Is this an autoimmune flare up....or some sort of low Ferritin hinterland?

[MacG]

Hi,

It's been a while since I have posted as everything was ticking along nicely. (I am so grateful for this as I have learned never to take feeling "normal" for granted!) However, over the last several weeks have felt increasingly poorly and wondering whether I am having a full-on autoimmune flare up.

Previously, I did get what I called "episodes" where for maybe a month to 6 weeks I would feel like I was "going down with something" (this is the best way I can describe it) so... fatigued/achey, washed out, you get the picture...that feeling you get the day before a nasty cold breaks! As far as "going down with something" is concerned nothing ever materialised and eventually whatever it was would lift and I would just know that I was back on form. I never really thought of these "episodes" as autoimmune flare-ups. Last one was Feb-March 2019 and nothing in particular showed up on blood tests.

With regard to what I am currently experiencing: Started feeling a bit "weary" at the end of April. Things have just continued to go downhill since then and currently feeling more poorly than I have felt for a long time. My knees hurt (every step is painful) my hands feel stiff (never had this before) I do feel like I am "going down with something" (v. fatigued/washed out, tiny bit sniffly). No real appetite but am making sure I eat. Occasionally nauseous. In short .....pretty "grotty" day in day out. This has been going on for over 2 months now.

I believe that my thyroid is stable. Been on the same dose since 2014 and thyroid blood tests always same old same old. Did a Medichecks test mid June (just to be sure) and, as ever, T3 suppressed (I take T4 and T3 combo) and T3 and T4, as they ever are, mid range. Logically, considering these tests are as they ever have been and normally I am fine, I have dismissed thyroid dosage issue as a possibility.

Also did an iron panel at the same time. Everything looking healthy except Ferritin: 34ug/L (13-150). I fully appreciate that Ferritin needs to be a lot higher for thyroid. I do have to work at keeping Ferritin up, have had problems with Ferritin before but never felt quite like I do at the moment . The less than optimal Ferritin did surprise me as I have a superb diet: eat liver at least twice a week and always make sure I take some Vit C at the same time to get maximum absorption. Also super healthy diet otherwise (gluten and diary free). Paleo....lots of bone broth....you get the picture!

CRP was LOW: <0.3 (0-5). Why then the achey knees/stiff hands??

Followed up with a Covid antibodies test (Medichecks) and that came back resolutely negative so I know I haven't picked anything up.

GP fantastic and feeling no better end of June had a raft of blood tests done. My Folate (>20ug/L range: >5.4) and B12 (908ng/L range: 211-911 - perhaps I could dial the B12 back a bit?) both better than they have ever been. Vitamin D wasn't tested but I do supplement with good quality Vit D3 on a daily basis.

Two things:

1) My ferritin had dropped to 15ug/L (range: 10-291) since testing 3 weeks earlier. This despite increased consumption of liver and addition of 1 x Spatone daily to get my Ferritin up.

2) My white blood cells were also low 2.7 (bottom of range was 3.9). I always have a borderline/low white cell count and have previously been monitored for Neutropenia but never really got to the bottom of the cause. I think this could be autoimmune?? On this occasion lower than usual. If this is an autoimmune flare up could it also have suppressed my white blood cells??

GP has asked to repeat blood tests ( which I am due to do on Friday). However, I just feel dreadful. This "episode" seems a lot longer and a lot "deeper" than previous. Really trying to look after myself but body just not playing ball.

Earlier this year I did have a very intense period of stress (several things came at the same time which I felt I had very little control over). To a lesser degree the stress has been ongoing. As I do, I seem to take it in my stride at the time and do what needs to be done, but wondering if it has triggered current issues.

The thought of getting out in the mountains sustained me through lockdown and normally, although I do have a few ups and downs physically speaking, I am very fit and active but I am completely floored at the moment. Just sat waiting it out but increasingly anxious that this might be the start of a new and more unpleasant chapter. That's stressful!!

Thanks for reading...any thoughts gratefully received.

[Lizzo30]

At the beginning of February this year I felt nauseous and had a bit of gastroenteritis nothing major also my eyes went a bit funny and I had achy hips I went for a covid test thst came back negative but I know now it was covid I had it 3 months it went away then came back in a slightly different way it effected my.digestion.and skin this time I think you have covid it comes in many.different forms

My daughter had terrible gastroenteritis for approx 3 months her long covid now manifests as headaches she tested negative for covid too

We got it from my youngest daughter who got infected at university in Manchester - not far from you

Covid triggered autoimmune eczema in me , try not to worry I honestly think it is covid, I have bicarbonate of soda in water which calms the immune system down and makes your body alkaline which helps fight covid

[MacG in reply to Lizzo30]

Thank you so much for getting in touch. I must admit, I had been wondering. Re testing… I had already felt the symptoms for several weeks when I did the blood test (Medichecks). I know there is room for “slippage” with lateral flow tests and to a degree pcr - by that I mean something like you don’t get enough “material” when you stick the swab down throat/up nose … or whatever but I would have thought a blood test would be absolutely accurate. My result wasn’t even “equivocal” it was resolutely negative. You have given me pause for thought. If it is the case, that is one hell of an infectious virus. I didn’t doubt that anyway. We have been so far out of the flow of things as my partner (in his early 70s) was shielding until he had his second vaccine mid May by which time I was already on my downward spiral. Thanks again.

[Lizzo30 in reply to MacG]

It puzzled me for a long time but I am sure of it now - I had other symptoms one was that soya milk in tea tasted chalky and the tannin in red wine tasted strong , also fatigue

[MacG in reply to Lizzo30]

That sounds like heightened sense of taste. I had not heard about that. I thought it was either no taste/smell or things tasting disgusting. But as you say, many different manifestations.

[greygoose in reply to MacG]

I'm going to stick my neck out here and say something I don't normally talk about, because I have no proof, I've never been tested. However, I'm pretty certain I had covid some time ago - could have been the famous 'something else' but I really don't think so - and it keeps coming back, as Lizzo30 said, with some different symptoms, especially where my eyes are concerned. It's back again right now. Much less severe each time, but the symptoms are undeniable. And, whereas before, everything tasted really nasty - never actually lost my sense of smell or taste, though - this time everything tastes absolutely wonderful! And me who normally hates eating, and doesn't like food, can't stop eating at the moment! If you'd seen all I put away at lunch time! lol And every mouthful was an explosion of wonderful sensations in my mouth. Even the coffee after the meal! Now, here I am, considering what I'm going to have for dinner. It's crazy! I'm just wondering how long it's going to last...

[Lizzo30 in reply to greygoose]

I have to say covid does have some bonases - last year I had to go gluten free as I was developing an allergic reactions but after covid I can eat all sorts of different foods

[greygoose in reply to Lizzo30]

Really? I wonder why that is. Still, sometimes best not to look a gift horse in the mouth. Enjoy it while you can!

[greygoose in reply to Lizzo30]

Have you never heard how soya milk - and all forms of unfermented soya - affects you? It stops the uptake of thyroid hormone by the cells. So, you can have good levels of thyroid hormone in the blood, but still feel hypo because it's not getting into the cells. It's a really bad thing for hypos to consume.

[MacG in reply to Lizzo30]

Me again, for some reason I could only see part of your post when I replied….. not firing on all cylinders. So sorry to hear how it has affected you all and do hope you are now seeing some improvement. Re. my previous reply, could I ask please, were the tests blood tests or swab tests? I hope you don’t mind me asking.

[Lizzo30 in reply to MacG]

Hi no problem I edited my answer so my fault I think. I went to a pop up covid testing place , I didn't get enough culture from my throat I am.sure for the swab they said they were 100% accurate, I didn't get a blood test

[MacG in reply to Lizzo30]

Thanks for clarifying.