I'd love input on this!

Also, concerning sex hormones: when I had labs done last month, it was after taking Oestrogel two pumps daily and 100 mg of Utrogestan daily for 25 days a month. Both levels came back very low (oestradiol 37 pg/mL; ref 21-312) and progesterone 1.0 ng/mL (ref 1.2-15.9). I have not had a regular cycle since January '19 so was told I could go to the lab any day (rather than day 21 of cycle). The doctor said this means the steroids have suppressed my adrenal glands (but don't these hormones come primarily from the ovaries?) and I therefore need to take more, even more than the recommended maximum dosage: now, I should use three pumps of Oestrogel every day, along with 100 mg of Utrogestan. I asked if maybe the bio-identical hormones are too weak for me and it would be a good idea to try oral estrogen and progestin (my OB-Gyn has given me a script for Elleste Duet 2mg), but the hormone doctor claimed you should never use oral estrogen as it builds up in the liver, and progestins are not natural progesteron so won't be recognised by your body...

I admit to being pretty confused right now, especially since I have followed this doctor's advice in the past and now end up with labs indicative of several deficiencies.

Any ideas, thoughts???

[FancyPants54]

Hi

My only experience (from your list) lies with sex hormones. Utrogestan is better than a progestin, but it isn't suitable for everyone. However, if you are not suffering from taking it you could increase your dose. However, you don't need more progesterone at the moment. You need more oestrogen. That level is very low.

Don't get hung up on the 2 pumps being the recommended dose. It depends how well you absorb the gel, and you aren't absorbing it very well. Menopause specialists in the UK are more than happy for us to use 4 or even 6 pumps of gel a day, depending on our blood levels. Try increasing the dose and are you rubbing the gel in until it's dry? The leaflet says to spread the gel and let it dry naturally. The experts are now pretty much all saying rub it in until it's pretty much dry. Also, try different areas of your body. Inner thighs can be good, but that wasn't working for me. You can use your whole arm and shoulder, your hips, lower legs, anywhere other than your breasts. You will know if you start to absorb it better because you will probably get sore breasts, but keep going if that happens, it will wear off again.

Pills are not recommended for obese and overweight women. They carry a higher risk of stroke and clot because they pass through the liver. That might be where you have heard liver mentioned. It's not that it builds up, but that it carries more risk for some.

I did well on gel for nearly a year and then I stopped absorbing it very well. Now I'm using a patch and finding it more even. I like it, so far.

I hope that helps.

[Hidden in reply to FancyPants54]

Yes, that's VERY helpful, thank you!!!

It's true that I don't seem to be absorbing the Oestrogel very well. I did try patches at one point (Evorel, self-sourced), but they kept falling off. Maybe there are some patches that stick to the skin better than others (any tips would be most welcome), but I guess I can also try to make them stick using a bandaid or something...I think it would be worth trying, or I would have to go up to 4 or even 6 pumps a day as you say because my estrogen levels are very low, and it's obvious 2 pumps a day aren't enough for my needs.

I often go swimming, which may explain why it's difficult to make patches stick to my skin.

I usually just apply Oestrogel to the skin and then leave it on for five minutes to dry before I get dressed. Maybe rubbing it in until it dries would work better.

I am not too keen on taking oral estrogen and progestins anyway, I just need to find a way to make bio-identical HRT work better. It also seems oral estrogen tends to make you gain weight more easily, and that is the last thing I need...!

My OB-Gyn said my latest ultrasound (from two weeks ago) shows there is still endometrium to be shed, and if I don't get another period within the next two months she'll put me on Primolut-Nor.

The ovarian cysts discovered a year or so ago don't bother me at all and I am currently not on any treatment for it. The hormone doctor suggested I try Lugol (iodine) and said that Dr. Hertoghe has recently written an article about Lugol and the treatment of ovarian cysts and fibrotic breasts...I have had a bad reaction to iodine in supplements in the past so will have to look into that first.

Thanks again for your input and suggestions!

[uchi in reply to Hidden]

Hi. There is a wonderful private doctor in Belgium. He may be able to help you since he is conventional but with holistic, orthomolecular approach. His name is Dr Rudy Proesmans. The only problem is he is very popular so difficult to get an appointment. Take care

[Hidden in reply to uchi]

Thanks! It's always good to know there are alternatives.

TBH, I am starting to wonder if I'm seeing the right doctor for me...it seems she's also very popular as she has a waiting list of 18 months for existing patients and is unable to take on new patients, but not every doctor is right for every person...

[uchi in reply to Hidden]

Well, I come from abroad to see him. I have Hashimoto's and he has been wonderful.

If you are unwell, give him a try. nothing to lose only to gain

[Hidden in reply to uchi]

Except weight hopefully

[FancyPants54 in reply to Hidden]

Try rubbing in the gel first. Also try moving it around the body and definitely try 3 pumps a day. But if you do go onto patches, this is the stuff I'm using to ensure they stick, and it's great. I would not be without it.

amazon.co.uk/gp/product/B07...

[Hidden in reply to FancyPants54]

Thanks a lot, that's great to know!

Some say they get better results from patches as they seem to deliver a more steady dose of estradiol than gels...if I don't get better results from three or even four pumps a day, I'll consider patches and using the product you linked to.

[Hidden in reply to FancyPants54]

Also, thanks for pointing out that you can actually have too much progesterone relative to estrogen...we often read about estrogen dominance and the importance of having enough progesterone, but not so often about estrogen being suppressed by progesterone as well...which seems is exactly what can happen.

[Fruitandnutcase]

Don’t know much about Most of your question and results but I do know that when I was given a high dose of steroids for inflammatory arthritis I developed steroid induced T2 diabetes.

I was given three months to work on my diet before I was put on the diabetic register.

By a stroke of good luck I found a book called Reverse your T2 Diabetes by Dr David Cavan. I bought the book then I bought a blood sugar meter and did exactly what he said. I lowered my blood sugar and lost several stones in weight because my body was no longer converting excess carbs into sugar. So your doctor is correct in saying that the steroids are to blame for your high blood sugar but you don’t need to stay like that.

A couple of years later I was given a low dose of steroids for something - can’t remember what but I told GP I wasn’t keen to take them as I was worried that it would increase my blood sugar again. I was told not to worry that it was such a low dose and such a short course that it wouldn’t. By that time I had my own blood sugar monitor and sure enough it did increase my blood sugar levels!

[Hidden in reply to Fruitandnutcase]

Ok, that's good to know!

I will look up the book you mentioned! I really feel I need some inspiration for sustainable change as I guess that once you end up in the pre-diabetic range, you always risk ending up there again unless you work on your diet.

I really don't want to end up on diabetes medication for the rest of my life. Traditional doctors are very keen on putting you on drugs and keeping you on them.

I guess that the fact that I was already metabolically messed up when put on high doses of steroids did not help...!

[Fruitandnutcase in reply to Hidden]

Exactly. I was lucky that I was taking part in a pre diabetes study and when I went for my first annual check up it was picked up. Sadly I was thrown off the study but it meant I was able to act really quickly.

Like you say there’s not much room for movement when you are ore diabetic.

Like you I definitely didn’t want to end up taking diabetes drugs for the rest of my life if I could alter things by diet and exercise.

I made a little chart, recorded everything I ate along with my pre meal and post meal blood tests and very quickly I could see exactly what spiked my blood sugar. It was things that I would never have imagined but which are obvious - a nice healthy jacket potato and salad, parsnip soup, nice healthy wholemeal bread, in fact I discovered gra8 of any sort is lethal for me, yet among it all I discovered that a piece of pavlova with cream and berries had no real effect! Bizarre but wonderful really. I also used the DietDoctor.com website - huge amount of good information on there - like eat vegetables that grow above ground rather than below - below ground veg store sugars. Obvious to me know but it wasn’t back then.

I hadn’t thought about the steroids affecting me because I was metabolically messed up already - I’ve got Graves’ disease and a load of other autoimmune conditions - but that would explain how I know people on much larger diesel of steroids and who have taken them for years who have no blood sugar problems. I’ve always wondered why that was.

[Hidden in reply to Fruitandnutcase]

Yes, all of what you say makes a lot of sense...I guess measuring my pre-and post meal blood glucose levels at home would be the best way to know what affects my blood sugar levels. Like you say, things you believed were healthy can really mess you up...!

I think a metabolically healthy person could probably have taken high doses of steroids for six weeks like I did, and then recovered pretty quickly. I didn't. My cortisol levels are obviously suppressed, as are my DHEA-s levels (only 50% of what they were last year so doctor prescribed 20 mg daily). So it's obvious to me that having thyroid disease to begin with, along with adrenal fatigue, will mess you up more than if you were metabolically healthy when taking high doses of steroids.

I ordered the book you recommended, and have registered on Dietdoctor as well to take part in discussion forums. I imagine there are many people like me struggling with weight and blood sugar issues without much support from doctors except a prescription for metformin or other anti-diabetic drugs...!

After I weaned off the steroids, a year ago, I put on 15 kilograms in two months. My GP claims that is impossible, and that weight gain and inability to lose weight are always caused by overeating and not enough exercise. Unfortunately, she's not alone.

I want any drug I take to be a temporary thing to help me get back on track, not something I need to take for life.

[Fruitandnutcase in reply to Hidden]

My GP claims that is impossible, and that weight gain and inability to lose weight are always caused by overeating and not enough exercise. Unfortunately, she's not alone.

That attitude is so annoying isn’t it - there you are, week after week being ‘good’ , not overeating and keeping moving and not a drop of weight falls off. I used to find the same, I went to weight watchers on and off for years. One of my sons used to say he could never understand why I and loads of others paid £5 a week for ritual humiliation. Then when I developed Graves and weight just fell off I got suspicious looks from the leader too.

I blame my thyroid which has obviously been dodgy for years but I had also realised by then that if I cut out potatoes and bread and cakes - carby things - I lost weight, now I realise why.

That book is good, it was like a bible to me. I got his recipe book too but I much prefer the recipe book that was written by Michael Moseley’s wife - it had more of the sort of food I like to eat than the David Cavan book. Good luck with it all.

[Hidden in reply to Fruitandnutcase]

Yes, I know what you mean about WW...I joined them a few months before being diagnosed with Hashimoto's, and I was the only one who did not lose a single pound on their programme. They all assumed I was cheating, eating too large portions, and not exercising enough...nobody ever mentioned the possibility of thyroid disease. It was discovered by coincidence after I was desperate enough to see a doctor to ask for a prescription for Reductil (sibutramine)...I was told I'd need to have my thyroid checked as the drug would not work as well if I had thyroid disease, and that's how I was diagnosed.

After that, I have become allergic to WW...plus, I've developed severe "scalophobia"...every time a doctor tells me to step on the scales I can feel my heart rate and blood pressure rise...! To me, it's terribly humiliating. I know how much harder I have to fight to lose weight compared to metabolically healthy persons, and nobody can tell me I don't know what to eat or the importance of exercise. Yet, it's not as simple as that. And the fact that you should be humiliated on top of everything makes it almost intolerable...! When doctors try to explain to me how to lose weight, it sounds like they think I'm retarded...

[Fruitandnutcase in reply to Hidden]

Lol can picture the scene and I know exactly where you are coming from. Not losing weight is so soul destroying never mind knowing they all think you’re not trying - or even worse cheating.

I went to the rheumatologist on Thursday and I was weighed. I had forgotten they did that, at least I got to take off my shoes but I wished I’d gone to the loo first.

My BP is always so high my GP lets me take readings at home then drop them off at the surgery. Scalophobia - there’s a lot of us about.

[Hidden in reply to Fruitandnutcase]

Sounds like a good GP to let you do your own BP readings at home...mine always tells me to try to relax...which always has the opposite effect on me. I never manage to get normal readings in the doctor's office...plus the stress increases my heart rate and they immediately try to link it to my suppressed TSH to claim I'm hyperthyroid...what a vicious circle...I don't think I'll ever be able to walk into a doctor's office without panicking at the very idea of having to be weighed...

[LuluCops]

I can comment on the steroid and adrenal questions you pose, I just want to point out I’m not medically trained just an experienced patient.

I’ve never heard of using steroids of any kind for adrenal support ‘cyclically’. I would’ve thought that if your adrenals have been suppressed and you have to take steroid to support them, then stopping them for any length of time could make you seriously ill! Also the dose se has give you equates to an extremely high dose of HC! I’m taking 25-30mg and my endo says that mine is high (I am overweight) but I am dealing with a lot of extreme stress and pain right now, and my body is struggling to cope with it. I have Addison’s disease.

If I were you, I’d get your GP or endo to test your morning cortisol levels. If your endo does believe that you have any issues with your adrenals, try and get them to run a short synacthen test, this test measures your base levels of cortisol, then they inject you with a synthetic form of ACTH (pituitary hormone that tells the adrenals to produce cortisol) they then measure your blood again after 30 minutes and occasionally again at 60 minutes although not all endos do this one. When you do this test they will tell you to miss your morning dose of steroids and take them as soon as the test has finished.

This test will give a proper picture of how your adrenals are doing and whether you do need the HC and have adrenal insufficiency, there isn’t actually any such thing as ‘adrenal fatigue’ I believe I was told that, that’s a term coined in America.

Any other questions please don’t hesitate to ask.

Shelley x

[Hidden]

Thanks for your input and suggestions!

I know adrenal fatigue is not a diagnosis recognized by most conventional doctors, but I have come to believe it exists and is much like subclinical hypothyroidism; that is, something that can cause symptoms but that doctors won't recognize so won't treat.

My problem is that my doctor now claims that taking high doses of steroids for a short period of time suppressed my adrenals. She does not test cortisol levels, though, so that is a mere conjecture of hers. My DHEA-s was 50% lower than last year (before I was put on steroids) which confirmed her theory that my adrenals were suppressed.

However, if they were, I'd be suffering from Addison's and would not have stayed alive without adrenal support. What has happened, on the other hand, is that NDT is suddenly working less well for me, and that is usually a sign my cortisol levels are suboptimal.

My doctor told me to take up to 8 mg of Medrol daily which is the equivalent of 40 mg of HC so considered a physiological dose. It seems doctors treating adrenal fatigue (for instance, UK physician Durrand-Peatfield, as well as the Hertoghe doctors in Belgium) consider physiological doses (up to 40 mg of HC, 10 mg of pred, or 8 mg of Medrol) to be safe and non-suppressive. Others clam that any amount of HC or pred/Medrol will inevitably suppress your own adrenal glands.

I'm not keen on the idea of taking prescription drugs for the rest of my life when my adrenal glands are not truly dysfunctional. The problem is some claim support may be life-.long, while others claim it should be used short-term only. But this was the first time I've heard about anyone using it cyclically which I imagine would only mess you up even more.

What I don't believe in is taking half a replacement dose to just support adrenals, as that is likely to shut them down instead (just like taking low doses of thyroid hormone can make you more hypo). So it's either a full replacement dose or nothing, as far as I'm concerned.

Another problem is I am not considered an adrenal patient by conventional doctors so not likely to get the tests you suggest ordered. The only doctor who has even mentioned adrenals to me is my anti aging doctor whom I originally went to in order to get NDT. I'm not followed by an endo, and only have my "adrenal fatigue" diagnosis which I know most doctors won't recognise.

What I do wonder is: even if I managed to get my anti aging doctor to order these tests for me, I am not sure they'd lead to anything if they did not show clear abnormalities? Adrenal fatigue is more about not having optimal cortisol levels, not about being out of range.

I recently ordered a diurnal saliva test from a lab that screwed up and told me my saliva samples were too old when they arrived and that I'd have to do it all over again...I've not got around to it yet.

I really appreciate your input and will keep your suggestions in mind in the future if my condition deteriorates further, though!

[Wetsuiter in reply to Hidden]

whats an anti aging Dr?

[Hidden in reply to Wetsuiter]

Anti-aging medicine is basically about restoring hormone levels to youthful levels. The idea behind this is to slow down the aging process and minimise the risk of age-related diseases such as osteoporosis and cardiovascular disease. Most anti aging doctors work with bio-identical hormones to achieve this. But each doctor has an individual approach.

In Belgium, where my doctor is, most if not all doctors have been trained by Thierry Hertoghe. Many thyroid patients see them as they prescribe NDT and bio-identical HRT so not everyone is interested in anti-aging medicine as such. In my own experience as a thyroid patient, they also tend to be less obsessed with the TSH which is a blessing for those of us who cannot become symptom-free on T4 only with a TSH in range. That was the reason I went to see one of the Hertoghe doctors in the first place, not because I was interested in reversing the aging process.

One hormone they often prescribe, at least in Belgium, which most conventional doctors won't prescribe, is human growth hormone.

[Hidden]

Well, the pharmacy called and said all suppliers of Oestrogel 0.06% are out of stock and nobody knows when it will be back in stock, so they asked if I would be OK with an alternative...they gave me Lenzetto which is an estradiol spray. I have never heard of it before and am curious to know if anyone here has used it and what you think of it?