update on my post 20 days ago:'Can someone translate what tests will be done please.

[sharonwei]

I had my blood tests and saw doc day before yesterday.

He had obviously read up on P.a.

He said to me ' you were right' meaning that i was right to have self injected.

He said that i should be dead. My cholesterol is lev 9. He said there is no way that is diet. But has to be hereditory. He had never seen such a level.

Also , my vit D was incredibly low, tho i told him i take it daily and have good diet and get outside daily.

He said that at this level i have to have a boost of vit d for couple weeks. Serious lack of Vit D causes tiredness bone pain and other things.

He said the only reason that I am alive is because of intervention and my intelligence and my low blood pressure. Meaning yes i was right to self inject and take vits daily. Though, he didnt say the exact words , he made it plain.

I now have BIO-VITAMIN D3 20,000 for vit d

Atorvastatin for Cholesterol

AND, because i took time out and really emphasised the nerve surges, tingling throughout body, and numb feet and hands,,, without question he prescribed me : Gabapentin Activis 100 mg. and said he can go up from that if i need it.

No mention of my self injecting except the cloaked praise to me as above that basically meant i had saved my own life.

It was a shock to know i was supposed to be dead. (stroke or heart attack).

BUT, i got proper treatment and see him in a month.

I FOUND A GOOD DOC..............................

[sharonwei]

just adding to the above.

I told him i had been very healthy over all till the P, A, emerged, (tho of course i was exhausted and othe br things by the time it was found out). He said that other problems arise when you have P.A. ( WOW). And that the b12 can only deal with so much , spread out trying to fix things. What i understood from that is that though ive been self injecting, unknown to me i had these other problems ( which along with others can rise when you have P.A) and the B12 was getting used up quickly and not necesarily where i wanted it to work. I could'nt understand why my nerve surges and numbness werent improving.

I can tell when the b12 is flagging in my body by looking in the mirror. My gums go a heathy pink when i first have it , then they go to white when its flagging.

He was the 3rd doc in the practice i had tried to get any real help with, and tho initially he said what i was doing was self abuse, his tune has totally changed. The guy obviously read up on stuff, and that is so great, as others would NOT.

The hope is that when the cholesterol and vit d are sorted out, im hoping the b12 will actually stop the progression of nerve problems and maybe even improve that.

[Gambit62 Administrator]

Gabapentin is known to affect the uptake and hence reabsorption of B12 so might be worth looking at other possibilities - though you may find that getting B12 levels right means that some of the pain goes away.

Glad that you managed to get your GP to listen.

[sharonwei in reply to Gambit62]

Im injecting about half a mil every other day. The nerve surges and tingling destroy my days. Any suggestion?

[Gambit62 Administrator in reply to sharonwei]

It can take a while for things to sort themselves out - particularly where nerve damage is involved.

If you are using hydroxocobalamin you might want to consider trying methyl as people tend to find that works better for them with nerve signal problem. You also need to make sure that you have good folate(B9) levels so your body can metabolise B12 properly.

It might be worth discussing with your GP whether there might be an alternative to Gabapentin that doesn't affect B12 - though on one level having an absorption and hence reabsorption problem may mean that the effect of Gabapentin isn't really worth worrying about.

[sharonwei in reply to Gambit62]

hi i take folate every day and in blood test result it was good:

serum folate 20.0 ng/ml its over range 3.10 - 17.50ng/ml. Doc knows i suppliment.

[Coastwalker]

Hi sharonwei,

Bear in mind that B12 mimics hypothyroidism (low thyroid)

Low thyroid and cholesterol can have an inverse effect on each other.

I do know that if low thyroid (Hypothyroidism) is treated, your cholesterol can go down.

Once treated your thyroid levels go up as your Cholesterol levels go down.

Google Low Thyroid and Cholesterol.

B12 and hypothyroidism often go hand in hand as does vitamin deficiencies, so be careful you don't have a thyroid problem alongside sharonwei.

[sharonwei in reply to Coastwalker]

Hi Coastwalker.

I barely understand that today, but i kind of get the idea. i will write it down. I see the doc in 4 weeks to have bloods taken again.If my Cholesterol goes down cos of the statin, surely if i have hyothyroidism that will rise up to be seen? Sorry bit wooly.

[Marz in reply to sharonwei]

Raised Cholesterol is a symptom of Hypothyroidism. In days gone by before blood tests - people were assumed to have an under-active thyroid when cholesterol was raised. Long before the dreaded Statins came into being. When Hypo everything slows down including the clearing of cholesterol from the liver. Taking Statins is so BAD for your VitD levels and will add to the problem. When the UVB rays hit your skin the uptake only happens with cholesterol in the skin - so it is so vital for our long term health.

Please look up Dr Malcolm Kendrick - he wrote The Cholesterol Con - and has a website where he posts blogs - very interesting. Cholesterol is needed in the body - the brain is around 25% cholesterol and it is needed in the formation of ALL the hormones.

drmalcolmkendrick.org/2015/...

Did your Doc prescribe CoQ10 - that is something that is also suppressed when you take Statins. CoQ10 is like a battery in every one of the cells in the body. Without it problems begin. There are other ways of reducing cholesterol - I found when my thyroid was optimally treated - and the B12 was treated the cholesterol went down.

These are the tests you need - TSH - FT4 - FT3 - Anti-TPO - all for the thyroid. Also ask for Ferritin - Folate - Iron. When treating B12 deficiency it is important to take a good B Complex to keep all the B's in balance.

As you know PA is auto-immune and so is Hashimotos - the most common thyroid condition world-wide.

Do you have family members with raised cholesterol ? You also need to read up on Homocysteine - it is often raised when B12 is low - and when treated it reduces along with the cholesterol

[sharonwei]

I have suffered so much as i know others have and do, im not up to pushing a reasonable doc at this time . I know that sounds weak, but i guess i am at this time. I can increase the b12 to daily , as i have done that before. Its still all a bit of a shock to hear that i should be dead because of the cholesterol. My mother had cholesterol probs, was on statins. Died of a brain stroke. I cant take in the answers properly at this time. So i will re read when i feel able. Thankyou for the points you raise tho i cant take it in right now i will try again later.

[sharonwei]

looking at bloods,(fasting) he did do TSH which is normal and T4 normal cant see anything else familiar like that.

He did full blood count. and other things.

[Coastwalker in reply to sharonwei]

Often 'normal' thyroid bloods are not 'normal'

Many patients get overlooked if their bloods are showing 'low' within range, (a bit like it is with B12 deficiency or PA)

You can still have a thyroid problem (or B12/PA problem) even though your thyroid (or B12/PA) bloods are showing 'within' the normal lab range.

I always ask for a printout of all my blood results and for my family members too and pop them up on Thyroid Uk for others to see, (I am a member on many HU community sites.)

[sharonwei]

For the first time i asked for blood test report and doc printed it off for me ,

[Secondchance]

Hi I am glad things are starting to come together for you. I am just wondering why your GP isn't prescribing the B12?

[sharonwei in reply to Secondchance]

He was before he found out i was self injecting. Look at the first post i made. 'Can someone translate what tests will be done please'. Things are rarely straightforward.

[sharonwei]

Well after trying the Gabapentin for a day and half i stopped. First it does take away pain or irritation but you can still feel the jumping etc, nerves going. Secondly my nerve surges, jumping etc. normally occur on and off and to dif degrees and it seemed to stay full on. Thirdly and most importantly, since i am injecting hydroxy alt days, i was fully aware of how fast it drained my b12 . I stopped it, though it does say on box that you should come off those gradually, i had only just started and had a day of extreme nerve surging (awful). But ok now. Thanks all for the advise on that!! Though of course i tried them.