1 1/2yrs of treatment and I’m getting worse again.

[lb9999]

Need advice. I’m concerned. I was diagnosed with PA (lack IF via blood test) a year and a half ago. I have been on daily Hydroxo injections since. I started at a high concentrated dose (I’m in US) of 5,000mcg day and dosed it down to 1,750mcg day. I maintained this dose for 6 plus months and still struggled with symptoms but was much better. I was back to living mostly normal.

I headed downhill again and I have no idea why. I feel similar to when I was diagnosed. The burning all over my body is awful at night, depression (never had this before PA), muscle twitching, dry eyes, mental slowness, heart palpitations, abnormal menstrual cycle, dry skin, hair falling out, weakness, tiredness, headaches, aching, heart palpitations, not much appetite, etc. I’m worried it could be something more serious (MS) but thus far nothing indicates this. I’m really suffering and very depressed. Also, I was on Nitrofurantoin for 1 month (several months ago) because of antibiotic resistant UTI. I

Resins for going downhill? Expired Hydroxo? taking Nitrofurantoin? My specially compounded expired a couple months ago. I also used concentrated hydroxo (5000mcg/1ml). Could one of these items be causing this? However, I have kept my multi use vials in the freezer until use and then keep them in the fridge as they are being used. I also have a backup of apohealth (1,500mcg/1ml) that I have recently started using (last several days). I really feel like I’m wasting away.

Also, wondering if I’m deficient in another vit or mineral? I have a family history of hypothyroid (drs haven’t said I have this yet) and my ferritin levels have always hovered around 30/40. Vit D was high a few months ago 117- so stopped that for a while. I recently started supplementing with folate and B6 and Iron. Also, have been purging my body of folic acid. I have hyperhomocystemia and the only way I can bring my homocysteine down is by not eating much folic acid. I have confirmed this agin and again with bloodwork.

As a homeschool Mom to three boys I’m very discouraged. I’m 42 yet old female. I eat well, rarely drink alcohol, exercise when I feel well.

So far drs have no answers. I had a full MRI initially and recently had lower CT, MRI and lots of bloodwork. When my blood was drawn recently it was very dark, maybe indicating iron def? Everything always shows fine. I’m scheduled to see GI, more neruro appointments and now they have me seeing a cardiologist for heart palpitations and abnormal ekg. I’m so sick of drs opponents and just want to be well for my family.

I have used this site considerably for hope and guidance. Thank you!

[Narwhal10]

Hi lb9999,

I am so sorry to read. I do not have answers to your questions just know you are heard. It is good that you know there is family history of hypothyroidism and 1 month’s supply does not help the gut microbiome.

It is responsible for metabolising vitamins and minerals so it could be a case of being deficient in B1, B2, B3 etc.

Do you know if you have a mutation in the MTHFR gene ?

Wishing you the best

[lb9999 in reply to Narwhal10]

Thank you for your response!! I’m almost positive I have serval mutations of MTHFR. My Mom, sister and I always have high homocysteine unless we have low folic acid and supplement with folate.

[Narwhal10 in reply to lb9999]

Hi lb9999,

Like MrsTuft says Nitrofurantoin can be particular problematic for us. My knowledge of the MTHFR and MTRR mutations are rather limited. You know your immediate Family History and you are most probably very aware of the American pharmacist whose initials are S. C. Plus, their research and their books.

Anyway, wishing you well.

[MrsTuft]

Nitrofurantoin is what caused my severe crash that left me temporarily housebound, having been previously well on 8 weekly injections. It’s not meant to be given to people with B12D and not for more than a three days course. I had a terrible infection post surgery and was on it for 17 days and was left unable to walk. 2.5 years later of daily injections and I’m getting there.

[lb9999 in reply to MrsTuft]

Wow! That is awful. I’m so very sorry. I had no idea before I took the Nirto that it could be a problem. Although, my crash occluded a couple of months after taking it. I’m thinking this coupled with the expired Hydroxo may have been the issue. I started injecting Apo Hydroxo 1,500mcg twice per day the last couple of days and I’m feeling a lot better.

I also asked my GP to refer me to endo and she was pretty annoyed that I asked, but she gave me a referral regardless.

Thank you both! It has been immensely helpful reading others’ experiences on here. This is a crummy disease, you truly feel like you’re dying. I’m thankful it can be reversed, even if some of the symptoms never go away.

God bless you two. Two times in the last week this verse came up by happenstance. It encouraged me.

“When you pass through the waters, I will be with you; and when you pass through the rivers, they will not sweep over you. When you walk through the fire, you will not be burned; the flames will not set you ablaze.”

‭‭Isaiah‬ ‭43‬:‭2‬ ‭NIV‬‬bible.com/bible/111/isa.43....

[MrsTuft in reply to lb9999]

Yes it’s SI Pascoe 1500mcg twice a day that’s brought me back to life too. Stay away from Nitrofuratoin! And yes expired Hydroxo is a lesson for is all. So easily done. I hope you continue to feel better. X

[lb9999]

Thank you, Mrs Tuft! I hope you keep healing as well and the terrible symptoms became just a memory.

[PaintLadie]

Make sure your b12 has not lost potency. I've had this happen to me on Methyl and Hydroxocobalamin. two different circumstances like 9 years apart.

I was getting my methyl cobalamin shots at the doctors office for the longest time. I kept going back telling her how awful I felt. Soon I was barely able to walk. She sent me to a neurologist, but not before finding out that the b12 they had been giving me expired. The neurologist was a waste of time once I got back on good b12.

This also happened to me with my rx Hydroxocobalamin that I was getting at the pharmacy. I started getting the b12 from germany before I had run out of my rx. I had monster symptoms and felt horrible, but was still using the rx B12 because it still had not expired. I increased my dose and noticed when I took my rx I felt no change, but when I took the hydroxo. from Germany that I ordered I could feel the effects pretty obviously. So eventually it was too obvious and I threw out my remaining 3 vials of rx b12.

[lb9999]

Thank you for sharing your thoughts! I’m sorry you have had to go through that.

I think mine as likely because my hydroxo was expired. I’m starting to get a little better on apohealth 1,500mcg/ twice per day. Although, I’m experiencing a bit of burning and itching skin and a lot of muscle twitches.

It’s crazy that we have to be in sync with our bodies and try to spot all the minor changes. It’s like we are constantly sleuthing and investigating to keep ourselves healthy. 😩