Feeling fatigued

[expatkerry]

I'm posting because I'm wondering if anyone has had the same experience as me. I was finally diagnosed with PA in 2016, years after symptoms began when things really began deteriorating. Since then I've had some brief periods of stability but lately everything has gone pear shaped. I'm having to inject daily and I'm still not feeling 100 percent. Some symptoms have improved, such as anxiety, insomnia, weak legs and intestinal pain, but the fatigue is worse, as are the headaches and lower back pain. Self injecting began in December. Must I accept that I may never feel 100%?

[wedgewood]

Sorry that you feel so unwell . PA is an auto-immune condition , and they seldom come alone .You may have a thyroid problem , as it often exists with P.A., and some of the symptoms over-lap . So get your thyroid checked out . You need T4, T3 and TSH values tested . I’m not knowledgeable on this , and you should get a better answer than mine .Best wishes .

[expatkerry in reply to wedgewood]

Thanks for replying, my GP seems to know this connection and tests me regularly.

[Cherylclaire Forum Support in reply to expatkerry]

I have been self-injecting every other day since September 2017 and have finally started seeing slow improvements, which is a huge relief because I was deteriorating on any frequency available on the NHS.

They tried to help, but clearly do not yet understand why some people need so much more B12 than others and whether continuing to raise the frequency of injections until symptoms are controlled will have any adverse effects long-term. How could they be certain when the research has not yet been done ?

I say "yet" because the research trials initiated by the Pernicious Anaemia Society have shown very clearly that there is a marked distinction between those with a concrete PA diagnosis needing more injections and those PA patients able to manage comfortably on the NHS frequency. This will lead to research once trial results are published, which will be soon.

This doesn't help us right now. You because you are struggling, and me because I don't have a PA diagnosis, "just" B12 deficiency, then Functional B12 deficiency.

I can tell you that it is worth persevering if you are getting improvements, that it is possible to get still more, but check that all else is as it should be.

I keep folate and ferritin high (was advised to aim for top 1/3 of ranges), which took a long time to achieve, despite good diet and supplements (folate at 3x recommended daily amount initially)- now just a good daily multivitamin and mineral tablet. I also take prescribed D3 (osteoporosis of spine). Diet vegetarian (not that this could be considered an issue any more) but high in B12 and B12-enriched products , iron and folate. If folate and/or iron low, my gums bleed and hair falls out, so indicators are very clear, and GP checks to ensure not too high/low anyway.

As for B12; I don't wake up with stiff feet, don't have groin pain/ back pain/ hip pain now, don't struggle to walk like I've been "rubber-banded", don't have an afternoon nap or sleep for 14 hours. My memory is also improving .

I still have air-hunger most days, and still get dizzy. Concentrating for long periods is still difficult, and I have cognitive impairment when tired: individual words being understood, but not forming recognisable sentences to me. Mood swings admittedly also still need work. I have (for the time being) replaced reading books with graphic novels, finding additional visuals very helpful to memory.

This is certainly not a cure, nor is it plain sailing- it took time, I do have blips and still can't work out why - despite continuing doggedly with daily symptom records. Meanwhile, tomorrow I have an appointment with a consultant who has been looking at my DNA. He says there's always a story.....

let's hope its in comic form !

Take good care, expatkerry

[expatkerry in reply to Cherylclaire]

Hello and thanks for the supportive reply, yes I know about the trials and it is encouraging that research is ongoing. I'd love to hear about your meeting with the specialist. I also have an appointment tomorrow with my gastroenterologist who is very supportive, should be interesting.

[Cherylclaire Forum Support in reply to expatkerry]

Well, I've just posted about that: Disappointment with DNA Consultant, I think I called it, which kind of says it all really. Hope your supportive gastroenterologist lived up to expectations, expatkerry - let us know, okay?

PS: I had my full panel thyroid tests (6 of them) by post and Marz interpreted results for me. In range, but not as perfect as I thought I was !

[expatkerry in reply to Cherylclaire]

Hi there, sorry your DNA specialist turned out to be disappointing 😕my gastroenterologist was, as always, very supportive (if a little nervous about the frequency of my self injections!) she gets what I've been through with doctors and tells me if the haematologist I'm supposed to be seeing rolls his eyes and shows me the door I'm to take no notice. She is very interested in the work that Martyn Hooper is doing and laments the fact that there is no equivalent in France. I swear I love this woman! It took me years of seeing closed minded doctors before I found her.

[Cherylclaire Forum Support in reply to expatkerry]

Love her too.

[Judithdalston in reply to expatkerry]

Just to say GPs tend to test for TSH only, and sometimes even after asking for FT4 and FT3 the lab over-rules the request. I have hypothyroidism/ autoimmune thyroiditis and trying to get b12 diagnosis/ injections sorted and have to do complete thyroid test ( TSH, FT4, FT3 tested privately and if you want an thyroid autoimmune diagnosis too I suggest private lab too for two autoimmune antibodies (TPO and TgAb); hypothyroids also get their vit D, b12 and ferritin and folate tested yearly( privately) but I suspect you are good at that due to the way all 4 relate so closely to each other. If you want more thyroid info/ help switch to healthunlocked sister site Thyroid U.K.

[expatkerry in reply to Judithdalston]

Thank you

[Gambit62 Administrator]

Have you had thyroid function checked?

Also might be worth visiting a physio about the lower back pain and even the headaches to check not postural/muscle weakness.

[deniseinmilden]

Hi!

Are you taking a broad spectrum multivitamin and mineral supplement plus extra folate, potassium, magnesium and iron? Have you had your vitamin D levels checked?

What cobalamin are you using?

I have to have methylfolate with my hydroxocobalamin and this may be the case for some people with cyanocobalamin too.

As symptoms are your body's way of telling you that something is wrong I would try to get to the bottom of it, especially if you have felt better at some point. I don't think we can expect to have the stamina of someone who is fully well but shouldn't suffer the feeling that something is wrong.

[expatkerry in reply to deniseinmilden]

Thanks for all the advice as I'm off to see my doctor this morning I'll be asking her to test my vitamin and mineral levels. Taking multi vitamins is not an option for me as I have chronic gastritis and can't tolerate supplements. 😕

[Marz in reply to expatkerry]

Which tests were done to rule out Hashimotos ? Hope things went well for you with the Doc this morning. 😊

Do you know your levels of Folate - Ferritin & VitD ? Am wondering if you could manage under the tongue sprays instead of tablets ...

Always good to have copies of testresults so you can monitor your progress and check what has been missed. !!

[expatkerry in reply to Marz]

Not sure about the tests but as I went to the intern depot in the hospital and they tested for any possible autoimmune disease that corresponded with my symptoms, I presume it has been ruled out. Folate and ferritin are fine Vit D to be tested shortly. Under the tongue sprays could be an option, do they exist for all vitamins?

[Marz in reply to expatkerry]

I don't need them - they are often mentioned on Thyroid UK. Better You is one company selling sprays on Amazon - could be worth checking. The correct thyroid tests are TSH - FT4 - FT3 & Anti-bodies TPO & Tg. Do ask for copies of all your results so you can monitor your progress in a Wellness File - and check what has been missed. 😊

[Ryaan]

Low Vitamin D can cause fatigue if you haven’t had it tested.

Apart from the obvious Ferritin and Folate levels, Thyroid tests I wouldn’t know much more of what is causing your fatigue.

Perhaps you can try a different type of B12 (methyl/Hydroxo) depending on what your using now and see if it makes any difference.

I don’t know how bad your situation is but in the past I’ve felt worse with more frequent injections and had to cut down from once every 2-3 days to once a week which worked better for me but as I said I don’t know your situation and you know yourself better.

Apart from that I don’t have official evidence to back this up but here’s a simple thing which I promise will make a difference to your fatigue, use it for 4 weeks and see.

You need 2 ingredients, Raw organic honey and Black seed also known as Nigella Sativa or Nigella seeds. (Quite easy to get if you look them up online).

You have to grind the Black seeds to a fine powder in a grinder and mix with equal amount of honey and take 1 5ml spoon in the morning before food and 1 in the evening before food.

(The Black seeds you have to heat up in a pan on low heat to kind of gentle roast.

(Black seeds are very bitter in taste and you slow roast in a pan stirring occasionally and you know when their done in a few minutes when you taste them and the “bitterness is Gone”

About 200gof Black Seed mixed with 200g of Raw Organic Honey for a start, take it for about 4 weeks and I hope you can post on here how well it’s worked for you as it makes a big difference, at the least it will really help your fatigue.

You said you have gastritis so you can have a small glass of cold milk after taking the honey/black seed mix to soothe your stomach if you like.

I hope you can come back and post here with an update after about 4 weeks.

It’s a simple thing to make, please do try it and don’t overlook it as at first I also thought what is that going to do to help but it did wonders.

I wish you the best of health and hope you recover soon.

🙂