Hi, I’m hoping that someone wouldn’t mind looking at my latest thyroid and vitamin results and advise. I believe I need to go down on my levothyroxine dose, I’m currently on 100mg of levothyroxine. I posted before about my Levo level in that I was increasing the dose trying to treat the problem that turned out to be a B12 and folate deficiency.
On the advice of this group and lack of willingness to test for anaemia by my GP, I started taking B12 and folate supplements and was tested 2 weeks later in January
My results late December were:
B12 - 283 (197-771)
Folate - 3.6 (3-20)
My results in January are:
B12 - 480
Folate - 7.4
TSH - 1.53 (0.27-4.2)
T4 - 16.4 (11-21.2)
I have been taking the supplements for 2 months now and mentally feel so much better, less mentally tired, much better memory and concentration.
I’m still feeling physically tired, do you expect that to improve over time? I have had a big improvement but still don’t feel quite back to normal and I’m not sure if I need to be patient or if I need to make another change although not sure what. I know I was deficient for over a year. My other vitamin levels are high (d, ferritin) and I’m gluten free.
I’m so grateful to this group because I have been suffering for over a year, with 3 drs (including an endocrinologist) saying my bloods were normal and it turns out they were not, no one knew how to treat a thyroid patient despite having all the data in front of them! I know I'm speaking to the converted but it's still frustrating at the lack of knowledge in the profession that is supposed to help.
Thank you very much.
Written by
KE12
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yes, but previous results on 125mcg , (showing very high fT4) did suggest that you may have been taking slightly too much Levo for your needs... so feeling an improvement on a lower dose makes sense :
December 2021 - 125mg Levothyroxine
TSH: 0.47 Range: 0.27-4.2
T4: 21.5 Range: 11-21.20
But your current results do not suggest that reducing any further is necessary.
i'm all for experimenting , and have nothing at all against trying lower doses ... but when you 've noticed improvements starting to happen after a change in dose , i think it's a good idea to allow a period of stability to allow your body to gradually build on those improvements. Changing dose again so soon may well undo the improvements you have already noticed.
Obviously it's your call , but if i were you' i'd hang on for another 2/3 months to see how it goes before lowering Levo anymore.
Reading your previous post I think your GP is mixing up anaemia with Pernicious Anaemia. Pernicious Anaemia is an autoimmune disease which attacks the stomach preventing absorption of B12 from food. Anaemia is when you don't have enough red blood cells to carry oxygen around your body and haemoglobin would be low. They are two different things. I think maybe your GP skipped that lecture or he fell asleep!
Your levels are improving so that's a good start, you should carry on supplementing. Are you taking both B12 sublingual plus a good, bioavailable B Complex to keep all B vitamins balanced?
Remember to leave off B Complex before any blood tests as it contains biotin and this causes false results when biotin is used inthe testing procedure (which most labs do).
TSH - 1.53 (0.27-4.2)
T4 - 16.4 (11-21.2)
These results suggest undermedication and the need for an increase in your Levo if you didn't increase at the time. Generally the aim of a treated hypo patient on levo only is for TSH to be 1 or below with FT4 and FT3 in the upper part of their reference ranges. Your TSH could be lower and your FT4 is 52.94% through range so there's room for that to go higher.
I've come to the conclusion my GP knows nothing! I also had an argument with another GP at the same surgery because he refused to test for anaemia (any sort) because my red blood count was in range.
I am trying to put as much control in my own hands before having to face further arguments with drs.
I'm taking a sublingual B12 and my folate is methyltetrafolate. I'm taking iron and vitamin D and my tested levels were high on those so I'm good there. I'm not taking additional B vitamins but I will if you think they will help. I will make a note to stop taking them for the blood tests.
It's interesting that my thryroid results show I need to go up because when I was on 125mg I didn't feel great and it felt too high. Now that I'm making progress with my vitamin deficiencies I might experiment with decreasing to 75mg and see how that goes.
I've tested for ferritin and vitamin d and they are at good levels. I have taken these for years but I didn't know about folate or B12 or other vitamins, which I'm learning about now.
I try and always do the thyroid tests in the morning and not take my pill 24 hours before based on advice from here. The so called specialist didn't agree so clearly didn't know enough to know what it would show
My GP is willing to test what I need but cannot interpret them. You can see why this group is needed.
B12 - 283 (197-771) --- 15% of the way through the range
Folate - 3.6 (3-20) --- 3.5% of the way through the range
My results in January are:
[I'm assuming the same ranges for B12 and folate]
B12 - 480 --- 49% of the way through the range
Folate - 7.4 --- 26% of the way through the range
Optimal levels for Serum Vitamin B12 and folate are :
B12 : Upper half of the range with a minimum of 500. Getting level close to top of range or even up to 1000 suits some people. B12 isn't poisonous.
Folate : Upper half of range i.e. 11.5 - 20.
My personal preference is to get folate up to close to top of range, but not over. If top of range isn't given (it often isn't) I aim for double figures.
Best supplement for B12 (for most people - there are a few exceptions) is methylcobalamin.
Best supplement for folate is methylfolate.
Both the above supplements are easily sourced on sites selling supplements.
Humanbean, what effect would a very low folate have on someone? Mine is very low and wonder how much of what I’m feeling could potentially be attributed to that? Sorry to jump on your thread KE, I just noticed a similarity in some vitamin deficiencies, so was interested xxx
I'm not 100% certain of this, but I think the body needs good levels of folate in order to make use of any vitamin B12 it has.
I've always assumed from that that low folate could also cause symptoms similar to those of low B12.
I should point out that I struggle to raise my folate but I don't know why. Avoiding folic acid and taking methylfolate definitely helps how I feel, but my levels do still struggle to stay where I want them to.
That's really useful thanks. Perhaps I need to get to upper ranges or higher before I'll be back to normal, I might be being impatient. I'll give it a little while longer and retest again to see what I need to do. The percentages really drove it home for me, 26% is not great.
I'm taking both the recommended types for folate and B12 - I needed the best stuff because I was very sick.
My ferritin level is 109 (13-150)
My vitamin D is 90 (50-150) but I've increased my dose since this test in April
I may also wait to push for an anaemia test once I get my vitamins in a good range.
Vit B12 & folate are increasing but still have a way to go, and how ‘high’ is the ferritin? You really need an iron panel to totally exclude anaemia as last reference made to ferritin was in March 2021 at 80ug/L (13-150) which was 49% through range and could be skewed down to inflammation. An iron panel would consist of serum iron, ferritin transferrin saturation and either TIBC and/or UIBC.
100mcg Levo isn’t a big dose and your labs do not indicate a reduction is necessary. If you still feel unwell I would concentrate on getting iron, nutrients optimal because they are needed to make thyroid meds work effectively.
Hi ke12, would you mind sharing what supplement you take for ferritin? I have low ferritin. I try to increase iron rich foods but I’d also like to take a supplement and I don’t know what to take.
HiI have Pernicious Anaemia (PA), Hashimoto’s/hypothyroidism and Coeliac disease.
I’ve had anemia too, (very low levels of iron & ferritin), Vitamin D deficiency and couple of years ago Folate deficiency… all resolved thankfully but mostly through diet firstly.
I had to see dietitian who unfortunately didn’t know about methylation and methyl folate nor did my GP and actually said my GP is over cautious and wasn’t that low 🤦🏻♀️
I did take the recommended dose of folic acid over 4 months and my levels have been fine past few years.
Alcohol depletes folate and cooking things to death also destroys it in food so these are areas you must watch.
I actually had to have a FIT sample taken to rule out various things this maybe due to my coeliac disease and age, as hidden cancers obviously a concern, for me having this condition.
From what I gather methyl folate hasn’t been tested to say it’s suitable for pregnancy so I think this is the reason folic acid is pushed on NHS.
I assume if you have a methylation problem the methyl folate will be a better choice but obviously seek advice, I’ve found nutritionists more likely to help in this area.
You mentioned bleeding, folate can alter menstruation, but that actually needs addressing to rule out anything else.
I didn’t even show symptoms of folate deficiency that I recall, although now looking back I too had spotting in between periods and put it down to perimenopausal and the rollercoaster of hormones, which still could be, but since reading increasing B vitamins can help increase progesterone.
Spotting can often due to low progesterone to oestrogen ratio.
From what I’ve read you must make sure B12 is addressed, so it’s not the problem before thinking you have a folate problem, as folate can mask an actual B12 problem.
My B12 is often well over 700 into the thousand and I need that level to feel well I’d definitely feel lethargic and have the return of nerve issues I had in my legs, brain fog and shortness in breath if I was at the low end of the normal range, I have no idea if I’d achieve that range with oral supplements, as I have B12 injections every 3 months.
I would say if your B12 was higher you’d have more energy definitely, going on my own experience.
I had these deficiencies mine was obviously caused firstly by coeliac disease and what often happens is stunted villi in the stomach so absorption is an issue which lead to leaky gut and then Hashimoto’s and PA …after 9 years of going completely gluten free as obviously this is my trigger problem my gut is still healing I had extremely high antibodies and biopsies showed damage.
I’m really on the ball with my nutritional needs now.
B12 symptoms can be very similar to thyroid problems and can go hand in hand along with low stomach acid hence absorption issues and vitamin D is a known problem with autoimmune diseases too.
I’ve only had a total B12 done ever there is an active B12 that you can have privately.
Never really understood why they do total anything in blood tests, as we actually don’t know our genetic predisposition on how we use these things so total anything to me is only an indication but not a thorough answer and is probably why some require higher levels to feel well and the annoyance of once supplementing they don’t want to check afterwards, totally bizarre.
I’m assuming it’s all costs.
I was very lucky my gastroenterologist wanted B12 higher otherwise I’d be still having nerve issues in my legs.
Thanks, it’s really useful to hear your experience and use it to consider my next steps. I really think I’ve got to get my vitamins up and take it from there. I seem to be absorbing them according to my blood tests so I’ll stick with that for now.
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