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[RebJT]

I know that everyone is different, and I am in no way advocating long term use of unopposed oestrogen, but based on my experience I would suggest priority order:

1. Sorting out the iron levels and getting you back to an even keel
2. Going back on oestrogen only to help you recover the feel good factors you were experiencing
3. Potentially consulting with a functional doctor - I am seeing someone late Feb, and happy to share experience. Interestingly she deals a lot with recovering cancer patients (although not an issue for me). They will identify anything else going on in the background eg with magnesium etc, and could also be helpful with the iron issue and any lingering thyroid stuff
4. Consulting with a hormone specialist - possibly the Studd clinic. They aren’t as touchy freely as Newson health GP,s but they know their stuff with the problematic cases, and they work a lot with progesterone intolerance.
5. I am happy to share my experience with the hormone clinic that prescribe compounded progesterone after my consult

Hi there

Thanks for this, I'm feeling better iron wise with each day that passes and for adding a big dose of folate, fortunately, just trying to get latest test results out of GP, and will test again this month, but the issue I have is NHS wait for you to get anaemic before they'll help, and i get catastrophic symptoms as soon as I dip into deficiency, however if this means I pay for private iron infusions, so be it.  From looking back at 10 years of iron and FBC blood results, I've been iron deficient for over a decade!  I've been round the houses with haemotology three times, and they all say 'but you are not anaemic' when in fact anaemia is just ONE of the consequences of iron deficiency (iron deficiency being the actual disease).  Honestly, the care in primary care is really worse than crap!

Secondly, I started under Studd, but unfortunately my histamine went beserk on just estrogel.  I see Dr Tina Peers (she's lovely, she's in Nick Panay's clinic) and she has me on antihistamines, which really help and then we started back on HRT.  I did the unopposed estrogen thing, but then needed to address prog which is when all the wheels fell off, however I think low iron had more to do with this than the prog (low iron and high histamine go hand in hand) as I'm having a massive improvement in my histamine symptoms now my iron is up.  Trick now is to keep iron up by stopping the blood loss.  In even better news I've just tolerated 5 doses in a row of 100mg utrogestan vaginally for the first time ever, so I'm hopeful that I might be able to find a prog regime that suits me, I don't think the usual 12 days is going to be for me but seeing if I can push it to 7 and perhaps beyond, and then see how I feel.

I am already under a functional doctor (two actually as my endo is also a func med) so already on the case with anything in the background.  However they don't really understand iron in my experience, if you're in range (the ref ranges for female iron are barbaric) then they don't think to question it, so I've wasted a lot of time and money going around in circles as they rule out the iron.  I now know better!

Compounded prog sounds really interesting and I'd love to hear how you get on.  Meanwhile, I've got a script for Qlaira (I need a contraceptive as well) which I think I'm going to trial whilst making up my mind about jaydess (coils not currently an NHS priority cos of Covid so I have a bit of time whilst waiting for a possible apt), I can't find a positive account anywhere on the net for jaydess but can find lots for Qlaira, although accept it's oral so there might be more systemic side effects but understand it's a new generation progestin which is meant to have less side effects.  I've looked at Newsom health as well, she looks good, and might well go back to Studd but he rang me at home when I first started on his regime and was entirely dismissive of my side effects, so not sure. 

In other news managed to get a next day endometrial (transvaginal) scan on Friday - really lovely nurse and only £90 - my endometrium is a cat's whisker over 10mm at day 17 since last bleed (I've had three irregular cycles so not actually sure where I am in terms of cycle proper).  She said this is not dangerous but would suggest I'm just about to get a period and these short cycles are typically a lack of progesterone.  I have no cysts, polyps or anything else dubious, which is a relief.

I think if I could crack the prog side of things I'd be off to the races, but looking like what I need to do is suppress my own cycle (I'm new to all this, so still trying to get my head around hormones and how it all works, it's like taking a degree!!). 

Cheers

Rebecca

[RebJT]

Hi Reb JT and Julia 45,

You may have hit upon something that has been really troubling me ....

Since a big bleed I have been dizzy/tinnitus/stuffed nose. Really really unwell. I thought it must be progesterone intolerance, but maybe I am low grade iron deficient.

Usual gp blood tests said HB was “normal”. I have just phoned surgery receptionist who told me my HB A1C is 32. She couldn’t find ferritin.

Does HB A1C mean anything to either of you?

Thanks

PS what iron supplementation are you using?

Hiya

HBA1C is your blood sugar control over three months.  For iron you need to be looking at Hb, RBC, and your other FBC, your ferritin, your serum iron and your transferrin and transferrin staturation.  If they haven't tested your iron panel, they need to pronto!

You will be symptomatic (ie UNWELL) with an Hb below 130 and a ferritin under 100.  I cannot stress enough that you need to deal with the iron, you will get heavier periods, horrible PMT, really baffling and whacky symptoms that mean you cannot see the wood for the trees if you don't, it's a horrible washing machine to be stuck in, do NOT wait for a doctor to get you out!  You also need enough iron and folate for progesterone production.  It really boils my blood how badly this is dealt with in primary care and women's health!

These are essential reading:

https://www.oatext.com/iron-deficiency-without-anemia-common-important-neglected.php#gsc.tab=0

https://theironclinic.com/ironc/wp/wp-content/uploads/2017/07/Patient-information-for-iron-infusion.pdf

Iron dose is calculated by bodyweight, but most people who are iron deficient take 200mg of ELEMENTAL iron a day, Haem iron is better asborbed than non haem iron, but harder on the stomach.  Polysaccharide iron or bigylcinate is often better tolerated but needs to be taken with vit C.

Again, to stress, just because your iron falls within the reference ranges (the 'norm' does NOT mean normal!  Many many women are iron deficient, which is why the ref ranges are worse than useless) does not mean you do not have a problem with iron.  Really crucial to sort it out as the symptoms of iron deficiency and the havoc it wreaks on the body are life wrecking.  Even anxiety, depression, mood swings are iron symptoms.  I had a long chat with my gynae about this as she was really interested in my experiences, as so many women wash up in gynae consulting rooms complaining of symptoms that are put down to psych or hormones, when in fact a good dose of iron would make them go away.

I'm a cynic as I've been in the hands of the NHS for over a decade what with thyroid issues as well, and I now no longer have any faith in 'trust me I'm a doctor' - absolutely everything with my health and my body, I have my hands firmly on the steering wheel of my own care, this means I make it my mission to understand things so I know what questions to ask.  A bit scary at times, but I've learned the hard way!

Hope that helps,

Rebecca
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[Julia45]

Thanks so much for this, Rebecca - it's really helpful. I have contacted The Iron Clinic and they confirmed that I need my ferritin raised. I am taking Ferrous Fumarate 1 tab a day (which I don't think is enough). I've been taking them for 6 days so far so need to give this dose I chance I suppose. My tummy is okay. I'm constantly dizzy (which freaks me out) and have been more dizzy than not since last June (when my Ferritin was 40 and not picked up!). I am also having the waves of insane tiredness 9which I think make me dizzier. I feel like I am constantly drunk. Mild head pressure too.

This could have been avoided if they had treated my iron deficiency last June when I started to feel weird. How long do tablets usually take to make you feel a little better? My hands and feet are freezing also.

I was having 5 days or so of tiredness over the last 6 months along with dizziness in blocks of about two weeks. This month (during and after period) my dizziness and tiredness are constant. My ferritin is now 32 (up from 20 in Dec).

Julia

[RebJT]

Hiya

Your GP must have tested your blood count, can you get a copy of that?  A ferritin of 30 is an ABSOLUTE iron deficiency, this is very serious and needs sorting out.  On the iron you have, what is the ELEMENTAL iron content of it, I think it's about 65mg?  In which case you need three a day, I'd take it spaced out through the day (don't take at night as hepcidin levels rise at night to block absorption) unless you take other meds which it will compete with or that will antagonise absorption.  It'll take about 9 months to a year with oral supplements (we absorb about 4% of oral iron, and that is conditional on our periods not being so heavy that we're constantly in a deficit of falling levels, hard to achieve as iron deficiency makes periods heavier so we go down the plughole really quickly, it's a losing battle).

If you can get your Hb, RBC, HCT, MCV results etc, post them here and we can figure it out.  Did they also test your folate (folic acid)?  I feel so much better for adding folate to my regime post infusion as well.

Infusion is the quickest way to fix your iron, particularly if you are feeling dizzy, but the NHS won't refer on your levels I wouldn't think.  That's why I went private.  Honestly, I'd read all you can about this and get genned up and take matters into your own hands, it's truly dreadful when our iron is low, doctors have no idea. 

You could also try doing a mix of irons, so take your haem iron (fumerate) and add some other iron to it that's non-haem, they help the absorption of each other.  Don't drink coffee or have any calcium near your iron, leave a good hour's gap either side.

Honestly, I'm treating iron deficiency like it's a job, I am never, ever allowing it to happen to me again as I don't think I've ever felt so ill.  So if that means private tests and private infusions, so be it.  I need to get back to work asap!

Keep posting, get those results if you can.  Your Hb and RBC in particular would be illuminating, I bet you are not just deficient but properly anaemic (in which case shame on your doctor!).

Rebecca
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[violetbat]

This is very interesting. Very interesting indeed.
I gave blood again couple of weeks ago, usually I feel fine, but a day after I was as weak as a kitten, dizzy, no energy, short of breath, legs like lead etc etc. I am still not recovered I have started taking 400mg fumerate. Since I am a regular donor- I love to donate- I guess I should be taking iron all the time.
I had foolishly assumed that the blood drop test they do at the donation centres meant all my iron levels were ok.
 I am in peri and although on the ostrogel/utro combo still have a period every three weeks- just as I did pre hrt. I am guessing I am actually iron deficient.
Can you recommend a good combo for me to take? Will the fumerate be enough?

[RebJT]

Hello there

If you are iron deficient, which it sounds like you are, you should not be giving blood (sorry!).  I'd ask your doctor for copies of your results, and post here if you want to, but the paper I posted up thread 'iron deficiency without anaemia' is vital reading.  If you are iron deficient, and bleeding too much due to peri then it's a devil of a job to get iron up with oral supplements.  Key is the ELEMENTAL iron in your preparation, you need about 200mg of elemental iron a day (so not the total mg, the total elemental iron).  You need to do all you can to preserve your iron, that might mean asking for some tranexamic acid for your periods, and speaking to your gynae about your short cycles (having the same problem, it's lack of progesterone).  It also might mean looking at your gut absorption and taking digestive enzymes and probiotics to help your gut work better.  My iron clinic doc told me to stop my periods altogether, because I'm autoimmune as well, he said I'd be aborbing virtually no iron through my gut.  Honestly, it answers so many questions for me, and it's been going on for years.  And yes, don't rely on blood donor clinic to know the difference between 'the norm' (most women are iron deficient) and 'normal' (Hb over 130 and ferritin consistently over 100 in cycling women) when it comes to iron ranges.

Hope that helps,

Reb
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[violetbat]

Thanks RebJT, very helpful. Thank you for sharing your knowledge and experiences. I shall take 3 tabs of the fumerate as that will give me roughly 200mg of elemental iron. I can't afford a gynaecologist and blood tests here are all but cancelled because of covid- unless considered an emergency- which this is not. so I'll have to try and sort this as best I can in the interim.  I do have some tranexamic acid tabs but am confused as I thought my womb lining was supposed to be coming away. Doesn't taking them prevent this and cause build up long term?

[Julia45]

Thanks Rebecca,

My life has been on hold for the months I have been dizzy and tired (the tiredness has gradually built up from 4 or 5 days a month (a week after period) to 3 weeks! I may very well have had Labyrinthitus in June (ferritin 40 then) however I know I had two bleeds (period) during April. Maybe the Labyrinthitus was infact low Ferritin?

What I don't understand is how I felt okay-ish on some days in Dec and beginning of Jan but have felt awful for the last 3 weeks.

My ferritin was 20 in Dec and now it's around 32.

How do I post results? It won't let me post a pic? All my other bloods were fine - The Iron Clinic confirmed this. However, the bloods are from beginning of Dec so I might well have dropped in other areas also. I only had ferritin and thyroid tested this month - thyroid fine and ferritin (as I said) 32.

Full blood again in 2 weeks. 

[Julia45]

....just to add - my meno specialist has put me on 200mg a day of progesterone to take every day of the month to see if it will stop or lessen my period (I'm on HRT). Because I'm peri, I only usually take it for 12 days - and then have a bleed (which is the problem!).

[RebJT]

Hey

I'm no expert, but maybe the 200mg prog is making you extra tired?  I dont' know how you are functioning though with a ferritin of 32!  What's your Hb?  And I have thyroid issues, wouldn't rely on a GP to know what 'normal' is there either!  What were your results?

Tranexamic acid, don't know, I know it cuts down the vascularity of the womb lining, I'd be stuffed without it, and in the same boat trying to work out a solution to the heavy bleeding, however your doctor should know that low iron (which you have, a ferritin of 32 is bloody brutal!!) will make your periods heavy, so you get caught in a loop of mounting horrific symptoms.  The body borrows the ferritin to keep the other numbers normal, so I'd say you are on borrowed time before you hit the deck good and proper.

Be warned that iron supplementation can make you tired also, and haem iron can be hard on the gut. 

It's really miserable, the whole thing, on my fiestier days I think we need a bloody feminist revolution about healthcare (I can say with certainty there have been no claps from me, personally think our healthcare is third world, no idea why we are so proud of it!)

Rebecca
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[Kathleen]

Hello RebJT

I admire your tenacity in trying to solve your health issues!

I had an iron infusion a few years ago and learned some things on the way which may be of interest to you.

 As you likely know excess iron can cause  problems so perhaps this is the reason that GPs are cautious about prescribing supplements/infusions etc.

After the infusion I was advised to use Spatone sachets every other day as this aids absorption.

I understand that there is a condition called Anaemia of Chronic Disease where the body takes iron out of the  circulation and stores it to prevent it feeding any pathogens etc.

I am post meno and still trying to work out if my meno symptoms are due to low oestrogen or progesterone intolerance however my blood tests last month revealed a very high Serum Ferritin of  208.1/L (10.0 - 291.0). So in my case my symptoms are not the result of low iron.



Wishing you well.

K.

[RebJT]

Hi Kathleen

Thanks!  yes it's a nightmare isn't it.  And yes was aware of chronic disease, so just about to get another set of results, if my Hb hasn't corrected, that's the path we go down next, although I'm feeling better, so suspect that's not the case.

BTW a ferritin of 200 isn't 'very high' at all, it's totally fine and you want to keep it there if you can for as long as possible, it takes 2 years for the body to reverse all the damage of iron deficiency, and for the body to stop acting like there's a shortage.  Doctors - in my bitter experience - are more clueless about iron than they are about thyroid or female hormones.  I linked a good paper up thread about iron deficiency, answers a lot of questions for me.

And yes iron overload is serious, and iron isn't an inert substance, but the problem I've found is doctors are wedded to a 'pathway' (pathways come from America, insurance codes) and they are agreed by consensus, not always by evidence - it's the same with thyroid - so a lot of medicine is simply 'computer says no'.  NHS pathway is they don't treat until you've hit frank anaemia, which is barbaric in my opinion (it's also terribly sexist as due to menstruation it's almost entirely women who are suffering the catastrophic consequences of low iron!).

Spatone, yes I have used that, but as it's only 5mg it's a tiny dose, iron clinic are telling me to take 50mg to 200mg elemental iron every other day, trying to find a decent haem iron as that's absorbed better, but standard stuff in the UK wrecks my gut, and as I take thyroid meds as well, I need something that won't interfere with thyroid absorption.  Bit of a nightmare.

I can't seem to crack progesterone, I had hoped whacky iron symptoms explained most of my issues, but I've just done 6 days of utrogestan vaginally and now feel like I've been plugged into the mains, horribly jittery, it seems to convert to cortisol for me (well I'm guessing that's what's going on - progesterone and cortisol are on the same pathway in the body) but without forking out for more ridiculously expensive tests, I'm guessing.

Cheers

Reb
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[Kathleen]

Hello again RebJT.

Thank you for your very interesting reply.

I assumed that my Ferritin was very high because it was near the top of the range but as you say in reality it is just
Okay.

I can certainly relate to the jitters and that has been my most distressing symptom of the menopause. I will need to check my diaries to see if my infusion affected  them at the time and if I find anything interesting I will update you.

I have also found that I can be horrendously jittery for hours but then suddenly the sensations stop and I feel much better. From this I assumed they were solely driven by hormonal changes but your iron depletion experience points to another possible cause.

Good luck with your research and please let us know how you get on.

Wishing you well.

K.

[lindseywalsh]

RebJT,

Hi there.
Re your progesterone ......

1. Yes, i will def update you re compounded progesterone and the dosage.

2. Looks like you are aiming for the 7 x 100mg vaginal utrogestan regime? How long since you took you day 6 capsule? are you feeling any better ?
I have read that for many women the reason the mirena works is because its keeping the prog at a consistent level. Problem is, for some women the dose (approx 50mg) is still too much.

Reading the scientific papers by Nick Panay, 10 days of 100mg utrogestan per month is safe for the endometrium. In my simplistic brain, that equates to 1000mg per month. I am wondering if a continuous regime of around 30mg per day is an option for progesterone intolerance.

A lady on this site uses cyclogest (an option that Newson have offered me). These are 200mg wax pessaries. she cuts them into quarters ie 25mg per day.
Over a month this would provide only around 750mg per month, bu that equates to John Studd's 7 x 100mg regime (but regular ultrasounds required).

I am wondering if i could manage a continuous regime of a v low dose progesterone .... hoping that this is an option that compounding pharmacy specialists might offer me ....

I will let you know what i discover - my appt is on 18th Feb.

Re the iron. My HgB is 133..GP wont test for ferritin or B12. Do you know where i might get this done privately?

[RebJT]

Hi Lindsey

Thanks, I'd love to hear how you get on.  I'm waiting to hear back from my gynae re my scan results as my endometrium is at 10.5mm day 17 with no HRT, so I'm guessing I have too much estrogen spiking or something or significantly depleted progesterone.  I've asked if there's any merit in testing my hormones as we are just guessing currently at what's going on.  I have needling, crampy, horrible pain and have done for over a week, and I have a distended abdomen, my body is very unhappy about something!

Re my current regime, my gynae said I could use 100mg vaginally alternate nights over 14 days (ie 7 doses over a fortnight) but my cramping and bloating and pain was just so bad, and my irregular bleeds have been so heavy, I was trying to delay my period starting.  I managed another dose last night after having a night off (so now done 7 doses, 6 in a row, skipped a day, now 7) but I feel properly ramped up and jittery today again, and it feels like (I'm guessing) high cortisol because my histamine symptoms (rash etc) is negligible.  So I have tremors in my hands, my voice sounds shaky, high BP, high pulse, and I feel headachey and not rested despite sleeping, like I'm not ease or rest inside my own body.  It's such a nightmare.  Today is day 22 since last bleed.

I am also wondering re low dose IUD, jaydess, and whether it's the ups and downs of progesterone which is part of my issues, jaydess is 13mg per day, dropping to ten after 60 days but I've read so many horror stories about it, I'm really nervous (would solve my contraception issue, and hopefully heavy bleeding issue) but I think if you also counterbalance with estrogel you can minimise the side effects.  I'm just so nervous of the crap NHS refusing to help me if it goes wrong, and also worried that this jittery, over revved feeling would be permanant, I just feel horribly stressed on the inside, hard to explain.

I've also been reading Louise Newsom's info, she looks very good, not sure she's on top of the histamine stuff also, which my gynae is.  But cyclogest does sound interesting because you can microdose it if necessary.

All I know is today I feel terrible, really jittery, ramped up, like an irritable, 'going too fast', stressed, taut as a piano wire feeling my body, extremely annoying, but I dont' feel depressed or anything.  Is this progesterone intolerance, estrogen overload, something else? And why is women's healthcare so bloody crap??? You'd have thought someone somewhere would have some bloomin' answers to all this by now, seeing as we are half of the world's sodding population!!  Rant over!

Good luck with your appointment, please do let me know, I'd love to hear.  Iron tests, I use Blue Horizon Medicals (privatebloodtests.co.uk) and you book a bundle (I use their 'comprehensive V' bundle I think) and then you book the blood draw at your local Spire or Nuffield hospital.  YOu can also get a kit and pay your local NHS for a blood draw I think.  They are pretty efficient, I've used them for years.

Rebecca
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