Just a note to say thanks, this forum has helped me not feel so alone whilst being unwell.
I started taking Levothyroxine in October in 50mg. In the first week I had awful dizziness and dropped it to 25mg and felt miles better. After a month at 25mg the dose was then upped to 50mg. Around this time I started I getting bloating, mood swings and anxiety I put this down to lifestyle not the tablets.
After some blood results, I was lifted to 75mg and suddenly all the symptoms/ side effects got exteme. Acid reflux, insomnia and anxiety.
I have deceived to stop taking the Levothyroxine and feel improved already, all gas has gone and have less anxiety.
Have anyone else had similar and how did you proceed with your treatment?
Cheers !
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Northw
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Have you shared the brands of your doses that gave you these reactions? One common explanation is that excipients are to blame.
edit!
Welcome to the forum! Apologies, your post read like a follow up to a previous but I now see you’ve been reading, but haven’t yet posted, here.
Can you share your blood tests with ranges? Tsh, ft4, ft3, any vitamins, any antibodies?
If you were properly prescribed Levothyroxine, then it’s very likely you need to take it for life. There are exceptions and we know nothing about you… and are only able to share our experience as fellow thyroid folks.
Thanks for the reply ! Unfortunately due to not thinking the meds wasn’t the issue I binned all the boxes aside from the latest one. Which was TEVA brand.
I believe the others could have been mix of different brands over the time I’ve been taking it. But the extreme side effects appear to be from the TEVA.
Many patients do NOT get on well with Teva brand of Levothyroxine.
Teva is lactose free, but contains mannitol as a filler instead of lactose, which seems to be possible cause of problems. Mannitol seems to upset many people, it changes gut biome
If a patient reports persistent symptoms when switching between different levothyroxine tablet formulations, consider consistently prescribing a specific product known to be well tolerated by the patient.
Physicians should: 1) alert patients that preparations may be switched at the pharmacy; 2) encourage patients to ask to remain on the same preparation at every pharmacy refill; and 3) make sure patients understand the need to have their TSH retested and the potential for dosing readjusted every time their LT4 preparation is switched (18).
For full Thyroid evaluation you need TSH, FT4 and FT3 tested
Also both TPO and TG thyroid antibodies tested at least once to see if your hypothyroidism is autoimmune
Very important to test vitamin D, folate, ferritin and B12 at least once year minimum
Low vitamin levels are extremely common when hypothyroid, especially with autoimmune thyroid disease
About 90% of primary hypothyroidism is autoimmune thyroid disease, usually diagnosed by high TPO and/or high TG 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.
Significant minority of Hashimoto’s patients only have high TG antibodies (thyroglobulin)
NHS only tests TG antibodies if TPO are high
20% of autoimmune thyroid patients never have high thyroid antibodies and ultrasound scan of thyroid can get diagnosis
In U.K. medics hardly ever refer to autoimmune thyroid disease as Hashimoto’s (or Ord’s thyroiditis)
Recommended that all thyroid blood tests early morning, ideally just before 9am, only drink water between waking and test and last dose levothyroxine 24 hours before test
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)
Testing options and includes money off codes for private testing
If you normally take levothyroxine at bedtime/in night ...adjust timings as follows prior to blood test
If testing Monday morning, delay Saturday evening dose levothyroxine until Sunday morning. Delay Sunday evening dose levothyroxine until after blood test on Monday morning. Take Monday evening dose levothyroxine as per normal
Its a long journey to find not only the right dose but also the right brand of Levothyroxine. You may be fine one year then need an increase or decrease. After a heart rhythm problem last year I decreased I have been on levo 15 years
Your comment about feeling so good reminded me so much of how I felt when I stopped Levo that I thought I should let you know what happened to me.
I had very bad reactions with Levo. Eventually my GP told me to stop taking it without tapering or anything. I felt great for a week or two and then I became very fatigued and unwell and was diagnosed with ME/CFS.
I have discovered from this site that the thyroid will have become dependent on the replacement Levo and so when it finally leaves the system the thyroid will not be capable of making up the missing hormones for some considerable time, if ever, thus leaving you very hypothyroid. Although I was diagnosed ME/CFS, there is a good chance that it was extreme hypothyroidism all along.
The advice is good to find a brand or combo that suits you and the vitamins etc. I suggest not waiting too long to do this.
My best wishes to you and hope that this advice is useful if it can stop you going through what happened to me for many years.
Sorry for the delayed reply, it has been a whirlwind with work etc to.
I have restarted levothyroxine at 50mg with a different brand to Teva. I am taking mercury Parma which seems to agree with me more. I have been back on it for 19 days now.
I am
Due blood on the 7th of May. Which I will post on here
I am still getting symptoms of bloating and acid reflux, the Gastro doctor is suggesting an endoscopy and a test to see how long food is waiting is my stomach. Has anyone else had the same? As I know hypothyroid can cause slow digestion.
Are there any other tests people would advise in this instance that have been helpful to you?
Maybe you don't need to take levothyroxine at all. Why not try going without it? If you feel much worse, then restart it again. I quit after taking it for 12 years! My thyroid still works (t4 and t3 in range, tsh high). Levothyroxine gave me anxiety too--I was taking Synthroid. Recently I took iodine supplements and started having very similar anxiety again, which makes me wonder if it's the iodine that's causing it.
“Maybe you don't need to take levothyroxine at all. Why not try going without it?”
- Very few are started on levothyroxine without first ensuring it’s necessary long term. Most members on forum are in UK. The guidelines are quite strict. 2x raised TSH 3 months apart. or TSH overtly above 10, or under range FT4 & FT3.
Then there are those who have had thyroid removed they definitely need replacement.
Northw
It’s not recommended to stop suddenly, sometimes the replacement dose needs adjusting but increases & decreases should always be done by gradual increments eg 25mcg daily in response to 6 weekly testing.
We do hear a few stories about those struggling with Levo feeling wonderful after stopping, but it’s almost always a temporary effect & if you start replacement you need it lifelong.
Iodine is also complex, unless tested as deficient, iodine supplements are not recommended.
3-T1AM
Perhaps you’d like to complete your profile & start your own post about your own thyroid issue.
The beginning of any thyroid journey is always difficult and very often you feel worse than before. This is not necessarily a result of levothyroxine (although a few members have difficulties with levo as such), but very likely caused by the low thyroid hormones.
Also, when you start supplementing, your own residual thyroid hormone production will cease and temporarily you may have less hormones available than before - but this is a temporary situation and once you start titrating up with your dose, things will start improve.
You will very likely also have deficiencies in your core nutrients that can help you with the conversion of levothyroxine (which is T4) to the active hormone T3. Optimal levels of ferritin (a measure of your iron stores), folate, B12 and Vitamin D are needed, so your body can process your levothyroxine. Many members here have reported that they had difficulties with tolerating levothyroxine when their core nutrients were low, but once these increased and improved, so did their tolerability of levothyroxine. So definitely worth checking your nutrient levels and start supplementing, if any of these are deficient.
And yes, you may feel temporarily better for stopping your medication, but if you need thyroid hormone replacement, sadly there is no way round this and the temporary good feeling will not last. Eventually your levels will get too low and you will start feeling worse very soon. So it is well worth sticking it out for a while and improve your thyroxine levels as well as your nutrient levels and bit by bit, you will see an improvement.
There is no quick fix with thyroid disease and we have to be patient with ourselves and give us the the time we need to see improvements.
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