I was diagnosed with hypothyroidism in 2008. And have been taking Levo in tablet form ever since. Over the years the dosage has been adjusted but roughly ten years ago I started to have very violent vomiting episodes after meals, these only used to occur three to four times a year. And because I was able to bounce back after a day. I didnt think it was worth saying anything to my GP.
Significantly, I do have bloating and belching problems two hours after meals. And in the case of the vomiting, on average I bring up food six hours after eating. I’m only sick once but my body doesn’t stop convulsing until it feels like everything is out.
Im now in my early sixities and these episodes appear to be coming more frequent and I can no longer bounce back as I used to. I recently disclosed what’s been happening, and they are investigating. The symptoms are very close to Gastroparesis, however I don’t experience pain or weight loss. In fact, although my immune levels are maintained by levo,. I’ve not had weight loss and cold intolerance has worsened.
Has anyone had similar experiences with Levo?
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lynnejeant
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First step is to get FULL thyroid and vitamin levels tested
how much levothyroxine are you currently taking
Do you always get same brand at each prescription
What vitamin supplements are you taking
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 to see if your hypothyroidism is autoimmune
Very important to test vitamin D, folate, ferritin and B12 at least once year minimum
Lower vitamin levels more common as we get older
For good conversion of Ft4 (levothyroxine) to Ft3 (active hormone) we must maintain GOOD vitamin levels
Low vitamin levels are extremely common when hypothyroid, especially with autoimmune thyroid disease
What is reason for your hypothyroidism
Autoimmune?
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)
Private tests are available as NHS currently rarely tests Ft3 or all relevant vitamins
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
Thanks SlowDragon for your detailed reply. I will be speaking to my GP tomorrow about recent blood tests, I’ve had to narrow down the source of the vomiting episode. I’ve never been advised to keep a check on my vitamins or referred to an endocrine specialist, for how the illness should be monitored.
I know I've seen several papers which discuss levothyroxine absorption in relation to gastroparesis. I'd certainly be considering which formulation(s) of levothyroxine you are taking. And how well you are absorbing them.
Was going to find one or two and post links but when I actually looked, there were more than I realised. And they were more varied than I had remembered.
Here is a link to a search which will find about 120 papers. It probably makes more sense for you to scan read the results and decide whether they appear relevant to you. I could so easily miss the ones that would help - and push ones which are not helpful.
I’m on 75 microgram and I’m approx 72 kilos. For many years and this year I’ve told my blood test TH levels has been in the normal range and no action needed. So naturally I’ve just assumed that it was a case of shut up and put up. It’s really depressing, that I’ve not challenged sooner.
One microgram of levothyroxine per kilogram is a low dosing rate.
I'm very wary of dosing by weight. It can seriously mislead. However, it can be used to ask the question: "Is the dose this person is taking potentially sensible?"
I encourage you to get hold of your actual results (including reference ranges). You might have access through an NHS app or otherwise - or might have to ask your GP surgery to print them out for you.
If you feel able, it might be worth getting a private test done. (NHS testing often consists only of TSH. Sometimes FT4. Almost never FT3.) If you think that is reasonable, maybe write a new post asking for the options depending on where you live, etc.
helvella - Estimation of Levothyroxine Dosing in Adults
A discussion about the use of formulas to estimate levothyroxine dosing. Includes link to a downloadable spreadsheet which calculates several of these.
helvella's calculation document and spreadsheet can be can be found by following this link:
No joy with the NHS GP. They ruled out any connection with the thyroid. Based on TSH test I had over six months ago. Again because I came with in the normal level range, they were not willing to investigate further, despite the fact that I told them symptoms like the cold intolerance was getting worse.
I’m sorry you have these debilitating episodes. My daily dosage of Levothyroxine has risen from an original 50mg to 100 mg niw, but happy to say I have no ill effects at all.
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