Now what?

[Pingo]

Looking for advice. This year i've had all the symptoms of chronic fatigue syndrome -- specifically, low B12, low thyroid, exhaustion, constant sore throat, headache. I've been treated for B12 and thyroid (thyroxine), self-inject B12, had negative IF test (for what that's worth) and still feel lousy. Loading doses of B12 from GP had me feeling fantastic for 2 months, but then relapsed, and even injecting every other day makes no difference. Same with thyroxine -- felt great for 2 months, now back to square one. Have no idea how often to SI, whether it's helping, whether I'm not absorbing..... B12 and thyroid now registering normal (B12 very high) in blood tests. What next???

[clivealive Forum Support]

Hi Pingo

It is also important that your Folate level is monitored as this is essential to process the B12.

There is a complex interaction between folic acid, vitamin B12 and iron. A deficiency of one may be "masked" by excess of another so the three must always be in balance.

Symptoms of a folate deficiency can include:

symptoms related to anaemia

reduced sense of taste

diarrhoea

numbness and tingling in the feet and hands

muscle weakness

depression

Folic acid works closely with vitamin B12 in making red blood cells and helps iron function properly in the body.

Fortunately you cannot overdose on B12 as any excess to requirement is excreted via your urine.

I am not a medically trained person but I've had P.A. (a form of B12 deficiency) for more than 45 years.

I wish you well

[Pingo in reply to clivealive]

I asked about folate about 6 months ago and the GP said levels were fine.....

[clivealive Forum Support in reply to Pingo]

Might pay to have it checked again together with your Vitamin D which seems to be "flavour of the month" at the moment

[greenbexy in reply to clivealive]

It's that time of year, unfortunately, going to work in the dark and coming home in the dark. My foggy brain can't remember a glorious sunny summer either! (Not up north, anyway!).

[Pingo]

Psychological then? Don't need that on this forum too!

[greenbexy in reply to Pingo]

Definitely not psychological, if vitamin D levels are low you can feel pretty awful, it's the sunshine vitamin! 🌞

[Marz]

Reading through some of your older posts I can see that it has been suggested you obtain your test results with ranges from the Surgery. You are legally entitled to them and it is the only way to monitor your health and to check what has been missed.

I read there was a suggestion of Hashimotos - well that is easy to clarify - they need to test the Anti-bodies TPO & Tg. Possibly just the first one will be done on the NHS. Also you need a FULL Thyroid Profile to include the TSH - FT4 - FT3 - again the NHS may not do the most important one - FT3.

Low Thyroid could explain your fatigue and often accompanies Low B12 and poor absorption. Private Testing at home is available through Thyroid UK - and results by e-mail. It is the only way to have ALL the correct tests done. Did you get your VitD result and the Folate - also Ferritin ?

thyroiduk.org.uk/tuk/testin...

The above link takes you to the companies offering Home Testing. Used by 100's of people on the Thyroid UK Forum in order to have the complete story.

Hope you can soon join up all the dots and find some solutions

[Pingo]

Thanks for that Marz. My Vit D was a bit low and I'm taking supplements daily. Now looking normal. GP says thyroid (with daily thyroxine) now in normal range. But you're right, I should get the latest copies as well. She told me my B12 was low last year too, "but not very low." Obviously low enough..... It's sorting out all the elements that's so difficult, especially with the tests being so inconclusive. Do I have CFS? Do I need B12 weekly? More thyroxine? Seems like it might be an auto-immune syndrome, maybe related to chemo and radiation I had 10 years ago. Whatever the reason, i feel lousy all the time.

[Marz in reply to Pingo]

I live in Crete and here we have to keep all our test results and all medical records. Lots of people walking around with big bags The up-side is we can go anywhere and see anyone we like if appropriate as we have all the information they need.

Did you look at the Private Testing link ? - is that a possibilty ? TSH should 1 or under when on Levo - FT4 and FT3 should be near the top of the range - and anti-bodies in range to rule out Hashimotos. Hashi's is the most common thyroid condition in the world - so YES those pesky anti-bodies must be tested to rule it out ...

Taking control and monitoring things for ourselves is therapeutic as we feel involved and know we are not being fobbed off - with OK - Normal - Fine - none of which is a result - just an opinion.

Happy to help