So I was diagnosed with an underactive thyroid in Dec 2019. Started on 25 Levo, and then increased to 50 in March. My TSH levels were back to normal by April at 2.4. I've just asked for another test as I felt really tired and not right again, and now I'm apparently overactive - doc said it was at 0.04 or something? Which sounds like a very drastic change (and I had taken the advice on here and didn't take my levo in the morning. Apparently my T3 is at 20. I can't remember what he said my T4 was, but he said it was normal. The advice has been to alternate between 25 and 50 every other day. Has this happened to anyone else?? Any advice?
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NatClarke
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These confirm autoimmune thyroid disease (Hashimoto's) which is where the immune system attacks and gradually destroys the thyroid.
When the attack happens, the dying cells release a lot of thyroid hormone into the blood and this can cause TSH to become suppressed and Free T4 and Free T3 to be very high or over range. These are called 'Hashi's flares' or 'swings'. You may get symptoms of being overmedicated (hyper type symptoms) to go along with these results that look as though you are overmedicated. The hyper swings are temporary, and eventually things go back to normal. Test results settle back down and hypo symptoms may return. Thyroid meds can be adjusted slightly at these times if necessary, but will need readjusting when hypo symptoms return.
So, fluctuations in symptoms and test results are common with Hashi's and the fact that your FT3 has gone up to 20 suggests that you are experiencing a Hashi's hyper swing and are in a false "hyper" stage at the moment.
Some members have found that adopting a strict gluten free diet can help, although there is no guarantee.
Gluten contains gliadin (a protein) which is thought to trigger autoimmune attacks so eliminating gluten can help reduce these attacks.
You don't need to be gluten sensitive or have Coeliac disease for a gluten free diet to help.
Supplementing with selenium l-selenomethionine 200mcg daily is said to help reduce the antibodies, as can keeping TSH suppressed.
Hashi's and gut absorption problems tend to go hand in hand and can very often result in low nutrient levels or deficiencies. It's essential to test Vit D, B12, Folate and Ferritin and address any problems. You are welcome to post these results, including reference ranges (plus units of measurement for Vit D and B12), for comment and suggestions for supplementing where necessary.
Gluten free pasta is widely available, and Buckwheat pasta ( available at Sainsury's ) is naturally gluten free. Buckwheat is not a 'wheat' despite its name , but a seed I think.
The GF pasta is a little more expensive but GF spaghetti, tagliatelle, penne and conchiglie is almost indistinguishable to the gluten stuff.
If you usually use wholemeal pasta buckwheat might be more to your liking.
My son is a coeliac and has been GF for about 3 years, since his diagnosis. I went GF about 2 years ago now because I have Hashimoto's. The GF pasta, which is widely available really doesn't taste much different to ordinary pasta and you soon get used to it.
Our biggest problem is getting really nice GF bread, there aren't many brands that taste just like the real thing. There is one brand called Findlaters which costs the earth ( about £3.50 for a small loaf) which is indistinguishable from wheatflhour bread, but too expensive for daily use. I've had go at making my own, some of it's ok the rest you could build walls with!!
Also if you make sauces and/or gravy you can use cornflour to thicken them instead of wheat flour.
If you cook your own meals from scratch it is much easier than relying on manufactured foods as many contain gluten. The supermarkets seem to have started using less wheat in their own brand products though so it is getting easier to be GF.
Coeliac UK has a good selection of recipes online for GF meals as does the BBC Good food website, just select the special dietary section and choose GF recipes.
There is also another forum called Gluten Free Gorillas who are just as helpful as this one.
A quick question, I’ve been taking inositol supplements - could that have had an affect on my resent results at all? I took it to help with potential pcos.
Hashimoto's frequently affects the gut and leads to low stomach acid and then low vitamin levels
Low vitamin levels affect Thyroid hormone working
Poor gut function can lead leaky gut (literally holes in gut wall) this can cause food intolerances. Most common by far is gluten. Dairy is second most common.
According to Izabella Wentz the Thyroid Pharmacist approx 5% with Hashimoto's are coeliac, but over 80% find gluten free diet helps, sometimes significantly. Either due to direct gluten intolerance (no test available) or due to leaky gut and gluten causing molecular mimicry (see Amy Myers link)
Changing to a strictly gluten free diet may help reduce symptoms, help gut heal and slowly lower TPO antibodies
While still eating high gluten diet ask GP for coeliac blood test first or buy test online for under £20, just to rule it out first
Assuming test is negative you can immediately go on strictly gluten free diet
(If test is positive you will need to remain on high gluten diet until endoscopy, maximum 6 weeks wait officially)
Trying gluten free diet for 3-6 months. If no noticeable improvement then reintroduce gluten and see if symptoms get worse
The predominance of Hashimoto thyroiditis represents an interesting finding, since it has been indirectly confirmed by an Italian study, showing that autoimmune thyroid disease is a risk factor for the evolution towards NCGS in a group of patients with minimal duodenal inflammation. On these bases, an autoimmune stigma in NCGS is strongly supported
In summary, whereas it is not yet clear whether a gluten free diet can prevent autoimmune diseases, it is worth mentioning that HT patients with or without CD benefit from a diet low in gluten as far as the progression and the potential disease complications are concerned
Despite the fact that 5-10% of patients have Celiac disease, in my experience and in the experience of many other physicians, at least 80% + of patients with Hashimoto's who go gluten-free notice a reduction in their symptoms almost immediately.
Hi NatClarke, this is similar to what has happened to me. I have an under active thyroid and I was taking 50mg five days a week and 25mg for the other two days a week. My thyroid then went overactive at 0.05. I am now taking 25mg five days a week and 50mg the other two days a week. I have still been having acid reflux which started when my thyroid went overactive. I have tried to go gluten free before but I have to say I found gluten free pasta disappointing and I missed the real thing too much! I really didn’t like buckwheat pasta. Also gluten free bread tastes horrible and most is actually meant to be really unhealthy. I am trying to just reduce gluten slightly for the time being. Apparently sourdough bread is a low gluten bread. It also contains lower levels of fructans which can cause unpleasant digestive symptoms in some people. Sourdough bread is meant to be a better option for people with IBS, gluten intolerance or gluten sensitivity.
Thank you so much. That’s good to know. I’ll mention this approach to my doctor when I get checked again in 8 weeks!! I’m with you on the gluten free bread. Tastes like cardboard!!! 😞😞
You either go gluten free or not. It's about inflammation, constantly "poking the bear" with little bits of gluten keeps the inflammation up. Like pregnant or not. Either you are, or you're not.
Reducing gluten intake is a way to slowly stop eating all gluten. It’s very difficult to just suddenly stop eating gluten and everything you used to eat immediately. The easiest way to go gluten free is to reduce gluten intake slowly a step at a time.
Thought I’d update you all. I went gluten free after these messages. My TSH was at 1 at my last blood test which is the best it’s ever been and my last two cycles have been 32-35 days which is the most regular they’ve ever been. So it seems to be working 🤓🤓thanks so much for the advice.
Same thing happened to me ! Twice ! I don't have Hashi or any other autoimmune. Glad I stopped in here today...anyway, went off meds 6 days, started back slow, 25mcg and wham, tachycardia and hypertensive attack! Was getting these events before stopping, thought I could start over slowly. It's like I'm hyper without taking anything. Don't know what to do. Docs are clueless. Feels like my thyroid is under attack, only way to explain it but blood tests don't show anything. TSH was 1.0 when this started, went up to 2.25. Still under attack. t3 and t4 normal ranges. Morning bathroom issues and weight loss along with..I'm perplexed . Thinking of just going off my 25mcg for a few days, see what happens.. Thanks for the post
Thought I’d update you all. I went gluten free after these messages. My TSH was at 1 at my last blood test which is the best it’s ever been and my last two cycles have been 32-35 days which is the most regular they’ve ever been. So it seems to be working 🤓🤓
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I'll give gluten-free a go. 
Anyone gone from NDT back to Levo & Liothyronine with success?
Under active to Overactive?
LEVOTHYROXINE 25 mcg...IS ANYONE ON THIS AMOUNT Plus T3 ?
Moved to stage two of my health plan
I'd like to hear from people whose symptoms were made worse with Levo, and then tried NDT or T3 or something else with success!
