reflux help please: hi, i have autoimmune... - Thyroid UK

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reflux help please

Happysmile profile image
24 Replies

hi, i have autoimmune illnesses, graves(thyroidectomy, so now under active), severe B12 deficiency, etc. Since having covid in March for the first time, I developed changes to my voice and some issues swallowing. I had had a tube down my nose to check for swallowing issues before this happened and all looked good. Then got a chest x ray which was also good. Since then feelings in my throat of classic reflux changed to feeling very sick in my stomach and throat. Enough to be unable to do normal activities. I have some good days without many or any symptoms and then I have awful days. I asked for an endoscopy due to the risks from B12 of stomach cancer and to find out why this is happening, but am not sure if this will be approved. I don’t want to start ppi’s as i’d like to sort the cause if possible, rather than the symptoms. Am taking apple cider vinegar, aloe vera, optibac probiotics, manuka honey and avoiding triggers.

Any help or advice would be really appreciated.

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Happysmile
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24 Replies
RedApple profile image
RedAppleAdministrator

Happysmile, the symptoms you describe could be caused by being on the wrong dose of thyroid medication.

Please say what thyroid medication you are taking, what dose, and what your most recent thyroid test result was.

Happysmile profile image
Happysmile in reply to RedApple

Hi. I take Erfa, 1.5 tabs am and 2 pm. Last results

T3 4.2 (3.9-6.8),

T4 10.2 (11-24)

TSH 0.49 (0.35-4.5).

Consultant said there was no room for movement on dosage.

Your thoughts would be appreciated, thank you.

RedApple profile image
RedAppleAdministrator in reply to Happysmile

Consultant is obviously going only by TSH! Your FT4 is below range, and FT3 only just in range. No wonder you feel so bad. You are hypothyroid. Voice changes, reflux etc are typical symptoms of insufficient thyroid hormone.

If those were my results, I'd be adding some levothyroxine to my daily dose to get some T4 into my system. I'd start with 25mcg levothyroxine and see how it goes.

Happysmile profile image
Happysmile in reply to RedApple

hmm, very interesting. That would also explain why my cholesterol is above range. I did raise this as being a sign of hyperthyroidism to no avail.problem is I can’t get levo prescribed without consultant advising ot. Do you happen to know any consultants who prescribe ndt in south west uk? By private message obviously. Thank you so much for your help.

RedApple profile image
RedAppleAdministrator in reply to Happysmile

The consultant you're currently with is obviously incompetent and doesn't understand thyroid hormones at all. You could try discussing this with him, explaining that you're not asking for an increase of NDT, but to add some T4 to bring your T4 level into range. you never know, he might be ok with that as levo is the conventional treatment that they all swear by :)

You can also request a list of thyroid friendly practitioners from Thyroid UK to see if there's anyone on their list that would be reachable for you. thyroiduk.org/about-thyroid...

Another option might be to have an online consultation with Roseway Labs, who will at least understand what you're asking for and why, and may be able to prescribe both NDT and levo for you. rosewaylabs.com/patients/pr...

Happysmile profile image
Happysmile in reply to RedApple

Thank you. I think I may speak with him after getting my test results. If i added levo to increase t4, should that bump up the t3 too?

pennyannie profile image
pennyannie in reply to Happysmile

Looking back I see a result from 2 years ago when on 1+ 3/4 grains Efra

showing a T4 at 10.30 with a T3 at 4.80 :

Are you saying above you now take 3 grains as your results do not seem to be reflecting this increase at all - presuming the same conditions of around 14 hours post last dose ?

Maybe your core strength vitamins and minerals need running as ferritin, folate, B12 and vitamin D all need to be up and maintained at optimal ?

Happysmile profile image
Happysmile in reply to pennyannie

i take 45 mg am and 60 mg pm. Grains confuse me. I always test fasting, first thing in the morning, with my last dose being at 6 pm the previous evening. I haven’t had my vits etc tested for a while, i will do some via Medichecks I think. B12 is always very high as i inject 3 times a week. I take d3, k2, magnesium but not every day. B vits a couple of times a week, vit c and l lysine daily. I was trying quercetin and had recently got back to folate, as I had simply forgotten to take it for a while and previous tests showed good ranges.

I stopped all but vit c and l lysine and probiotics. I even stopped my steroid inhaler etc when my voice issues started in case any of them were contributory factors.

Not sure how to manage levo/erfa increases now, now as i’ve had to navigate myself and request up till now. as reflux seems to be an acceptable issue.

Thank you so much for your thoughts.

pennyannie profile image
pennyannie in reply to Happysmile

So you are not on 3 grains now but the same dose as 2 years ago when you were advised you were likely undermedicated .

So undermedicated these past couple of years its likely your vitamins and minerals have nose dived through the ranges compounding your health issues further.

Happysmile profile image
Happysmile in reply to pennyannie

i will definitely get tested, thank you.

Happysmile profile image
Happysmile in reply to pennyannie

so folate, iron, vit D, no point doing b12. Anything else?

pennyannie profile image
pennyannie in reply to Happysmile

Yes, the iron - is a ferritin reading :

So I now know i need my ferritin at around 100 : folate around 20 : active B12- 75++ ( serum B12- 500++) and vitamin D up at around 100 :

Happysmile profile image
Happysmile in reply to pennyannie

thank you. I’ve ordeted the tests.

greygoose profile image
greygoose

Low stomach acid, due to low FT3 and low B12. You need and endoectomy! You are very under-medicated - which is exacerbated by the low stomach acid. It's a vicious circle.

Happysmile profile image
Happysmile in reply to greygoose

thank you. Do you mean endoscopy?

greygoose profile image
greygoose in reply to Happysmile

No, I didn't mean endoscopy. 🤣🤣🤣 I meant you need to get rid of your useless endo! Just my little joke, sorry.

Happysmile profile image
Happysmile in reply to greygoose

🤣🤣🤣 made me laugh, needed that. 👍

greygoose profile image
greygoose in reply to Happysmile

:D

Rosebud1955 profile image
Rosebud1955 in reply to greygoose

GG : You’re hilarious! You always make me laugh!

greygoose profile image
greygoose in reply to Rosebud1955

I'm glad to hear it. Laugher may not be the best medicine, but it is a very good one.

SlowDragon profile image
SlowDragonAdministrator

As you have been left under medicated and hypothyroid likely to have low vitamin levels

Get vitamin D, folate, ferritin and B12 levels retested

Exactly what vitamin supplements are you currently taking

Are you on gluten free diet or tried it

Happysmile profile image
Happysmile

hi @SlowDragon.

I am gluten free as i have an anaphylactic allergy to it. I takr vit d/k2/magnesium but not often enough. Vit c, l lysine and probiotics daily. Inject b12 3 times weekly, was trialing quercetin and take vitb complex a couple of times a week. Recently have stopped all inc steroid inhaler, but not vit c and l lysine as I get run down without them. I’d forgotten folate tbh so gad restarted this around the time of voice changes, so then stopped them too. Feeling frustrated with having to keep asking and justifying tests etc. My gp is fab but led by consultant and limited knowledge of b12/vits needed etc. I am luckier than most though. Thanks for your help.

SlowDragon profile image
SlowDragonAdministrator in reply to Happysmile

Please come back with new post once you get test results

You are likely to need vitamin B complex daily

Remember …..If you are 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

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

endocrinenews.endocrine.org...

In week before blood test, when you stop vitamin B complex, you might want to consider taking a separate folate supplement (eg Jarrow methyl folate 400mcg)

Post discussing how biotin can affect test results

healthunlocked.com/thyroidu...

ThyroidObsessed profile image
ThyroidObsessed

I work for Holland and Barrett and get a lot of older ladies that come in and buy crystallised ginger and eat a cube a day! They swear by them for acid reflux! We also sell some ginger sweets called gin- gins that are also very popular too!

Hope this helps you ☺️

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