Nowt new here I know but thank God for this place, if it wasn't for you guys I would feel like I'm fighting a losing battle all on my ownsome.
Just had an endoscopy hoping it would inform me if I had low stomach acid but it didn't, when I asked the doctor about it he said they don't look at stomach acid levels. He did inform me my oesophagus was inflamed & sore due to acid reflux & he would recommend a stronger dose of Omeprazole. I'm thinking I probably have low stomach acid (as I'm hypo) which is causing the acid reflux & heartburn so more antacid will just reduce it. I was hoping they would find a low acid level & prescribe me HCL tablets but nope they didn't.
On top of that my last blood test showed my TSH was too low at 0.04 so my doctor ordered me to come off NDT & just stick to Levothyroxine (I was taking both together, 100mg Levo + 60mg Thyroid-S.)
So I just reduced the NDT to every other day but since doing that I've gone backwards & getting muscle aches, fatigue, breathing problems, you all knows it.
I'm wondering if I should take NDT everyday & Levo every other day, really not sure, when I came off Levo for a few days my indigestion came back badly despite being on Lansaprazole. Also I think I probably need to take more NDT if I'm lowering the Levo as I don't think it's the same amount as Levo. 60mg Thyroid-S does not = 100mg Levo in my experience.
What to do?
SIGH.
Written by
Limbolass
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Have you tried Betaine HCL and Pepsin ? Sorry not got time to read your previous posts. Just a thought. Try swapping the lowered dose to the levo and stay on the thyroid s. What do you have to lose ? This is a long game of two steps forward one step back. We're all with you and cheering you on
Hi Rapunzel, great profile pic & name. Yes I've been on Betaine & HCL for a while from my Digestive Enzyme pills but no go. I do have stronger HCL & Pepsin pills standing by which are 3 X stronger but I was waiting for doctors orders before I took them, guess it will have to be a self prescription again...According to my Endo all my levels were normal except my Ferritin so been on Ferrous Sulphate for that but according to this forum my B12 & Folate were also low so am also self prescribing those. Lab ranges are a joke. My Endo even said I might not even be hypothyroid & that it may be CFS (Chronic Fatigue Syndrome) & she suggested CBT. So now my GP thinks it isn't down to to my thyroid & looking for other causes...The Endo looked about 23 years old. I requested a more experienced Endo with more thyroid knowledge who I'm seeing next month...but I'm so jaded now I don't have much hope.
Did you say you're taking betaine and a PPI at the same time? I don't know too much about the specifics, but it sounds like these are contradicting each other. I think you have to come off the omeprazole to attempt the betaine treatment.
No I've been off the Lansaprazole, I weened myself off them as I had low iron & had to come off it completely before the endoscopy so I've had bad heartburn
He is absolutely right (unfortunately!) when he says they don't look at stomach acid levels - they don't even understand that it's an option. I had a gastroscopy which found an inflamed oesophagus (and a hiatus hernia), so I was immediately prescribed Omeprazole. I read the leaflet and decided not to take it. I then read Dr Myhill's page
I did the bicarbonate burp test she mentions and - guess what? - it was over 5 minutes so I was sure that I have low stomach acid. Since then I've had the VEGF test which confirms the finding.
I then bought some Apple Cider Vinegar. It must be diluted enough, but I'm sure it attacked the inflammation which has now cleared. This is understandable as Dr M says 'acid is required to sterilise the stomach and kill bacteria and yeast that may be ingested'.
The endo at the hospital was horrified at my refusal to take Omeprazole despite my attempt to educate him.
Part 2 - your suppressed TSH - nothing wrong with that. See the article dated 15/7/2016 in ThyroidUK's Recent News page
I did the bicarb burp test & I didn't even burp way past 5 mins. I have been on apple cider vinegar, how much vinegar to water is the best? Thanks for the info. But my doc wants me to take another blood test cos of my low TSH & high platelets, what do I do?
I add mine to half glass juice and top up with water. I wonder of different brands of cider vinegar are different strengths, so see what is drinkable. I take mine with meals.
Do not accept a diagnosis of CFS/ME if you can have any influence at all. And what ever you do unless you really feel that it is of any use to you do not accept CBT as a 'valid' CFS/ME treatment; the NICE guideline re GET and CBT are total bunkum that the charities working in this area have just exposed by forcing the researchers to release their data.
There have been articles called 'The Tyranny of the TSH' and it is true. If we are medicated according to the TSH and not relief of symptoms - what the point. TSH is o.k. for being diagnosed but relief of symptoms surely must be the priority.
If they can prescribe high doses which suppress TSH of patients who've had thyroid cancer and they don't develop other more serious illness but seem quite well.
Limbolass, the endoscopy was just to check you hadn't got cancer, they won't look at anything else, just put you on the PPIs which gives you brain fog and a host of other problems! You are right that you need to increase your stomach acid, not reduce it so hope you're trying the supplements you've got, all sound like the right things, as well as a desertspoon of cider vinegar in a mug of something, three times a day. And increasing your NDT will hopefully help too. Hope you feel better soon.
They don't actually test your stomach acid, so they have no way of knowing what causes the reflux. The endoscopy just looks at the resulting damage.
Your TSH level is really irrelevant, what is important if you are on NDT is your free T3. So has that been tested? If you felt better on your previous dose, I 'd go back to it.
TSH doesn't matter - it's not a thyroid hormone. It might dropmore and it might not. Some people's TSH seems to drop through the floor as soon as they take levo and others' doesn't. You need to make sure that your Folate, ferritin and B12 are at optimum levels so you can make use of the levo you are taking.
Tell that to my doc lol. I've decided to switch to a different GP surgery now, luckily there's an NHS one nearby that has a functional medicine doctor who prescribes NDT (tho he's private.) I am taking folate, iron & B12 but it's been quite recent so I guess it will be a while before they're optimal.
I vote for apple cider vinegar. I take Biona about 1 Tbsp made up to a medium glass of water. Steer clear of anything with a 'prazole' in it. They prescribed omni for my teenage daughter's stomach pains. Just made her worse. I did the sodium bicarb test on her and since then she takes half a lemon juice in some water if she has stomach pains and they go away.
I had acid reflux every night for years until I went gluten free. It stopped after 2 or 3 days. Never had it since. Good luck.
Make sure that you are using ACV with the "mother" in it. This is the strands of proteins, enzymes and friendly bacteria that give the product a murky, cobweb-like appearance. I use 2 teaspoons of ACV in 8oz water with a teaspoon of honey.
Ask if the gastro guy will do a Heidelberg Stomach Acid Test for you. That will determine your stomach acid levels & will produce definitive results no-one can argue with
I'm at my wits end with my doctor, he just told me that low stomach acid does not cause GERD & that people on Thyroid UK who said that it does should be challenged & he is prescribing me Omeprazole. Everything I suggest to him he just says is wrong so I'm now afraid to suggest anything more to him including the Heidlberg test. I told him I had got worse after coming off NDT at his order but he just said I may have to take more Levo & that there is no reason why Levo shouldn't work for me & that NDT isn't proven to work. I'm so ill now I can't work but he said "Work is good for you and can help". Can work cure hypothyroidism then? And how am I meant to work when I can't even wake up or walk properly?
Sorry to hear that your Dr is so ignorant & unhelpful
Is it possible for you to switch to a different doctor / surgery as this one sounds like he has a god complex ??
The only other way to approach this is to research, print out results from scientific studies & present those to him. Personally I would try to switch as you are on a hiding to nothing with this character & he won't help you in the long run
I'm going to switch to a surgery that's actually closer & has an ecological medicine doctor who prescribes NDT, I wish I joined them first! Where are these scientific studies?
I stopped taking PPI's years ago once I'd read up about it! I January I was sick for a week after an operation so they asked me to take a PPI and I refused! I explained why but then they asked had I had my stomach acid tested and I had to say no I and lost the argument. So half an hour later I was violently and painfully sick! Breakfast came up whole and had I been sick I to a China bowl it would have looked good enough to eat! There was no breakdown at all of my porridge and ham omelette! Low stomach acid? Certainly! But a painful way to get proof!
So, obviously, they immediately tested it. (Of course not!)
A few years ago, my GP prescribed omeprazole (I think it was that one). I said I didn't want it but he was reluctant to do anything else about persistent nausea without at least trying it. I was so, so, sick... Just one tablet and never again.
I have complained to the hospital about that stay but for various reasons haven't yet made it but other issues as well-left with the continuous sickness so suggested it could be the pain killers and I'd been happy with tramadol in the past-totally got ignored, only too paracetomol for a week when home-fine! Just tried one Nefapam again and retched for 5 hours! Why won't they listen to patients, we know our bodies better than they do!
I too found Tramadol reasonably effective when I needed it and - against the flow - no problem whatsoever to stop taking.
"They" seem to be dead set against opioid medicines and, to some extent, I can understand that. They can have and cause problems. But taking non-opioid medicines isn't always going to be preferable.
OK, here's my take on this. Your doctor cannot order you to stop the NDT. He can stop the levo, of course. The NDT causes the low TSH, but as long as you feel well and your FT3 isn't sky high who cares?
It is difficult to deal with the doctors, but after a disastrous episode where I allowed myself to be persuaded to stop NDT, gained 8 kilos in as many weeks and completely b******d my adrenals I no longer allow myself to be bullied. I tell them it is the only way I can feel normal and continue to work, and that is what I will do. I hope they will support me, but if they don't that is OK - they need to do what they believe is right, and protect themselves from action by their equally ignorant peers.
On one notable occasion I even told the doctor in front of me that I believed our time together was called a consultation, and I had come to consult her, but not allow her infinite power over my health and life. We didn't part on good terms, but I did get my entirely unrelated issue sorted. As background, three years of failure to diagnose me resulted in a broken relationship and lost job - so I ended up homeless and broke. I have not forgiven them!
Very inspiring thanks Ruthi, you've been through the mill! Was it the NDT that got you back on track? I'm done with that GP & won't speak to him again & have gone back on NDT but now taking more of it. I've found a local functional medicine doctor who prescribes NDT, not seen him yet, wondering if I can afford it as he's private, suppose I could bop it on the credit card.
Once I had worked out what it was I got myself referred (privately) to the late Dr Skinner and then followed the better part of a year of trying levo, levo+T3 and finally NDT.
I haven't tried T3 yet, my endo talked about it but then my labs came back "normal" so that was that. Time will tell if more NDT (Thyroid-S) does it for me
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Low acid
Advice please on low stomach acid. 
acid reflux for years
