I am going to ask my endo today about some symptoms I have been having since starting Levo in Aug 2017 after having my dose stopped twice since diagnosis. Diagnosed hypothyroid in 2012.
Basically a few days after starting Levo (brand Teva) I had some stomach cramps, empty feeling in gut, nausea, vomiting, diarrhoea. My last bloods were taken in December with
Free T4 14.8 (12 - 22)
TSH 4.88 (0.2 - 4.2)
I was on 25mcg Levo reduced from 175mcg.
So I am undermedicated. But I feel like a nuisance in asking for my brand to be changed, is it asking too much? I can't carry on like this.
Thank you
Thanks
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Urzsula
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Good grief, why on earth was dose reduced that much. Should only ever be increased or decreased by 25mcg at a time
No wonder you are seriously under medicated.
Your endocrinologist is probably a Diabetes specialist.
How long since dose reduced? It needs increasing back up, usually in 25mcg steps, retesting 6-8 weeks after each dose increase.
If only recently reduced you may be able to tolerate more rapid increase, eg by 50mcgs
Your 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
Essential to test vitamin D, folate, ferritin and B12. Always get actual results and ranges.
Highly likely to be absolutely dire after such terrible dose reduction
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
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
Ask GP for coeliac blood test first
Persistent low vitamins with supplements suggests coeliac disease or gluten intolerance
Endocrinologists rarely consider vitamins, poor gut function, gluten intolerance
As patients we MUST consider the autoimmune aspect. Endo's ignore it
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
Professor Toft recent article saying, T3 may be necessary for many
With Hashimoto's we must FIRST get Levo dose high enough to bring TSH down to around one and FT4 towards top of range, plus vitamins optimal
Gluten free diet helps enormously or is absolutely essential for many
If FT3 remains low then, like many with Hashimoto's, you may need a small dose of T3 adding. But other steps must be taken first
Email Thyroid UK for list of recommended thyroid specialists, some are T3 friendly
please email Dionne
Tukadmin@thyroiduk.org
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
Dose reduced because endo told me the only way to understand what dose I should be on is to start all over again since my results are all over the place. I take iron tablets and vit D, results of these below
Ferritin 22 (30 - 400)
Folate 4.1 (4.6 - 18.7)
Vitamin B12 210 (190 - 900)
Vitamin D 33.1 (25 - 50 deficient. Supplementation indicated)
Your endo is totally nuts if he says something like that! He needs to realise that your results are ‘all over the place’ because you are not having enough thyroxine to stop you being hypo.
Your ferritin and folates are shockingly low and although your B12 and vitamin D are with8n the range they really ought to be at least above half way through the range.
I don’t think your doctor understands at all how to treat hypothyroidism or in your case (because you have antibodies) Hashimoto’s.
These vitamins are absolutely dire and must be improved
your B12 is extremely low. You need testing for Pernicious Anaemia before starting on B12 injections. Folic acid supplements should not be started until 48 hours after first B12 injection
Ferritin is far too low. You need full iron panel, possibly an iron infusion to bring level up quickly
Vitamin D is appalling considering you are on supplements. Ask endo to prescribe loading dose
If they won't give loading dose you can self supplement. Many of us find vitamin D mouth spray by Better You is good as avoids poor gut function. Suggest 2 x 3000iu spray for 2 months, then retest via vitamindtest.org.uk £28
All these are direct result of having your dose cut
This post has Detailed supplements advice on Low vitamins due to under medication
Sack the endo and get a different brand of levothyroxine. A lot of people have had problems with Teva. I had problems in the past. You need to complete a yellow card to flag up that you have had problems.
Do hope you soon get back on a proper dose of levothyroxine which is necessary to help with the antibodies. Gluten free diet definitely helps reduce antibodies. Even if your coeliac test is negative you can still be sensitive to gluten, most people with hashis (me included) are better for GF diet
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