Health Update and food intolerance

[redsquirrel68]

Firstly to say thank you to this forum. I don't know what I would've done and where I would've ended up in if not for you invisible guardians. Since August last year from my first blood test when I discovered my thyroid markers were not normal, my journey has been a roller coaster of sorts. Discovery of this forum gave me depth of knowledge and dare I say even hope that I can somehow try to manage my thyroid issues better. From your friendly doctors list, I found a sensible and professional endocrinologist whom I am very happy with. He has been very purposeful with every medication and tests.

My purpose of writing today is to share my story so far and hope it may help others as yours has helped me. Reading some of your journeys have been humbling to say the least compared to mine. Also for experts to review my progress and see if there is anything else that I should be doing. I have updated my profile with data and hope it is sufficient. I have Autoimmune Hypothyroidism ( Hashimoto). I started with 25ug Levothyroxine which made feel better, then felt worse when my dose increased to 50ug. Latest blood tests confirmed I am not converting Free T4 to Free T3 efficiently. I have just recently been prescribed 5ug Liothyronine which I have been advised to start with half a pill and to take it with Levo in the early morning. Tomorrow is when I begin taking T3.

I have a few questions which may not all be related so I may post them separately (admins, please advise if I need to do so). My questions are:

1. How long does it take to feel better on Liothyronine? If this doesn't work, what options do I have?

2. I discovered last year after cutting out carbohydrate from my diet that I am gluten intolerant. I don't believe I am coeliac ( based on my symptoms) but I dread to be tested as that means having to consume gluten. Is there a way to be tested without having to consume gluten?

3. I spent 6 years eating steel cut porridge and oats daily thinking it was healthy but I realised now it was my main cause of inflammation ( bloating and belly ache). I am eating now eggs and berry kefir for breakfast and I like to snack on cheese. How do I know if I am intolerant to eggs or dairy as I understand from one of the posts recently a Chinese study concluded that a high percentage of Hashimoto sufferers tend to be intolerant to the certain foods, namely eggs and dairy? Whilst I don't have any discomfort after eating, I am now paranoid that I could be repeating the same mistake. I currently consume more than 70g protein and high fat daily, largely animal/seafood based. I still eat some berries and vegetables, though not much.

4. I am also baffled why I appear to feel "healthy" before 2024 when I was eating unhealthily. I was on the standard diet with processed foods and high carbs and not on medication. I now feel constantly only 50-60% energised with medication and on whole foods diet. It feels like my health plummeted since I started medication.

Apologies for this long post. Any insight is appreciated as always.

[SlowDragon Administrator]

FEB 2025: Blood test after 6 weeks on 50ug Levo (accord), 9:15am.

TSH (0.27-4.2uIU/L) : 2.05

Free T4(12.0-22.0pmol/L): 20.9

Free T3 (3.1-6.8pmol/L): 3.5

Was this test done 24 hours after last dose Levo

I would have retested after another 6-8 weeks

And possibly tried lactose free levothyroxine - Vencamil

50mcg is only the standard starting dose of levothyroxine

[redsquirrel68 in reply to SlowDragon]

I followed the 24 hours gap between my blood test and Levo at 25ug in November. However for the February test which includes the synacthen test, my doctor said to take the Levo 50ug as usual which was 4 hours before my test. From tomorrow I will begin my 2.5ug Lio( half a pill) with 50ug Levo. I will be back for another blood test in about 6 weeks.

I have never tried Vencamil. Thank you for the recommendation. I seem to respond well to Teva 25ug. When I was given Accord 50ug, I was surprised at the size difference which persuaded me to try the Accord. I'm not sure if me feeling poorly was due to my holiday carb intake or not responding well to Accord. I will check next time for Vencamil.

[SlowDragon Administrator in reply to redsquirrel68]

my doctor said to take the Levo 50ug as usual which was 4 hours before my test.

So Ft4 was falsely high in test

If you had left 24 hours it would have been quite a bit lower

In my view you should have retested correctly in a further 6 weeks

By then probably ready to increase to 75mcg

Generally best to get Levo dose higher before starting T3

See how you get on

[redsquirrel68 in reply to SlowDragon]

Thank you Slow Dragon. The penny dropped after I read your question. Will keep an eye out for my next blood test. But by then I will be on Lio and Levo. I am keen to try the Lio as I am feeling quite crappy now. My face even looks different now. I can see my face is inflamed and puffy.

If I don't respond well to 2.5ug Lio and 50ug Levo, should I drop Liothyronine and go back to just 50ug Levo only or is it safe to dose 75ug Levo? How long would you typically stay on a dose for it to take effect before changing?

[SlowDragon Administrator in reply to redsquirrel68]

The problem with adding T3 is that it almost always reduces TSH often significantly (all many medics look at)

Always test Ft3 and Ft4

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)

T3 ….day before test split T3 as 2 or 3 smaller doses spread through the day, with last dose approximately 8-12 hours before test

[redsquirrel68 in reply to SlowDragon]

Thanks Slow Dragon for the tips. Will definitely be following as advised.

[Buddy195 Administrator]

Some members report having a ‘eureka’ moment when adding Liothyronine. For me, it was a gradual improvement over time (several months).

Although I’m not coeliac, like many members here I’m gluten intolerant and have made the decision to remain on a GF diet.

If you feel better eliminating dairy, then by all means continue. For me, a dairy- free diet didn’t do much to improve my inflammation/ gut issues, so I reintroduced these.

I understand your ‘paranoia’ about dietary changes and health. For me, the heightened anxiety I experienced improved when both thyroid medication and key thyroid vitamins were optimal.

[redsquirrel68 in reply to Buddy195]

How much Liothyronine are you on Buddy and do you take it only once daily or several times a day? I read your profile and am confused that you were diagnosed with Graves and now hypo?

I still am not sure how I react to dairy or if I do. Unlike gluten which causes my skin to itch really badly. I might try dairy free for 5 days and see if I feel any different.

[SlowDragon Administrator in reply to redsquirrel68]

I still am not sure how I react to dairy or if I do. Unlike gluten which causes my skin to itch really badly. I might try dairy free for 5 days and see if I feel any different.

It’s likely to take 4-6 months to definitely rule in or out if dairy is an issue…..including being on lactose free levothyroxine/T3

[redsquirrel68 in reply to SlowDragon]

Is there a particular type of food intolerance test that is reliable?

[Tina_Maria in reply to redsquirrel68]

I would be very wary of food intolerance tests, as they have not been shown in independent studies to be reliable. Food intolerance tests are based on the measurement of IgG - however IgG rises in response to when you ingest food. So for example, if you eat a large portion of yoghurt, your IgG levels would rise as a result. This is NOT a sign of an intolerance, it simply indicates that your body is responding to the increase in dairy, which is a natural reaction and definitely not synonym with an intolerance. In fact, if you would head the advice of the food intolerance test, you would actually restrict items you can tolerate and could eliminate important foods from your diet without any good reason. This can lead to nutrient deficiencies over long-term, so not advised.

Companies offering food intolerance tests have actually been reprimanded by the advertising standard agency for making misleading claims and the British dietetics association has also put out information saying that IgG tests have not been shown to reliably identify food intolerances and should not be used as a diagnostic tool.

bda.uk.com/resource/food-al...

The best way to see if you might be intolerant to something is to do a food diary for a month and write down exactly what you ate and what symptoms you have noticed. Then try to eliminate what you think is the culprit and observe again to see if the symptoms persist. It is a bit of legwork, but it is a much more accurate way to check and you don't risk eliminating things that are actually essential and beneficial.

[redsquirrel68 in reply to Tina_Maria]

Thank you Tina for your clear explanation and for the link as well. I have many times considered testing but I have just eliminated gluten and carbohydrates which is already challenging. I will have a good read of the link and I agree that elimination diet is the best way as you suggested. It was only when I went low carb that I discovered I was gluten intolerant when I baked keto bread with vital wheat gluten 🙄I didn't want to believe it and so I waited 2 weeks for my symptoms to subside and then I ate the gluten bread again which confirmed my suspicions😭

[nightingale-56 in reply to redsquirrel68]

My Son's paediatrician went through a few weeks of Elimination diet with me. First with dairy, no problem and then with Wheat. That was the problem and after just leaving it out for a fortnight and then going back to it, it proved to be the case. Actually, after three days it was becoming obvious that was the problem. He was very into allergies and believed you shouldn't have one item of food for more than three days running without a break from it.

[Buddy195 Administrator]

I was originally diagnosed as Graves as I presented as ‘hyperthyroid’ but I now believe this was transitory, as later antibody tests showed I’m hypo with Hashimotos. I also have Thyroid Eye Disease, which is more commonly (but not exclusively) linked with Graves. Ask my Endo though and he will say I had Graves first and then it developed into Hashimotos! 🤣 Some members like myself don’t present as typically hypothyroid…. I lost weight, had palpitations, tremor and fast pulse….

I take 75mcg Levo on waking and 15mcg Lio (I split the Lio in 2 doses, am and pm)

[redsquirrel68 in reply to Buddy195]

It has been humbling and an eye opener for me what a significant role thyroid plays in our health and how inadequate doctors are in treating thyroid issues. This is the only forum I refer to now for any research and questions. Thank you for sharing and I hope to be able to post one day that I am feeling better too.