Print

Please login or register.
1 Hour 1 Day 1 Week 1 Month Forever
Login with username, password and session length

[RebJT]

Hi All

Long time no speak.  You might remember I was here a while ago re histamine intolerance and hormones, and I'm under the care of the lovely Dr Tina Peers.  I have a very specific issue I'm hoping you can help me with, and I'll try to keep it simple (it's complicated).  I'd be grateful for some specific feedback from others experiencing this, as this is complex stuff and I'm after really quite targeted advice (in the nicest possible way, I'm so ill, please don't guess if you don't know, I don't have the brain power or emotional bandwith right now! Thanks :-) )

1. Turns out I'm long term iron deficient, ten years or more.  I'm also a thyroidectomy patient.  Low iron for patients like me causes catastrophic jittery, panic, anxiety symptoms and inability to tolerate thyroid meds.  This happened over the summer (took me a while to figure it out) and I've had to lower thyroid meds to cope.

2. Just had an emergency iron IV infusion, and by the time that was done I wasn't just iron deficient, I was frankly and catastrophically anaemic (and everything you've ever been told by a GP about 'normal' iron, is, I can guarantee you, complete horsesh*t, it's hugely and scandalously badly understood and treated in primary care).  I honestly thought I was going to die, felt utterly terrible.  I've had an immediate improvement in anxiety, panic, shaking, restless legs, and histamine, but I still can't get my thyroid dose up yet.

3. Low iron and low thyroid = heavy bleeding, and irregular periods.  My Hb and RBC are still low so can't get thyroid dose up yet, and so I'm stuck in that hellish washing machine of low iron, heavy bleeding, lower iron.  Hb and RBC will take another two weeks to a month to correct, and I'm bleeding again now on day 17, having last had a flood on day 21 of last cycle.  So ferritin and serum iron are good, but Hb and RBC still in my boots. 

4. It turns out there's a huge link with low iron and histamine symptoms, so I'm now wondering whether all along my issue hasn't been histamine per se, but wonky iron.  Also turns out H2 antihistamines I was taking (plus some natural stuff recommended for mast cells e.g quercetin) block absorption of iron, so despite diligent supplementation for ever and a day, I haven't been absorbing my iron, compounding my misery. I've ditched the famotidine and the flavonoids.  Weirdly since iron IV I've hardly got any histamine symptoms anyway.

5. I'm catastrophically low on folate also, you need folate for cycle regulation and progesterone production, so again wondering if my wonky blood and iron has been more of a contributing factor to the hideous estrogen dominance - histamine nightmare - heavy bleeding thing as well.

6. My gynae is lovely (she really really is, she in the trenches with me trying to figure this out) but I'm progesterone intolerant, so all attempts to level me off with HRT end in failure as I just can't get on with utrogestan.  However, I need to stop this bleeding, as I'll never get off this hellish merry go round. 

It seems to me (bear with me, I'm so foggy, it just helps to try and say this out loud) my priorities are:

1. Get iron corrected, more tests booked for two weeks to see if that RBC and Hb is normalised.  Keep iron up come hell or high water.  Recruit every friendly doctor I can to support me in doing this, as the NHS will just wait for me to hit the deck again, and that can never ever be allowed to happen again!
2. Get thyroid meds up to lighten periods pronto and get me feeling better
3. Stop the bleeding!!  I'm 48 and in peri, and I'm a long term graves and thyroid cancer thyroidectomy patient (I had TT ten years ago).  I've never ever truly recovered my health but can honestly say these last two months have been the worst of my life!!!

Is there some solution to the prog intolerance?  They want me to have jaydess but I'm so nervous of making things worse or adding another variable right now (particularly in a pandemic, as my worry would be getting it out). Other option is Qlaira but gynae thinks I probably won't tolerate the prog in it.  I've seen on here some ladies do OK with a compounded progesterone, private is fine, I'm happy to pay, and I literally am willing to try anything, but I really want to be careful and only want to see someone who really knows their stuff with prog intolerance as I'm just one of those people that when things go wrong, they go catastrophically wrong and I really cannot cope with any more!  I urgently need to feel better as I freelance and I'm about to lose my work, really very frightened.

I should add I feel AMAZING on estrogen, I had a fabulous few months of estrogel, and a tiny bit of prog, with the caveat I'd need to get to grips with prog properly and then all the wheels fell of with iron.  It does seem to me if I could crack the progesterone side of things, I'd be flying, i've honestly never felt as well as I did on estrogen, but I clearly can't take it (not taking anything at all right now) unless we can figure out the progesterone side of things.  The logic being the HRT would regulate my cycle and keep a lid on the estrogen spikes.  I'm guessing my short cycles now are a) thyroid but also b) prog deficiency related?

Any experience here?  If you'd prefer to PM me please do, but I just feel stuck in a washing machine right now and I'm so tired I can't think straight.  If you've had IV iron, how long did it take to feel better?  I need a bit of hope.

Thanks so much, hope that all made sense, I feel like I'm at the bottom of a well ...

Rebecca

[MummyClanger]

Hi I’m sorry I can’t help with any of this , but just wanted to say I hope you feel better soon. Menopause is bloody awful without extra health problems to deal with. Good luck xx

[RebJT]

Hi

Thanks for kind words!  I'm so worn out with suffering I'm driving myself a bit crazy, I am hoping there are some ladies here who can help me figure this out.

Thanks

Rebecca

[MummyClanger]

I have oestrogen patches and a Mirena coil so I’ve not had a period for nearly 20 years. However as this releases progesterone this probably wouldn’t be an option I’m guessing. Hopeful you are still under the care of an endocrinologist x

[RebJT]

Hiya

Well gynae wants me to have a Jaydess which is a mini mirena, but don't want to do that until all the whacky iron symptoms have calmed down (I honestly feel like a basket case when iron is low) so I can track reactions and work out what is doing what.  But I'd love to have no periods, I'm considering ablation if all else fails.  But if I could crack the prog side of things, I'd be off to the races as I feel bloody brilliant on estrogel.  So frustrating.

Yes have an endo (two actually one NHS for cancer monitoring, and now private and he's also a func med so a bit more clued up) due to speak to him again after next set of thyroid tests, although he's so expensive, I'm rapidly going broke trying to circumvent the appalling care that is the NHS ... cost me nearly a grand for the iron infusion ...

Thanks

[KBallinger]

Hi RebJT. It really may be worth trying the Jaydess. I tried it as my last resort and weirdly it calmed down my anxiety . I spotted daily for 4 months but no real bleeding. Unfortunately I had to remove it as it made me so depressed, but all progesterone does that to me.

Failing trying the jaydess do you not have a case for a hysterectomy. Not an easy decision but the only one I was left with or I had to stop oestrogen which had its own problems. 

I went 4 months after coil removed with oestrogen only and had several massive bleeds. Ferritin levels depleted and iron low despite prescription iron supplements.

My iron levels have gone up and my ferritin levels are also going up. X

[RebJT]

Hi

I so hear you, it's bloody miserable isn't it.  I'm going to do Jaydess, letter gone to GP today, I can't carry on like this.  And low iron will make your periods heavy, google 'Iron deficiency without anaemia' - there are a couple of papers that are very very good, but you'll be symptomatic with a ferritin below 100 (this is why I think a lot of my whacky 'progesterone intolerance' symptoms may well be iron after all, low iron also makes you depressed).

Going to start a new thread on Jaydess, to see if I can get a good sample of responses, although I suppose ladies who are happy with it aren't on the internet, somewhat skewing experiences!

I'd rather not do hysterectomy just yet if I can avoid, as I've had a thyroidectomy and learned the hard way 'we just pop you on some hormones and you're fine' - total lie!

Reb
x

[Julia45]

Wow - I can relate to so much of this. Last June, I was told I had Labyrinthitus (tinnitus and dizziness). I had bloods take and told they were "normal". Fine.
Then I went on to HRT for anxiety and it calmed me down however the tinnitus and dizziness remained with me for most days.
Every month (after my period) I was feeling sedated tired. Like I had been injected with something. Horrible. It lasted for days along with the tinnitus.
Then I had bloods taken in Dec. "Normal" again.
By the time Jan arrived, I felt so weird, I asked for a print out of my blood results.

June my ferritin was 40
Dec it was 20 .........so neither of these are normal!

I also experienced a fizzy nose feeling and was told I had rhinitus. I'm sure its due to histamine?

I am now on Iron tablets and eat an iron rich diet. I had a blood test 3 days ago and my ferritin is 32. I still feel tired and dizzy but hopefully this will improve.

My meno specialist (who I saw today) has put me on 200mg of utrogestan every day to see if this will stop ovulation so I don't bleed. She also said not to use too much oestrogen so the womb lining doesn't build up too much.

The ferritin wasn't picked up!!

[RebJT]

Hiya

Wow, it's crap isn't it!  I had a private iron infusion at the Iron clinic in London, with a ferritin that low you are a candidate too.  If you google 'Iron deficiency without anaemia' you'll find some great papers, which explain all the symptoms.

I'm currently trying again with utrogestan as I'm waiting for the NHS to action gynae's last letter and want to try and help myself, but my gynae didn't know much about iron and she was very very interested in what I'd dug up about it, as it explains so much of what I've been experiencing that we thought was just hormones, but clearly isn't.

Sorry you are suffering so much.  Make sure you are taking enough iron, usually recommended doses aren't high enough, particularly with heavy bleeds.

Reb
x

[Meeka]

Hi reb ,
I use utrogestan vaginally but I don’t feel great when I use it , the usual progesterone things .   I also have osteopenia and so my meno specialist said I really need oestrogen via HRT . A hysterectomy was suggested as a solution . I was surprised as I thought it was a bit radical but did think about it .

[Julia45]

Reb.....can I just ask what your level was and what your symptoms were please?

My level was 20 in Dec and I felt sedated-tired, dizzy and very off balance.

I'm now at 32 and still feel tired and dizzy. is 32 still quite low?

 

[RebJT]

Hi

Yes clinic said any woman with an HB below 130, and a ferritin under 100 is iron deficient.  I was frankly anaemic (Hb 119) by the time they infused but at last test pre infusion my ferritin was 99 but my serum iron and other markers were really low, and my folate was really low.

Google 'iron deficiency without anaemia' and a couple of papers pop up, one something like 'important, neglected ...' - that lists all the symptoms.  Iron clinic doc told me to log all my historical blood tests, turns out I've been iron deficient for a decade.  Iron deficiency creates torrential symptoms including heavy periods, hormone havoc and histamine issues, so I'm starting to wonder if my core issue has been my iron, not my hormones (hence me wondering if I'm truly progesterone intolerant, or iron has had more to do with whacky symptoms than I realised).

Not sure if I can post links here, but if I can, let me know and I'll link you the papers.

Rebecca

[lindseywalsh]

Hi there,

Ok. So I have some experience of some of the things you have raised in your post:

1. Uncle had regular IV iron infusions ... (his sister was the same). His hospital let him have them whenever he needed them. They were great. Took a couple of months to feel better. I realise everyone is different, but they DEF helped him A LOT

2. Re progesterone intolerance. This is a BIG one for me. What I have learned from tons of research as well as consultations with Studd Clinic (they are gynae professors) and Newson Health is as follows:

- women are often given unopposed oestrogen at start of HRT regimen for up to 6 months, particularly if their oestrogen levels are very low (Newson)
- it takes around 8 years for any problematic cancers to develop due to thickening of the endometrium (Prof Studd clinic)
- studies have indicated that 100mg utrogestan for 7 days per month/cycle should be adequate, although by exception and an annual ultrasound is recommended to check ends thickness
- I have been using the wonderful oestrogel since Nov 2018. As I don’t get on with the utrogestan, I have used this very infrequently. (Essentially contrary to the directions of the doc). I planned to address this March 2020, but caught COVID and took a while to recover, so it went to the bottom of my list. I eventually addressed in Dec, started to use continuous and had a massive crash after 12 days. This is what has led to my detailed research and several expensive consultations. I was obviously concerned re endometrium, but Studd Clinic reassured me I was unlikely to have caused myself any issues even after 2 years of pretty much unopposed oestrogen.
I had an ultrasound yesterday - absolutely normal thickness, if anything on the thin side.
- I am having a consult with a hormone clinic that proscribe compounded progesterone as well as the standard oestroge/utrogestan regime. They are qualified hospital doctors (ie not naturopaths). I know that I need to find a workable progesterone therapy.

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

I hope this info helps, and I hope you feel better

I hope that this makes sense

[lindseywalsh]

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?

[Tinacros]

My ferritin was 21 and gp refused iron tablets. I’m always dizzy etc. I’m actually lay on the bed now. I’ve just gone onto femseven conti patches to see how I do with those.  I bought my own ferrous sulphate and take them sporadically. The GP Also said my daughters was normal at 11.  Her endo (she’s type 1 diabetic) went mad and put her on meds. Gp now took her off them as last test was 32 🙄. It beggars belief!!! Neither of us have ever been offered an infusion xx