I voluntarily came of Liothyronine just before Christmas..... couldn't stomach the cost, around £20 per tablet - that's robbery. I had requested to go on a few years ago - had read it could help with geeing me up, help with fatigue, fuzzy head, low mood, and general improve my "get up and go" which had "got up and gone". It was my request and I went through the long process of seeing endo and gp. Was fine for a good while - was this the placebo effect? Who knows? Upshot started to feel meh again and ended up being re-referred and low and behold, as a complete punt as I have no "traditional" symptoms" I have full blown coeliac disease. Was the coeliac the reason for feeling meh all along. My meh is - fatigue, churning stomach, low mood, poor sleep - fall asleep fine, then wake up after 2 hours and then wide awake for 3 hours, then fall asleep again - not very good. Anyway, my dose at moment is 200mcg levothyroxine. Had my blood glucose and thyroid levels tested this morning (results in 3-4 days) and we will see what they suggest. I have been exposed to people with influenza but don't have it. Just feel tired and under the weather. Had gestational diabetes and am technically obese (hate that word). Am starting the blood type diet (why not, tried everything else) and we will see if shifting weight might improve sleep quality, fatigue and lift my mood and general wellbeing. Here's hoping.
In my ponderings: are thyroid folk being advised to go gluten free? Is gluten, which apparently causes havoc for autoimmune thyroid folk, the big baddie here? The classic symptoms of weight loss, diarrhoea do not apply to everyone. In fact, the symptoms can be very subtle and mimic and cross over with loads of other conditions which is possibly why it is not picked up as often as it might. That said, the nasty coeliac disease does catch up with you eventually - as do most other conditions, if you don't adhere to lifestyle change. I'm not preaching, just wondered if folk were aware of this? Up until around 3 years ago, I certainly wasn't. Then I got to thinking, how long have I been coeliac? Did the coeliac knock out the thyroid? One of life's ponderables that I probably will never find the answer! Happy days x
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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)
If your antibodies are high this is Hashimoto's, (also known by medics here in UK more commonly as autoimmune thyroid disease).
It's extremely likely as you are coeliac too
About 90% of all hypothyroidism in Uk is due to Hashimoto's
Essential to test vitamin D, folate, ferritin and B12. Always get actual results and ranges. Post results when you have them, members can advise
Hashimoto's affects the gut and leads to low stomach acid and then low vitamin levels
Low vitamin levels affect 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
Many many patients who have had T3 forcibly removed (due to cost) have experienced significant drop in vitamin levels. Presumably because stomach acid levels drop
You must closely monitor vitamin D, folate, ferritin and B12
Most/many that have issue with gluten need addition of small dose of T3
Dr Toft, past president of the British Thyroid Association and leading endocrinologist, article just published now saying T3 is likely essential for many
For many liothyronine is the difference between being able to work and not work. I agree the way the drug companies have driven up the cost is immoral but the ability to be a tax paying member of society as opposed to someone unable to contribute outweighs this. As to coeliac causing hashimoto’s and vice versa it is similar to being atopic and allergic. If you have one auto immune disease you are more likely to develop another, not just coeliac or hashimoto’s but rheumatoid arthritis, sjorens syndrome, lupus etc. Research has yet to identify the triggers for the development of many of these diseases.
Just had my blood test results. I am 200 mcg levo having gone from 150 mcg levo and 20mcg - I made the change in late December. So.... overweight female, 50 years, fasting glucose 5.0 and TSH 0.60. Receptionist said results are fine, I asked for the values. Only TSH tested. Should I be requesting others? Had Vit D tested last year - result was 54?, B vits and irons all ok but do not have the ranges. Glucose was measured as I had gestational diabetes x 2. Have just started an elimination diet, as I have coeliac gluten is a given, but have started to eliminate dairy to see if I feel better. Early days. Still waking up too early (thinking age ... female hormone fluctuation?), I am not stressed just tired. I've only been on the diet for 6 days so will see how I am in 3 months. I am also reducing calories to try and reduce my embarrassing BMI!
By the way, thanks for the replies and the web links.... fascinating and interesting information. I do appreciate it. Can be quite a minefield of information. Just need to work out what is best and what works for me. Thanks x
Technically you have replied to yourself - so people will not have seen your post above as you forgot to click onto the Green Reply button - to maybe SlowDragon who gave you a good lengthy reply at the beginning.
Telling you results are 'OK' is just an opinion you really must obtain the hard copy of your results with ranges that are legally YOURS. Doctors seem to think all is well when results are in range - when it is WHERE you are in the range that is important. B12 needs to be over 500 - Folate and Ferritin - mid range and your VitD is LOW and needs to be around 100. Are you supplementing VitD ?
As you are on a good dose of T4 you should be feeling good - so you MUST have the FT4 and the FT3 tested to see how you are converting. The 200 you are taking is a storage hormone - doing very little but hanging around in the liver and kidneys - and waiting to be converted into the ACTIVE hormone T3 - needed in EVERY cell in your body. Anti-bodies - have they been tested - sorry think I have asked before So you need the FT3 result to see if you are converting well.
Nothing will work well if the B12 - Folate - Ferritin - VitD are low in range - they are needing to be optimal so your thyroid hormones work well in the body - and for you to feel well. I am suspecting your FT3 level will be LOW and as the active hormone is needed to assist the metabolism and to help with weight.
Are you able to have Private Testing in your home through Thyroid UK - that way you can have the tests you need and take control of your health. Link below and used by 100's on the Forum.
Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have money off offers.
All thyroid tests should be done as early as possible in morning and fasting and don't take Levo in the 24 hours prior to test, delay and take straight after. This gives highest TSH, lowest FT4 and most consistent results
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 print it and highlight question 6 to show your doctor please email Dionne: tukadmin@thyroiduk.org
Prof Toft - article just published now saying T3 is likely essential for many otherwise we very often need high dose Levothyroxine to take FT4 to top or above range to get high enough conversion to T3.
This is especially true with any gluten connection
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So you need the FT3 result to see if you are converting well.
Could I come off my levothyroxine medication slowly?
Gluten, CFS, Thyroid Dilemna
At a dead end with GP, where to go from here?
Can you check my results please?
Difficulty Reaching Diagnosis
