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[Mandamoo]

URGENT HELP NEEDED!!

Im not sure where to start so Ill start at the beginning. In 2020 (Approx 2 years since I started my HRT) I had a 'funny turn' as my partner had just started getting Covid at the time I thought it was that, it wasn't.  At the time I was taking one Progesterone in the morning and one at night as advised by GP.  On and off I have been having these 'funny turns'.  Feeling drunk, unable to put my words together etc and then immediately falling asleep if in a situation where I could lay down. In the last 10 months I have put this down do progesterone but not sure why it was.  In November last year I was referred to neurologogy.   In January after forgetting my Progesterone I began taking the 2 tablets at night under advice from a friend and hadnt had an episode until a few weeks ago (mild).  3 weeks ago my neurology appointment came up and off I went just to try and understand what had been happening.  What a mistake, for some reason my referral had been passed onto the epileptic clinic and long story short I was advised to inform the DVLA of my symptoms, we all know what that means! There were some inaccuracies in her report although she did note that I thought it was progesterone and requested a video of the episodes.  I tried for a week to record something but nothing happened, then after research and corrubarated by freinds and family it was confirmed that it was in conjunction with eating food!   I was never told this when I first started taking it and have been informed by a pharmacist that it is not mandatory to put this advice on the dispensing label.

So, I need to put a case together to prove this, am awaiting a gynae referral but have done an experiment where after food this happened and videoed it.  Does anyone know what year this 'not to eat'; advice came in and can anyone provide any information to help me, I have 2 drug companies that I have taken screen shots from which state the feelings I have had under 'incidence not known' and obviously a few statements from this site.  Anyone help?

[CLKD]

Morning.  go back to your GP and ask for the correct referral.

What tests were done in the epilepsy clinic?   Has an MRI been recommended, this may be a nerve in the neck rather than progesterone.  Sometimes when I turn my head suddenly I get woozy and need to sleep, it's over in an instant.  Nothing that I could video or show to a medic.

U could self refer to a physiotherapist who will check your gait etc..   Do NOT allow any1 to manipulate any part of your spine.

How long in Jan were U without the progesterone?

Why have U been referred to a gynaecologist? 

This symptom may be due to the vagus nerve if it happens after eating, a nerve which there is still a lot to learn about.

[Suziemc]

Hi

I started to take Utrogestan in 2021 and the 'do not take this medicine with food' instruction was definitely in the patient information leaflet at that time (I realise you started 4yrs or so before this!) The NHS website, and others, expanded on this and said not within 2hrs of food and no food for hour after.

I have a feeling that the patient information leaflet would have contained this instruction for many years so I fear that you might be flogging a bit of a dead horse pursuing this subject and might be better to concentrate efforts on the neurologists report and any inaccuracies there.

Good luck!

Suzie

[sheila99]

Have you tried taking it vaginally as that avoids the food issue? Though if you're in dipute with the DVLA using something other than utrogestan might be better. The online PIL I found at https://www.medicines.org.uk/emc/files/pil.352.pdf tells you not to take it with food and that drowsiness and dizziness are side effects.
 This one is for utro 200mg https://www.medsafe.govt.nz/consumers/cmi/u/Utrogestan200.pdf it says 'Sysemic side effects of tiredness and dizziness observed with the oral form have not been reported at
the recommended dosages for vaginal use'.

[Mandamoo]

It is 100% nothing to do with neck or spine or neurological. I took the progesterone as a test for a week before I went to bed and nothing happened apart from a bit of tiredness. I then took the tablet on two separate occasions in the last week after food and wham that was me on cloud 9, drunk but obviously with no alcohol intake. I have been referred to gynae (menopause clinic) as they cancelled an appointment last month and had already expressed my concerns  that something was wrong to gp as it never happened unless close to taking tablets, so obviously under the circumstances I need to have this sorted asap. Additionally if it was the case that it could make you drowsy why was I told to take 1 in the morning and 1at night, I do not think that it was documented then..around 2017.

[bombsh3ll]

What a nightmare!

It's not that the vast majority of people shouldn't take it with food, it's simply that food increases the amount absorbed by 60%

This can be got around in the main by either taking on an empty stomach, reducing the dose or taking it vaginally.

You obviously have an unusual sensitivity to it, and some people just do - the metabolites when taken orally do act on the GABAergic system. So this is biologically plausible.

This is an adverse drug reaction, not a seizure disorder.

Hopefully you will get a competent and on the ball clinician to help you sort this out.

However as it has caused this effect on you, it would probably help your case to avoid oral use completely just so there's no concern that you may unintentionally ingest food close to it, and either take it vaginally or switch to a different product.

[Mandamoo]

Thank you bombshall, you are absolutely right, I need an on the ball consultant.  I now have to prove it to the epiletic doctor and get the inaccuracies dealt with too!

[CLKD]

Where is your GP in all this Mandamoo?

Let us know how you get on!

[joziel]

This is ridiculous as a situation.

I have the same effects if I take it with food. By the way, it is even more intense if the food contains fat/enough fat, because it is fat soluble. I used to deliberately take it with a coconut oil healthy bite snack thing at bedtime to increase the effects and help me get to sleep......

[Mandamoo]

First of all, can I thank all of you that have relevant information for replying to my post.  I am compiling evidence and alot of this has been really helpful.  Joziel, yes this a ridiculous situation and I need all the help I can get!  CLKD the GP I first spoke to last week said that if neurology has said I have to report it then I have to report it even though it is on my records that I thought something was going on with the talet but in the meantime she would refer me back to menopause clinic as they had cancelled the appointment last month.  I then spoke to another GP this week who has said they will issue a new prescription for a different way of taking it but to be honest I do not want to have anything risk losing my license so now I am thinking of coming off of HRT altogether, too much of a worry and I still have to prove what I am saying is correct.  If there are any clinicians or consultants that are out there that read this I would really appreciate some feedback from them too.

[Kathleen]

Hello Mandamoo and welcome to the forum.

You may know that Menopause Matters was set up by Dr Heather Currie a Consultant Ob/Gyne based in Scotland.

For a long time it was possible to email questions to her via this site, unfortunately I believe she no longer offers this service but it might be possible to message her through Emma, the moderator.

MM also produces a magazine and I believe that Dr Currie recently made a contribution so that might provide a way to contact her.

If all else fails perhaps approach a Consultant privately for advice.

I hope this is helpful and take care.

K.

[rferdi]

It's amazing how differently each one of us can react to progesterone.  In my case it's exactly the opposite as whenever I take mine with food, (or even a while after eating but still during digestion) I never get the welcome feeling of drowsiness that helps me so much to sleep well.

The only way I can get sleepy from Utrogestan is if I make sure I take it in an empty stomach, so right before bed and having had absolutely nothing to eat for at least 3 hours, preferably 4. 

Hormones are so complicated.

[Hurdity]

Hi Mandamoo

 

Just to reiterate that the whole issue about taking or not taking with food as bomb say is because it increases bioavailability - and this is not new. The advice is based on a research paper - here is one study ( summary only available) https://pubmed.ncbi.nlm.nih.gov/8513955/

So the reason the advice is to give on an empty stomach is to ensure that the dose taken is as consistent as it can be across populations of women.

The detailed product info here states that this is the reason:

"Utrogestan 100mg Capsules should not be taken with food and should be taken at bedtime.

Concomitant food ingestion increases the bioavailability of micronized progesterone"

https://www.medicines.org.uk/emc/product/352/smpc#gref

Unfortunately the patient leaflet does not go into this detail and so can give the erroneous impression that it is dangerous or wrong to take it with food. [in fact anecodotally this could be a way of increasing systemic progesterone levels in those for whom a particular dose is not protecting the endometrium sufficiently - as an alternative to increasing the prescribed dose - potentially].

It seems you are highly sensitive to larger doses, although your reaction is quite extreme in the sense that it does not occur when not taken with food.

You haven't said how old you are or whether you are taking it continuously (I presume so?) but why not just take another form of progesterone? Utrogestan and other bio-identical progesterones have to be taken in large doses because they break down quickly in the body so more needed to ensure that systemic levels remain sufficiently high to protect the uterus. Synthetic progestogens take longer to break down and can be taken in smaller doses eg provera.

This would be the only way to demonstrate conclusively that your episodes are due to the progesterone.

Hurdity x

[Emma]

It sounds like you're dealing with a challenging situation, and it's good that you've gathered evidence through self-experimentation and research.

The specific advice regarding taking progesterone without food may not have a single introduction date, as this information can vary depending on the manufacturer and region. However, it's known that the absorption and metabolism of certain progesterone formulations can be affected by food intake, which may explain your experiences.

Some forms of oral micronised progesterone, like Utrogestan, are often recommended to be taken on an empty stomach because food can increase its absorption, potentially leading to higher blood levels and side effects similar to what you describe (feeling intoxicated or sedated). Pharmacists are aware of this, but it may not always be explicitly stated on labels or when the medication is prescribed.

Here are some steps you could consider for building your case:

1. Medical Literature: Search for clinical studies or drug information that links progesterone with side effects after food intake. You might focus on articles discussing pharmacokinetics (how the body absorbs and processes the drug) when taken with food. The exact year of such guidance might be hard to pin down, but gathering medical literature showing this effect could support your argument.

2. Manufacturer Guidelines: Contact the drug companies that produce the progesterone you’re using. They may be able to provide documentation about changes in recommended usage or safety alerts. You've already taken screenshots, which is a great start.

3. Pharmacy Consultation: Reach out to pharmacists for professional input on why this advice may not always appear on prescription labels, even though it can have such significant effects. A written statement or opinion from a pharmacist could strengthen your case.

4. Neurologist Input: Although your referral to the epilepsy clinic wasn’t ideal, consider getting their report and noting any discrepancies. You could bring this up in future discussions with specialists to clarify that your symptoms align more with progesterone effects than epilepsy.

5. DVLA: While this might seem daunting, if your symptoms were truly due to drug side effects and not a neurological condition, you may be able to present a strong case that the episodes are controlled once you manage your medication.

If you gather enough clinical and pharmacological data linking your symptoms to the timing of food with progesterone, you could potentially clarify this with your healthcare provider and even DVLA.