HCL & Pepsin / Digestive Enzymes reaction - Thyroid UK

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HCL & Pepsin / Digestive Enzymes reaction

jostafford0 profile image
23 Replies

Hello, I wonder if anyone has experienced severe gastritis when taking HCI & Pepsin & digestive enzymes? I have Hashi's, Colitis, Endometriosis & Painful Bladder Syndrome and have had digestive problems since my 20's. I did the bicarbonate of soda home test for low stomach acid and didn't burp at all so figured I have low stomach acid. I also did a SIBO test last year which was positive. I've tried taking HCL & Pepsin & Digestive Enzymes twice - once last year and this year and both times had terrible gastritis with severe chest pain, I thought I was going to have a heart attack. The only thing that took the pain away was Omeprazole. I'm so frustrated with this as I've read loads of books on thyroid issues and they all seem positive about taking HCL & Pepsin & Digestive Enzymes and nowhere does it state what I've been through. Any help and advice would be welcome. Thank you Jo

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MaisieGray profile image
MaisieGray

Were you taking it only when necessary, and appropriately for you ie taking it when eating protein; perhaps not taking it when not eating protein eg if you can normally eat say, a salad, without a problem, taking Betaine HCL can somewhat perversely cause the pain and discomfort you describe; varying the dose according to how much protein you are consuming in that particular meal?

jostafford0 profile image
jostafford0 in reply to MaisieGray

Hello, I was taking it at every meal regardless of the protein but I do try and eat protein in every meal. My breakfast is muesli with hydrolysed collagen added and nuts so I presumed this has some protein in it?

MaisieGray profile image
MaisieGray in reply to jostafford0

A quick look at the package of my Sainsbury's Taste the Difference fruit and nut muesli says a 45g serving with milk provides 8.5g protein, and without milk, 4.9 g but I guess it could vary quite a lot, depending on the ratio of the different ingredients in different brands. If you are taking it at every meal, and not adjusting it to the protein ingested, as a healthy stomach would naturally do, that "may" be something you could benefit from addressing if you would like to persist in making it work for you.

SlowDragon profile image
SlowDragonAdministrator

How much Levothyroxine are you currently taking?

Is it always the same brand?

What are your most recent blood test results for thyroid and vitamins?

For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also extremely important to test vitamin D, folate, ferritin and B12

Low vitamin levels are extremely common, especially if Thyroid antibodies are raised

Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and fasting. Last Levothyroxine dose should be 24 hours prior to test, (taking delayed dose immediately after blood draw). This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)

Is this how you do your tests?

Getting thyroid levels fine tuned should help improve gut function

Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies or all vitamins

thyroiduk.org.uk/tuk/testin...

Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have special offers, Medichecks usually have offers on Thursdays, Blue Horizon its more random

As you have Hashimoto's Are you on strictly gluten free diet?

jostafford0 profile image
jostafford0 in reply to SlowDragon

Hi Slow Dragon, at the moment I am taking 75mg / 100mg of Levo alternate days. I'm trying to get up to 100mg but struggling as it gives me palpitations and makes me feel dreadful - I think it is to do with my adrenals so I've just done an adrenal saliva test and posted it off this morning. My GP reduced my thyroid meds in Feb stating I was taking too much as my TSH was 1.5, I knew she was wrong but went along with it. I had bloods taken a few weeks ago and my TSH had gone up to 4 and free T4 was 14.3. I rang the receptionist who said my bloods were fine but I made an appt to see the GP anyway. When he showed me the results I was fuming and asked why the receptionist said they were fine when they clearly aren't. He even agreed with me and told me to raise my Levo to 100mg. This wasn't the same GP that reduced my meds. I see a different GP every time I go! My Ferritan and Folate are all on the high side and I supplement with Vit D, A, K tincture which I buy from the US, I self inject with B12 and take Vit C & Zinc. I am gluten and dairy free (most of the time). My MCV and MCH levels are borderline high from an anaemia test I did a few weeks ago.

SlowDragon profile image
SlowDragonAdministrator in reply to jostafford0

Essential to test TSH, FT4 and FT3

If TSH is this high and FT4 this low, then FT3 is likely low

Low FT3 will affect adrenals

jostafford0 profile image
jostafford0 in reply to SlowDragon

Thank you for the info - if my free T3 is low, how do I get it higher as I am supplementing with the appropriate vitamins and minerals for the conversion to happen? I'll do the thyroid test when I've been on this dose for a while longer. My adrenal test came back and my night cortisol is over the threshold.

SlowDragon profile image
SlowDragonAdministrator in reply to jostafford0

You need to slowly increase your Levothyroxine

Dose increases should be in 25mcg steps upwards (maximum) Some people have to increase slower.

Bloods retested 6-8 weeks after each dose increase

Levothyroxine dose should be increased slowly until TSH is under 2, (many need it well under one) and FT4 is in top third of range

Optimal vitamins help improve conversion

Do you supplement vitamin C, selenium and magnesium?

Palpitations can be due to under medication as well as over

Getting TSH, FT4 and FT3 tested together is next step, after 6-8 weeks on constant dose

Always get same brand of Levothyroxine at each prescription too

Your GP was ill informed

TSH should be UNDER 1.5 on Levothyroxine

New NHS England Liothyronine guidelines November 2018 clearly state on pages 8 & 12 that TSH should be between 0.4-1.5 when treated with just Levothyroxine

Note that it says test should be in morning BEFORE taking Levothyroxine

Also to test vitamin D, folate, B12 and ferritin

sps.nhs.uk/wp-content/uploa...

If GP is going to meddle inappropriately, then you need to insist on referral to a recommended Endocrinologist

Your thyroid disease needs to be managed with your agreement. A GP should discuss options and listen to your views.

Email Dionne at Thyroid Uk for list of recommended thyroid specialists

please email Dionne at

tukadmin@thyroiduk.org

Dr Toft, past president of the British Thyroid Association and leading endocrinologist, states in Pulse Magazine,

"The appropriate dose of levothyroxine is that which restores euthyroidism and serum TSH to the lower part of the reference range - 0.2-0.5mU/l.

In this case, free thyroxine is likely to be in the upper part of its reference range or even slightly elevated – 18-22pmol/l.

Most patients will feel well in that circumstance. But some need a higher dose of levothyroxine to suppress serum TSH and then the serum-free T4 concentration will be elevated at around 24-28pmol/l.

This 'exogenous subclinical hyperthyroidism' is not dangerous as long as serum T3 is unequivocally normal – that is, serum total around T3 1.7nmol/l (reference range 1.0-2.2nmol/l)."

You can obtain a copy of the articles from Thyroid UK email print it and highlight question 6 to show your doctor

jostafford0 profile image
jostafford0 in reply to SlowDragon

Thank you for all this really useful information, I feel so supported on this site. I think I jumped up the dose of Levo too quickly and will take it slower. I've seen that many specialists over the years - different nutritionists, Endocrinologists, functional practitioners (had to stop seeing the functional practitioner as I just couldn't afford to see her any longer as I'd already spent £4k with her doing various tests plus it cost me £90 every time I saw her).

Work are doing cholesterol tests today so I went and got tested, my result is 7.5. Apparently I now need to see my GP to get checked out as I am classed as very high. I'm taking it with a pinch of salt as I know people with thyroid conditions can have high cholesterol plus it doesn't tell me if it is high good or bad cholesterol. I eat a healthy diet and exercise where I can so it isn't anything to do with my diet.

I wondered whether you would know why my serum B12 and active B12 levels are so different? My serum B12 is low but my active B12 is high. I just don't get it. I have all the neurological symptoms of anaemia consistent with my low B12 and I feel so much better when I supplement but my active B12 is telling me there is nothing wrong with my levels. It is just so strange.

SlowDragon profile image
SlowDragonAdministrator in reply to jostafford0

High cholesterol is strongly linked to being hypothyroid

Another strong point in your argument for dose increase in Levothyroxine

nhs.uk/conditions/statins/c...

If you have an underactive thyroid (hypothyroidism), treatment may be delayed until this problem is treated. This is because having an underactive thyroid can lead to an increased cholesterol level, and treating hypothyroidism may cause your cholesterol level to decrease, without the need for statins. Statins are also more likely to cause muscle damage in people with an underactive thyroid.

Many of us notice low B12 symptoms despite apparently high B12 levels when FT4 (and FT3) are too low

Getting Levothyroxine dose high enough should improve this.

Perhaps consider supplementing a good quality daily vitamin B complex as well as/or instead of B12

Supplementing a good quality daily vitamin B complex, one with folate in not folic acid may be beneficial.

chriskresser.com/folate-vs-...

B vitamins best taken in the morning after breakfast

Recommended brands on here are Igennus Super B complex. (Often only need one tablet per day, not two. Certainly only start with one tablet per day after breakfast. Retesting levels in 6-8 weeks ).

Or Jarrow B-right is popular choice, but is large capsule

If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 7 days before any blood tests, as biotin can falsely affect test results

endo.confex.com/endo/2016en...

endocrinenews.endocrine.org...

Keeping all B vitamins at good levels is important. We are often low in Thiamine (B1) or B5

All B vitamins need to work together

Info about B12 and B5 link

drgominak.com/sleep/vitamin...

Thiamine

thyroidpharmacist.com/artic...

jostafford0 profile image
jostafford0 in reply to SlowDragon

Hi Slow Dragon - you know more than any of the nutritionists or functional practitioners I have seen in the past.

The Sleep and vitamin D page is so interesting:

If you have fibromyalgia, muscle pain, arthritis, or burning in the hands or feet you have a combination of D and secondary pantothenic acid (B5) deficiency. If you start vitamin D supplementation by itself, without correcting the intestinal bacteria (by taking B50 or B100 for three months) you will eventually become B5 deficient and start to wake with pain and stiffness in the morning.

I have burning hands and called the nurse about it some years ago as it was freaking me out but she didn't know what it was so I never pursued it. I also have had disturbed sleep since my late teenage years. I take Acidophilus Extra as I did a stool test a few years ago and found I have no Acidophilus at all - zero. I've ordered the Igennus Super B complex and will use these instead of the Solgar B vits as the Solgar one I have contains Folic Acid not Folate. I already take Vit A, D, K tincture from Forefront Health in the US.

The other major problem I have which I've never really talked about is that I suffer with hypoglycemia every day. It gets to about 4pm and I go really weak and my head swims, I go hot and very shaky. I eat a snack at 3pm but most of the time it doesn't matter, by the time I have walked to my car (15 min walk) I have gone hypoglycemic. I've tested my blood sugar but it doesn't go low enough to be normal hypoglycemia. I went to the doctor about this in my 20's and they dismissed it saying it is not hypoglycemia. The only way to get rid of it is to eat something quick, if it is really bad it will make me feel dreadful all evening like it did last night. Is there anything I can do to stop this happening? I'm going to talk to my GP again and see if he can help me but I don't hold out much hope.

Thank you so much for taking the time to listen to me, I am so grateful.

Jo

SlowDragon profile image
SlowDragonAdministrator in reply to jostafford0

Took over 25 years to get well. Couldn't have done it without fantastic knowledge on here.

Endocrinologists don't understand (or are disinterested in) gut issues

More on my profile

I had peripheral neuropathy after improving low vitamin D.

Knew GP would be clueless (they had already dismissed as utterly ridiculous the idea plantar fasciitis and hypothyroid were linked!! Yet this is well known)

Dr Gominack website is full of great info. (She is Also on YouTube etc)

When I added good quality vitamin B complex (plus sublingual B12 initially) this dramatically improved peripheral neuropathy within weeks

In fact for years I had always appeared to have high B12 (very odd for anyone with Hashimoto's) yet always had masses of low B12 symptoms. Again adding vitamin B complex improved all these

SlowDragon profile image
SlowDragonAdministrator

See in a previous post you were prescribed propranolol for migraine

Are you still taking this?

healthunlocked.com/migraine...

Propranolol can badly affect Thyroid levels.

Also may affect magnesium levels too (see The Magnesium Miracle by Carolyn Dean)

jostafford0 profile image
jostafford0 in reply to SlowDragon

No, I couldn't take it every day as it made me feel dreadful. I take it now and again when I have bad anxiety but it isn't very often. To be honest I struggle taking any medication as I always get bad side effects. I am even struggling with the Levothyroxine. I take Norytriptyline 10mg at night as that's all I can tolerate.

HLAB35 profile image
HLAB35

Bear in mind that muesli is full of phytates that bind to iron and zinc.... If you like oats, porridge is a lot more digestible. Betaine HCl is not much use at digesting muesli. For endometriosis you need to stop making bad prostaglandins. Dairy contains arachidonic acid that converts Omega 6 fats to PGE2 (bad prostaglandins). In her book on overcoming PMS, Dr Marilyn Glanville says to limit dairy intake until symptoms of PMS are reduced. I have also read that serrapeptase is working for many people who have old endometrial tissue and it breaks it down.. but look this up, because it is not something I have tried. NAC is also something that helps with endometriosis, but I have only used if as an antioxidant and GABA booster. 'Flo Living' is an interesting source of info for those with Endometriosis.

jostafford0 profile image
jostafford0 in reply to HLAB35

Hello, I used to eat gluten free porridge every day but changed to gluten free muesli so I could add blueberries, nuts and seeds. I am dairy free too so drink oat or almond milk. It's interesting to hear about Serrapeptase and I'll also look into NAC. I'm on the depot injection at the moment but it is not agreeing with me so I think I'll have to come off it which is disappointing.

HLAB35 profile image
HLAB35 in reply to jostafford0

Pumpkin seeds are low in phytates and high in zinc and some nuts are more digestible than others.. worth looking into as you will want to avoid a copper zinc imbalance. Supplementing zinc is often wise if you don't consume eggs or red meat especially if you have hormonal imbalances. Zinc keeps oestrogen levels down.

jostafford0 profile image
jostafford0 in reply to HLAB35

Good to know about Zinc - I did an oestrogen dominance test earlier in the year and it came up positive. I used to eat loads of almonds and only drink almond milk but a food intolerance test showed I was intolerant to them!

HLAB35 profile image
HLAB35 in reply to jostafford0

Here are a couple of articles that you may want to check out re: zinc.. first a scientific paper confirming low zinc status in those with endometriosis..

ncbi.nlm.nih.gov/pubmed/258...

Interestingly low zinc can effect men's fertility as well.

Another on copper-zinc imbalance; very important to be aware of this as high copper and low zinc can worsen hypothyroidism.

drjockers.com/copper-zinc-i...

jostafford0 profile image
jostafford0 in reply to HLAB35

Oh goodness this is so interesting and I hadn't come across this in my research. I had the Genova Diagnostics One Test done in 2017 and it showed I was borderline with Zinc and Magnesium but my nutritionist didn't mention Zinc is low in patients with Endometriosis. The test also showed I was extremely low in vit B2 and deficient in Vit B1, digestive enzymes and probiotics. I know zinc is needed for digestion so I wonder if this is why I get digestive problems? I always wondered if it was the endometriosis causing all of this as I've suffered with it since I was 13.

HLAB35 profile image
HLAB35 in reply to jostafford0

Ah ok, I don't know if they do the 'right' test for Magnesium though. The RBC test is the only one approved by the functional doctors (like Carolyn Dean) treating Magnesium deficiency.

Magnesium is needed for a healthy gut motility if you're prone to constipation, so are vitamin c and pantothenic acid (b5). I believe that zinc is involved in the manufacture of enzymes among the 100's of things it does. Vitamin B2 is found in dairy and meats, so if you don't do dairy you'd better supplement as it is vital for iron absorption and helps in the uptake of b6* which in turn helps with many, many things including b12 absorption, lowering homocysteine and making collagen.

*It converts b6 into p5p - the active form.

jostafford0 profile image
jostafford0

Thank you for your really informative & useful information, I’m so grateful. I take a Solgar multi B at the moment but I guess there isn’t enough B2 to help with my levels. I’ll buy a separate supplement.

WhyAmISoTired profile image
WhyAmISoTired

Did you ever figure this out? I also get a bad reaction from taking Betaine. I am hoping it's just a matter of starting slowly.

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