I am looking for some advice before I go back to the GP next week, and I feel 'safe' asking it here.
First some background might help:
I live in Australia- GPs and their nursing staff here are no better educated than elsewhere the world, but fortunately we can buy hydroxycobalamin over the counter.
Burnout in Oct 2020 ( not C-19 related), PA diagnosis March 2023 after my gynae HEARD me when I said I couldn't believe the burnout and ongoing fatigue was due to menopause. Loading doses plus 3 monthly maintenance managed by GP gave me my life back..... for a while ( like so many, I believed my GP when told that was all there was to it)
In October, I returned from a 3 week holiday, and crashed! That is when my education truly began. Turns out I had mononucleosis... and felt like I was dying .... I probably was. My symptoms escalated daily, so I started SI while I waited for a GP appointment ( my GP still won't make eye contact when I mention it) and now am much better, but still not great.
I SI EOD, and neuro symptoms are improving but still there. Hubby often says he doesn't know which wife will wake up each day; one with some energy or one who is going to just sit and sleep all day.
I had some more blood tests last week, and have been called back to see the GP as my TSH has jumped from 2.06 in November to 4.50 ( range 0.40 - 4.00) , FT4 is 13 (10-20) which hasn't been tested before. The pathologist suggests retesting in 3 months.
My question is should I wait 3 months, or push for thyroid antibody testing straight away?
I have been looking on the Thyroid forum and I am getting in a spin! Hypothyroidism looks even more complex than PA.
Thankyou, dear friends. I feel less lonely and alone just reading this forum!
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Oh! I am interested to find out more about the hypothyroidism to be a step ahead of the GP. I’m planning to not get caught out again. No diagnosis at this point. Bracing myself!
I’m not sure if I have the option of private testing here in the antipodes, or if I would ever get to see an endo!
I will ask the thyroid forum for direction. Thankyou
IF you and your doctor suspect hypothyroid AND you have a diagnosis of PA already you should absolutely get tested for thyroid antibodies. Autoimmune Hypothyroid aka Hashimoto's is a very common association with PA. Approximately 40 to 50% of those with PA will also have Hash.
I have both PA/AIG and Hash, oh yes and Sjogren's (another autoimmune disease). These conditions with multiple autoimmune diseases is called Polyglandular Autoimmune Syndrome (PAS).
From my experience, the AIG/PA requires much more management than the Hash.
Yes, get tested now. It's a not so expensive blood test. But think of the bright side... You get to get stuck again! YAY! 🎉🤣
Thankyou, Rexz. I have been half expecting another autoimmune to pop up, so not surprised, but would rather get onto it sooner than later, if that's what is keeping me from re- energising. I guess Hashimoto's is as good as any other!
I just need to have a plan and to write everything down before I go in there so I can make some sense - anxiety/ PTSD often gets the better of me when I'm face to face with the GP and my mind goes blank!
(Isn't skin miraculous the way it heals up after being treated like a pincushion ? )
Lol, I refer to myself to my doctor "your favorite pincushion". I've been stuck so many times I've completely lost count, from IVs, shots, spinal taps. 😜
There is a very good book called Thyroid Power, ten steps to better health. I highly recommend it. This book has self tests at the end of several chapters and the results are weighted based on your symptoms. I copied the self tests, took them and the end score had me as high risk for hypothyroid. I then took these test results and the book with me to my doctor... She then ordered the antibody tests.
your thyroid is weak. you may not feel any difference, but your vitamin absorption would go down. Check your Vit D and iron. B12 decrease could also be thyroid related. Of course, the thyroid hormones keep on going up and down, so you may want to test again before starting any treatment. I must also warn you that increased thyroxine will lead to an increased demand for B12, so you may feel B12 deficient symptoms for some time if you start on thyroid meds. In my experience and as per advice from the thyroid group, thyroid meds should be started only once all your vitamins are in place. Good luck!
Wow! Thankyou for that info. So valuable. Vit D was78 ( >50), Ferritin was 168 (30-300) . I have been pretty wiped out since October, with some improvement in the last few weeks, but some of that could have been the glandular fever, too. Perhaps it was a ' perfect storm' of all three - mono, PA and weak thyroid. 😒
Any viral infection depletes B12, so that is probably what happened to you. Personally, I did not find any benefit of EOD injections more than once-a-week or even lower frequency, but once you are on it, it is difficult to reduce as the body often gets used to it. Reduce it only once all your neurological symptoms are gone and even then, you may feel B12 deficiency symptoms upon reduction
TSH 4.5 is not too bad and should not directly show any symptoms. The main problem occurs because of depletion of vitamins and minerals. Vit D is a bit low and you should supplement. In fact, low Vit D is said to be one of the reasons for a weak thyroid and Vit D supplementation can often revive the thyroid gland. You can safely take about 5000-10000IU/day or 60000IU/week.
Ferritin is fine but keep a tab on it with regular tests. Iron is more of a problem for menstruating women, but I got iron deficiency as a male because of a weak thyroid but it resolved itself once my thyroid meds were in place. I had to take iron tablets for some time though. Also check your folate, although B12 deficiency is the most serious of all mainly because of the neurological implications.
Serum folate was >54.0 nmol/L. I have been supplementing that.
I have been taking a small amount of vit D, but can boost that. I was hoping to get some more sunshine this summer, but I have struggled to get out and about, and now it's autumn.
I think serum folate is good, mainly because of supplementation. You can continue with 400mcg/day. More than that is not required with this level of folate.
Vit D is underestimated and there is a big connection between Vit D and the thyroid gland. 78 Vit D is barely cutting it and in fact is the low cut-off mostly used by most (50 is way too low). Ideally, it should be 125 nmol/L or more. You may wish to check this website:
I’m also in Australia. There is a private lab called “Clinical Labs” where you can download a pathology request form, walk in to any of their clinics without an appointment and draw bloodwork for many tests. The only thing is it’s not a free service, I only wish to have discovered this clinic early in my PA diagnosis when I was severely symptomatic and not receiving sufficient treatment. This company offers the MMA and homocysteine test that my GP said he couldn’t perform. You can also do a complete thyroid panel test to include the antibodies.. Website lists items with price list. Well worth testing anything you wish and then show your GP the results.
Thankyou GoneWithTheWind1972, that could be very useful. I am about 300 km from any of their clinics, but if I needed to I could search one out when I am next in the city if the GP pushes back on any tests I ask for.
I’m in Melbourne, since I’ve been made aware of “Clinical Labs” I notice them everywhere. Since you’re recently diagnosed with PA, as others have mentioned before, we are all very different with symptoms and frequency of treatment. You know your body better than any GP and information is power to you. I too have Hashimoto in my family and I also have the antibodies but must be constantly vigilant with regular tests. Have you also considered joining the Pernicious Anaemia Society (separate from this forum) to further understand PA? Worth considering this to gain more insight into how systematic and damaging a B12 deficiency can be to the body.
Very best wishes with the mono! I had it and it took a really long time to go away (maybe 6 months). I had to set up an obstacle course to get to my alarm because if it was too easy to turn it off, I went back to sleep. I got to where I could tell my temperature without a thermometer because I had a fever so often. I was so happy when it cleared up. Take it easy on yourself until then. There was a point when I still thought I had it but it turned out to be some other things instead. It does not hurt to check everything out.
Thankyou for your good wishes. It has been awful! And I have learned not to get too optimistic when I have a few good days, because it tends to swing back on me without warning. This last week has been noticably better......5 months in.
(I am feeling very sheepish for being impatient with my son when he had it as a teenager )
On the positive side, I never would have learned so much about PA in such a short space of time if I hadn't had to navigate this!
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Now what?
Fainted yesterday, very out of things but don't know why...what more care can one take? 
Advice on what to do next
IF Antibody test back - so what next
on b12 treatment, when start folic acid?
