You've been so helpful. Your collective knowledge has led to a diagnosis of (ords) hashimotos, my levo being upped to 75mg and I'm pain free for the first time in 5 YEARS! Thank you. I feel alive again.
I armed myself with printed NICE guidelines and facts/ research and GP didn't resist this time and the NHS endo was actually useful (when forced) and formally diagnosed me (when forced).
So I was upped from 50mg to 75mg levo end March (27th) my bloods were done last week (9th May) for TSH (T4 isn't being done anymore - shrug) plus Full Iron panel this forum recommended I had. I also had the endocrinologist test cortisol and gluten sensitivity when i saw them last month.
These are the results below under this post. My TSH is down but should that be lower still? I do feel so much better but I understand if you are correctly medicated on levo you should be nearer 1-2 TSH?
I have a further GP apt this week to discuss next steps but they are seemingly being led by me. Should I ask for another levo increase? My weight/mg ratio works out I should be on 91mg.
My Iron looks "within range" so assume they will do nothing there. I think it all looks low though. Can anyone recommend a supplement to me and when I should take it - think dinner time?
I'm going to tackle nutrients first myself then maybe get help if needed as GP and Endo went blank in this area.
All test done 9am without levo or food.
....
Levo 6am on empty stomach - breakfast taken 10am ish.
I've been taking a 3000IU VIT D spray lunchtime and will next introduce a B12 vitamin
Dinner time I will introduce Tumeric and a Fish oil. (and Iron here too?)
Bedtime I will introduce Magnesium.
Supps will be introduced with time in between to monitor symptoms/side effects.
...
Thank you!
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CherryPie2
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Still a way to go and not been easy. frustrating to have to educate yourself thinking there should be specialists for this common condition!! But this forum is just so valuable.
Great work! Its so satisfying when advocating for oneself isn't it!
Personally, I feel better when my TSH is below 1 and my FT4 and FT3 are towards the top of their ranges, we are all slightly different so you have to get there with a bit of fine tuning yourself. You could find you are bang on or close to.
I test with Monitor My Health and Medichecks about every 12 weeks or so to get the FT4 and FT3 and now you are feeling much better that will really help you understand. Be led by your symptoms more than the blood test result, overshooting your 'sweetspot' is equally uncomfortable and takes a while to unpick (as I've discovered).
If you look at your last FT4 it was quite low in range, it would be interesting to see what the last increase did to it, before you consider your next steps, it could be you need 2 days of 100 and 5 days of 75mcg etc. Or not..
Your ferritin is in range but quite low, I feel very sluggish, achey, anxious if mine is below 100, I recommend Three Arrows Heme. As your other irons are OK it is worth looking up Iron Deficiency Without Anaemia IDWA, its an actual thing! It explains what a lot of us have.
To raise ferritin you can eat buckets of green veggies, liver twice a week, red meats, but doing that I still couldn't get it over 60. The Three Arrows Heme (Simply Heme Iron Repair) is shipped from the US and is absolutely worth every penny, it did what kilos of liver couldn't do for me.
Heme is gentler on the tum than the standard iron supplements, it is also better absorbed. Iron supplement absorbtion is impacted (like 40-50% reduction!) by tea, coffee, chocolate, herbal tea all sorts!
I hope that helps,
Edit: Here is the link to the info about iron absorption, useful discussion in threads.
Thank you! I eat so many greens I may as well be a rabbit. Also red meat and liver - have introduced liver pate too. I have historically poorly absorbed Iron.
Very interesting reading on the coffee timings - will dig deeper there and will look up your suggested sup. They really vary in quality and use.
Yeah me too, I'm a grow your own advocate and had to concede that my poor autoimmune digestion was not absorbing the amazing nutrients I sent its way with daily kale smoothies etc.
Ferritin around 40 is only just above the bottom of the range. There is a whole lot of difference to Ferritin over 80-100
Three Arrows is a game changer, just know when to cut down to 2-3 a week, I'd test again after 90 days 🌱
Initially I took 1 a day for a whole bottle and halfway through second bottle tested Ferritin @ 145 and was over range FT3/FT4 I now take 3 tablets a week spread out and everyday during my period (fibroids) seems to be holding up. Eat liver about once a month now, lamb and beef weekly green leafy veg daily, loadsa nuts and seeds etc. 🌱
Cherry pie - I should have mentioned this… Vit A toxicity is also a thing! Darned if you do darned if you don’t!
See my note below, see how you do with a month or so of eating more iron. The. We can figure out if supplementing is a good idea for you if diet doesn’t work.
There's nothing inherently wrong with having TSH 2 .14 if you feel pretty well.
The 'optimal' recommendations we often quote here all advise to keep TSH between 0.4/0.5 and 2 / 2.5 for optimal treatment ~ you are within that. And remember there is a lot of individuality in where we feel best with our thyroid hormone levels .
If you feel well on a dose and are feeling gradual improvements , it's not usually a good idea to change that dose just to improve some numbers (that will wander about to some degree anyway).
i would say it might be a good idea to give your current 75mcg dose a longer period of stability , to allow you utilise and build on these current improvements in how you are feeling . I'd say give it 3 or 4 months from now, then retest privately so you know what fT4/ fT3 / TSH are and can asses how you are feeling at that point, before deciding what next move should be.
but keep the option of increasing the dose open . if you feel the current benefits have gone away after a few more months , then it's time to consider getting a dose increase.
I was just thinking today, I don't know enough about T4 as been so focused on TSH. Annoying they've stopped testing for this, don't know why. But interesting as mine does go down when TSH is up (not always bit all over the place).
So happy for you! Hurray for this life changing forum!
Do you have an iron result? How about a transferrin saturation result? Ie, a full iron panel?
Before you supplement with any iron pills you need to have those numbers and manage them closely.
Let us know… ferritin alone can guide you towards a more iron-rich diet, but because of permanent, irreversible organ damage due to excess iron in the blood you shouldn’t be supplementing without that number, understanding your own absorption rates, and regular testing (anywhere from every 5-12 weeks) until you find your own homeostasis.
We are all very different when it comes to iron absorption, and iron toxicity is no joke!
Your iron is 60% through range, and we want between 55-70%. You do not want to go over 70% and iron can easily drop or jump in a short time.
Exactly the same with transferrin saturation - you want about 30% through about 45% - and so your 33% is “ok”. For this one the range is usually a good guide as you can see. You don’t want to go over 45% as this indicates too much iron.
So if it was me and you are good with eating iron rich foods, I would commit to that for the next go round. The good thing about this approach is that you can’t really eat yourself into iron toxicity. Rather, it would be extremely hard as you would have to eat an enormous amount of food.
Have you ever tracked your iron intake? Counted the mgs you consume on any given day? I think you would find it very educational and might help explain your current ups and downs.
I use My Fitness Pal - not sure if it’s available in the UK? You can scan barcodes and the nutritional info for the food pops up… maybe 20% of the time I need to modify the entry to make sure the iron is accurate (since that’s all I’m tracking for.)
It’s helpful to know that our daily value of iron is 18 mgs.
Also helpful to know that our bodies shed 2-4 mgs a day.
And the reason we have to eat 18 mgs just to replace what we shed is because of the absorption rates of heme is only 15-35% and non-heme is even less at 2-20% if what we eat - not counting the things that will block it (like calcium, coffee, eggs, high fiber, etc.) Heme is less impacted by these blockers by the way.
So imagine you eat 18 mgs of heme iron then that technically on average you will replace about 2.5 - 6. If you eat 18 mgs of non heme you will replace about 1-3.
Also us hypo folks have trouble absorbing iron in general, which is another hurdle and also why the big mistake many of us make is simply not ingesting enough every day.
That being said - even the most iron rich food like beef liver only have about 6-8 mgs a serving more or less. Not as much as you think! In the US anyway fortified breads/cereal pack a big punch (sometimes 8 mg a serving).
When I first started I tried to eat 18 mgs of iron. It was actually impossible for me because i had to eat so much food to make it to 18.
So if you’re up for tracking it is unbelievably eye opening. I treated it like. 6 week titration period and saw that even with a very dedicated focus on eating iron rich foods, it did not move my results one bit. Note - my ferritin has been single digits/teens for the past year as long as I’ve been testing. It was about 5 when I first tested!!!
So give yourself a month of dedicated effort.
Then come back and let us know your next iron panel result.
Depending on how it goes for you, I can share some more tips if the food route doesn’t work well for you.
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)
Only 5% of Hashimoto’s patients test positive for coeliac but a further 81% of Hashimoto’s patients who try gluten free diet find noticeable or significant improvement or find it’s essential
A strictly gluten free diet helps or is essential due to 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 may slowly lower TPO antibodies
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.
Similarly few months later consider trying dairy free too. Approx 50-60% find dairy free beneficial
With loads of vegan dairy alternatives these days it’s not as difficult as in the past
Thank you. Yes following your previous recommendation I got coeliac testing via the NHS endocrinologist (they didn't want to).
Serum Transglutaminase ref 0-7 result 0.5.
But yes am aware that despite being negative a gluten free can help a lot and have been considering this especially as CRP is still high and gluten free also good for lowering inflammation (which is all probably related)
I'm pain free for the first time in 5 YEARS! Thank you. I feel alive again.
Wonderful news. Given this, absolutely no need to change to just chase numbers (side note - for anyone reading, when considering pregnancy the numbers matter a bit more despite how you feel).
As it’s still early days, you may continue to feel better, or you may feel worse again in which case you could consider increasing or decreasing dose. For now, as tattybogle has mentioned below, I would be inclined to stick with your dose for a little while longer up to 4 months.
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