PA and Hashimoto

[olga67]

Hi everyone,

I’ve been ill for 14 years. It started gradually with only fatigue and progressed to full spectrum of symptoms like pains, dizziness, shaking, tremors, weakness, tachycardia, weight gain, insomnia, feeling cold all the time, numbness and more. Finally, in November 2018 the neurologist diagnosed me with B12 deficiency (145) and referred to Gastro, which found that I have Pernicious Anaemia. I started SI hydroxocobalamine daily along with iron, folate and multivitamin supplements. After three month I did not feel much better overall and on top of that got horrible hot flashes and night sweats. My GP did the TSH an FT4 and it came back Subclinical hypothyroid. TSH 9.8 and FT4 normal. I was put on 25 Levo. The hot flashes went after two weeks but rest of the symptoms remains. I asked my GP to increase my Levo, but my TSH was ‘normal’ (2.8) and she refused. Than I’ve noticed on the labs from the Gastro( January) that mine FT3 was 3.6 range 3.9-6.8 and ordered a bunch of test privately.

Latest labs

TSH 2,87 mu/l 0.27-4.20

FT4 14.03 pmol/l 11.60-21.90

TT3 1.71 nmol/l 1.23-3.08

Anti-TPO >600 ku/l <34

Anti-TG 297 iu/ml <115

Total B12 >1500

Active B12 >150pmol/l >60

Ferritine 126 mcg/l 15-150

Folate >45 nmol/l 10-42

Vit D 86 50-150

I’ve ordered extra FT3 and Rt3 , awaiting results next week. I upped Levo to 50 and booked an appointment with the Endocrinologist in June. This is the second Endo, I ran away screaming from the first one as he was only interested in mine labs, wanted to take me of the Levo all together and would treat me if mine TSH > 10.

I feel very ill and desperate despite of daily B12 injections. I don’t work and cannot drive because of mine symptoms. I can only walk for 15 minutes before my legs give out. I was a very active and athletic before and it is killing me just sitting at home doing nothing. I am a Christian and the prayer is the only thing that is keeping me sane.

I’ve posted the same story on Thyroid UK.

Please, anyone, advise

[Meblue]

I’m new to all this too but I think the long term people on here will advise you. They have all said it takes a really long time to see any improvement if you have been deficient for a really long time. I think it sometimes takes years to see improvement so they will probably tell you to stay with the injections until you improve.

[olga67 in reply to Meblue]

Thanks Meblue, it is encouraging to see that somebody cares.

[Meblue in reply to olga67]

I understand what it’s like to not know what is wrong. I’ve yet to figure out what my problem is and I too used to be active and had a life but now I’m not sure what is going to happen to me from day to day. It’s scary to wake up every morning and not know what new thing I’m going to deal with or if I’ll even be able to walk.

[olga67 in reply to Meblue]

I am sad to hear about your struggle. One thing I’ve learned over the years though, never give up.

Be persistent and trust your instinct. This forum is full of knowledgeable and understanding people, you are not alone. My mother used to say that all storms in life are temporary, hold on.

[Meblue in reply to olga67]

Thanks, I’m trying. I’m not sure what to do as my b12 level was at 560 and that is not even close to deficient even though I’m sure this is my problem. Going to try to get MMA testing this week and another blood test to see if the first was wrong. No doctor is going to give me shots with a level that high.

[olga67 in reply to Meblue]

Hi Meblue, what are your symptoms?

[Meblue in reply to olga67]

My legs are pretty much my problem. It’s hard to describe but they started out just feeling like I had restless leg syndrome - the muscles just felt like they were being overstretched when I would sit down. Now they are worse - it’s all in my muscles - they are tingling and sometimes numb and the muscles almost feel like they are being eaten away. I don’t have any cognitive stuff like memory and foggy brain. I thought for awhile I had fibromyalgia. The one thing that really has me set on this is the last couple months my tongue has been sore.

[olga67 in reply to Meblue]

Did you see a neurologist or had you thyroid checked? Did you consult any specialists?

[Meblue in reply to olga67]

A while ago I tried, but I had a B12 test back then and it was in the normal range. They put all my symptoms as due to anxiety and stress. I have been under extreme stress in my life for the past few years so I started to believe that was true. Didn’t want to be on antidepressants. Now everyone just tells me that’s what this is. I stopped talking about it to my family because they don’t believe me and think it’s depression. I know it’s not anymore because there is no way stress can cause this type of feeling in my legs. I’m all alone trying to figure it out because nobody will listen.

[olga67 in reply to Meblue]

I know what you mean. 14 years ago I was in the similar situation. In my opinion you need to see a neurologist at least and may be some other specialist. Your problem might not be B12 but something else.

Sometimes, if you focus only on one problem you overlook the rest. I know because it happened to me. If you are not mobile enough, ask your family, friends, members of the local church or a charity organisation to assist you. I am sure that there are people that would be glad to help you in many ways. You need someone nearby, who can listen to you and understand what you are going through.

[Meblue in reply to olga67]

Thanks, I appreciate the help. I usually just sit and cry when I’m by myself. This site has helped because I can’t talk to anyone. Not knowing what is wrong is the worst part.

[Gambit62 Administrator]

to be honest I think your problem is likely to be that the thyroid is undertreated. Nothing in the above really pointing to B12 which you actually seem to be treating yourself. The symptoms overlap a lot.

[olga67 in reply to Gambit62]

Thanks for your reply, Gambit, I feel the same way. I have tried methyl injections for two month but it did not make any difference. The problem is that Gastro blames mine thyroid and the Endo blames PA. It is very confusing so, I go by mine instinct and the help from you guys. It is so hard sometimes to fight the medics and stay on top of things while being very ill.

But I can see that my situation is not unique.

[deniseinmilden in reply to olga67]

Hi!

I'm sorry that you are still feeling so rough. I had that to start with too and it's no fun, especially when you thought you would do the right things and feel better!

Don't give up looking - there is a solution out there, it just might take some trial and error to get there. It can be a good idea to keep records of your symptoms and inputs when your brain is foggy so that you can look back and see if there is any correlation.

I'm sorry I can't help with the thyroid problems but the guys on that forum are hugely knowledgeable so you'll probably get more help from them.

I agree with Gambit62 and think that - or even something else - might be your problem, but I have given the nutrition side a bit of thought too...

As I read your post I was wondering about maybe trying methyl somewhere and was going to suggest trying methylfolate with hydroxocobalamin but in your last reply you said you tried methylcobalamin which should have done the same thing. Saying that, some people do better the other way around. I have heard that some people need folinic acid instead of either folic acid or methylfolate too.

The only other thing I am wondering about is your potassium and magnesium levels. You do have to be careful with these as too much is as bad as too little but my B12 won't work without supplementing them and if I don't get enough potassium I feel very down.

As well as getting tested it would be good to Google them to see the effects of deficiency and excess and what dietary sources you might like.

Be aware that the tests only give you an immediate "snapshot" reading as these levels change in your body quite quickly with diet and exercise - but if it says you are low (or otherwise) it will give you an idea.

Oo - and vitamin D! This can have very similar symptoms (but can come with bone pain and insomnia too) and is also needed to make everything else work. If you are low and do supplement it is important to balance your D3 with K2, unless you are on anticoagulants.

See what you think but it could be worth getting your calcium level checked as if this is too high it will interfere with the balance of your other minerals and can point to a parathyroid problem.

Autoimmune conditions often come together so it would also be good to rule out other options of these too.

Above all good luck and please ask again if you haven't got anywhere. There are lots of helpful people here but they don't always see all the posts.

[olga67 in reply to deniseinmilden]

Hi, deniseinmilden, thank you for replying. My Gastro ran extended bloodwork, urine and stool and did a stomach US in January. According to him I do not have parasites, HIV, hepatitis, coeliac and my liver and kidneys are fine. All electrolytes were in range, however may be not optimal. Vit.D is 86 range 50-150. Should it be higher? I do take extra potassium with food, like coconut water. I’ll try some extra magnesium and calcium. I am going to see Gastro next week, so gonna ask him to repeat the blood work. I went gluten and diary free a month ago. Mine mind is definitely sharper than six month ago when I struggled to put a sentence together, so B12 is doing something.

As far as B12 and folate concerns, I’ve tried all kind of forms and combinations. It feels all the same to me. The Neurologist that found my B12 deficiency also did an MRI and it came back normal.

I am not giving up and thanks to the info and support on this forum I am gonna get to the bottom of this.

[Pinklady95]

Exactly how long have you've been SI though. I also was diagnosed with PA in December have been self injecting since Jan. 22nd of the year. From what I've been told is that it takes at least 4 months to start rebuilding New Red blood cells and at least another two months for your body to start doing repairs. I feel horrendous still. It took years for your body to become I'll so it may take quite a while for it to do repairs.

[olga67 in reply to Pinklady95]

Hi Pinklady, thank you for sharing. I SI daily for six month now. I felt some improvement in the beginning but after two month everything came to a screeching halt. Soon after, I’ve got hypothyroid symptoms and the things started to go south. I think that B12 injections put a huge metabolic demand on my weak thyroid that could not handle it. What I am trying to say is that I was probably Hypo for a long time and B12 just reveal that. But I could be wrong....

[robert1957]

Hello

[olga67 in reply to robert1957]

Hi there

[robert1957]

hello Olga please research the benefits of drinking celery juice also research the author Anthony William (medical medium) he gives a different approach and uses foods to heal from all chronic illnesses also research deficiency's in magnesium and symptoms of magnesium deficiency also research vitamins d3 k2mk7 also if you are taking b12 research the types adenosylcobalamin and methylcobalamin goodluck

[olga67]

Thanks, Robert1957, I’ll definitely look in to that.