Hello
I’ve been taking 25mg of levothyroxine only one week and have experienced constant loss of appetite, more nausea than usual and a bout of diarrhoea. I’m told it takes a few weeks for levothyroxine to kick in but I’m seriously doubting that. Is this something I have to ensure or is it not normal?
Would love to feel well!
Pearpear
Sometimes the excipients in a tablet can cause adverse reactions. What brand of Levo are you taking?
Wockhardt? I think. I’ve read some places loss of appetite can happen as well as nausea but thought I’d feel a little better. First few days I felt great! Then it went downhill rather quickly.
Recent bloods:
TSH 6.10
Serum free T4 level 11.8
How old are you
Male or female?
Standard starter dose of levothyroxine is 50mcg unless over 65 years old, or heart condition or been very hypothyroid very long time
Levothyroxine doesn’t “top up” thyroid ….it replaces it
Very common to initially feel worse…..especially on low dose
Have you had thyroid antibodies or vitamin D, folate, B12 and ferritin levels tested yet
About 90% of primary hypothyroidism is autoimmune thyroid disease, usually diagnosed by high thyroid antibodies
Autoimmune thyroid disease with goitre is Hashimoto’s
Autoimmune thyroid disease without goitre is Ord’s thyroiditis.
Both are autoimmune and generally called Hashimoto’s.
Low vitamin levels are extremely common when hypothyroid, especially with autoimmune thyroid disease
Thanks for your response! Yes I have thyroi antibodies, 100 and something last time they were checked. Always had borderline tsh though so never medicated. So as my thyroid is pumping thyroxine around already, the 25mg doesn’t top up but replaces?! So I could actually have lower than before I started meds? That’s madness!
do you have any research on the replacement and not topping up?
I’m 35 female
High thyroid antibodies confirms autoimmune thyroid disease also called Hashimoto’s
Request coeliac blood test (assuming you’re not already on strictly gluten free diet)
5% of Hashimoto’s patients test positive for Coeliac, but Approx further 80% find gluten free diet helps or is essential
nice.org.uk/guidance/ng20/c...
1.1 Recognition of coeliac disease
1.1.1 Offer serological testing for coeliac disease to:people with any of the following:
persistent unexplained abdominal or gastrointestinal symptoms
faltering growth
prolonged fatigue
unexpected weight loss
severe or persistent mouth ulcers
unexplained iron, vitamin B12 or folate deficiency
type 1 diabetes, at diagnosis
autoimmune thyroid disease, at diagnosis
irritable bowel syndrome (in adults)
first‑degree relatives of people with coeliac disease.
If not had vitamin D, folate, B12 and ferritin tested request these are tested too
guidelines on dose levothyroxine by weight
Even if we frequently start on only 50mcg, most people need to increase levothyroxine dose slowly upwards in 25mcg steps (retesting 6-8 weeks after each increase) until eventually on, or near full replacement dose
NICE guidelines on full replacement dose
nice.org.uk/guidance/ng145/...
1.3.6
Consider starting levothyroxine at a dosage of 1.6 micrograms per kilogram of body weight per day (rounded to the nearest 25 micrograms) for adults under 65 with primary hypothyroidism and no history of cardiovascular disease.
Also here
cks.nice.org.uk/topics/hypo...
pathlabs.rlbuht.nhs.uk/tft_...
Guiding Treatment with Thyroxine:
In the majority of patients 50-100 μg thyroxine can be used as the starting dose. Alterations in dose are achieved by using 25-50 μg increments and adequacy of the new dose can be confirmed by repeat measurement of TSH after 2-3 months.
The majority of patients will be clinically euthyroid with a ‘normal’ TSH and having thyroxine replacement in the range 75-150 μg/day (1.6ug/Kg on average).
The recommended approach is to titrate thyroxine therapy against the TSH concentration whilst assessing clinical well-being. The target is a serum TSH within the reference range.
……The primary target of thyroxine replacement therapy is to make the patient feel well and to achieve a serum TSH that is within the reference range. The corresponding FT4 will be within or slightly above its reference range.
The minimum period to achieve stable concentrations after a change in dose of thyroxine is two months and thyroid function tests should not normally be requested before this period has elapsed.
please add age and gender to profile
So as my thyroid is pumping thyroxine around already, the 25mg doesn’t top up but replaces?! So I could actually have lower than before I started meds? That’s madness!
Yes correct…..starting on too low a dose will initially result in becoming more hypothyroid…..unfortunately not a concept some GP’s understand
However if been hypothyroid a long time ….and it sounds like that may have been you …..it’s important to start slowly or it’s too much of shock to rest of endocrine system, especially adrenals
It takes 6-8 weeks for each dose increase in levothyroxine to have full effect
Blood test should then be redone, always early morning and last dose levothyroxine 24 hours before test…..
Assuming test shows inadequate dose next 25mcg dose increase in levothyroxine started ……retesting again 6-8 weeks later
Typically takes 6-12 months to slowly increase levothyroxine to full replacement dose
Getting vitamins tested and optimal by supplementing can significantly improve symptoms
When hypothyroid we frequently develop low stomach acid, this leads to poor nutrient absorption and low vitamin levels as direct result
Many hypothyroid Patients need to supplement vitamin D, magnesium and vitamin B complex daily
But ALWAYS test first BEFORE starting and vitamin supplements
Retest vitamin levels at least annually
had vitamins tested very recently, all well within average apart from magnesium which was low end of average and I already take mag supps
please add actual results and ranges
Exactly what supplements are you taking
It feels frustrating I have to ensure 25micrograms for 6-8 weeks before the dosage is increased even though guidelines state to start at a higher dosage. I’m tempted to fib…
Book test for early morning 6 weeks after starting
I’m also on 25mg have been for 3 years, and also experienced loss of appetite plus nausea for months. It did eventually settle down and I’m back to normal now. I take my dose when u wake up in the night for the loo, around 1-2am and I think that helps I think the more you worry and feel anxious about it the worse it can be. Knowing it happens to others may help alleviate some concerns I hope.
so a low dose works for some! Do you have hashimotos?
I think you should expect that your dose will go up, maybe a number of times. There isn't a quick fix, but you will slowly start to feel better. I have had poor appetite as a symptom
I was borderline but felt rubbish so I was prescribed. I lost about 10lbs which made me look ill too ..increasing my anxiety that there must be something else wrong ! That was about 3 years ago and my bloods are still the same so I’ve been on that dosage since then. I was originally prescribed 50mg but my heart raced! Quite alarming.
when my daughter is under medicated gastric issues/nausea/heartburn are part of her symptoms of being hypothyroid, so it could be linked to needing a higher dose etc. The admins on this site will have lots of other valuable information that may help
Hi pearpear❤️
After my full thyroidectomy I was put on T4 levothyroxin, I have colitis and I'm lactose intolorent I knew within 3/4 days of taking the T4 it was irritating my colitis, I'm very careful what I eat and we're doing fine with my colitis until I started on this T4 i think it was workhart.
After 3wk I couldn't stand the inflammation, cramps, nausea, runny stools any longer and mention it to my gp who told me the side effects would go so you need to persist with them, I tried but it was awful then I found out they contained lactose 🤦♀️ I managed to get lactose free but they were teva which contain mannitol (filler) again they effected my stomach /bowles, bloods were awful simply because my absorbtion was bad.
The endo then put me on T3.. Wow I thought as T3 is very hard to get, anyway the first lot had lactose in them🤦♀️ I found out after a couple of days, gp changed it to lactose free but they contained mannitol to😠 I've tried just about all the lactose free thyroid hormone replacement going, I'm now on Roma T3 and still having problems, inflammation, nausea, cramps, diarrhea, you may be lucky in that your symptoms settle down 🙏 but if not tell your gp.
I recently had a colonoscopy done the specialist asked me what I thought my problem was, I told him the thyroid medication, he said he as never heard of anyone having any gastric problems due to thyroid medication 🤦♀️ obviously is not to well informed 😠
Indeed, level takes a while. Hang in there.
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