I have a friend that has been suffering for a long time with digestive issues - on ometprazole permanently. Weight gain. Fatigue. Always cold. Joint pain. Leg pain. Pins and needles. The list goes on. I convinced her to get her bloods done.
Some years ago she had half her thyroid removed due to a goitre. She is having b12 injections. Last one was 4 weeks ago.
She is seeing a rheumatologist on Monday and I thought I’d post her results to see if anyone had something that might seriously get her some help? I would be most grateful as it’s so horrible watching her try and function when she’s so obviously unwell. There are a few things I can see but I hoping someone may be able to cast an educated eye over it for us
Keeping my fingers crossed. X.
Oh and it was a fasting, early morning test with no supplements.
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Sometime ago we thought maybe parathyroid issue but doctors say no. It’s difficult to know that although the calcium is above range is .13 enough to push them that way again?
Also I wondered how quickly B12 is used by the body as with injections about 3-4 weeks ago and no more scheduled foranother couple of months, strikes me it’s already dropping like a stone. Or does that happen?
Thanks. I will. From what I have seen anything over the top range is Hypercalcaemia it’s just a case of finding out the cause. I’m hopeful that they will take it seriously and have told her to insist and sent her the Nice guidelines so 🤞🏻
It’s so shocking when you wish to be told you’re ill just so you can’t start to hope you may feel better. It’s gone on for such a long time if they say they’ll test her further we will high five each other! Utterly ridiculous!!
Presumably she doesn’t have pernicious anaemia, but “just” low B12?
Low B12 is common hypothyroid symptom
As she has B12 injections it’s recommended also to supplement a good quality daily vitamin B complex, one with folate in (not folic acid) may be beneficial.
This can help keep all B vitamins in balance and will help improve B12 levels between injections too
Igennus Super B is good quality and cheap vitamin B complex. Contains folate. Full dose is two tablets per day. Many/most people may only need one tablet per day. Certainly only start on one per day (or even half tablet per day for first couple of weeks)
Or Thorne Basic B is another option that contain folate, but is large capsule
If taking vitamin B complex, or any supplements containing biotin, remember to stop these 7 days before ALL BLOOD TESTS , as biotin can falsely affect test results
She doesn’t supplement with vit d and I will make sure I mention the b complex. With regard to PA, nope, they haven’t told her anything so although she has thought maybe that was why she’s felt so bad she hasn’t found the strength to ask why she is so low or anything.
I’ve written some things down for her that you’ve mentioned as she’s going to this rheumatologist whilst I’m at work so I hope this can help her this time.
It’s the same old story really. When you present with so many non specific symptoms everyone thinks your a hypochondriac. She thinks that too. I know she’s not. I also know these symptoms are real to her and we all know how debilitating these sort of problems can be.
I’ll post what happens when she sees this doctor. Thank you Slowdragon. We both really appreciate your input.
You are a good friend Winnienoodle. It really looks like your friend may need more frequent B12 injections, which are often very difficult to persuade a GP to sanction, so many of us have to source and self inject to be able to reverse any neurological symptoms quickly. This research helped me understand my progression over the years from Hashimoto's - gastritis - PA.
Apparently, some 40% of those with thyroid disease go on to develop PA/B12def. This research explains the very subtle progression of Hashimoto's autoimmune thyroid disease to gastric atrophy, to eventual Pernicious Anaemia:
"Clinical signs of this disease appear after several years of its onset, when the progressive reduction to disappearance of the parietal cells leads to atrophy of the gastric mucosa, impairing the absorption of iron, vitamin B12 (cobalamin), folate, and other nutrients (22)." "In the initial phase of the atrophic gastritis, the damage of parietal cells can lead to iron deficient microcytic anaemia as the only clinical sign (38). When the gastric atrophy becomes severe and/or the IFA is no longer produced, even the absorption of cobalamin becomes compromised. "
Thank you so much Polaris 😊. That’s very good of you and really interesting too.
I read the gastric link so far. She has definitely suffered there. They are monitoring that for her so that is something. 2 endoscopies in just over a year. Awaiting results of the last one now.
As for being a good friend, I do tell her that 🤣 but i think we all try to treat people how we like to be treated. This forum is testament to that and the very fact that you so kindly replied to my call for help too. I thank you very much.
I will go back and reread the link and take a look at the others too. I will also pass them on. Really helpful.
Hopefully I will be able to post how she got on soon.
This was found on my endoscopy years ago and I was given the high dose antibiotics - no follow up though - and I wish I'd known more about B12def. then to check that it had, in fact, been eradicated......
Sometimes helps to take someone close for support to a medical consultation.......
She has been tested for it and it was clear. But I have another friend who tested positive for it though and had high doses of anti biotics ages ago but you have made me think of her actually as she’s been struggling with the menopause for years. I mean years. I keep telling her it can’t still be and the other day she mentioned the doctors just give her different types of hrt but haven’t run bloods since she had a hyperthyroid episode over almost 20 years ago!!! Astounding isn’t it?!
Thanks Polaris. I will see check that she has now been to the doctors. Strange you said that. Makes me think fate take some weird old turns. Definitely need to take her in hand too! x.
I've learned so much from members of this forum about asking for copies of blood tests, etc, and finding from research that what GP says is fine is not at all !
It is 😊 and I can definitely see how brilliant you lovely lot are.
Whilst I don’t want to go off on a tangent and moan about them I would say that my experience with GP’s has never been good. Mind you I’ve paid for rheumatologists and gp’s for direction and they’ve been dire too so with one foot on my soapbox...there is not a ‘one size fits all’ stepping back down now 😊
I expect you’re right. We have chatted off and on for a while but she is a force to be reckoned with and she keeps putting it down to other things ... stress, age, menopause always menopause. But I will battle with her properly this week.
Thanks Slowdragon. I always appreciate your input. Most grateful x.
It was on this forum that I first learnt about low stomach acid (hypochlorhydria). Very few doctors seem to know anything about it, but many of us have it. Have a look at these links.
Omeprazole is a drug that reduces stomach acid. You need acid in your stomach so that you can absorb nutrients. Without the nutrients your health gets worse. I met someone who took it for so long that she ended up with pernicious anaemia. Could this be what is happening to your friend?
I was prescribed Omeprazole when my hiatus hernia was diagnosed. I looked up the Patient Information Leaflet online and decided that I would check my stomach acid before taking that. I used the bicarbonate burp test as a simple check and it definitely came out as low acid. Since then I've had a test as well which confirmed it. There are various things you can do to raise it such as apple cyder vinegar and there are other options.
Has your friend been tested for food intolerances? These can cause stomach problems.
You could be right!! Thank you for your post. Strangely I saw her this evening and she showed me some other tests from only 6 months ago and they were so much better. We have had plenty of conversations about long term ometprazole being no good but they seem to dish them out like sweets and just keep telling her to take them.
I will certainly tell her to mention it as well. I do so hope she gets a decent doctor this time. I know they’re out there but if I did my job like some seem to that I have encountered I would certainly be out on my ear.
Thank heavens for you all!! I’m so glad I clicked on healthunlocked.
It’s a rheumatologist that’s she seeing, not a gp and I wouldn’t ordinarily say they will help but this one ordered bloods and told my friend that sometimes people need some t4 to make them feel a bit better even if it doesn’t show!! Don’t fall of your chair in amazement everyone lol.
Just a quick update..... friend saw rheumatologist today. No to thyroid atm but more tests and xrays. Medication for RA and folate even though they aren’t assuming it is this but all antibody blood tests requested now. I feel very positive that they are going to help her now so 🤞🏻🤞🏻🤞🏻🤞🏻 for something more concrete in 3 months time. Thanks everyone for your replies x.
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