Right, So since starting on levo in June 2020 I STILL haven't found a stable dose. I've had an adjustment in doses/meds almost every 12 weeks. Which is a concern.
2 weeks ago my new endo has switched me from 50mcg levo/10mcg T3/60mg NDT to 125mcg levo and 20mcg T3.
I've had panic attacks 2 days in a row and I'm weepy. Generally I'm more active and able to do more than I could.
I can't unpick whether it's thyroid or perimenopause. Endo wants thyroid stable before starting HRT but as I said before in 3 years I've not found a stable dose and I'm worried it's going to be months before I can start HRT.
I've had a suspicion that I might have an issue with dairy and so will experiment there. Just found on a website the following which would make sense...
"You need to be aware that if you have lactose intolerance you may suffer from poor absorption of essential nutrients and even medications. Because patients with Hashimoto’s thyroiditis may be treated with thyroid hormone medications, the absorption of their thyroid hormone medication may be affected because of the lactose intolerance issue.
This is the reason why if you have Hashimoto’s thyroiditis and are taking thyroid medication you may have unstable thyroid tests over time, and when you limit your lactose intake, the dose of thyroid hormone medication may need to be reduced simply because the absorption of thyroid hormone has improved."
Has anyone found that going dairy free helped stabilise their dose??
Its not the lactose that is the issue for Hashi people but the proteins in dairy are the problem. Apparently dairy proteins can also block the pathways of your B vitamins but I don't have any papers to back this up.
It makes sense that you have dropped the NDT and gone all synthetic. I did try a dose of 125 levo + 20 T3 an found that was a little too much for me although bloods were in range. Have now dropped to 125 (+12.5mcgs 2 days) + 15 T3 and thats an improvement although only just!
If you have got to this point without trying the dietary changes then it is long overdue and definitely worth trialling. Are you already gluten free as that makes a difference too?
You will need to be reading food labels very carefully as dairy gets slipped into many many food items that you would never imagine.
I'm currently gluten free but that's recent... 6 weeks maybe.
I had been vegan for about a year when I was diagnosed (went vegan thinking it might help me feel better since "there was nothing wrong with me") so I well know how milk is in bloody everything! Salt and vinegar crisps! WHY.
Back to meat and dairy now but I've a suspicion about dairy causing my nausea.
I thought I'd read something on here about levo causing lactose intolerance. TiggerMe was it you that posted it? 🤔
Yep.... I came across something that said a lot of people taking levo become lactose intolerant as T4 wouldn't usually go through the stomach and it switches of the mechanism that makes lactase... I'm sure there is a scientific paper somewhere on here...
Going dairy free stopped me from feeling poisoned a lot of the time but HRT bought back the balance, think you are peri so likely more fluctuation in your sex hormones than your thyroid?
Like you say you have tried most things just with thyroid doses and they bounce off each other...
Surely lowering the peaks and troughs with HRT will help to find your thyroid balance too? Why won't they let you trial it on a low dose to see if it helps?
It was my first appointment with her and at last check my TSH was 3.5ish so she wanted to get that sorted first. I'll be pushing hard for HRT at my next appointment.
I just wondered if I could help my thyroid along by going dairy free. 😂
It’s really worth experimenting with dairy as opposed to just cutting it all out point blank.
Some people are lactose intolerant, and others react to the proteins (casein and another that I can't remember). Where the proteins are involved you have avoid all dairy because of the induced IgE antibodies effect, but if you suffer only lactose intolerance there are varying degrees.
I can tolerate hard cheese, greek yogurt and kefir fine, milk in small amounts but soft cheeses and hot milk (as in a cappuccino) make my stomach gurgle and bloat, and then produce a lot of wind! 💨😬 ). It just depends on how well your lactase is able to digest dairy products.
It's such a shame your endo won't allow you HRT yet as all hormones work together and replacing those missing sex hormones might bring the stability to your thyroid hormones that you are looking for.
I thought that; cheddar doesn't seem to bother me but too much milk seems to make me nauseous. I'll cut it all out for a bit and reintroduce types over time.
She did acknowledge my female hormone results and said 'you are perimenopausal' so that was a win as far as I am concerned!
Better than the previous endo who just shrugged and offered beta blockers. 🙄
I'll be pushing hard for HRT next time. 🤞🏼 I shudder to think where I'd be without this forum. ❤️
I drink my tea black - and have done for quite a few years.
I recommend choosing a different tea. However nice your current choice is with milk, it will likely be much less appealing without. My choice has been a modest priced Ceylon/Sri Lanka product - just bags!
Traditional matcha is made with just water to enhance the bioavailability of the polyphenol content but even the best still tastes a little bitter to me so I have mine black but with 1/2 tsp of Manuka Honey, and then its yum 😁.
Then I read about a study regarding coffee (which is in itself a source of polyphenols) and how milk may reduce the polyphenol anti inflammatory effect through binding, but then it becomes complicated because for those people sensitive to milk (lactose or casein intolerance) coffee polyphenols can reduce the immune response enough to allow added milk to be enjoyed for some people 🤷♀️.
🤣🤣 🤣 ... and there's me waffling on about polyphenols (which my family of sick of hearing 😁), and the black that is really green went straight over my head 🤪.
By all means cut out the lactose first but if that doesn't work then you still have to eliminate all dairy to give it a fair trial.
I do find that these days I can very occassionally ingest some milk product by accident and not notice but if I were to do nything on a regular basis that would be a different story.
When you get to trying fully dairy free perhaps move to fruit/herbal teas for a while.
Nausea is a symptoms of dairy intolerance for me and a few others I have met.
Maybe show this to your GP/endo as they may not be up to date on recent protocols ...
'You can experience symptoms - and therefore be perimenopausal - even if you are still having regular periods; you don’t have to wait for your periods to stop before starting HRT.
The most effective way to treat symptoms of the perimenopause is to supply your body with a steady dose of the hormones that are now in fluctuation and on decline in your body. HRT usually involves estrogen replacement and – if you still have your womb – you will need to take progestogen as well. It is likely you will also benefit from takingtestosterone in addition to estrogen and progestogen.
HRT is most effective when it is started before the ‘menopause’ point of time, or at least within 10 years of this. HRT remains the most effective treatment to relieve symptoms, yet it is thought that in the UK, only one in ten women who would benefit from HRT actually take it'.
I have discovered that I am intolerant to lactose - mainly had problems with joints and tummy after eating ice cream and then realised it was the same after milk and soft cheese. Like others I can eat hard cheese, yoghurt and butter but I certainly recognise the symptoms when I have inadvertently eaten something with lactose in it. I now take Time Health Digestive Enzymes, but only if I am going out to eat - 2 capsules about half an hour before seems to protect me. I am also gluten free and I think these enzymes help with that too. Maybe they would help you too.
Does your endo dose by the TSH only? If so, he will never get your dose 'stable'. You'll be in the TSH seesaw: TSH below range = reduce dose = TSH above range = increase dose = TSH below range... And so on and so on and so on forever.
Have you started supplementing again since your not so good January vitamin results? Folate was deficient even.
A large part of your problems may be that your TSH is not suppressed and you are on T3 where I would expect it to be suppressed or very low for you to feel well.
On NDT I was on the equivalent of 85mcg levo and 18mcg T3.
I'm now on 125mcg levo and 20mcg T3 so hopefully this will do the trick.
It's just interesting. I've read on here quite frequently that any amount of T3 usually causes a low or suppresses TSH. Which is why I've started looking at other angles.
My TSH still isn't fully suppressed on 125 T4/15T3. It was still in range on only 10mcgs T3. We are all different. I think you have jumped around doses and types of hormones so go a lot slower now.
I'm not... I researched and decided to stick with lactose free T3/4 whilst I can as possibly easier to find my sweet spot... NDT seems like another hill to climb and I don't tolerate bovine either so limited options and more sourcing hurdles
One of the classic issues is heavy-handed dose adjustments.
Typically, for LT4 only, adjusting by 25 micrograms.
Assume you are on 100 and need some more, so you go to 125. But that is too much. So you get dropped back down to 100. Which isn't enough. Round and round...
When you are somewhere near, then small changes are the order of the day. And with consistent makes of the medicines (so far as possible).
It might look as if this situation would be obvious. But 100 is not that much below 112.5 (assuming the mid-point is the ideal) and a dose adjustment first addresses the difference (e.g. takes you up or down to what you need), then overshoots. And only by a modest amount. So it is all too easy not to notice immediately, or in quite a few weeks. But, as time rolls on, something seems not quite right.
Yes, my endo seemed to be quite heavy handed with dose changes, they all made sense at the time but I'm glad to be under new care!
Never seemed to get my frees balanced; either T4 high & low T3 or low T4 and high T3! I remain hopeful that if I can get my frees balanced I can start to make smaller changes if needed. 🤞🏼
One of the classic issues is heavy-handed dose adjustments.Typically, for LT4 only, adjusting by 25 micrograms. Assume you are on 100 and need some more, so you go to 125. But that is too much. So you get dropped back down to 100. Which isn't enough. Round and round...
Agree absolutely
I find changing Levo even by 25mcg per week too challenging
125mcg everyday slightly too much
112.5mcg 5 days week and 125mcg twice week…..too little
125mcg 4 days week and 112.5mcg 3 days week……about perfect
And also splitting dose levothyroxine as 2 doses…..plus small dose T3
No medic is going to micro manage that kind of small dose adjustment in levothyroxine
I don’t think I can see anything about when you get the anxiety. Night? Day? Night and Day? I only ask because I discovered recently that I mainly got mine at night. When I was really ill (with thyroid winding down/hashi flares) many years ago, I was constantly anxious day and night but night anxiety was always by far the worst - no distractions. If it’s night mainly that’s uncontrollable I have extremely reluctantly come to realise sleep apnoea has been contributing to mine big time, maybe even causing for years. Waking with strong rapid heartbeat.
Oh Witchinghour this is so tough. Poor, poor you. I hope the new Endo is more on the ball & gets you sorted. 🤞🤞🤞
I have to says it does seem a little mad not to try the HRT.... It could just balance you out. But again the thinking is one thing at a time to see what effect it has.
If you've only been GF 6 weeks it's not long.... I'd give it a good 6months. My specialist told me it takes 18mobths sometimes longer for the gut to heal from GF intolerance.
As for dairy free. I'm just feeling for you. It seems a lot of changes at once. How will you know which is effective? Unless you are getting a reaction to dairy I'd be inclined to keep that one up my sleeve to try layer on. Just a thought...
Sending you hugs xx
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Lactose-free Levo / night time dosing?
Lactose Intolerance 
Is lactose intolerance and soya sensitivity affecting absorption of T4? 
