Been on 25mg levothyroxine for about 18 months due to Tsh being 3.0 and GP wanted it under 2.0 as trying to conceive. Never noticed any side affects. For about 4 weeks now I've had a tingling feeling in legs and feet and one hand which is carpal tunnel like. Bloods fine, b12 satisfactory and tsh is 1.9.
Could levothyroxine suddenly be causing these symptoms or could my dose be too low? I was never symptomatic of underactive thyroid but now I have the tingling and also feel cold etc which is new to me. Neck scan for enlarged lymph nodes years ago showed cyst on thyroid but consultant wasn't concerned.
And advice?
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Bristolgal8
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Levothyroxine doesn’t “top up” your own thyroid, it replaces it
25mcg isn’t even half the standard starter dose levothyroxine
On levothyroxine TSH should be around or under 1
Just testing TSH is completely inadequate
Bloods should be retested 6-8 weeks after each dose change or brand change in levothyroxine
For full Thyroid evaluation you need TSH, FT4 and FT3 tested
Also both TPO and TG thyroid antibodies tested at least once
Very important to test vitamin D, folate, ferritin and B12 at least once year minimum
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
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)
Private tests are available as NHS currently rarely tests Ft3 or all relevant vitamins
Testing options and includes money off codes for private testing
In my experience, yes levo can cause this. I thought it may be because I wasn’t taking enough levo but when I increased it just got worse and worse and I had more side effects.
It only ever occurs when taking Levo so don’t think anything else can be to blame.
Everyone is different but taking larger amounts of levo didn’t help at all so I’m back on a lower dose. Everyone says you should feel best with a TSH around 1 but I felt absolutely awful and had symptoms of over medication. Not sure what the answer is but I can relate!
If you can manage it financially, worth considering going private for the expertise and trying a different medication. I’m using a telehealth Dr on the Thyroid UK list which prescribes Natural Desiccated Thyroid NDT (combined T4&T3). Medication is slowly titrated based on blood results and symptoms. Night and day different to the NHS but obvs more costly. You can ask for recommendations in this group via direct message. Best of luck x
As mentioned by Slow Dragon your thyroid meds largely replace what thyroid hormone your thyroid was making …..it goes to sleep, as it were. So on the tiny dose of 25mcg Levo your body was possibly getting even less thyroid hormone than it had before! That could explain the onset of symptoms. So you need a dose increase and tip top vitamins before considering conception
Hi everyone. Thanks for the replies. I was put on levo 25mg whilst I was trying to conceive and I fell pregnant so continued with the levo thought my pregnancy. Now I suddenly have these symptoms and I don't know if my tsh at 1.9 is OK or should I be on more levothyroxine or do I even need it anymore if I was subclinical to start and now no longer need it for conception purposes.
As for other vit testing all my GP ever tells me is satisfactory. I had initial thryoid testing done with thriva back in 2021 but haven't repeated it since.
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