Needing some help

[Sweenco]

Can anyone help me understand my symptoms etcI've been feeling like crap for over 5 years,about 5 years ago I was diagnosed with hashimotos/hypothyroidism my tsh was 13 and I had antibodies in the 1000s. I had been on 175 levothyroxine for a number of years without feeling great I was then put on 100 levothyroxine and 10 T3 twice a day my tsh is now suppressed and has been for years again still not felt any better. My b12 has always been in the low 200s and my folate always below 4 my ferritin has always been high. Any way I've just kind of got on with it dragging myself onwards. About 7 weeks ago I started to feel worse again with symptoms including.....

Joint pain

Twitching

Bloating

Tinnitus

Numb outer left thigh

No concentration

No apathy

Nausea

No appetite

Tingling in hands

Knee pain

Numb big toes

Trapped wind

Upper back pressure

Stiff neck/shoulders

Nail ridges

Left stomach pressure

Rib pain

Tingling feeling throughout body

Etc etc

I went back to the doctors and gave blood again for about the millionth time and a stool sample. I was diagnosed with h pylori and my blood results were...

TSH-2.69(0.35-5.0)

T4-12.8(9.0-21.0)

B12-248(200-883)

Folate-3.5(3.1-20.0)

My tsh was at 0.31 last test and I had got my folate up to 18 via pills from the doctor which I was told to stop taking when it went up to 18 its fallen again down to 3.5. I've always thought my b12 was low for years but my doctor disagrees because its always in range. So could I have had the h pylori for all these years and could it be this that is causing me not to absorb b12,folate and levothyroxine etc will these rectify themselves after I have got rid of the h pylori or will I need to self medicate? I'm really lost doctor is no help whatsoever and I'm sick of being sick.

[SeasideSusie Remembering]

Sweenco

My tsh was at 0.31 last test and I had got my folate up to 18 via pills from the doctor which I was told to stop taking when it went up to 18 its fallen again down to 3.5.

This is where doctors disengage their brains. You don't stop taking the supplement, you adjust the dose to a maintenance dose. Your GP will stop prescribing when your result reaches what they are aiming for (usually "somewhere within range") so it would then be up to you to buy your own supplement. When your GP stopped prescribing you should have bought a B Complex containing 400mcg methylfolate.

I've always thought my b12 was low for years but my doctor disagrees because its always in range.

Again, B12 is often misunderstood by doctors. It's not numbers but symptoms that take precedence with B12, so check for signs/symptoms of B12 deficiency here:

b12deficiency.info/signs-an...

b12d.org/submit/document?id=46

If you do then list them to discuss with your GP and ask for testing for B12 deficiency and Pernicious Anaemia. Do not take any B12 supplements or folic acid/folate/B Complex supplements before further testing of B12 as this will mask signs of B12 deficiency and skew results and if you have B12 deficiency is not detected and treated then this could affect your nervous system. B12 deficiency should be treated before starting folic acid because folic acid can sometimes improve your symptoms so much that is masks B12 deficiency.

Many people with a B12 level in the 300s have been found to need B12 injections.

I don't know enough about h pylori to be able to comment, hopefully someone else will pop along.

TSH-2.69(0.35-5.0)

T4-12.8(9.0-21.0)

Did they not test FT3? If you are taking T3 then it's imperative to test FT3 otherwise how do they know if you're taking sufficient or too much?

Your TSH actually tells us you are undermedicated, and when taking T3 one expects to see TSH low or suppressed.

[Sweenco in reply to SeasideSusie]

Thanks for the reply. My tsh was suppressed for a good few years even before t3 was added. But my symptoms all started to get worse after a bad cold and it's the first time for years that my tsh went above 0.