Confused

As previously posted my daughter was diagnosed with ME about 18 years ago, she takes Levothyroxine 125mcgs daily, but is permanently tired. She does work but only because she lives at hone where most of her meals are prepared for her as she goes straight to bed. Her diet is poor, as I think she is just too tired to muster up the confidence and strength to diet.

On 26/2/17

Her serum free T4 was 13.6. (11-23)

TSH was 0.14 (0.3-5.5)

Serum free triiodothyronine 6.1 (4.1-7.9)

On 27/3/17

Her Vitamin D was 49 nmo/L (31-50= Insufficient) - she has been taking Vitamin D 2.5 daily for 3 months and 1.0 fir the previous 3 months

Vitamin B12 241 NG21/L (197-771)

Serum folate 3.6 ug/L (4.6-18.7) she now does take folic acid

Any ideas as to why she suffers with extreme fatigue?

41 years old, lives at home no friends as doesn't socialise after work because of fatigue

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11 Replies

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  • Her vitamin B12 and folate levels are too low. Doctors won't help with this so she needs to supplement herself.

    Likewise her vitamin D needs to be near 100.

    Do you have a iron - both ferritin and haemoglobin test results with ranges for her? If not she needs them done. Some labs have ferritin range that goes down to 7. If you ferritin result is low in the range however optimal you other hormones and vitamins you will feel terrible.

  • Self medicate B12, can we buy this OTC?

    Is taking folic acid for 3 months and then has to have another test

    HBA1c was 31 mmol/mol

    Serum Ferritin was 114 ug/L (13-150)

  • Yep.

    However it is best to buy it from Amazon and buy methylcobalamin lozenges as they are better absorbed.

  • All vitamins and iron can be brought of prescription. You can get some of them in pharmacies but often they are in combinations you don't want e.g. vitamin D and calcium or you have to get them from the pharmacist behind the counter. However you should ALWAYS be tested for iron (ferritin and haemoglobin), vitamin B12, vitamin D and folate before taking them.

    In the case of iron and vitamin D you can over dose on them as they are stored in the body. This is why you have to test them periodically while supplementing to see you haven't taken too much.

    In the case of vitamin B12 and folate if you take them before testing if you are deficient the tests are distorted. Once you start taking vitamin B12 the only testing that works to check on absorption is a full blood count or an active B12 test. The reason for that is serum/normal blood vitamin B12 tests will just show you are supplementing vitamin B12.

  • Ferritin level looks fine. Is there a haemoglobin also called "haemoglobin estimate" or "haemoglobin est" result?*

    The HB1AC result is to check whether she has type 2 diabetes. She doesn't.

    *Sometimes you can have high ferritin and low haemoglobin, or vice versa hence it's good to check both levels.

    Also next time, even though it is a pain, just type out all the blood test results. You can put them in a text editor like notepad first, saving the file as you go along then copy and paste them into a forum post.

  • Thanks for the comments and will do, there is nothing HB est

  • Ok then at the moment the mean causes of her fatigue seem to be low B12 and low vitamin D.

    The vitamin B12 is the most urgent so she should start taking supplements for that asap.

    Then if she feels ok after a week she should add the higher dose vitamin D in then after that add the magnesium and vitamin K2 in.

    That way if she gets any adverse reactions from the fillers - which can happen even though it is rare - she will know what caused it.

  • I am sorry your daughter has had to live like a recluse because she is so unwell, despite taking levothyroxine. Fatigue is a clinical symptom of hypothyriodism.

    Was her blood test taken at the very earliest possible, fasting (she can drink water)? Did she allow a gap of 24 hours between levo and the test and take afterwards? This helps to avoid the doctor adjusting dose unnecessarily.

    I will wait till this question is answered.

    Her B12 is very low and it is now recommended, to prevent neurological damage later in life, it must be around 1,000. Supplements of sublingual B12 tabelts which dissolve under tongue and is absorbed.

    Does she have problems with her stomach?

  • For vitamin D she should be taking a minimum of 5,000IU per day. If she does this for 6-8 weeks then has a test - which you will have to do privately it should increase her vitamin D levels. She needs to take the vitamin D while eating a fatty meal and 4 hours away from levo.

    People with chronic illnesses tend to find they need higher vitamin D levels than the rest of the population.

    Your GP will not provide you with such supplements as she is near the lab adequate range so you need to buy them from Amazon.

    In addition she needs to take vitamin K2-MK7 and magnesium in a bio-available from with the vitamin D to make sure the vitamin D goes where it is needed to the bones.

    Magnesium should be something like magnesium citrate tablets, magnesium oil that you rub into the skin or bathing in epsom salts.

    Oh and you can use City Assays for the vitamin D test. They are an NHS lab based in the West Midlands who do finger prick tests to the public.

  • Thankyou, I have researched the Vitamin K option, and it looked interesting to start with, but my daughter has Factor V Leiden which causes blood clots so best not to pursue that line

  • I sympathise as could barely get out of bed myself a few years ago. Many autoimmne people find going gluten free removes many issues especially exhaustion and tiredness as you will see on many posts on here. I also had a low appetite until I gave it up so do understand and had an autoimmune sleep disorder. well worth a try for three months to see if anything improves.

    Hope she gets better soon :-)

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