Advice needed doct thinks i might have fibro

[sbadd]

So long story started b12 injections in jan due to low stores had horendous side effects which all passed except heavy legs and arms which came on after injections, have been through hell since then, saw rheumatologist who thinks my symptons are that of fibro,

Have heaviness in arms legs and back which comes and goes, numb hand on waking and get really sweaty on awaking but not during day, have muscle twitching in random parts of body sometimes in day but mostly at rest, bones been cracking alot and some tender points like under foot when walking, bad fatigue some days ok others not, my iron blood serum dropped within 4 months from normal to deficient but ferreton normal, also have underactive thyroid which on meds 4, all bloods normal including mag, potassium vit d folate etc, have been very stressed since jan after being so ill after starting the injections, doct wants to try me on fluxetone to see if helps but reluctant as dont wont to be on antidepressant as stopped them 3 years back, im still not convinced its fibro as only symptons prior to injections was tiredness, feel since then my body gone crazy? Any advice appreciated

[Marz]

Do you have any results for the thyroid ? Could it be you are under-medicated ? Do you have Hashimotos ? Low B12 is very common with thyroid issues due to poor uptake of nutrients from food. What was your Folate - as that works in an important way with B12 in the body and it is suggested it is taken when supplementing B12. When very low in B12 and injections are given - you can often feel worse before feeling better as your body begins to wake up. How long were you having injections ?

The most important thyroid result is the FT3 and yet rarely tested within the NHS. If you are able to have Private Testing in the comfort of your home then check out Medichecks and Blue Horizon - its the only way to have the correct testing done that is now restricted within the NHS. Uaws by 100's on Thyroid UK her on HU ...

What was your VitD result ? You are entitled to have copies of all your results - and surgeries should now have on-line records and with enhanced access test results can also be viewed.

So how is your low iron being treated ?

[sbadd in reply to Marz]

Only had 6 loading doses b12 in jan as my stores were low but active b12 was ok, PA ruled out and no celiac, vit d tested recently and ok also folate was fine, i do have hashimotis as high antibodies on thyroid, supplements for iron which on 2 daily and after 10 days had jumped from 8.6 to 9.7 so absorbing iron ok, have dropped to one a day as was very bloated and feeling sick, been on them 3 weeks, my ferreton was within range, recent thyroid was tsh 3.34 range 0.40-4.00

[sbadd in reply to sbadd]

Im in Australia

[Marz in reply to sbadd]

I have read that Active B12 is good above 75 ... Testing for PA can be hit and miss and have read of people needing many tests before testing positive. Martyn Hooper is one of those - he is Chairman of the Pernicious Anaemia Society - website of the same title.

Folate is good mid range ...

With having Hashimotos it is possible you are Gluten sensitive rather than a coeliac - check out Dr Izabella Wentz - a Pharmacist who has Hashimotos herself. I do too !

If VitD is measured in ng/L then a result around 60 is considered good. Perhaps a maintenance dose would be appropriate. There are important co-factors when taking VitD - magnesium and VitK2-MK7.

Taking VitC with the iron can help absorption even more !

Your TSH is far too high for someone taking thyroid medication. It is well documented that the level needs to be 1 or under. Also you need to know the amount of T4 in the blood - it is a storage hormone and needs to convert into the Active thyroid hormone T3 - needed in every cell of you body. It is the most important thyroid test and yet rarely done globally - ummmm ! Low T3 can be the cause of many symptoms and be linked to mal-absorption. The most receptors for T3 are in the brain and the second highest are in the lining of the gut/immune system. Both FT4 and FT3 are good around the upper part of the range ... How much T4 are you taking ?

I was diagnosed with Hashimotos at 59 back in 2005 and joined Thyroid UK here on HU over 7 years ago. Due to endless gut surgeries for Crohns I have a B12 issue - you can click onto my username and read my Profile if you wish to check me out

[sbadd in reply to Marz]

T4 was around 18 upper limit 20

Im on 75mg thyroxine

[sbadd in reply to sbadd]

Active b12 was 84

[Marz in reply to sbadd]

That is fine. Was the test before or after the injections ?

[sbadd in reply to Marz]

Before

[Marz in reply to sbadd]

Still no FT3 result ?? It is possible your conversion will be poor due to low iron - and other nutrients mentioned The T4 is a storage hormone doing very little in the body - so it is important to know what the T3 level is. If low then there will not be enough to go around the body. Every one of the trillions and trillions of cells in the body has a receptor for T3 - so they are there for a reason. If your T3 level is low in the blood then it will be even lower in the cells - where it is needed ...

[sbadd in reply to Marz]

No T3 results

[Marz in reply to sbadd]

When was your last T4 increase ? 75 mcg is a low dose. Can you get the T3 tested privately ? Best to rule out low thyroid before having a Fibro diagnosis as it seems from reading here that members have every other symptom blamed on their fibro ..

[sbadd in reply to Marz]

Been on the 75mg for couple years, im wondering whether i needed b12 injections to start with as have messed me up, looking into getting proper full thyroid test as my requests keep going on deaf ears, i had horendous side effects from injections which im told body can take up to 6 months to recover, its been 5, hence why reluctant to take antidepressant and put more crap into my body?

[Marz in reply to sbadd]

Depression can be linked to low B12 - low VitD & Low Thyroid as well as gut issues. Remember the brain has more receptors for T3 than any other part of the body. Lots of research making the connections with gut and the brain ...

On the PAS Forun here on HU they often mention how you feel worse before you feel better with B12 injections. Lots of healing to be done when you have been low for a long time ...

[sbadd in reply to Marz]

Thankyou for your advice been very helpful