Does anyone have any idea what could be wrong with me?

[Flamingo916]

I'm really struggling with a whole bunch of symptoms that I've been back and forth to the doctors with for months and not really getting anywhere and just looking for some support/to see if anyone else has experienced similar or knows what this could be.

For background I'm 31 and I have IBD but this has been under control for some time and I don't think these symptoms are related to that.

About a year and a half ago I noticed I was experiencing worsening PMS symptoms, this gradually deteriorated to the point where I was suffering from suicidal thoughts and rage before my period as well as feeling physically unwell (very bad cramps, sick, not much appetite, headaches, general aches etc). Just after Christmas I decided to go on the combined pill.

Whilst this has helped with period pain and reduced the length of pms symptoms, I seem to be feeling more unwell...I seem to have developed almost permanent acid reflux/some degree of feeling sick, I feel like I have a lump in my throat/more mucus, I feel tired a lot, my eyes are always dry in the morning when I wake up and this sometimes persists throughout the day, my tmj problems seemed to have flared up again, I seem to have worse anxiety. I just feel crap all the time.

I don't know what to do. I don't know whether this is because of the pill or something else or because I've had a lot of stress in my life and it's now showing up in all this random symptoms.

I've had blood tests though not since before Christmas and nothing was really picked up. Thyroid has been checked multiple times and fine, b12 fine, vitamin d was 52 in December which I think is borderline but presume that may have increased now since it's been better weather, ferritin was 27 but haemoglobin 148 so I'm not anaemic.

I'm just so sick of feeling rubbish and I'm at a loss what to do anymore. Saw a GP last week who said maybe swap to mini pill but it felt like he was just clutching at straws. Just looking for some advice.

My first thought was Premenstrual dysphoric disorder, Does this sound familiar? PMDD causes extreme mood shifts that can disrupt work and damage relationships. Symptoms include extreme sadness, hopelessness, irritability or anger, plus common PMS symptoms such as breast tenderness, bloating and pain. The pill can be used to treat it but usually its treated with a short period, a few days, of antidepressant or anxiolytic use each cycle.

The more recent symptoms could be from the pill you're on. You dont necessarily need to switch to the mini pill, there are several different versions of the Pill and some women find their body reacts worse to one or more of these. If you google 'name of your Pill and consumer medicine information' you'll get some information on that specific Pill including it's common side effects.

@EliflurtleAndTheInfiniteMadness yes pmdd has been mentioned before and I think that is what I have even though it seemed to develop out of the blue having not really suffered even with pms before. Antidepressants have been mentioned before but unfortunately SSRIs don't agree with me and they are the main ones that are used I think.

Thanks, unfortunately it just seems like no one knows how each pill will affect you. I started on rigevidon then I'm now on gedarel which has a lower dose of oestrogen but I don't think that's suiting me, not sure what other options there are

Autoimmune condition? Sjogren’s can cause dry eyes and autoimmune conditions in general can impact your entire body. Did the blood tests look at this possibility?

@TheSnowyOwl I'm not sure - how do blood tests check for autoimmune conditions? I already have one autoimmune illness (ulcerative colitis). I've read about sjogren's and thought it could be a possibility but I don't suffer with a dry mouth which seems to be the main symptom and my eyes aren't always dry, I don't know.

Alprazolam (Xanax) and other benzodiazepines are sometimes used. of course they have their own issues. The Pill can actually made depression/anxiety worse for some women. There's a decent list the various pills available below. it is really just trial and error unfortunately. https://onlinedoctor.lloydspharmacy.com/uk/contraception/contraceptive-pill-brands

I think Id want to rule out side effects before considering further testing for things like autoimmune. Did they do a full thyroid panel or just one result, think its TSH usually, but it doesn't tell the full story. Have they checked inflammation levels CRP? Or antinuclear antibodies ANA for autoimmune?

@EliflurtleAndTheInfiniteMadness thank you for the link, I will have a look.
I have my CRP levels checked every 8 weeks as part of my treatment for ibd and it's always normal as far as I know (they'd contact me if not). Don't think the other thing for autoimmune has been done though.
They did more thyroid tests in January 2023, I don't have access to them now but they were normal. Last December it was just tsh that was done which came back as 1.
I do have a strong feeling that all my problems are hormonal but no one seems able to work out what would help

It also seems random as to what symptoms I have on any particular day or even part of a day eg I could feel ok in morning then feel unwell later on or vice versa. One day it will be x symptom, another day y... Makes it very hard to know what's going on

Have you had thyroid antibodies tested? If only TSH has been tested it's not enough because for some people TSH isn't responsive as it should be. YOu need FT4 and FT3 hormone levels checked as well. You may need to buy a home finger prick test to do this as it can be difficult to get those parameters measured if TSH is in the normal range.

Have you tried tracking the symptoms? I have IBS amoungst a few other things and I noticed from shortly after getting my periods that it got worse around my period and middle of cycle so ovulation and that when my IBS was bad my period pain would be worse. There's some interplay there but I don't think they really understand it well.

I don't think it's the explanation for everything you're feeling, but your vitamin D level is really quite low. The cut off for a deficiency in the NHS is <50. Mine was 50 and I felt absolutely wretched. Like exhausted unlike anything I've experienced in my life. I'd get tired just walking up a flight of steps. I had joint aches and stiffness. They initially thought it was rheumatoid arthritis or another autoimmune condition. Ideally, your level should be over 100.

I would consider treating yourself for vitamin D deficiency. You won't sort it out just with some sunlight or a normal 'off the shelf at Tesco' dose. In fact, it wouldn't surprise me that it's lower than 52 now if you haven't treated it. Look into dosing for vitamin D deficiency. You have to take a very high dose at certain intervals to build your stores back up. I think it's something like 20,000 IUs once a week for 8 weeks. Don't quote me on that, just look up the dosing schedule, but it is a lot more than just popping a multivitamin daily. Thankfully, even high potency vitamin D is quite affordable and it's an easy fix you can do yourself. I would at least start there for now and see how you feel after a month or so.

4 weeks of vitamin D and I felt almost normal again, so it made a real difference very quickly.

I have these exact symptoms! I had the Mirena coil for 7 years so didn’t relate the problems to my cycle until I had it removed. I then started tracking things. I found that the psychological symptoms would start in the luteal phase, along with worsening allergy symptoms (including mucous in throat - awful), aching joints, nausea, reflux, night sweats etc. I had a host of tests for autoimmune diseases but everything came back ok. I was diagnosed with PMDD and tried various treatments but they didn’t work, so am now on chemical menopause injections.

It’s definitely worth going through the AD screening to rule things out. The mini pill generally isn’t recommended for PMDD because it can stem from an intolerance to progesterone, however there is a progesterone only pill that is well-tolerated called Slynd (drospirenone). Agnus castis and B6 are also recommended although they didn’t work for me.

@CrunchyCarrot I'm not entirely sure. I know in Jan 23 they did more comprehensive thyroid tests but I don't seem to have those on the NHS app but maybe if I go into my GP surgery I can get a print out and check

@EliflurtleAndTheInfiniteMadness yes before I went on the pill I kept a diary of my symptoms, both physical and mental every single day for about a year. There was definitely a pattern of symptoms around ovulation and also for 10-12 days before my period with the symptoms usually improving about 2 days before my period would start..since I've been on the pill I haven't bothered keeping a record as assumed you don't really have a cycle on the pill?

@mindutopia thank you, that's really helpful. I've got another gp appt on Thursday and I think I will ask for repeat vitamin d tests

@VictorianBigot thanks so much for sharing your experience and sorry you have pmdd too. I have very similar symptoms to you - reflux, mucous in throat, night sweats, aches etc. yes I'm not keen on the mini pill, don't feel like the GP who suggested it had much idea. Did you get referred to a specialist? Thank you about the info re slynd, I will ask.

I've never looked into the science of exactly how much the hormonal cycle is gone/reduced with the Pill. I never have periods on the Pill or now on the Mirena which I am now, but I do still have times I feel exactly like Im having PMS and its quite a distinct feeling. It feels more suppressed rather than eliminated for me.

@EliflurtleAndTheInfiniteMadness no I haven't either, not sure I fully understand what happens with your natural hormones when on the pill or other normal contraception.
Yes I feel like that too, there are times where I notice I have similar symptoms to pre-pill - they feel somewhat muted but are still there

@Flamingo916 yes, I was referred to a gynaecologist for treatment.

@EliflurtleAndTheInfiniteMadness you can still ovulate with the mirena, even if you don’t have periods. I know I did because I had many US scans which showed I’d ovulated. And the combined pill itself can cause mood problems, which may at least partially explain why it didn’t help.

Re the science, they’re not really sure of the underlying mechanisms. So much is unknown about PMDD. Here’s some snippets I found:

‘The most accepted hypothesis suggests a relationship between exposure to progesterone, Allo, serotonin and occurrence of PMDD symptoms. These relationships also are the basis for some of the PMDD treatments.

[…]

It does not appear that an excess or deficiency of Allo acting on GABAA receptors causes PMDD symptoms but rather, an abnormal paradoxical response to fluctuation in Allo, possibly due to alterations of the subunit composition (and therefore reduced sensitivity) of the GABAA receptor after exposure to Allo.

[…]

Hormonal contraceptives that prevent ovulation obliterate the cyclic production of progesterone and ovarian derived Allo. It is not known why the hormonal contraceptives that suppress ovulation are not always effective for PMDD, but the progestin in the hormonal contraceptive and possibly the duration of the pill-free interval are thought to play a role.42 Many women with PMDD continue to have cyclical or daily PMDD-like symptoms while taking cyclical or continuous active oral contraceptive pill formulations.14 One explanation for the persistence of PMDD-like symptoms during ovulation suppression with a contraceptive containing a progestin is that synthetic progestational compounds (progestins) can also be metabolized to Allo or similar neuroactive compounds that bind the GABAA receptor and alter the subunit composition, with resultant symptoms in susceptible individuals.

[…]

The effects of hormonal contraception on mood, even for women without PMDD, are highly variable.’

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6759213/#:~:text=It%20is%20not%20known%20why,thought%20to%20play%20a%20role.

@VictorianBigot did you have to push hard to get a referral? I've been going to my GP with these issues for 1.5 years and no mention of referral...

Not once I figured out it was cycle-related. Before that nobody had ever mentioned PMDD to me as a possibility. I booked an appointment with an ANP who apparently specialised in women's health and talked through my symptoms. She said it very much sounded like PMDD and that she has worked with a lot of women with the same problems. She started me off on the various treatments but when they weren't entirely successful, she made the referral. So I was really lucky to have her. Could you ask if there's anyone who specialises in women's health at your surgery? You can ask a GP directly for a referral, and if they refuse ask them to add the reason they have refused to your notes.

@VictorianBigot ahh. I've been saying it's cycle-related/hormonal for the whole time. I told the GP last week it is ruining my life and it felt like he just prescribed the mini pill for 3 months with little regard to if it will help. He also added a health condition on my NHS app : pms and listed the significance as 'minor' which makes me feel utterly dismissed and like my problems are being trivialised. I'm seeing a different GP on Thursday so I will ask for a referral though worried how long this will take