Help with my mum again: Hi guys My mum has had a... - Thyroid UK

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Help with my mum again

Saggyuk
Saggyuk

Hi guys

My mum has had a serious problem with her stomach as described here:

healthunlocked.com/thyroidu...

I think we've definitely ruled out gall bladder so now looking at pancreatitis due to the few things she can eat without problems or other more unspeakable things.

She finally got the appointment with the consultant - after three months but he did little apart from finally action the endoscopy/colonoscopy which they knew she needed anyway and yet another scan - dates not yet confirmed so worried about long this is now going to be!!

Obviously she's now on an extremely restrictive diet and the massive weight loss has stopped because of it but is still losing weight slowly but surely so I got a whole heap of tests done to see where she is with everything and to see if anything pinged up of interest.

HBA1C and uric acid were fine. Sex hormones showed post menopausal as expected apart from over range LH which I will ignore and Blood count all fine except with the only difference to the last being that MCV and MCH have moved to top of range.

Her thyroid results are as follows:

THYROID STIMULATING HORMONE *0.01 mIU/L 0.27 - 4.20

FREE THYROXINE 22.000 pmol/L 12.00 - 22.00

FREE T3 5.31 pmol/L 3.10 - 6.80

She had not taken her thyroid meds that morning as usual so have told her to reduce levo by 25mcg. With the weight loss etc, I would rather her be slightly hypo than high anyway.

Her iron panel cam back as:

IRON 7.88 umol/L 6.60 - 26.00

T.I.B.C *39.68 umol/L 41.00 - 77.00

TRANSFERRIN SATURATION *19.86 % 20.00 - 55.00

FERRITIN 149 ug/L 13.00 - 150.00

Obviously low in iron but won't be treating this as likely caused by whatever is going on and clearly won't help.

Her liver function and protein test were okay although proteins are low in range as expected on diet although she is eating a tonne of fish.

Cholesterol tests were all fine apart from under range HDL but I suppose this is to be expected but again, is eating a tonne of fish but probably not enough in general over the course of a day and very low fat otherwise.

Her kidney function tests were okay apart from sodium has gone over range. She is not eating any salt at all on her restricted diet and not eating enough. Going by the rest of her kidney results, I will assume nothing to do with her kidney and doesn't seem dehydrated.

Magnesium is over range - no reason for this.

Also calcium is showing spot on at 2.43 however this is unexpected - she's always been low in range and has stopped all dairy etc so theoretically she should still be low in range or lower even

Very unexpectedly - these came back:

ACTIVE B12 *208.000 pmol/L 25.10 - 165.00

FOLATE (SERUM) *2.7 ug/L 2.91 - 50.00

Her B12 levels last checked were fine and she stopped all supplement 4 months ago when her stomach started having problems and her results were no where near top end at the time. Where she's on a restricted diet, she's been gorging on salad, veg and fruit all day every day and is eating nutribix every morning which is fortified in folate 100 rda. so I do not know why her folate is now under range as for once, it shouldn't be and it's even lower. will explain the mcv and mch getting higher and could be making the iron situation worse but I can't work out whether to treat this or not until we get some answers as the relationship between folate and other stuff is not clear and maybe a reason for it. Do you think I should get her to take some or leave until we have some conclusive answers???? Maybe it provides a clue as to what part of her stomach might be good to have a thorough check in -upper third of lower intestine and apparently abnormal jejunal structure or function may reduce folate absorption??

Vit D was 57.9 - am going to leave this for now until work out what's going on especially where calcium is increasing regardless.

So obviously her electrolytes are going a bit whacky with all over range or increasing so am tempted to get these looked into further, I have a feeling potassium might be really low and can't find anything that explains high magnesium and high sodium at the same time and really don't think her kidneys are a problem in themselves at the moment.

I'm going to get her adrenals looked at properly also but I'm sure they are being overworked at the moment anyway.

Obviously her B12 and folate make little sense but I have no idea what to do in regards to the folate.

Obviously, I can see certain things which may be an issue so I'm going to step in now and chase these appointments as it's taking far too long for comfort now.

Just wondering if anyone else has any further suggestions.

Many thanks, Sarah :-)

33 Replies
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Fat has nothing to do with cholesterol. In fact, diet in general has little to do with cholesterol levels. But, low-fat diets are not good. The body needs good fats.

Saggyuk
Saggyuk
in reply to greygoose

Hi Greygoose. Apologies, I meant I would expect these things to be low due to her restricted diet at the mo. She cannot digest any fat under any circumstances with the exception of coconut oil and fish. It sends her to bed for a day in agony and she lost over 3 stone in 4-6 weeks trying to eat normally. The fat appears to just come out undigested in her poop. She's only on this diet to stop the pain allowing her to eat at least some stuff and to stop the mass weightloss which it has stemmed for now.

I'm not at all saying this is healthy but little choice at the moment.

greygoose
greygoose
in reply to Saggyuk

I see, poor lady. I wish there was something we could take to raise cholesterol - I'd take it myself! - but there isn't.

How did they rule out gallbladder? Sounds as if she's had her gallbladder removed, from the symptoms.

Is Nutribix fortified with methylfolate? Or Folic acid? Some people can't absorb folic acid.

Saggyuk
Saggyuk
in reply to greygoose

It's not 100% ruled out but she did have a scan of her gall bladder as the GP at least did this much but nothing showed up which it normally does. Chronic pancreatitis on the other hand is known for not being easy to see under ultrasound and the symptoms fit pretty perfectly - so it's just my guess at a possibility at the mo.

There's also the issue of the previously removed adenomas and polyps in her colon which weren't checked three years later as they should have been due to an error but to be honest, it doesn't seem to fit with her previous symptoms as no problem below the stomach or with pooping if she remains on the diet as hurts when food hits the stomach and seems it must be somehow connected to fat digestion - gall bladder or pancreas.

The professionals are doing naff all comsidering it was an urgent referral and has been waiting so long for appointments and they haven't even asked for a blood test so I'm just trying to see if can work anything out to speed it up as she can't go on like this forever and is still losing weight albeit more slowly. Also just trying to make sure nothing's going too bad in the mean time.

Nutribix is folic acid. I just saw some stuff on relationship with folate and the Big C but basically this relationship is not understood and undetermined at the moment so I don't want to do anything that possibly makes matters worse until the situations clearer?????

greygoose
greygoose
in reply to Saggyuk

Incredible, isn't it that they're not doing anything. I'd be mad, too. I had to threaten to punch my mum's doctor in the face if he didn't get her into hospital pronto! I think the older you are, the less they care.

I'm afraid I don't know anything about pancreases. But everything should be checked. I don't know anything about folate and cancer, either, I just thought she might not be absorbing the folic acid, and that's why her folate was low.

Saggyuk
Saggyuk
in reply to greygoose

Thanks grey goose. Yes, her body is clearly removing iron from her blood on purpose and storing it so just a bit reluctant as saw a couple of journals about low folate levels being protective against certain things such as this

gut.bmj.com/content/55/10/1461

and where she's not exactly showing anaemia in her blood count at the mo so Just confused/unsure lol!! I'll try and find some more recent stuff as other journals say the opposite or point out not yet understood.

Yes I wanted to go with her to see the consultant this week but she didn't want me to where she was rushing there in her lunch break at work but I'm going to make sure I will for all future ones whether she wants me to or not lol because this is becoming ridiculous!!!

greygoose
greygoose
in reply to Saggyuk

Well, I hope she gets some joy out of him! Good luck to both of you. :)

If you can't convert folic acid to folate, you have low folate symptoms even if you take folic acid - in fact it gets worse as folic acid blocks folate. A woman I worked with had pancreatitis, she was rolling on the floor in agony with every attack. I still think it's worth getting vit D to a decent level - it's not just about calcium.

Cholesterol levels are more affected by carbs, as carbs go to make triglycerides and VLDL from which all the rest of the cholesterol is made. The body tries really hard to balance calcium in the blood, and magnesium so often these tests don't tell you much as the body just grabs it out of the bones to go into the blood. If she can't digest fat easily (steatorrhoea), get her a lipase supplement and pancreatic enzymes - but really GP/gastro should investivate causes.

Thanks. Yes, she's just struggling to eat enough in general and if she forgets to take something with her to work, she then doesn't eat! She's been eating rice, sorghum and quinoa without issues and we've just added new potatoes without issue if keeps it smaller amounts. Roast potatoes don't work - probably the oil?

She was sent for urgent referral three months ago due to previous issues with adenomas and polyps in colon and the weight loss but they kept cancelling. finally saw consultant this week but still not had date for scopes!!

Saggyuk
Saggyuk
in reply to Saggyuk

From what I read re calcium, your body will generally keep you low in range if removing it from your bones but i suppose that might depend on whether you're actually producing calcitonin or not but I will bear that in mind. I'm going to check some of her other ones too like potassium :-)

Oh, I eat plenty of carbs, but my cholesterol stays low. :(

High cholesterol is apparently now >5 (they have to do something with all those statins). I wish I could get mine higher as it seems to correlate with longer life and, being veggie, I must eat a lot of carbs too, but the mechanism for making LDL cholesterol is via carbs. Carbs > VLDLs to LDLs to triglycerides. Only a problem if you don't then use them up. Dr Malcolm Kendrick did a simple explanation: drmalcolmkendrick.org/2015/...

It's disgusting. It's like they want to kill us all off! Damned statins!

Have you considered gastroparesis? I read on a different forum about a youngish lad who struggled to eat without it causing him similar problems. It took him quite some time to get a diagnosis, he had a lot of issues. He suffered with heart rate problems, sickness, couldn’t tolerate much sun. He linked it to some medication he was given having an undesired effect. If you’d like the link to the thread let me know.

Saggyuk
Saggyuk
in reply to Espeegee

Thanks, yes please give the link in case nothing comes up from her scans and scopes - I'm willing to consider anything at the moment :-)

Hi, have you tried Ox bile supplements? One with each meal will digest the fat and allow your mum to eat a wider variety of food.

Saggyuk
Saggyuk
in reply to LuckyKat

THanks, I will look into it, it's worth a try as then at least it would help work out if in fact this is the issue maybe :-)

Regarding folic acid this may be of interest :

chriskresser.com/folate-vs-...

And foods to eat for pancreatitis - this link may have some helpful suggestions :

medicalnewstoday.com/articl...

If it mentions things that are diametrically opposed to your mother's experience of pain on eating then perhaps she doesn't have pancreatitis at all. Note that doctors treat chronic and acute pancreatitis with different degrees of urgency. Basically, pancreatitis is caused by the pancreas digesting itself, and this is why it hurts so much.

Saggyuk
Saggyuk
in reply to humanbean

Yes, I think I'm going to leave supplementing folate until we've had the all clear on that front to be honest - hopefully won't be too long!

Yes, the foods match perfectly which is why I'm convinced it is this. She's also been having a lot of MCTs in the form of coconut oil which she's craving really badly funnily enough as mentioned on the link as being really good as not requiring digestive enzymes.

Thanks :-)

I am having similar problems as your mom. I have problems digesting All foods, especially fats. Went to a gastroenterologist for blood tests, scans with contrasting dye and a scope of esophagus, stomach and upper intestines with no unusual findings. I was desperate because loosing so much weigh even though I was eating a lot (and still slightly hypo). Asked the doc if I should take digestive enzymes and he said yes if it made me feel better but in his opinion not needed.

So I played around some with digestive enzymes. I now take HCL and Pepsin, Ox Bile and Lypase. I know things are still not working as they should because stools do not look completely normal but I have stopped losing weight. I cannot seem to gain any weight back but relieved I am able to maintain what I have. Still hungry and eating a lot though while hoping to find a better answer.

Saggyuk
Saggyuk
in reply to Annkapp

Thank you, are you able to eat more fats now using these?

Annkapp
Annkapp
in reply to Saggyuk

I tolerate them better. I can eat fats but still it is better if I don’t over do the fats in any one meal. The coconut oil I do not have a problem with and helps to satisfy the hunger.

Saggyuk
Saggyuk
in reply to Annkapp

Yeah everything is doused in coconut oil at the mo lol!

Neighbour's lad has just been diagnosed with Crohns after going through something similar - only 17!

Ouch yeah nasty. My cousin (through marriage) has this and has slowly had all her bowel removed until there was nothing left but she's kinda happier now as more stable and she deals with it really well. It' awful to have something as bad as this! Hope he does well :-)

Saggyuk
Saggyuk
in reply to Saggyuk

meant colon - most of colon removed or large bowel - not complete bowel lol!!!

Sounds like your mom definitely needs to be taking methylated B9 and probably methylated B12. Avoid folic acid. Look up my responses to others concerning MTHFR genes and B9, B12. Also google MTHFR.net for extensive info on these genes. B9 andB12 are critical for many processes in the body.

Saggyuk
Saggyuk
in reply to Annkapp

Hi thanks, I already have some methyl folate - just going to wait until she's had her scans as she's either seemingly unable to absorb it at the mo or choosing not to and don't want to mess with it. Her active B12 is high enough and she stopped taking them four months ago which were also methylated. Thanks though :-)

Annkapp
Annkapp
in reply to Saggyuk

I just started taking a medical food (Perscription vitamins) called Enlyte (or EmBrace) which contains all the methyl b’s. Actually different forms of methyl B9 with all the necessary cofactors. One form of methylated B9 Folinic acid I do not do well on. It is much different than folic acid and Folate but still not broken down enough or in the right form for me. Reply to me when you want to learn more.

Saggyuk
Saggyuk
in reply to Annkapp

Thanks, that actually might be useful anyway as no one in my family seems to be optimal at absorbing folate at the best of times so will be interesting to try :-)

Note that coconut fats go directly to the blood without first going through the liver like everything else. So I am thinking in part there is something tied to the liver function.

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