What the hell is the matter with me?

[FallingApart2019]

NC for this as some friends know my other MN name.

I need the collective MN wisdom because I feel like shit and have done for so many months that I don’t remember what it is to feel well. I’m really at the end of my tether

I’m mid/late 30s and work FT with 2DC (married) in a relatively stressful and busy job but it’s been like this for the past 5 years and hasn’t changed in any way.

I have Vitamin b12 deficiency and get injections every 8 weeks and have done for the past few years - prior to this my symptoms were extreme fatigue and brain fog but this doesn’t seem to be an issue any more. I also take lansoprazole for acid reflux (although not every day because I don’t always need it - I probably take 30mg every other day). I also take a steroid inhaler for my asthma. No hormonal contraceptives as they made me lose my mind! Lots of my family are T1 diabetic although LADA but I’ve only ever had one out of the ordinary reading (11.2mmol). The rest are usually 5.0 or thereabouts.
My periods used to be 30ish days but are now 35/36 days and whereas my first day used to be hell on earth, it’s now my second day.

The past 6mo I’ve left awful. Really shit. There is always something wrong with me. It’s nothing particularly dreadful - I’ve not been off work for example - it’s always low level stuff but cumulative affect of making me feel constantly ‘not well’. I have a few days a month where I feel normal.

I am on my second cold sore in as many weeks. In between I have had a whopping great big mouth ulcer which went but the second cold sore came soon after.

I’ve had a very sore vagina (sorry!) - I’ve had some minor fissures between my inner and outer labia which seem to happen after I’ve finished my period but goes away with some hydrocortisone cream. I’ve previously been to the GP about a dry vulval region and they said it was due to me waxing regularly, so I’ve now stopped but the problem now seems to be my localised tobmy vagina than my vulva region as a whole.

My skin (overall) seems to be quite dry, I have dry patches on my face and arms with small plagues occasionally appearing elsewhere but are short lived and resolved with a couple of applications of hydrocortisone cream.

I always feel drained and lethargic. I mostly have no energy or enthusiasm for things.

I don’t have regular bowel movements (compared to my husband anyway) but I will have the occasional bout of an upset stomach, for no more than a day.

I recently went to the GP because I felt so anxious about how shit I felt and have been attending CBT but I’m so confused as to whether I’m actually ill or have anxiety which is causing physical symptoms? I don’t generally have a history of anxiety - I suffered postnatally with it but after a few months on Sertraline I was fine.

I’m just so sick of feeling awful but don’t know how to (maybe) separate the possible health anxiety from real symptoms.

Sorry for the rambling. I’m just so fed up and hoping that maybe somebody reads this and recognises it as something they have, that they have been receiving treatment for!

[TalbotAMan]

Sorry. Should have read the full thread before posting.

I think a TTG of 18.9 almost certainly means you are coeliac. Ultimately results depend on the laboratory that did the blood work, but I was told that 'normal' should be under 7. You should ask for the test to be repeated in a week or two. If that is similar or higher, then ask for the endoscopy.

[TalbotAMan]

Another coeliac test recommendation. It's becoming apparent that it can manifest in many, many ways. In my case I was diagnosed at 60 due to nerve damage, though to be (un?)fair there were a lot of clues throughout my life that no-one medical ever picked up on.

The initial screen is just a blood test.

[Perid0t]

@FallingApart2019 sorry for the multiple messages. I also have a problem with my lady bits too and reflux. Anxiety is new for me too and all are linked to high calcium. Please get it checked x

[Perid0t]

Bone profile *

[Perid0t]

Have just read about your phosphate. Phosphate is low if you have hyperparathyroidism (which in turn creates high calcium.

Back to the GP and request a vine profile, PTH and vitamin D test combined x

[Perid0t]

Request a calcium blood test. High calcium has lots of vague symptoms and is rarely tested for (I have it)

[NaToth]

Find out the reference range for that serum ferritin. Ask for a print out of your results. The ranges will be on there. 3 sounds awfully low to me.

[Binterested]

Ulcers say autoimmune disease of some sort to me. Can you ask to see a rheumatologist ?

[Lotsalotsagiggles]

I had similar symptoms and it was low iron and vit d

Use the spray as you've said, as you need to increase your numbers high above what the basic nhs levels are

I saw a private Endo doc and my iron and got s supplements were increased and I keep to his levels which are higher than nhs and I've felt so much better since

[FallingApart2019]

@EllenRipley

I’ve had my tests done. My ferritin was normal at ‘3’ and the rest of the result are just above.

How can I push this forward? What do you think my gluten test means? I’m clearly not coeliac but could I still be sensitive to gluten?

[EllenRipley]

Another vote for getting both your ferritin levels and vitamin D tested (and gluten sensitivity). Get your levels for both, don't be told they are in 'normal range', UK guidelines are woefully behind latest research. Your symptoms tick lots of deficiency/low range boxes.

[FallingApart2019]

Obviously then inorganic phosphate is low but there was no action required apparently

[FallingApart2019]

Hi all

I’ve had my bloods back and were mostly normal except for the following which were borderline normal:

Anti TTG - 18.9 (positives started at 20?)
Vitamin D - 54ng/mol (sufficiency started at 50, optimal started at 70)
Inorganic phosphate - 0.72 (normal levels were 0.8 and higher - although Dr Google suggests 1.0 and above).

Any ideas? I still feel dreadful!

[twolungs]

Cold sores, dry skin, constipation, could all be symptoms of low immune system/stress/vitamins. Sort those things out first then you will know what you are left with.

So, more water, more veg, reducing stress, replace bread/pasta with gluten free versions, bread, wraps, pasta etc. and see if that makes a difference, high strength vitamin C, echinichea.

You may not be coeliac but you may be intolerant, so cutting it out for a while, seeing if it makes a difference, then reintroducing a small amount. I can manage a slice of regular toast a day and pasta about once a week.

Exercise makes a massive difference too.

[Wehttam]

OP try celery juice. It’s a miracle worker. Look it up on medicalmedium

[managedmis]

www.mumsnet.com/Talk/low_carb_bootcamp

[managedmis]

g I would struggle to cut out gluten before I’m told to - I live for bread and pasta unfortunately

^^

Try low carb for a month. Just try it. There's a bootcamp thread on here, maybe join the next one?

[Busymummy16]

Hi @FallingApart2019
Fanny daggers sound suspiciously endo-like to me. what type of cyst was it do you know? If an endometrioma (chocolate cyst) then that is endometriosis cyst on the ovary.

I wouldn’t assume anything as your surgery would’ve probably Been done by a general Gynaecologist who may not know much about endometriosis. It presents in so many different ways and some very small bits of endo can cause a lot of pain. Only endometriosis specialists can really be sure what they’re looking for.

There are a number of specialist endo centres around the country - search for BSGE and they will come up. On Facebook there is the Uk endometriosis support group and also in the US Nancy’s nook which lists excision surgeons, a few of which are in the UK. If it is endo, you’ll want a good excision surgeon to remove it. Not ablation (burning away) as this can make matters worse as the root is not removed.

Good luck x

[WoollyFoolly]

Very very little - maybe one drink every couple of months? I didn't drink very much even before diagnosis though.

[FallingApart2019]

Oh, well that’s a bit rubbish do you not drink Woolly?

[WoollyFoolly]

Alcohol is a bit of a no-no with b12 deficiency I'm afraid. B12 is used to process the alcohol in your system so 2 bottles of wine a week will hugely impact your b12 levels.

[FallingApart2019]

joystir59 my diet is pretty good - I don’t eat a lot of processed food. I try and be neat-free at least a few days a week. I love carbs though.

I’m a bit overweight and don’t exercise much anymore because it feels like I have lead weights in my legs but I do try and move as much as possible.

I don’t smoke and probably have wine twice a week, probably a bottle at a time.
Obviously this will creep up over Christmas but I make sure I have as many alcohol free days as possible!

[joystir59]

Do you have a good healthy diet and do you exercise and are you a healthy weight. What is your alcohol consumption and do you smoke?

[FallingApart2019]

Busymummy16 your endo sounds awful. You have my sympathies. I get fanny daggers and my ovaries hurt intermittently but I’ve had a a giant cyst removed from one before so I’ve assumed that they would have had a look around when that was being taken out?

Stupiddriver1 sorry to hear about your DD. It must be tough to feel like this at a younger age. I’ll definitely mention Behchets to my GP.

colouringinpro thanks for the advice. I had very low stores when pregnant so it’s worth a retest surely?

TwattingDog I would struggle to cut out gluten before I’m told to - I live for bread and pasta unfortunately

TooLaidBack27 I’ll definitely look at the cofactors for vitamin D and possibly join the group you’ve mentioned. I definitely noticed an improvement in my energy levels when I used the spray last winter!

[TooLaidBack27]

Your symptoms made me think of Vitamin D deficiency. My symptoms were very similar: lethargy, brain fog, very heavy periods, dry skin, especially, top of arms. Also, thinning hair at the front. I did private tests and found out my vit D was 39. It should be 50+, according to NHS. Found FB group 'Vitamin D &Co-factors. UK' and took all the advice on there. You will need all the co-factors. But first of all check your vit D and read read read!
Unbelievable, but I started feeling better after 2-3 weeks! Periods became normal' after 2 months.
Obviously, it might not be vit D, but deficiency, but I would suggest exploring that possibility.