I also was diagnosed 4 days ago with supraventricular tachycardia and have suffered from hypothyroidism for about 13 years. I finally feel like I am not crazy and all of this symptoms are not in my head. However i feel really scared since I don’t know what all of this diagnoses mean for quality of life.
I am 35 years old, mom to 3 little kids and work full time. I feel like I can hardly keep up. Any advise and positive REAL outlook to all of this will be so much appreciated since I can not wait to feel like myself again. I am constantly tired, dizzy all the time, feel lightheaded, the room spins, my memory and concentration are horrible and its affecting my job so bad. Feel like i have pains all over my body, headaches, bloated stomach, diarrhea on and off, I feel like i only exist in my own little world and nobody can relate. I have never been depressed but i feel like this is getting the best of me now. I really don’t know what i expect from joining this group, but maybe just somebody that gets IT...
thanks for reading! =)
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Azushn
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You will feel better very soon! But also be patient because some symptoms take longer to resolve than others. This is a wonderful supportive place filled with very knowledgeable people. So happy for you that you have been diagnosed. My diagnosis came a month after my youngest left for college and I will never know what the years with my children at home would have been like if I had been diagnosed a decade or two earlier...
Sorry to read you are having a hard time but there is hope.
I do not have a PA diagnosis but was symptomatic for B12 deficiency for many years including many neurological symptoms and could not get treatment. After finally starting treatment a few years ago, I am now the best I have been for years and still hope for more improvement.
Some people can feel worse for a while when they start treatment; I think of it as the nerves waking up, but stick with it.
Links to some B12 websites
PAS (Pernicious Anaemia Society)
Based in Wales, UK. Has members in other countries.
Also important to ensure your thyroid is being optimally treated. Does your Doc test TSH - FT4 - FT3 ? Do you have Hashimotos ?
As you have PA it is possible your levels of Folate - Ferritin - VitD will also be low. So have them tested if you can ... If you are taking Levo/Synthroid - optimal levels can help the conversion to the Active hormone T3 - needed in every cell of the body 🎁
Yes, I do have hashimoto's, they are checking on that too. They also told me to take folic acid tablets and I had 2 iron infusions about 3 weeks ago before i was diagnosed with PA. I was extremely low on iron too.
Also, I am trying to give myself my 1s injection. However I dont know what type of needle to get, does it have to go into the muscle or just fat?. Where is the best area? Do i put the whole needle in?.... pls help. I have never done an injection before.
For good information about Hashimitos take a look at the website of Izabella Wentz - an American Pharnacist who has Hashimotos. You can sign up for her Newsletters to keep well informed.
Are you taking thyroid medication ? So much self-help with Hashimotos with diet and supplements. Test VitD too - good around 60. Keep all your test results in a file so you can monitor your own progress - write on the results sheet - how you are feeling - the meds and supplements you are taking. So easy to forget.
I inject into the upper outer part of my thigh. Make sure you are sitting comfortably on the bed ( on a towel ) with legs well supported so you can relax. Lots of videos on YouTube - choose with care. Your Pharmacist should be able to advise you about needles. Others here may have suggestions. Reading other posts too ...
Heart issues can be linked to both Thyroid and to low iron-Folate-B12 and VitD. The FT3 thyroid test is the most important as it is the Active hormone needed in every cell of your body.
I have Hashimotos and a B12 issue due to surgery. I am also a member of Thyroid UK here on HU - many of us have both thyroid and B12 issues.
You have a lot on your plate so take it slowly and rest when you can - if possible 💐
Hi Azushu, I have been diagnose for nearly two years. In a nut shell it is difficult in the beginning but very gradually you will improve and symptoms come and go to varying degrees. Plus you will read so much here that you will try different things, the people have so much knowledge I have learned so much. I manage to work as a nurse and do have great days, good day and the odd rubbish day at times. My main problems in the early days was my balance like the ground was moving, tiredness,and what people describe as brain fog...memeory issues. There was so much more as I had anxiety too, infact I was sure I had a brain tumour, which is funny to think back. Symptoms come and go, I had a great day yesterday but now today I feel exhausted. In general I have mainly good days. I have VitB12 jabs prescribed 8 week but now buy my own and inject inbetween, I take a multi vitamin, plus Vit D3 daily and oral 1000mg x 4 daily, which I buy. My Dr prescribed folic acid 5mg and I take it every second day. It's taken a long time to sort this out but I am guided by this site. Incidentally, I know we don't absorb a lot from oral b12 tablets but I feel every little helps. It's very is early days for you Azushn and it will be trial and error but your symptoms will gradually improve, in 6 m you will think back as symptoms improve and change, and the spinning does stop in time. I wish you well and please let us know how you do.
Thanks so much for all your coments. I really appreciate it.
Question: has anyone of you been diagnosed with autoimmune atrophic gastritis?.
I am so scared of th possibility of cancer, since this is how this all started, constant stomach pain and on and off diarrhea. I am scheduled to see a gastroenterologist soon to have an endoscopy an biopsy.
Hi, my problems (pain all over, muscle weakness, joint issues) also started after several cases of gastroenteritis/food poisoning. I already had a very sensitive stomach/gut, so I suppose the food poisonings were the last drop.
I've kind of diagnosed myself with malabsorption as I got so much better going gluten/wheat free. This seemed to reduce the inflammation in my gut so nutrients could be absorbed.
I've had 2 gastroscopies which revealed white dots in my stomach. Dr said it's precursor to stomach ulcer ("not to worry" - now I wonder if this was the atrophy) and gave me a proton pump inhibitor, which made me sicker (which could point to not enough acid instead of too much). Colonoscopie didn't even find microscopic colitis. Was told again everything was fine. But I am suffering now badly with stomach/gut issues + all the other problems so I'm not fine!
It is my experience that most gastroenterologist are ignorant when it comes to PA/atrophic gastritis. I was never even tested me for PA, although all my blood results pointed in that direction.
Now seeing new gastro and will have the blood tests done for PA (and gastrin levels) when I'm back from travels.
At one point dr was worried about possibility of cancer, but again I was cleared. I think it's rather rare, but the scope + biopsies should put your mind at ease.
My first visit to the GP (almost exactly 5 years ago) was because I was exhausted, had back/hip joint/ groin pain and daily diarrhoea. I did not know if any of these complaints related to the others, but was by then unable to stand up straight at the bus-stop on the way to work through pain and exhaustion.
It took a while to rule out various things but bowel cancer was ruled out first. I hadn't considered that as a possibility. A year later, my B12 deficiency was discovered- I knew nothing about this vitamin. The GP said that I'd need a course of 6 loading injections booked as soon as possible. I only found out that I would then need injections every 3 months for life from the nurse, because I asked "What happens next?" after my last loading injection. That's when I started looking it up- and joined the Pernicious Anaemia Society. I had many other B12 deficiency symptoms, but hadn't tied them together- and no-one had asked me.
I have had to balance B12, ferritin, folate and vitamin D problems by self-injection and daily multivitamin & mineral supplements, sometimes additional supplementing on top. Thankfully, thyroid managed to stay okay.
It takes a lot of research; even if your GP is a good one, not that much seems to be recognised or acknowledged regarding B12 deficiency or symptoms, because training is limited. What you need is a GP who is willing to investigate a little bit and listen to what you have learned by valid research, look at you and see the effect treatment is having, and regularly test supporting vitamin and mineral levels. Good prompt referrals help if needed, because waiting times for haematologists/ gastroenterologists/ neurologists etc appointments can be lengthy, initial appointments often over 5/6 months. Like Heidiv , I have been disappointed with the shocking lack of even basic B12 awareness. This more than any other is the reason you need to have done your own medical research.
About time for some good news: if you join the Pernicious Anaemia Society, you will have access to a video on a conference lecture (Dec 2019) about the latest research, because PAS are leading the way on this, alongside some other lectures from the same conference which will explain much about B12 deficiency and why PA is so difficult to diagnose and treat effectively.
Have a look- there are real breakthroughs happening right now. Bit at a time, Azushn -
anything you want to know, there is always someone to help on here. It's how I got to this stage.
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