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.
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