Just been diagnosed with a stomach hernia I thi... - Thyroid UK

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Just been diagnosed with a stomach hernia I think Levo is making it worse not sure what to do any advice please

Kazbe profile image
Kazbe
•10 Replies

Hi everyone happy healthier new year to you all 😀

I’ve not posted for a long time but just been diagnosed with a stomach hernia and got awful gastritis ! I currently only take 75mg Levo but I’ve noticed after I take it early in an empty stomach I can taste metallic like blood taste in my mouth ! I’m being treated for gastritis or stomach ulcer omeorazole 20mg morning and night but since this hernia I feel awful last year I had some nature throid reduces Levo to 50mg took 1/2 grain for 2 weeks and improved then took 75mg Levo and increase to one grain I felt so much better ! But panicked when Endo discharged me my Tsh was 0.75 (0.05-5.0) I felt well but they wouldn’t support nature throid :( with all my stomach issues now not sure if to revert back to nature throid and Levo or try Wokhart Levo in case it’s mercury pharma

My TSH has a 3.75 0.05-5.0

Any advice I’d be most grateful my stomach feels awful tried reducing but becoming hypo

Thankyou for reading and any advice

Kazbe 😀

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Kazbe
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SlowDragon profile image
SlowDragonAdministrator

Just testing TSH is completely inadequate

But even with only a TSH it's clear that you are on inadequate dose of Levothyroxine and need 25mcg dose increase

Gut symptoms are extremely common when under medicated

The aim of Levothyroxine is to increase the dose slowly in 25mcg steps upwards until TSH is under 2 (many need TSH significantly under one) and most important is that FT4 in top third of range and FT3 at least half way in range

NHS guidelines on Levothyroxine including that most patients eventually need somewhere between 100mcg and 200mcg Levothyroxine.

nhs.uk/medicines/levothyrox...

Also what foods to avoid (eg recommended to avoid calcium rich foods at least four hours from taking Levo)

See GP and request 25mcg dose increase in Levothyroxine and also get vitamin D, folate, ferritin and B12 tested

All four vitamins need to be regularly tested and frequently need supplementing to maintain optimal levels

What vitamin supplements do you currently take?

Thyroid levels will need retesting 6-8 weeks after each dose increase in Levothyroxine

Or after any brand change in Levothyroxine

Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .

Last dose of Levothyroxine 24 hours prior to blood 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)

How long have you been on PPI?

This can exacerbate low vitamin levels

pulsetoday.co.uk/clinical/m...

gov.uk/drug-safety-update/p...

Kazbe profile image
Kazbe• in reply toSlowDragon

Thankyou SlowDragon

I will make an appointment with my GP they will only test TSH now unfortunately when I was on T4 /NDT a few months back I saw the Endo he saw my TSH was almost supressed and refused to test T4 or T3 and discharged me ! I told him that I thought the NHS was totally inadequate with there testing and TSH doesn’t give a full picture he shook my hand and opened the door ! I’ve been on PPI for just over 6 weeks and 4 weeks ago my TSH had shot up to 3.75 and when the dr looked at results he said no that’s fine no need to change anything:( so I think I may just increase my thyroid needs myself , I take 3000 Vit D B12 spray vit c selenium magnesium at night then I might just add 1/2 grain NDT to 75mcg Levo and see how I get on for two weeks then up to 1 grain hopefully I should get back in track again :) my GP is useless il get medichecks bloods done too:)

Thanks Again for advice I appreciate it

😀

SlowDragon profile image
SlowDragonAdministrator• in reply toKazbe

Most hypothyroid patients have low stomach acid. Ppi is to treat high stomach acid

Stopping NDT will probably have reduced your levels considerably

Hundreds of posts on here about low stomach acid

healthunlocked.com/search/p...

Links

articles.mercola.com/sites/...

thyroidpharmacist.com/artic...

stopthethyroidmadness.com/s...

How to test acid levels

healthygut.com/articles/3-t...

naturalendocrinesolutions.c...

SilverAvocado profile image
SilverAvocado

Kazbe, was that TSH of 0.75 (0.05-5.0) considered to be low by your doctor? What nonsense, that TSH is well inside the range. Most people will need a TSH below 1, often very far below, to feel well. Your TSH in that case was over 10x the bottom of the range - a much much bigger number.

It sounds like you've had absolutely awful experiences with doctors, and they are determined to keep you unwell. I agree with Slowdragon, PPIs are one of the big no no medications, they lead to enormous health problems and are particularly bad for us hypothyroid people.

To me it seems like you need to either change doctors and find one who will treat your thyroid properly, or you will have to self medicate. Nature Throid is a great alternative. But you might feel fine on Levothyroxine if it was just dosed correctly.

I suggest getting a finger prick mailorder blood test from Bluehorizon or Medichecks. You desperately need to see a full panel, TSH, freeT4 and freeT3. Unless the budget is tight get vitamins too, ferritin, folate, B12 and vit D. Being hypo, particularly when stomach acid is low really trashes our vitamins.

Lora7again profile image
Lora7again• in reply toSilverAvocado

My TSH is 0.70 and has been 0.53 last year after a thyroid storm and my Doctors thinks they are both perfect ... that is why the TSH is not a good indicator of thyroid function imho.

Kazbe profile image
Kazbe• in reply toSilverAvocado

Thanks SilverAvocado for your detailed response when I was on 75mg of Levo I increased my nature throid to one grain for a month and these were my results from medichecks on the 29/10/19

TSH 1.4 (0.27-4.2)

Free T3 5.05 (3.1-6.8)

Free Thyroxine 19.5 (12-22)

TPO 301 (34)

Thyroglobulin antibodies 230 (115)

I was feeling a lot better and when I saw Endo my Tsh had gone done a little further 0.75 I think he was very evasive !

Now with my gastritis and hernia I’m on Levo only and feel terrible stopped the NDT and within a few months TSH 3.75

Just revived more NDT so I think il start the 1/2 grain to the 75mg Levo and over 2 weeks increase and after 6 weeks test do you think that’s a good idea ?

Thankyou so much I appreciate your support and everyone that has commented Thankyou

Kazbe😀

SilverAvocado profile image
SilverAvocado• in reply toKazbe

Kazbe,

A quick interpretation of those blood tests. The most important number to look at is freeT3, as this shows the amount of active hormone in the blood. Most people will need this in the top third or so of the range to feel well, yours is almost exactly halfway, so this suggests you're undermedicated. It can take a few increases to get this where it needs to be.

FreeT4 is much less important and it tends to drop when taking NDT. Yours is about 70% up the range. This is an okay number to have. Some people feel better with it at a decent level like this even once T3 is introduced (NDT contains T3).

TSH, it thyroid stimulating hormone, is a chemical messenger telling the thyroid to make more hormone. Usually once we're on adequate thyroid hormone replacement this becomes almost non existant. Yours is still quite a bit higher than we'd expect to see once you feel well, so it matches the freeT3 result, and overall you look pretty undermedicated.

Are you saying that you added the 1 grain of Naturethroid to your previous dose of 75mcg of Levo? Or you stopped taking the Levo and started on Naturethroid instead?

Levothyroxibe and Naturethroid both contain thyroid hormone in different forms, so even though they are different types of tablets they end up being the same kind of thing once in your body. When considering your thyroid hormone dose as a whole, we include add up any Levo or NDT (Naturethroid is an NDT) in the same basket. Of course because they are handled a little differently by the body, they can as different as possible in how they impact symptoms!

1 grain of Naturethroid is the equivalent of about 75mcg of Levo, so when you added in that one grain you doubled your dose. This means when you cut out that 1 grain on your doctor's instructions, you halved your dose. So you'll have gone from pretty undermedicated to desperately undermedicated. I'd expect you to be feeling very ill.

How to dose NDT is quite a big topic. Usually you wouldn't add NDT to your previous Levo dose, you'd stop taking your Levo altogether and replace is with NDT. If you're in a situation where you're fudging things a bit because you get NHS Levo and you want to supplement some additional hormone in the most cost effective way, it can sometimes be a pragmatic choice to do so.

I think my advice to you would be to do some more research before you attempt to self medicate so that you are making a fully informed decision for yourself, with all the pros and cons in front of you. If I advise you what to do I'd be telling you my own opinion, but that's just one way of doing things, and if you had all the info you might do something different.

This forum is an amazing resource. When I first found it I was very sick and not able to read any books or papers, I just came to the forum every day and read a little bit. After two or three months of doing that, I felt I knew enough to start self medicating. I strongly suggest you do the same or something similar.

These are very powerful tablets, and need to be treated with respect and care. Too often we see people on the forum who have started taking them without a plan, or without understanding their own blood tests or how to dose, and they get into a pickle and waste months without making any progress. Get to the point where you can read the blood tests, know the pros and cons of starting with NDT, adding T3 to your dose, or supplementing your NHS tablets. Once you're there you'll be ready to start.

Sheila46 profile image
Sheila46

I feel for you Kazbe as I’m hypo and in a similar position to you having been diagnosed with gastritis 3 weeks ago and given Omeprazole 20mg twice a day. I had ongoing nausea for 6 weeks prior to seeing the GP (I hate going and put it off as long as pos) the nausea has improved but I think the PPI’s could be masking it I also have a burning in my mouth with a lemony ash taste. I saw a you tube video a couple of days ago from a UK pharmacist would said you must leave 4-6 hour gap between taking levo and PPI’s, which I’m now doing -Levo first thing in morning PPI before lunch and dinner. I’m am also going to get my levels checked again as remembering back on going nausea was one of the many symptoms I had when first diagnosed.

Miffie profile image
Miffie

I have been on both Omeprazole and Ranitidine for several years. Originally Omeprazole only for Hiatus Hernia and Barrett’s oesophagus about eight years ago but had more symptoms and Ranitidine added four years ago. My thyroid was destroyed by radiation in the early 1950s and I have no autoimmune issues. I think that those with Hashi suffer with leaky gut and low stomach acid in a way that is horrid for them. It doesn’t seem to apply in my case, lucky me. Sorry you are having problems. Take care. x

Kazbe profile image
Kazbe

Thankyou Miffie

I appreciate your message and kind words I hope your health improves hers to a better and healthier 2020 x

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