Hypo symptoms returning since started on PPI - Thyroid UK

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Hypo symptoms returning since started on PPI

Rosebud1955 profile image
19 Replies

Hello everyone! I’m wondering with you knowledge folks coul shed some light on my situation. I got talked into taking PPI for ongoing throat mucus. This started since the beginning of my thyroid illness. ( hasi and cancer) I saw two ENT doctors, three gastroenterologists, had two upper endoscopies and they’re all colluding and guessing diagnosis, all telling me that I have GERD, no heartburn. One gastroenterologist stated that she did not see much acid and did not want to give PPI. I think they’re all fed up with my constant complaining so I don’t think they’re even listening anymore. This is affecting my quality of life and I now feel like giving up.

I started the PPI three weeks ago and my hypo symptoms are begin to creep up. The main ones being extreme fatigue in the evening time, joint pain, constipation, lack of motivation and sleep disturbances. I presently take 75 Erfa , + 37.5 Synthroid, taken all together at 8am.

Here are my labs from October 2022, done according to the guidelines here.

Tsh: 0.01 (0.32-4.00). FT4: 12 (9-19). Ft3:4.6 (2.6-5.8) Ferritin 194 (15-272). B12: 1044. (138-652). Vit. D: 114 (75-250) no folate tested but 400 folate is included in my daily B- complex. I also supplement with 1000 vit D+ k2. and magnesium glycinate at bed time.

Here’s my question: could the PPI be interfering with the absorption of my thyroid meds? I was not feeling 100%, but a lot better before I started the PPI. After being on the PPI for 3 weeks, my throat secretions have gotten worse. I’m thinking that maybe I had low stomach acid instead of high. Could this be the case? I didn’t want to be labelled as “ non compliant” so I gave in and agreed to take the PPI. I’m now feeling like a mess.

I’m not due for labs until late April so a long way to go. Looking at those labs, would I be safe to add 12.5 of Synthroid or 15 of Erfa ? I have extra of both so I could do that until my labs are due in April. Or should I ask the Endo for labs now, and wait for results before the increase. I’m also thinking of stopping the PPI.

Any suggestion/guidance would be much appreciated. I really feel awful!

Thanks!

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19 Replies
snow22 profile image
snow22

they tried to make me take PPI too but I did not. They appear to like to dish them out like statins/smarties. If both secretions and thyroid felt better before it would appear best to stop PPI. You could do private thyroid blood test if you want to measure levels. I have read low acid/mucus is often mistaken for high. You could try digestive enzymes instead and probiotics always good. Have you looked up alternative health solutions online? Doctors do collude and are getting more forceful in pushing their drugs on us.

Fruitandnutcase profile image
Fruitandnutcase in reply to snow22

I’d agree with that - at one point some years ago I had boxes of the things (PPIs) . I can’t even remember why I was first prescribed them. Eventually I cleaned up my diet and stopped taking them. Years later I was prescribed them again and got horrible heartburn as soon as I started taking them so I stopped - did a home baking soda test and decided I probably had low stomach acid. Last year I fractured my sacrum and was prescribed Naproxen and a ‘tummy protector’ which was - you guessed - PPIs. Took both as prescribed and ended up with the worst diarrhoea I have ever had in my life plus massively fast pulse. Spoke to GP who said to stop the Naproxen and double up on the PPI! The diarrhoea continued so I stopped the PPI and things settled down. It really annoys me that doctors will prescribe PPIs, antidepressants and statins at the drop of a hat yet often aren’t treating your thyroid properly.

I’m afraid I no longer care if my GP sees me as ‘non compliant’.

Brightness14 profile image
Brightness14 in reply to Fruitandnutcase

Just pretend I do, it works too.

Fruitandnutcase profile image
Fruitandnutcase in reply to Brightness14

No, no pretending for me. I’ve always just told the doctor when I wasn’t wanting to take something. I didn’t want it on my repeat prescriptions and I didn’t want to be hounded for not accepting it at the pharmacy. A couple of years ago I told the pharmacy assistant to take one drug out of my bag of pills because I wasn’t wanting to take it. She was totally shocked - she said I couldn’t stop taking it and called over to the pharmacist about it and I said “too late, I’ve stopped it, I don’t want any more.” I realise she was very concerned for me but it was my choice.

She then wanted me to phone and speak to my GP about my decision - that was at the height of covid - there was no po8nt in discussing it - I knew the risks I was taking - in the end I sent a letter to my GP telling her I didn’t want to take the drug as it made me feel really ill and I wanted it removed from my repeat prescription. I heard nothing from my GP and next time I looked it had been removed from my prescription so I knew she had read my letter.

Rosebud1955 profile image
Rosebud1955 in reply to Fruitandnutcase

Thanks for taking the time to reply! I think I will stop taking this poison. I’m sometimes cowardly and worry what the will write in my chart.

Brightness14 profile image
Brightness14 in reply to Fruitandnutcase

Everything is different here in France I just cross the items out on the prescription and they never bother about it. I have been mistreated in the UK to the point of losing the sight in one eye, and having a year long UTI which caused my kidney harm. I suppose I just don't trust GP's. I use natural Hawthorn extract for my BP it works. I just cross off anything else.

Fruitandnutcase profile image
Fruitandnutcase in reply to Brightness14

We tick for what we want every month but I think if people don’t tick to receive certain drugs someone would query why you are not taking them. Someone on another group was questioned about forgetting to collect her script for bisphosphonates!

Like you unfortunately I no longer have faith in doctors, it’s sad really but there have been so many things that have chipped away at my confidence in them that I kind of feel as if I’m on my own. Maybe I’m not but that’s how I feel. Lucky, lucky you living in France.

Rosebud1955 profile image
Rosebud1955 in reply to Brightness14

I can’t blame you for not trusting GPS, most of them are useless, they do a lot of guessing. I feel the same way! I’m in the process of finding a naturopathic doctor for my health needs, they’re more knowledgeable. It seems as though they’re the same everywhere. Thanks for sharing!

Rosebud1955 profile image
Rosebud1955 in reply to snow22

Thanks for taking the time to reply. Yes. ,I’m tried everything under the sun, have not tried digestive enzymes though but will give it a try. No, we can’t do private testing here in Canada, everything goes through the regular health care system. Endo is flexible so will do labs if I tell him how I’m feeling. Sometimes I don’t even like to get doctors involved, I’m become fearful of them can be patronizing and uncaring.

Lalatoot profile image
Lalatoot

The symptoms of to much and too little stomach acid are the same. Apart from the fact that doctors don't seem to consider that stomach acid can be low. Hypos tend to have low stomach acid rather than too much.

For low stomach acid some folks take apple cider vinegar with mother, that's the sludge. I pour a little in a mug, add a teaspoon honey and fill with hot water.

And yes it is likely the PPI is causing the problem as you suggest. When I was in the same boat and the ent consultant suggested a PPI, I politely refused.

As to what to do now. Well you started the ppi and things got worse. This points to what is causing the latest symptoms. Stop the PPI.

Rosebud1955 profile image
Rosebud1955 in reply to Lalatoot

Thanks for taking the time to reply! I think I will stop being a chicken and advocate for my health. I’m going to stop taking them starting tomorrow. I have nothing to loose because taking them made my secretions worse. I have the ACV with the mother so I will try as you suggested. Thanks again!

Musicmonkey profile image
Musicmonkey

What is mother please and what are digestive enzymes?

Rosebud1955 profile image
Rosebud1955 in reply to Musicmonkey

I think it’s good quality Apple cider vinegar with probiotics. That’s my simple way of putting it. Someone else might be able to explain better.

euonymus profile image
euonymus

Your TSH is very low and your FT4 in the normal range and not borderline. This looks as though the Synthroid is being adequately absorbed.

Rosebud1955 profile image
Rosebud1955 in reply to euonymus

my FT4 is only 12, I don’t think it’s that good, but I also take NDT along with my Synthroid. It could be that I need my FT4 to be a little higher in range. My fatigue seems to creep up on me in the evening time. I’m thinking that I could be running low on FT3 and don’t have enough TT 4 to convert to T3. (Just guessing)

Batty1 profile image
Batty1

Is it heartburn issues your having or post nasal drip? Gerd or bad case of heartburn which might feel like either a pain in between breast bone or burning/ sour taste in mouth and if your throat feels filled with “mucus” then you could simply be having post nasal drip that at times can be excessive due to allergies.

I have gerd and I take my PPI 3 hours away from my thyroid meds and have not experienced any interaction and I have terrible allergies that can make my throat feel clogged and thick so I resort to taking Flonase spray everyday and my thick snotty throat goes away.

Rosebud1955 profile image
Rosebud1955 in reply to Batty1

Doctors seem to believe that it’s GERD but I disagree. I feel like it’s postnasal drip, no heart burn. My throat always feel full and sinuses feel full. I recently got a prescription for Nasonex, I think it’s similar to Flonase, I think it’s steroid. PPI should not be taken long term because it depletes B12 and other supplements. I’ve been taking PPI for almost 4 weeks and still no relief, the secretions got worse. Thanks for your input!

Batty1 profile image
Batty1 in reply to Rosebud1955

All magic comes with a price as long as my magic allows me to live heartburn and ulcer free Im good with it and I do supplement b12 everyday to combat PPI use.

Personally I wouldn’t do a steroid I would just buy over the counter nasal spray.

Rosebud1955 profile image
Rosebud1955 in reply to Batty1

Thanks! Will consider!

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