Please excuse the handwritten results (and smiley/unhappy faces!) but please could you let me know your thoughts? Iām feeling disheartened because I feel like my thyroid results (and a few others) are worse, despite the fact that inbetween tests, Iāve made dietary changes (Iām not coeliac but Iāve nearly gone gluten free and Iāve been restricting dairy and sugar; generally just much ācleanerā) and I started taking supplements (multivitamins as of 2nd Dec, Ferrous Fumarate x2 daily as of 10th Jan, 2000IU vitD vitabiotics x1 daily as of 23rd Dec).
Most importantly, I definitely donāt feel any better, worse in fact. My gut is perhaps better actually! It wasnāt too bad anyway though. Headaches/migraines, weakness/fatigue and spaced out/brain fog are awful.
Both tests were done at 9am after only water to drink, no food since the night before and no levothyroxine for 24hrs.
Itās worth noting that I started taking multivitamins with biotin in them on 2nd Dec - 7 days before my 9th Dec test - the opposite of what I should have done, I know! š¤¦š½āāļø I didnāt know at the time and my endocrinologist didnāt ask what was in the multivitamins. I was tempted to read off the list of ingredients just to check but she wasnāt at all interested. It was a small dose - only 75ug as part of a multi which I took once a day (I now take them twice a day).
I didnāt take any supplements at all (apart from VitD) for 7 days before my 9th Feb test.
I didnāt take any supplements at all in Oct and Nov 2020 (having finished a three month course of Ferrous Fumarate - which Iām now back on š).
Iāve been on 100mcg levothyroxine since Spring 2018 (diagnosed hypothyroid Nov 2015, Hashimotoās diagnosis Dec 2020 hence diet changes and supplements!). The endocrinologist decided not to up my dose of levo after the Dec tests when I told her about the biotin. The Feb tests were essentially a re test minus biotin but I was interested to see what the affect of vitamins and diet change would be after 6-8wks. She now wants to up my levo to 125mcg and then re test in about 6wks. She then thinks I should try T3 if a higher levo dose doesnāt help.
Reassurance would be hugely appreciated - Iāve really been trying very hard to do everything to help myself over the last two months but I feel like Iām somehow doing the opposite! š°
Huge thanks in advance š
Ps. Frustrated that she decided to test TT3 this time and FT3 the last time - that really doesnāt help me make sense of anything! I specifically asked her to test FT3 like last time but she didnāt š¤ I also asked her for the other antibodies test and RT3, just out of interest, but she didnāt put those through either šš¤·š½āāļø
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Thank you SlowDragon that makes me feel better š
Hopefully an increase in levo will help and Iāll keep going with the iron.
Iāll also look into a B complex with folate. Is that because things in multivitamins arenāt always absorbed that well?
Iāll become more strict with gluten.
Any ideas re.how to decrease antibodies? I ask because Iām assuming a decrease in antibodies will help symptoms? Even if only a little bit? š¤
Also any ideas re.how to improve conversion? There are lots of causes of poor conversion, arenāt there? I was hoping improved vitamin levels might help š¤
Members often find symptoms improve and perhaps conversion improves when all four vitamins are optimal
Multivitamins are never recommended on here. Most contain iodine and are often cheaper poorly absorbed ingredients
Always test before starting any supplements
We only every recommend a good quality vitamin B complex, possibly a separate B12 as well, if Serum B12 is under 500 or active B12 is under 70.
Vitamin D, plus usually recommend important cofactors magnesium and vitamin K2 when taking vitamin D
Iron supplements, only if full iron panel test for anaemia shows low iron. Important to regularly retest full iron panel every 3-4 months if supplementing iron
Possibly selenium supplements may help improve conversion. You can test selenium levels first, or perhaps just take selenium supplement once or twice a week.
Correct most hypothyroid patients have LOW stomach acid....extremely common to be misdiagnosed as high acid. Virtually identical symptoms but very different treatment.
Absolutely strictly Gluten free diet often helps improve gut function. Many members notice TPO antibodies reduce slowly on gluten free diet. But even if antibodies drop within range, you still have Hashimotoās.
As GG explained the antibodies are clearing up after attack....not causing attacks
Ok, thank you SlowDragon I was perhaps hoping for too much after 6-8wks. I really hope optimal vitamins will help me but theyāre obviously not optimal yet - which still gives me hope!
I got my multivitamins from a private company and they werenāt cheap so I hope theyāre not full of cheap stuff! The B12 in them is obviously working so at least thatās something. Isnāt iodine a good thing? I thought it was necessary for thyroid? Maybe not in excess?
My vitabiotics VitD seems to be working too? As does my Ferrous Fumarate? Now that SeasideSusie has helped me with my supplement schedule! I think Iām absorbing it more efficiently now.
Could you recommend a selenium supplement to take once or twice a week? Is it dangerous if thereās too much? Iām not sure I can face more testing just yet! Iāve been eating Brazil nuts but I clearly need a truck load!!!
Yes the stomach acid thing just didnāt make sense to me. I kept asking the GPs āwhy?!ā but they never had answers; they just offered omeprazole every time. I always said no...
Iām going to be strict with gluten from now on and see if it helps. My gut has definitely been happier since restricting it and eating cleaner in general but no reflection in my symptoms or bloods yet...
Well, I'm afraid I've got quite a lot of thoughts, here...
1. Obviously you are under-medicated. When on thyroid hormone replacement, the TSH should come down to 1 or under.
2. You're a rather poor converter. And, it would be a very good idea if she did give you the T3, because you'd have to take a huge dose of levo to get your FT3 anywhere near high enough to make you well.
3. You more than likely have low stomach acid, given your low nutrient results.
4. Taking a multi-vitamin is a really, really bad idea, for all sorts of reasons. If you want me to go into more detail, I can.
5. Being 'nearly' gluten-free is not likely to help you in the slightest. It's 100% or nothing.
6. Biotin, whilst it's a good idea to stop it 1 week before the blood draw, just in case, doesn't always affect all the results. If biotin is used in the testing method, then yes, it can have an effect. But, you don't know which result it's going to affect - or maybe all of them. But, you don't know if it raises the result or reduces it. In fact, it's totally unpredictable. What's more, I wouldn't expect your doctor to know anything about that. Doctors just aren't trained in nutrition, and aren't in the least interested, as a general rule.
7. You don't need the other antibody test. In fact, you don't need to retest them at all. Once you have one antibody over-range, it means you have Hashi's, and Hashi's doesn't go away. Antibodies fluctuate but that has no effect on the disease, doesn't mean it's any better or any worse. Antibodies lead their own little lives independant of the disease.
8. Absolutely no point in testing rT3. It won't give you any information you can't get from the other tests. It will tell you if it's over-range, but it won't tell you why - and there are many, many reasons for high rT3, and only one of them has anything to do with thyroid. In fact, given the level of your FT4, you probably did have high rT3 last December, but that wouldn't change anything. rT3 is the result of a problem, not the cause. It is inert and only stays in the system for about 2 hours before being converted into T2 to recycle excess T4. Now that your FT4 has gone down, the rT3 probably has, too - unless you have some other sort of problem that causes excess rT3.
8. And, talking of pointless tests, no point in testing magnesium, either. The results won't tell you much due to the way the body handles magnesium. It could be over-range, but you could still be deficient in magnesium, so best to just take some. Excess is excreted, anyway.
Thank you for taking the time to reply greygoose I appreciate it.
Yes I have read that TSH should be 1 or under when on thyroxine. My endo has told my GP that it should be less than 2.5 though....that doesnāt seem right to me!
Any ideas re.how to improve conversion?
GP spent appt after appt telling me that I probably have high stomach acid and kept offering omeprazole (which I never took). Iāve read about low stomach acid which makes more sense!
When I told my endo about biotin, she told me to stop it for a week and have the tests re done. Iāve read the same on here?
I thought that a lower level of antibodies would be better? Get it into remission?
My endo has told my GP that it should be less than 2.5 though....that doesnāt seem right to me!
That's for pregnant women, or those wishing to conceive. But, even then, it's somewhat meaningless because it's not the TSH that is important, it's the FT4.
Any ideas re.how to improve conversion?
There are so very many causes of poor conversion, it's not that easy. But, first step is to optimise all your nutrient levels.
GP spent appt after appt telling me that I probably have high stomach acid
They just have no idea that such a thing is possible. They don't learn about it in med school. And, the symptoms are the same, so it's very confusing for the poor dears.
When I told my endo about biotin, she told me to stop it for a week and have the tests re done. Iāve read the same on here?
Yes, that's right.
I thought that a lower level of antibodies would be better? Get it into remission?
Nope. Antibodies have nothing to do with remission or the progression of the disease, or anything like that. They're just the Mrs Mops of the condition, coming along to clean up the mess after the party.
āPoor dearsā and āMrs Mopsā made me laugh, thank you!
Iāve read so much about getting antibodies down into range because then itās āin remissionā. Hence feeling concerned about the increase in mine.
Iāll keep working on my vitamins and see if that helps my conversion, thank you.
Iāll also aim to optimise thyroid levels...Iām definitely not pregnant or trying to conceive so 1 it is!
Well, I don't know where you've been reading, but there's just no truth in that. Artificially reducing antibodies - if such a thing is even possible, and I'm not convinced it is - will not put your Hashi's into remission.
There is a misconception that it's the TPO/Tg antibodies that attack the thyroid. They don't. But, during an attack, traces of TPO and Tg will leak into the blood, and that's when antibody numbers increase as the come to clean it up, take it away and dispose of it.
However, it's possible that the confusion arises because, if your Hashi's is in remission - which sometimes happens between a 'hyper' and hypo swing - antibodies will be lower, because there is nothing much for them to do. But, the antibodies being lower didn't cause the remission. There's so much putting carts before horses goes on in medicine!
Thank you greygoose that makes a lot of sense. Iāve been following fellow sufferers on Instagram - some of whom have written blogs, books etc. They talk a lot about getting their antibodies into normal range and therefore āinto remissionā so thatās what I thought I should be aiming for in order to save as much as my thyroid as possible! Iād really rather not become obsessed about antibody levels though, that suits me fine! Do levels tend to fluctuate frequently in Hashimotoās patients?!
Well, that just goes to show that a lot of people that write about thyroid, have no idea what they're talking about! Best to 'follow' us, on here, I think.
Yes, levels do tend to fluctuate frequantly in Hashi's patients - in the beginning, especially. As the thyroid gets smaller and smaller, there's less to attack, so attacks become less frequant, levels stay more stable, and antibodies reduce. So, reduction in antibodies tends to mean that the thyroid is coming to the end of its life, rather than that Hashi's is going into remission.
But, whilst I can understand your desire to save as much of your thyroid as possible, it isn't really going to make that much difference once the process of destruction has started. You will still have to take thyroid hormone replacement, because your thyroid will not be able to make enough hormone to keep you well, and thyroids do not regenerate. And, once you start the thyroid hormone replacement, what's left of your thyroid will stop production, anyway. So, whilst it's good to have some thyroid left in case of emergancies, it's not going to make much difference to your life-long treatment. And, as far as I know, it can't be done, anyway.
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