Thyroid UK
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Hashimoto and severe LPR/GORD

I have been diagnosed with Hashimoto thyroid problems for about 10 years, I ham on a small dose of Levothyroxine 25MCG daily, however I feel really ill with various complaints, pins and needles, cramps, gritty eyes, ear aches, palpitations, cramps, constipation but the worst complaint of all is severe acid reflux and laryngopharangeal reflux, I can barely swallow my own saliva, I have lost 2 stones in weight and I am severely malnourished, I cannot eat and I am relying on Fortisips and yogurts from the GP. I am on the verge of demanding a Nissen Fundlopication but I am terrified of the operation. I cannot take PPI's and H2 Blockers to help with the severe throat burning I suffer, I tried them for 6 months and they made me worst. I am in floods of tears writing this because I feel like I am dying inside and no one can help, should I stop the Levothyroxine to see if the stomach issues lessen? Tha stommach problems started 12 months ago when I was given an antibiotic overdose in hospital, they made me so ill and from that moment on the stomach problems started. I have recurrent chest infections and a mouth and throat full of ulcers, can anyone advice me please...Thank you Sonz

23 Replies
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Have you been on 25mcg for 10 years ? Far too low - not even a starter dose. Do you have any test results with ranges to share ? Have you been tested for Pernicous Anaemia ?

Welcome 😊

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They started me on 50mcg but I had a fast heart rate and dizzyiness, so I was told to take 25mcg, I have never felt well but the last 12 months have been horrific, unable to eat and things...should I just stop the Levothyroxine and see what happens?

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Tonyturnip01,

Can you post your recent thyroid results and ranges (ranges are the figures in brackets after the results). It will help members to see whether you are optimally dosed on 25mcg Levothyroxine. If you have results and ranges for ferritin, vitamin D, B12 and folate please also post those.

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I don't have any results to post, last time I was checked, the GP just said normal, whatever that means?

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Tonyturnip01,

Ask your GP receptionist to printout your recent thyroid results and ranges and write them in a new post and members will advise whether you are optimally dosed or need to increase dose. If ferritin, vitamin D, B12 and folate were tested ask for those results too and the results of your full blood count.

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I asked for a copy of my last NHS thyroid test which was last October (2016)

They read

Thyroid function test-Normal no action

Serum TSH Levels 3 mU/L 0.35-5.50mU/L

Serum free T4 level 10.9 pmol/L 7.00-17.00pmol/L

That is all they have written on the report, but I feel really unwell.

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Tonyturnip,

You were undermedicated to have TSH 3.0. Ask GP to increase dose.

The goal of Levothyroxine is to restore the patient to euthyroid status. For most patients that will be when TSH is 0.35 - 1.0 with FT4 in the upper range. FT4 needs to be in the upper range in order that sufficient T3 is converted. Read Treatment Options in thyroiduk.org.uk/tuk/about_... Email dionne.fulcher@thyroiduk.org if you would like a copy of the Pulse article to show your GP.

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Thank you very much, so really I should be on 50MCG perhaps and not 25MCG as I have been on for years, is T4 level ok at 10.9? sorry I don't understand my readings properly

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TonyTurnip01,

Yes, you need 50mcg.

10.9 is low in range which is why TSH is 3.0. Ideally FT4 will be over 12 - 17.

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Has your doctor ruled out helicobactor pylori?

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I have had an endoscopy, no H Pylori, just Gastritis, acid reflux and a loose oesophageal valve, I have had a full blood count test for defeciencies and the results were satisfactory no action.

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The Full Blood Count or FBC does NOT include B12 - Folate - Ferritin - VitD. These are the important tests that enable your Thyroid Meds to work well in the body and for you to feel well. Often palpitations are due to LOW iron and Folate and B12 - also VitD has a role to play.

Obtain your results and start a new Post - they are legally yours and it is the only way to know what is truly going on. On 25 mcg it is possible you are very under medicated - and of course you need those vitamins and minerals tested. Read around this forum - especially yesterdays posts - and view just how neglectful doctors can be ....

Mouth ulcers could be LOW B12.

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Would it make sense for me to have a private blood test to check things out with my Hashimoto? I have googled a private test, is this comprehensive enough Our best-selling thyroid blood test examining levels of TSH, T4, FT4 and FT3 as well as thyroid antibodies for a comprehensive picture of thyroid health? or do I need something different, I have no idea with the figures and what is normal or what I should look out for, thank you very much for any advice in advance.

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

The above link will take you to the very popular companies used by many members of this forum. Check them out and come back here if you have any questions. There are Special Offers on Thursdays posted here on the Forum - so keep an eye out ! I cannot advise as I live in Crete.

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Here is a link to one of the tests with one of the companies via thyroid uk, this is medichecks who do special offers on Thursday's so worth checking. Blue horizon does pretty much the same so worth comparing prices when ordering. You can do finger prick blood test t home or arrange for sample done the usual way.

medichecks.com/thyroid-func...

bluehorizonmedicals.co.uk/t...

this one has vitamin d test as well, medichecks do the same. You can do vitamin d separately for about £30.

Either I'll give you a good picture of what is going on but vitamin d is needed I just did mine separately as that as well at the time meant I couldn't do it via finger prick at home....

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Thank you everyone for the advice you gave me...........I ordered a test for a full thyroid screen from Medichecks.com, it arrived last Saturday and I posted it off this morning. I had also asked the GP for a repeat thyroid test last week, I visited the practice to have the blood taken this morning. Because I feel really sick and have done for over a year, I am worried about what the GP will say when I go back for my NHS results in a couple of days, my test last October was Serum TSH Levels 3 mU/L 0.35-5.50mU/L

, Serum free T4 level 10.9 pmol/L 7.00-17.00pmol/L, they said that was normal and to stay on my 25mcg dose of Levothyroxine, symptom wise it isn't because I feel terrible. I wanted advice about seeing someone privately, how do I find an endocrinologist who will be more sympathetic to how I feel, is there a website or anything that any of you could suggest, I live in North Wales...Thank you very much everyone

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It might be worth asking for your Cortisol to be checked - I was suffering from some of those symptoms and it turned out that I have Adrenal insufficiency. Clemmie

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How is Adrenal insufficiency addressed Clemmie? thank you

I have asked for a hormone blood test also, they said they were re testing my thyroid next Monday morning but I am still going to have a private thyroid test also

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You would need your Cortisol checked for Adrenal insufficiency. It is very serious, my adrenal glands have stopped working and do not produce any cortisol at all so I now have to take hydrocortisone 4-6 hourly, for the rest of my life. If I become unwell or have an accident, I need to double my daily dose as I could quickly slip into a coma and die. I have emergency injections if I should start to vomit. Before I was diagnosed, I felt that I was dieing and that’s what was slowly happening. I couldn’t eat, lost a great deal of weight, headaches 24 hours a day, nausea, abdominal pain, dizziness, craving salt and just felt very very ill. I wasn’t functioning and lay on the sofa for 5 months. I really hope that you don’t have this, it isn’t pleasant and even with the medication, the symptoms still break through. But I’m lucky that I’ve been diagnosed quite quickly because it’s very rare and I am slowly feeling better.

Clemmie

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Gosh how frightening for you, simply awful Clemmie.

My symptoms are severe acid reflux/LPR,gritty eyes, cramps,pins and needles, brain fog,laryngitis,difficulty swallowing, lost 2 stones even though I have Hashimoto,palpitations,constipation,hair has thinned, loss of half of my eyebrows,dry skin....those are what come to mind at the moment, I struggle to sleep also but I feel tired all the time and because I feel unwell I can't be bothered doing anything, simple tasks seem difficult to do, I can't look forward to anything and feel I am going to be ill forever

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something else also, my temp is always 35 point something, always very low and I am always cold, even in Summer I didn't feel warm

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That’s how I was feeling, that I was never going to feel better. Definitely ask for a Cortisol Test, my gastroenterologist only suggested the short synacthin test because Ive got Hashimotos /underactive thyroid and Adrenal insufficiency can be caused by adrenal antibodies. And autoimmune disorders are rarely on their own, they love company. But also, you are on a very low dose of thyroxine so it’s highly likely that you need an increase. Clemmie

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Tha stommach problems started 12 months ago when I was given an antibiotic overdose in hospital, they made me so ill and from that moment on the stomach problems started.

If your stomach problems started when you were overdosed on antibiotics then it is very likely that lots of your good gut bacteria were killed off by the antibiotics and that undesirable bacteria have taken up residence. Unhealthy gut bacteria can reduce stomach acid, just like PPIs and H2 blockers do. Having low stomach acid will reduce your body's ability to extract nutrients from your food.

Hypothyroidism also reduces stomach acid, and since you have clearly been under-dosed on levothyroxine for years your levels of nutrients are almost certainly desperately bad now.

Doctors think that indigestion and acid reflux is always caused by too much stomach acid. In fact they are wrong. It is almost always too little stomach acid that causes reflux, and increasing the amount of acid you have in the gut will help more than reducing it. You really need to rebuild your gut bacteria and nurse your gut back to health. It won't be easy. Some links that might help :

scdlifestyle.com/2012/06/hy...

scdlifestyle.com/2012/03/3-...

scdlifestyle.com/2012/03/ho...

scdlifestyle.com/2013/10/4-...

And a series of articles that are well worth reading, even though they are rather long. They will help you to understand the connections between acid reflux, gut bacteria and stomach acid :

chriskresser.com/what-every...

chriskresser.com/the-hidden...

chriskresser.com/more-evide...

chriskresser.com/how-your-a...

chriskresser.com/how-your-a...

chriskresser.com/get-rid-of...

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