I'm new here, coming over from the Pernicious Anaemia forum. For some background, I discovered I was B12 deficient with macrocytic anemia October 2016, and have been self-injecting B12 for the past 4 months. While the B12 has helped tremendously, I still feel notably tired and have a host of other symptoms that perfectly fit the hypothyroid picture. I ordered some follow-up tests and found out today that I have low T3/freeT3, but normal T4 and TSH. I've posted the relevant results below. From my limited research, it sounds like this is a not a problem with the thyroid glad itself, but could be triggered by other endocrine issues, related to inflammation, autoimmune problems, or chronic illness. I've also heard that pharmaceutical treatment for low T3 is typically ineffective, and that the only way to treat is to address the underlying cause. Can anyone advise on likely causes for low T3, and what treatments are most effective?
Results:
T3 UPTAKE
25 (22-35%)
T4 (THYROXINE), TOTAL 7.1 (4.5-12.0 mcg/dL)
FREE T4 INDEX (T7) 1.8 (1.4-3.8)
TSH 1.44 (0.4-4.5)
T3 REVERSE, LC/MS/MS 22
(
8-25 ng/dL)
T3, TOTAL 58
LOW (76-181 ng/dL)
T4, FREE 0.9 (0.8-1.8 ng/dL)
T3, FREE 1.7 LOW (2.3-4.2 pg/mL)
Red blood cell count 3.66 LOW (3.80-5.10)
MCH 34.0 HIGH (27.0-33.0)
MCV 99.2 (80.0-100.0)
Absolute Eosinophils 11 LOW (15-500 cells/uL)
Written by
etreas
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It's not just your FT3 that is low. Your FT4 is also too low. However, your TSH is what might be called 'normal'. And, as doctors tend to go by the TSH only, you might find it difficult to get any sort of diagnosis.
With that configuration of results, I would say that your problem lies in the pituitary, or the hypothalamus. What is called central hypo. Doctor know very little about that, and believe it is very rare, so never test for it! However, if you want to know if it's autoimmune, you should get the antibodies tested - TPO and Tg antibodies.
I don't know what you mean by 'pharmaceutical treatment', but the only treatment for any kind of hypothyroidism is thyroid hormone replacement - hormones, not drugs - levothyroxine (T4), liothyronine (T3) or NDT (so-called Natural Dessicated Thyroid, made from pigs glands, but not as natural as all that, however, it does contain both T4 and T3). But most doctors will only offer you levothyroxine.
If I were you, I would take these results to your doctor, and when he says they're 'normal', politely point out the low FT3, and when he says that's not a problem, gently suggest that you might have central hypo, due to the low TSH, which is failing to stimulate your gland... Good luck!
Welcome to the forum. Yes it is difficult in the UK to get started on treatment but don't know what the situation is in the US. I hope it's easier. There are other things that help the Thyroid as we tend to be low in vitamins and minerals. So tests to look at, folate ferritin and Vit D, you already are treating your B12 and as Greygoose suggested antibodies.
If you look on the Thyroid Uk site you will find lots of info to help you on your way, does don'ts and possible symptoms. You may find you have other issues that are also thyroid related as well. It's not an instant fix as it can take time to get the right dose for youbut once on medication it takes about 6 weeks to get it fully into the system then you should be retested and probably given an increase of 25 mcg D and then keep repeating till you find your dose. Things may vary slightly depending on what type of treatment is recommended. Sometimes you won't feel much different at first but you should feel improvements as you increase the doses. Don't try to cut corners as that often sets you back! Your body needs to get used to the medication
I agree with the pituitary problem, but also note that your blood count is poor considering the fact that you're already taking B12. We need the full package of bioavailable B's to manage methylation properly. I'm going to take a wild guess now as to why your blood count is bad...
The pharmaceutical version of folate 'folic acid' is a problem for many of us and it's better to use methyl-folate and avoid foods that are fortified with 'folic acid'. I suspect you may have this problem, although you haven't mentioned your folate levels probably because your blood levels of folate (I suspect) are good? Unfortunately blood tests don't differentiate between folic acid and methylfolate; whereas our cells actually do and for possibly a staggering 20% of the population that have a MTHFR gene mutation 'folic acid' is worse than useless as it clogs up the receptor sites where we require methyl-folate. In other words, your body needs the equivalent of proper single malt whiskey, but it's being clogged up with a cheaper blend.
Personally, I think it scandalous that the food manufacturers are harming a whopping percentage of the population for the benefit of the majority. It's like expecting everyone to wear sun cream when a lot of people with darker pigmentation already don't get enough Vitamin D!
Three are some useful links on this problem including one by thyroidUK, so have a look there and search MTHFR gene mutation.
they are right about drs not really knowing a lot about central hypothyroidism hence I think that is the kind I have and when my test results show I am low in ft3 ft4 and have a low tsh as well below 1 they just shrug and tell me they cant increase my medication while I am losing hair and have fatigue issues.....and weight gain. I have been to 3 drs in the last 4 drs in the last 3 years and all were oblivious like I was fine just looking at tsh but admitted my ft3 ft4 could be better and blamed it on "some underlining issue" but they don't know what it is... I have gotten my b12 in upper normal, take the b complex, take vitamin c , and eat very healthy and low fat and I take a host of other vitamins incl d3 with k2, and fish oil , flaxseed oil and bhrt for hormones.....
I can understand how frustrated you are and wondering where do I go from here...when drs brush it off and you know they just don't have education in this area. Do I increase my ndt ? Is staying on 1.5 grain dangerous to my health when the ft3 ft4 are barely normal low? where do you go from here.... I spend a vast amt of time googling to find answers. There is one dr that is about 8 hours away that may be helpful bec he does reflex test on the ankles etc to see if you are hypo still, not just blood test but I would hate to drive that far and end up with just another dr saying the same . The last two drs both seemed online to be so called different from all the other drs and were natural and medical drs yet after going to them, they seemed to be still held to the tsh training to hold to not going below 0 on tsh. Are they right? I just don't know.....
I was diagnosed in 2016 and have never had antibodies yet tested over and over by drs. dozens of times.
Thanks everyone for your extremely helpful comments! I should have mentioned earlier, my folate, vitamin D, ferritin are all normal and my antibodies for TPO and Tg were both negative. I have also been supplementing with methyl-folate, so it's perplexing why my anemia is still not resolved. I am going to switch to cyanocobalamin from methyl, to see if that's more effective. It sounds like I have "Central hypo", which several of you have suggested, so I will be persistent with my doctor to look into that!
Cyanocobalamin is not more effective than methyl, it's very difficult to absorb. Why do you think it might be more effective?
There's not such thing as 'normal'. When a doctor ways 'normal', he just means 'in range'. But, the ranges are so vast, that they can't all be 'normal'. It's where in the range you fall that counts. So, you really need those numbers and ranges to tell if you're optimal, not just 'normal'.
I've hears that responses to different B12 forms are highly variable, and that some do not respond well to methyl. It's worth it to at least give another form a try.
I should have clarified my ranges, while it seems are all normal/high:
folate >24 (low <3.4, borderline 3.-5.4, high >5.4) ng/mL
ferritin 52 (10-154) ng/mL
Vit D 74 (deficient <20, insufficient 20-29, optimal >30) ng/mL
Well, I only know what I've been told. And i was told not to take cyano because we couldn't absorb it. B12 is not really my subject, and I don't feel comfortable talking about it on here. I would suggest you ask the PA forum, because they're the experts. This is a thyroid forum.
PS Although, come to think about it, that advice about cyano probably only relates to hypos. We hypos aren't very good at converting things, so that's probably why methyl and adenosyl are recommended for us.
Do remember when you're on the PA forum, that most of the members are not hypo. And what applies to them, doesn't necessarily apply to us.
Your folate is very high and ferritin is low - this is classic MTHFR deficiency. I expect that at some point (over quite a long period) that you were taking synthetic folic acid, either due to pregnancy or in a multivitamin / fortified product - so check your cupboards (don't want to name names, but some well-known brands are guilty)! That is clearly still circulating in your blood stream as it couldn't be utilised and is just clogging up your system. As you were not making blood cells your uptake of iron was restricted. You probably need to detox before supplementation is properly effective as you say that you aren't really absorbing the methylcobalamin very well... re: grey goose I don't believe that cyanocobalamin is the solution though.. Maybe try taking sublinguals for a while on a lower dose?
The drIam article struck me as interesting and advises taking glutathione as a gentler way to get going.. I've not tried it, but as I realise that I cannot tolerate high doses of b vitamins it may work for me too. (I had miscarriages on synthetic folic acid and now I know why.)
Dr Myhill recommends glutathione as part of her methylation regime - I expect you may benefit from that and P-5-P and phosphatidyl serine (bear in mind it's soy based, but from lecithin i.e. not from soy protein - I can't do soy protein or MSG) I personally, have never tried glutathione, but have just started on lecithin with no adverse effects, which surprised me as I don't usually do soy (helps me sleep and feel relaxed).
This is fascinating. My daily multivitamin contains 400 mcg folic acid, which I've been taking for years, so perhaps that is the culprit. I will change multis and look into the other supplements you mention. Thanks for the information!
You know what, I think that must be it! Also check out your cereals - I buy gluten free, organic ones now which I only eat at bedtime because I try to have more fats / protein earlier in the day; yeast extracts (most are fortified) and anything with 'fortified' flours (especially if you go to the States). It's a minefield, but by educating ourselves we'll get there!
What amazes me is how blasé the committees that make nutritional decisions on behalf of everyone are being in the light of some pretty strong evidence that synthetic folic acid is actually pretty harmful to many people. I think the elderly and anyone with metabolic (hypothyroid) or gut issues should also be wary (whether or not they have the MTHFR mutation) as they'd probably struggle to convert synthetic folic acid into methylfolate.
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