I'm new here and desperately need some help, please.
I have to take Levothyroxine and Lanzoprazole daily, plus alendronic acid once a week. Fitting them in is a nightmare and I am having so many digestive problems due to my IBS coupled with a very restricted diet, especially in the last few months. I just feel ill all the time. An internet search has just made me more confused. Is it really worth all the hassle?
First thing is do you have any actual blood test results? If not you need to get hold of them. You are entitled under data protection laws.
You may be able to view test results online - ring and ask about this. If you can then apply for online access to your account. All GP practices are supposed to offer this, in reality very few have blood test results available online.
If not then ask for print out of recent tests. Pick up in a day or two. They may make a nominal charge for paper.
You need to know results for TSH, FT4 and FT3.
Do you also have high thyroid antibodies? You need to know. Did GP or Endo ever test these? If not ask that they are tested.
Essential to test vitamin D, folate, ferritin and B12. Always get actual results and ranges. Post results when you have them, members can advise
If antibodies are high this is Hashimoto's, (also known by medics here in UK more commonly as autoimmune thyroid disease).
About 90% of all hypothyroidism in Uk is due to Hashimoto's
Hashimoto's affects the gut and leads to low stomach acid and low vitamin levels
Low vitamin levels stop Thyroid hormone working
Poor gut function can lead leaky gut (literally holes in gut wall) this can cause food intolerances. Most common by far is gluten
According to Izabella Wentz the Thyroid Pharmacist approx 5% with Hashimoto's are coeliac, but over 80% find gluten free diet helps significantly. Either due to direct gluten intolerance (no test available) or due to leaky gut and gluten causing molecular mimicry (see Amy Myers link)
But don't be surprised that GP or endo never mention gut, gluten or low vitamins. Hashimoto's is very poorly understood
Changing to a strictly gluten free diet may help reduce symptoms, help gut heal and slowly lower TPO antibodies
Low stomach acid can be an issue, very often misdiagnosed as high stomach acid. But you must not just stop Lansoprazole, it must be done very slowly and only once you are definitely sure it's low acid
Your dose of Levothyroxine needs to be high enough to bring TSH down to around one and FT4 towards top of range and FT3 at least half way in range
Dr Toft, past president of the British Thyroid Association and leading endocrinologist, states in Pulse Magazine,
"The appropriate dose of levothyroxine is that which restores euthyroidism and serum TSH to the lower part of the reference range - 0.2-0.5mU/l. In this case, free thyroxine is likely to be in the upper part of its reference range or even slightly elevated – 18-22pmol/l. Most patients will feel well in that circumstance. But some need a higher dose of levothyroxine to suppress serum TSH and then the serum-free T4 concentration will be elevated at around 24-28pmol/l. This 'exogenous subclinical hyperthyroidism' is not dangerous as long as serum T3 is unequivocally normal – that is, serum total around T3 1.7nmol/l (reference range 1.0-2.2nmol/l)."
You can obtain a copy of the articles from Thyroid UK email dionne.fulcher@thyroidUK.org. print it and highlight question 6 to show your doctor.
Prof Toft - brilliant article just published this week
Thankyou. I didn't know this till a few weeks ago, but since I have been taking them together for the last 8+ years, the doctor says my body will have adjusted and as all my blood tests are ok, I'm to continue. Changing routine is the worst thing. I have to have them before eating in the morning, so if I had to wait 4 hours, I'd never eat till lunchtime. I'm always hungry! I spoke to my local pharmacist yesterday and she has suggested a new regime which I will try from this week, and I'm waiting to see a nutritionist at the hospital to sort out a proper diet. I'm not hopeful of help from her as I've seen one before and it was a waste of time.
Is this the doctor who didn't advise you of the interaction over the past 8+ years?
Please don't take this as pushing you to make any changes - you would obviously find any change difficult so have to make your choices carefully. But you could switch to taking your levothyroxine at bed-time. I do and always have.
If you were to do so, you might find that you don't need quite so much levothyroxine due to improved absorption. Therefore you'd be best advised having a test after a few weeks.
I really don't know what to do for the best! I'm just so worn down by feeling ill all the time and being given conflicting advice and frightening possible scenarios if I don't take the medication. How long after food do you take your thyroxine please?
I typically finish dinner before 20:00 and take my levothyroxine around 23:00 - but there is always the possibility of a little bit of chocolate being consumed...
It can be a bit of a nightmare fitting it all in! I've recently had a bad Fall and had an arm looking like a dogs hind leg so during the night with gas and air they pulled it straight and then 11 days later put a plate in my arm to keep things in place but I got my head bitten off because I wouldn't take an early morning strong pain killer because I wanted to put my thyroid first! He was trying to be helpful but has no idea how quickly things go wrong if I don't put my thyroid first!
Thankyou for your reply. It is all a total minefield, but thanks to people contributing to this website, I have been encouraged to keep going and find a way through it. Thanks to other sufferers, please note, not thanks to doctors or health professionals!
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