Hello, I am a new member and this is my first post. I was diagnosed with hypothyroidism in 2011. I was put on levothyroxine and told it would take a few months to start feeling more like my old self. In 2012 as a result of feeling no better and doing some research I was diagnosed with chronic Vit d deficiency and told to start taking Vit d3, which I have been taking ever since but in the morning. I take Levothyroxine at night as this seems to be more effective that way round. But I continued to feel ill, toward, weight has piled on and in 2015 I was told I have cfs/ME. But in 2021 after years of feeling absolutely awful, and following lots of research I asked to be tested for B12 deficiency. I was told my levels were low but not enough to warrant any action. I did some more research and realised lots of weird things I had were symptoms of B1/ deficiency so I paid to have a private blood test which confirmed B12 and Folate deficiency. I went back to my then GP who agreed to give me B12 injections. I have them every 12 weeks and they make such a difference, but only for a few weeks then my substantive symptoms return.
I take liquid collagen, turmeric, cholesterol yoghurt drink in the morning with my Vit d. I also take medication for my osteoarthritis and a mild antidepressant which is meant to help me manage the pain I am in better. But the truth is I don’t feel better at all. I can’t remember the last day I had without pain in my joints. But my muscles feel like they are calcifying in my body and I am permanently in pain if I am moving around. But I have no pain when I am sitting or lying down. I do a mentally demanding job full time and don’t think this would be possible if I had cfs/ME.
I honestly believe there is something not right with my body’s systems. I have asked a number of times to see an endocrinologist but the GP just puts everything down to cfs/ME and my now excessive weight. I’m at a loss as to how to get better my bones and muscles are so painful when I walk, but they are so much worse if I don’t take the collagen, Vit d, B12 and folate. So I really think it is something else making me ill and tied in with my hypothyroidism. I also have eczema and psoriasis and allergies to cats, dogs and low level lactose intolerance. I would genuinely welcome any thoughts on how I get to see someone who will look at the whole of me rather than treating me as a box of random bits. Thank you so much for taking the time to read all that!
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MusingsonHealth
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That’s the trouble with having a diagnosis like cfs/ME on your record. You could have an arm hanging on by a thread after an unfortunate incident with a combine harvester and your GP on seeing the note would mutter thoughtfully, “Yes, that happens sometimes with CFS/ME…”
Welcome to the forum. 🙂 Glad you’ve found us. First things first then, are you optimally replaced for your hypothyroidism? Do you have any blood test results that you’d like to share?
So we can offer better advice, can you share blood test results (with ranges in brackets) for:
TSH
FT3
FT4
Plus any antibody and key vitamin tests (ferritin, folate, vitamins D and B12)
If your GP is unable to complete all the above (eg if TSH is within range, some surgeries may not be able to access FT4 and FT3 tests), you could look to do this privately, as many forum members do, for a better picture of your thyroid health:
Recommended that all thyroid blood tests early morning, ideally just before 9am, only drink water between waking and test and last dose levothyroxine 24 hours before test
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)
As you normally take levothyroxine at bedtime/in night ...adjust timings as follows prior to blood test
If testing Monday morning, delay Saturday evening dose levothyroxine until Sunday morning. Delay Sunday evening dose levothyroxine until after blood test on Monday morning. Take Monday evening dose levothyroxine as per normal
vitamin levels
What’s ferritin result?
B12 and folate
As you have B12 injections it’s recommended also to supplement a good quality daily vitamin B complex, one with folate in (not folic acid) may be beneficial.
This can help keep all B vitamins in balance and may help maintain B12 levels between injections
are you taking vitamin B complex?
B vitamins best taken after breakfast
Igennus B complex popular option. Nice small tablets. Most people only find they need one per day. But a few people find it’s not high enough dose and may need separate methyl folate couple times a week
Thorne Basic B recommended vitamin B complex that contains folate, but they are large capsules. (You can tip powder out if can’t swallow capsule) Thorne can be difficult to find at reasonable price, should be around £20-£25. iherb.com often have in stock. Or try ebay
IMPORTANT......If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 5-7 days before ALL BLOOD TESTS , as biotin can falsely affect test results
In week before blood test, when you stop vitamin B complex, you might want to consider taking a separate folate supplement (eg Jarrow methyl folate 400mcg) and continue separate B12
Post discussing how biotin can affect test results
I have Fibro so empathise, however I get very frustrated when I hear stories like yours. In my view CFS is a last resort diagnosis, when everything else has been ruled out but for many doctors it is far too easy to label someone who has joint pain, fatigue, brain fog or any other of a myriad of vague symptoms.
Doctors know there no cure for CFS and very little in the way of treatment either. Its fobs you off and also reveals the ignorance of doctors. I would only accept CFS if I'd been diagnosed by a proper clinic and they'd tested for common conditions that cause CFS type symptoms.
As it is your blood tests revealed low B12 and folate, it shouldnt have been upto you to have these tested. Your GP should have tested them before pronouncing you had CFS.
Unfortunately as many of us with things like CFS, Fibro, depression or anxiety have found once you have that label then it follows you around like a fart in an elevator. And everything gets blamed on it. Its stupid, lazy and actually downright dangerous because you could present with a potentially life threatening problem and it will be blamed on CFS.
It could very well be low FT3 levels, FT3 is the active thyroid hormone that gives us va va voom, energy, zest for life and controls metabolism. It could be you arent on enough Levo or you arent converting it into FT3. Do you have any recent or historic thyroid blood results you can share?
Something that patients often don't realise about getting help from doctors - and this is not just the NHS I'm thinking of, I think this is possibly an almost global problem - is that when doctors tell a patient the result of a blood test is "normal" or "fine" they aren't always using those words in the same way a patient might.
I'll explain by using a made-up example.
Suppose your doctor tests vitamin B12 on three different patients A, B, and C.
Patient A has a result of 200.
Patient B has a result of 500.
Patient C has a result of 800.
The reference range for this B12 test was 200 - 800.
A has a bottom of range result.
B has a mid-range result.
C has a top of range result.
Many doctors will say that all three results are "normal" and don't need any treatment because they are all in range. But in reality the patient who feels best is probably going to be Patient C, and the one who feels worst will be Patient A, and Patient A ought to supplement.
Many of us soon learn that to make progress we have to treat our own mineral and vitamin levels, but that is sometimes easier said than done.
Suppose a patient wants to improve their vitamin B12. Did you know there are four different kinds of vitamin B12 supplement commonly sold? And they aren't all worth taking, or don't all work for everyone i.e. some people can't absorb some forms of B12.
The four different kinds of B12 are cyanocobalamin, hydroxocobalamin, methylcobalamin, and adenosylcobalamin.
You can get more info on each type of B12 in this link :
The NHS has used a reference range for B12 in my own testing of 191 - 663. And yet the optimal B12 level according to the links above is around 1000. I've also read that the Japanese use a reference range of 500 - 1300.
More info about B12 can be found in this link - the British National Formulary - and the B12 dose recommended for dietary deficiency is absolutely ridiculously small.
The above is just to give you an example of why supplementing isn't straightforward in the case of some vitamins and minerals. So, don't go out and spend money on supplements without asking for advice first. You might end up on the wrong type of a supplement and/or the wrong dose, and just end up wasting money.
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Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Test results - I'd welcome any comments please
Vitamin K advice please.
Vit b12 advice please
Vitamin D levels? Can anyone advise me on this result please. Many Thanks.
Anyone have any advice re: vitamin d deficiency?
