Ive found thyroid meds send my prolactin levels through the roof (the higher the thyroid med dose, the higher the prolactin)
My prolactin levels without medication are always completely normal.
I feel my issue with thyroid meds is that they increase histamine and this makes me violently ill and also inhibits my t4-t3 conversion. (Adding t3 only creates a more violent histamine reaction)
Ive recently found a few articles mentioning how histamine can increase prolactin levels. One example here:
Hi there, I have high prolactin and keep having severe histamine flairs. It’s really unpleasant so I feel for you. I’m not sure which came first though the prolactin or histamine as I only discovered the prolactin by chance recently. It also started well before I began levo. So sorry mine isn’t connected to taking thyroid meds but it’s connected to me being hypothyroid. I found taking fexofenadine twice a day (this is over the recommended dose at once daily) helped keep it in check for a while and then I lapsed with it and had another bad flair recently.
I read you need quite high doses of Quercetin to be effective but that’s no use if it makes you sick!!
I’m convinced my flairs are also related to cortisol dysregulation and fluctuating oestrogen levels (I notice a pattern of flairs around ovulation and before my period when oestrogen jumps up or plummets). Not sure if that’s helpful
Thanks for your reply! It’s all so annoying isn’t it!? So like you, I still have histamine issues off of levo but they are much much milder where as taking levo itself seems to trigger a big daily response and it just become completely unmanageable.
You’re definitely right that estrogen and cortisol play a role! I’ve just started transdermal estrogen and noticed an increase in histamine issues within 24 hours! My understanding is that when histamine is high, cortisol also sky rockets to try and get control of the inflammation and calm things down.
I was taking two pills of quercetin so I think 1000mg?
Have you found much to help you?
Are you taking levo and t3? (Many have said they find this helps but for me it makes the histamine even higher!)
Eek sorry to hear about the oestrogen! I did find the fexofenadine helpful but I wasn’t keen to be on it for months on end.
As for Quercetin I’m only taking two a day and I’ve not noticed a huge difference but it may take a while. I’ve been struggling to find dosing information but stumbled across this:
- [ ] Quercetin 600 to 6000 mg per day, divided throughout the day. Take it on an empty stomach. Be sure to take it with the digestive enzyme bromelain
From Dr Lam’s website. It’s a bit vague and quite a range there.
Btw I also saw it interferes with Iron absorption, so take separately if taking iron.
As for my thyroid meds I’ve only just started on Levo and not noticed a difference to histamine on the small starting dose…
I’m about to finish the pack so I think it’s about a month. I’m not convinced my dose is optimal but I’m going to keep going with it as lots of supps take several months to see benefit. Truthfully I found the twice daily fex better!
Btw are you gluten free or low histamine diet? Have you looked at gut health or dietary triggers? It's on my ever growing list of things to look at…
Vitamin C is also recommended to help reduce histamine. Also B6 and zinc and stress reduction.
Also there’s a lady on instagram - Tracy Rodriguez. She does a lot on the connection between ADHD/hypermobility and mast cells (may not be relevant for you) but she did a Mast Cell Master class recently but I couldn’t afford it along with all the other money I’ve spent on blood tests, supplements, drs, the list goes on! There’s some useful posts on her account.
I was actually gluten free for a decade but it hasn’t made any difference so added wheat back in now.
I have tried a low histamine diet but it’s not doing as much for me as I’d hoped and I still can’t tolerate the thyroid meds. A lot of the low histamine diets have conflicting foods tho which makes it hard as some places say it’s fine and others say not. I just seem to react to anything and everything right now 😭
I’m taking slow release vit c, zinc and P5P (active b6) but it’s very early days so hoping it will help Atleast a little!
Did you say you’re only on 25mcg levo? How long have you been on it and have you had any histamine symptoms?
I noticed when I started on 25 I had a ramp up in histamine issues, even then (my constipation got a thousand times worse, my joint hurts and o was completely fatigued)these are all classic high histamine symptoms for me and v similar to hypo symptoms but I guess if histamine blocks conversion to t3 that’s why I feel worse on it.
Gosh that’s interesting. I started on 50mcg just over 2 weeks ago and had one really bad flair (after a week?) so far where I had to slam down 3-4 antihistamines and up my progesterone (I’m on HRT for peri) to try and bring it under control. It normally lasts around 24 hours. I had put it down to ovulation and the spike in oestrogen but perhaps adding the levo contributed. It’s hard to know! I’ve been ok since but I’ll make a note when I’m due to increase my dose after Christmas. I also write any flairs down in my period tracking app to see if there’s a pattern.
I couldn’t face doing all the diet stuff. I feel too poorly currently, and I also read conflicting lists of ‘low histamine’ foods.
Have you tested your cortisol (saliva)? I’m awaiting results, but I think it’s low (and actually I have adrenal fatigue or insufficiency). That might explain some of the histamine craziness!
so my (somewhat limited) understanding is that histamine can send cortisol through the roof ‘in a flare up’ but it’s easy to confuse the two as histamine and low cortisol symptoms are actually very very similar. Be interested to hear your results!
I have normal am cortisol on no medication but absolutely sky high cortisol levels when on thyroid medication which ties in with my theory that the medication is spiking histamine.
To be totally honest o haven’t found much relief from the diet. It’s so restrictive and difficult as like you I don’t fell well or fancy cooking much! It’s kinda miserable tbh.
How much did you up your progesterone and how much are you taking now if you don’t mind me being nosey?
I’ve just switched to continuous Utrogestan, so one at night (I was only taking it during luteal phase as I’m still in peri), but since my prolactin shot up it starting messing up my cycle (really short), so I asked the GP and he said to take it continuously while I wait to see an Endo. I take an extra Utrogestan on top of that when I flair - this part is self medicating and not medical advice. It’s my attempt to ease oestrogen and histamine sprialling. I’m not sure how much it contributes as I’m also taking antihistamines, but I’m just trying anything to help in the moment!
Interesting! I know progesterone is supposed to be a great mast cell stabiliser and also help support Dao production. I’ve also read a few studies that it can really help thyroid function (increase t4 and also some article state it helps conversion too)
I’m taking 200mg utrogestan currently. I previously trialled 300 and actually felt this helped me most!
That’s super interesting. Are you taking 200mg continuously? I don’t seem to suffer any adverse effects from more progesterone. At first it made me quite knocked out but if I take it around 8pm then that works for me. Tbh in my current state it doesn’t really touch the sides at x1 a night. Intrigued to try slightly higher dosing possibly. Why did you stop 300mg if you don’t mind me asking?
I’m supposed to be cycling but obvs I’m panicking that when I stop it things are gone get really really bad. No I don’t have any issues with it either,yes same it can make me a bit sleepy but taking it at night solves that!
I only stopped 300 cos my endo recommended 200 but tbh I’ve gone back up to 300 cos I feel it’s better.
How much estrogen are you taking?
My endo started me on 50 patch and it feels like death. So I was wondering if I should start on 25 instead and take things slower.
I don’t know if you’re aware but you can buy utrogestan from abroad without a prescription and via an online chemist. I do it sometimes to top up my supply! I can Dm you the link if that’s helpful?
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