Hello wise ones. I'm coming up to a year since a diagnosis of Hashimotos, and on Levothyroxine. I've been trying to get the dosage increased in tiny increments of 12.5 ug after each blood test. So far I've been successful but it feels like slow progress. I'm currently taking 87.5 ug daily.
My doctor here in France did agree to test ferritin at my last consultation (and B9, which I think is ok at over half way through range) which I usually have to pay for and I'm grateful for small mercies ! I also persuaded her it was necessary to test for FT3 and 4 as well as TSH - a real victory. Usually I have to hand write these on my prescription paper.
I have finally started to gain weight (which my doc considers one of the few, key symptoms of hypothyroidism) and have on going fatigue, sleeplessness, anxiety and god the awful brain fog.
My latest bloods show a third consecutive drop in ferritin from 134 ug in July 2021 to 76 ug last week.
I've read about the advice to try buy the expensive heme iron from the US, is that what I should do? I'm not sure what an 'iron panel' test is, which I've read about on this forum, should I ask for this? I don't eat meat except, reluctantly, some chicken but otherwise my diet is good, lots of green veg etc.
Second question is regarding my new thyroid results - tested at 8.30 am on empty stomach etc, no biotin for a week previously
FT3 1.27 (0.27 - 4.2) i.e. 33%
FT4 1.25 (0.93 - 1.7) i.e. 41.5%
I have another doc's appointment tomorrow, shall I plug on with asking for another increase in Levo, I know from previous advice that I need to get the percentages through range higher and at the moment the only tool in the toolbox is levothyroxine. Or am I missing something?
Thank you to anyone reading this ! Any comments or advice very gratefully received. xx
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florasmate
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Well, you do need an increase in levo, your Frees are much too low. But, you could try asking for T3, see her reaction to that! It's much easier to get prescribed in France because it's so cheap. But, frankly, if I were you and had to battle with my GP all the time like that, I'd change GPs!
otherwise my diet is good, lots of green veg etc.
Lots of green veg does not necessarily make for a 'good' diet. You also need protein and fat. If you don't eat meat, your B12 is going to be low, because there's no B12 in any sort of veg, only animal products. Do you eat eggs and dairy? Do you ever get your B12 tested? And, of course, you're going to be low in iron/ferritin because it's harder to absorb from vegetables. And, with those low Frees, you probably have low stomach acid, making it even harder.
Yes I wondered about trying T3, I have just today found that it is suggested as an alternative treatment on the official French health site. At the same time they say explicitly that T3 should not be tested for diagnosing hypothyroid (or subsequently), and that all dosing should be done following TSH tests. So my doctors are just doing what they're told, really. I will push for another Levo increase tomorrow, as in fact it's not my own doctor it's one of the replacements, who I find harder to get traction with.
Yes I do eat protein, lots of legumes, eggs and some non-cow dairy. I've had B12 tested 6 times in the last year, each giving a different value but recently they've been high in the range. And I take the multi B Thorne daily. I stopped gluten for the past six months, but the flour etc here is so nutritionally poor I have just re-started on bread.
I would not have said the flour is nutritionally poor, it just has less gluten in it.
At the same time they say explicitly that T3 should not be tested for diagnosing hypothyroid (or subsequently), and that all dosing should be done following TSH tests.
It's just insane, isn't it! Like the whole world's gone mad! If you were vit d deficient they wouldn't test zinc to see if you're on the right dose! Total madness! And, that's why I self-treat!
"Goat?" Well yes goat and sheep cheeses/yoghurts 😬 (for reasons of migraine avoidance)
The French guidance (HAS Sante) also says that "dietary supplements ... are not recommended for the treatment of hypothyroidism ". And I've actually been told by a practising medic that food has no relation to health so ... we are actually doomed
Well, that's weird, considering how food oriented the French are! But, I know they're not terribly keen on testing nutrients. And, if you've ever stayed in a French hospital, you'll realise that they don't believe the sick need feeding up! Most of it is inedible!
Having a ferritin level of 134 micrograms/L is quite high for a woman (but not dangerously high). Did you supplement to get it that high? And do you know the reference range?
It is possible that your ferritin rose because you had inflammation, but then the inflammation level dropped making your ferritin drop as well.
Just a personal anecdote...
My ferritin has been poor most of my life. It took me a long time to raise it to mid-range. I couldn't stop supplementing for years because every time I did stop my ferritin would go into free fall. I had to take a maintenance dose to keep my ferritin fairly close to mid-range. Perhaps you might have to do the same.
Note that the iron supplements that doctors prescribe can be bought in pharmacies in the UK without prescription. Personally I always took ferrous fumarate 210mg. Nowadays, when I need iron I take one tablet per day, 2 - 5 days per week. I adjust the number of days I take iron as necessary.
Eventually I got my iron and ferritin at levels I was happy with and managed to stop supplementing. But from beginning to end I was supplementing for seven years to raise then maintain my levels.
Hoping you see this, as I know it's an older post (but came up when I was searching for something).
I've just had my ferritin checked, and it's dropped from 110 ng/mL last May, to only 52 this May (same range for both of 13-150).
My CRP has gone up to 8, the last time it was checked was a couple of years ago, and it was still raised (6.61) but not as high. My erythrocyte sedimentation rate (which I don't think has ever been checked before, but I understand also shows inflammation) is high at 15 mm/hr (range 3-9).
So basically, my ferritin has halved, but my crp has increased, so the opposite of what you experienced.
I have no idea what's changed in the last year. Diet hasn't (I'm gluten free and vegetarian, been veggie for 40 years and GF for 4 years), supplements haven't changed. The only possible thing I can thing of is that I was hospitalised in December for 10 days with a bowel blockage that needed emergency surgery, and I didn't take any of my vitamin supplements for at least a couple of weeks (nor any thyroid meds for 5 days, not great). But I would have thought that if that did have an effect, I should have recovered from it by now?
I've worked hard to get all my vitamins and ferritin/folate in a good place (and you actually really helped me a few years ago with suggestions), so am somewhat flummoxed.
I can see that 134ug was quite high, my concern is with the freefall drop. And yes when I had a high CRP, the ferritin level was 111. But it's been falling since then. No I've never supplemented with iron of any kind. I've been non-meat eating (but fish) since the mid '80s but never had anaemia of any kind.
I'll have a look online for the ferrous fumarate you mention, and get another test done in six months or so.
There is no particular brand of ferrous fumarate that is better than any other. So I just go into pharmacies and ask for :
Ferrous Fumarate 210mg, one packet of 84 tablets. Pharmacists might be unhappy about supplying more. When I was taking it regularly I could get 2 packs at a time (but that was several years ago). The reason they were sold in packs of 84 tablets is because until recently the maximum suggested dose was three tablets a day and 84 is enough for 28 days.
This is one of the brands I was supplied with when I was actually prescribed iron by the doctor :
OK that's helpful many thanks. So the advice is not to rely solely on ferratin levels ... though the labtests link suggests that this is the best indicator for iron deficiency - it's complicated !
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