Need advice again!

[skimmy]

For the past few months my energy levels have gone right down, joint pains are back and feel so low and lots of sleep problems...

I've just had some test results which I need help with - just want to feel healthy again..

Im 45 and weight 8 stone.

!serum cholesterol - 7.0 mmol/L <4.00 mmol/L

Triglycerides - 0.9 " <1.7 "

HDL - 2.1 " >1.2 "

!LDL - 4.5 " < 2.00

Total cholesterol: HDL ratio 3.3

Note: pls book with nurse for qrisk in light of increasing chol then d/w pt statin..

Serum testosterone - 0.5 nmol/L 0.20 - 1.70 nmol/L

Red blood cell distribute width - 11.7 11.80 - 14.80

MCV - 80.1fl 80.00 - 98.00fl

MCH - 28.5pg 27.00 - 32.00pg

MCHC - 355g/L 320.00 - 360.00g/L

TSh - 2.03mu/L 0.20 - 5.00mu/L

Free T4 - 18.8pmol/L 10.00 - 26.00pmol/L

I asked for T3 but the doctor advised they don't test for it and she said she was going to test for ferritin but no result.. The last result was july 2013 24ng/mL 13 - 150ng/ml.

[Clutter]

Skimmy, Ask for an increase in Levothyroxine. 50mcg is a very low dose and an increase will bring your TSH down and improve your FT4. It may also reduce your cholesterol. Most people are comfortable with TSH just above or below 1.0. Scroll down to Guidelines and Treatment Options to read Dr. A. Toft's comments in Pulse Magazine thyroiduk.org.uk/tuk/about_... Email [e-mail] if you want a copy of the article to show your GP.

Ferritin is optimal 70-90 so push for another test. Ask too, for vitamin D, B12 and folate to be tested as they're often low/deficient in hypothyroid patients and can cause musculoskeletal pain, fatigue and low mood.

[skimmy in reply to Clutter]

April 2013 when I was diagnosed my cholesterol was 5.8 then I was put on 25 mcg it went upto 6.4 and then increased to 50 mcg it went down to 6 so I have been on this dosage since September 2014 and now its increased to 7. I am quite worried and instead of the nurse I have made an appointment for the doctor but won't see her until 20/10. I don't eat meat or fatty food so I know its not my diet. I need to be armed with information so i'm not pushed into statins.

[Angel_of_the_North in reply to skimmy]

Meat and fatty foods have been shown NOT to affect cholesterol levels, although sugar does. Don't take statins (without doing a lot of research first). There's no evidence that they prevent heart disease (esp in women) in anyone who hasn't already had a heart attack - in fact they may cause heart problems as they cause muscle wasting (and the heart is a muscle). Statistics show that the death rate is higher in older people with low cholesterol than in those with high cholesterol.

[Clutter in reply to skimmy]

Skimmy, If you don't eat meat and fish you should supplement B12. B12 is only obtained from meat and fish and can't be obtained from plant food.

Research statins carefully before agreeing to take them. Muscle and joint pain are common side effects.

[shaws in reply to skimmy]

You've been on a starting dose too long. Usually 50mcg is a starting dose with an increase in around 4 to 6 weeks. Some doctors make a big mistake by keeping their patients 'within range' for the TSH. It is wrong as you will see when you read question 6 of the article Clutter suggested. This is another link and if you cursor to the date November 20, 2002 to read the answer. We have to read and learn so much, you wouldn't believe, if we are to recover our health. Statins are definitely out, as cholesterol is on of many hypothyroid clinical symptoms which should reduce when you are on sufficient medication for you to feel well and normal.

web.archive.org/web/2010103...

[skimmy in reply to shaws]

Thankyou shaws for this - my eyesight is getting worse all the time and words are just too fuzzy to read. I'll add this to my list of symptoms! To increase from 25 to 50 was hard enough but I have a new doctor so hopefully she will listen to me.

[ukangell]

Looking at Mcv and mch I'd say b12 could be problematic.

[skimmy in reply to ukangell]

July 2013 my B12 was 484 pg/mL range normal >183. Also my red blood cell width is just below range but referred to as ok on the report. Im not supplementing at the moment, should I be?

[Angel_of_the_North in reply to skimmy]

I think so. Under 500 is the level at which you can experience neurological damage.

[helvella in reply to skimmy]

"red blood cell width" - is actually the red blood cell distribution width. That is, a measure of the range of red blood cell sizes. A high RDW is often a feature of two concurrent issues - e.g. iron-deficiency and pernicious anaemia. What do you mean by "just below the range"?

Rod

[skimmy in reply to helvella]

Hi Rod thanks for replying. On my recent blood count it states my Red blood cell distribute width - 11.7 range 11.80 - 14.80 Just outside normal range - ok .....

a year ago my serum Ferritin 24 ng/mL normal range 13-150.

[Ella78 in reply to ukangell]

Hi why would B12 be problematic? My MCV and MCH are both at the sort of levels as Skimmy's is but my B12 is in range.

[ukangell in reply to Ella78]

A high level of one and a lower level of another (Mcv and mch) can mean B12 problems as in not enough b12 is working. They don't need to drop below or above lab range either.

I would hazard a guess at stating that with being on metformin myself my B12 might look ok (due to injections) but as metformin stops absorption it could cause a massive problem for me. This is why you look at:-

B12, folate, iron, mch, Mcv, RBC.

Also a high range of folate could mask potential B12 problems too. All of these must be taken into account.

[Ella78 in reply to ukangell]

Thanks. I had no idea about any of this. The GPs don't say anything to me.

Well, my results are :

Vitamin B12 - 359 (180-900)

Folate - 4.7 (4.1-18.7)

Ferritin (not iron) - 28 - Normal - No action needed (30-400)

MCH - 28.8 (27-32)

MCV - 83.6 (83-100)

RBC - 4.76 (3.80-4.80)

I've been suggested to get B12 as my level is low so perhaps B12 would be a problem for me, too.

[Hidden]

You should get your rheumatoid factor level checked and your ESR and CRP checked to see if your joint pain and fatigue could be inflammatory arthritis of some sort. I have RA which makes people very unwell as well as causing joint/ tendon pain and stiffness. Also your B12 and Vitamin D levels need to be in normal range.

I was interested to read the view that B12 level has to be above 500 because mine was 360 I think and my GP said it was fine. However I wasn't satisfied by this as I have severe peripheral neuropathy that is unaccounted for to date - so have been taking B12 sublingually for 6 months but it has made no difference at all yet

[shaws in reply to Hidden]

I am sorry you haven't felt a bit better with B12 sublingual. Are you taking methylcobalamin or cyanocobalamin B12.

These are two videos which gives some information.

healthunlocked.com/thyroidu...

healthunlocked.com/thyroidu....

[Hidden in reply to shaws]

Thanks Shaws - I've been taking the one recommended on here once by Hampster. Even though my serum B12 level was 370 from recollection (I'm holidaying in the States just now!) I don't think this is low enough to cause intense peripheral neuropathy in all extremities that radiates out into my limbs with spasms of extreme pain plus dizziness is it? If it was surely my doctors would have picked up on this or perhaps a neurologist will? I know the normal levels differ from country to country and under 500 is deficient in Japan.

But I have RA too so this or other autoimmunity are thought to be more likely candidates. I didn't bother to tell GP that I've been taking B12 tablets either as don't want them thinking me health obsessed!

[shaws in reply to Hidden]

Well, I am very sorry to put a further dent in the knowledge of doctors. I, too have PA and since diagnosed 20 years ago (during a test for something else) I have been on 3 monthly injections. B12 levels fine. I have never had symptoms related to P.A. About 3 years ago my B12 level was 385 (usually around the 1,000 to 2,000) and queried this but I was told it was nothing to worry about as I was 'in the normal range' (where have we heard that before! I supplemented anyway with sublingual B12.

In the summer I began to get symptoms which I thought could be PA related and saw a GP last week (not usual one) and asked to be referred to a neurologist or haematologist. She said that wouldn't be necessary as all they would do is check my B12 serum level. I said what about these symptoms? No answer.

I spoke today with Martyn Hooper of the PAS (see my own GP tomorrow) and he says I have neurological symptoms of B12 deficiency and should get injections every day until symptoms go and thereafter have injections every two months. So I suggest you point your GP to your symptoms and ask her/him to refer to the BNF for neurological symptoms of P.A. or B12 deficiency.

[Hidden in reply to shaws]

Thanks for this Shaws. I am absolutely certain that my gp will not agree to give me B12 injections. But I am seeing a neurologist at the end of next month and will mention this to him.

I strongly suspect he will diagnose me with idiopathic peripheral neuropathy or small fiber neuropathy as part of my autoimmune presentation. I know that the term idiopathic won't satisfy me at all so if this happens I will push hard for them to give me B12 injections to see what happens. I am increasingly suffering from a strange dizziness where I feel I might fall over (the ground might give way) and my moods are very erratic. As I'm hypothyroid and have Rheumatoid Arthritis it seems to me very likely that whatever is affecting me - that it is autoimune related and I feel strongly that sero negative Lupus, Sjogrens and PA should all be in the frame as potential causes.

Did the B12 injections improve things a lot for you?

[shaws in reply to Hidden]

Well, twitchytoes, just back from my GP and he absolutely refutes anything Martyn Hooper said to me, i.e. my B12 blood is in middle of range and I get 3 months injections, so there is no probablity that whatever I have is PA related. In other words because I am medicated I couldn't get symptoms connected to it.

I am going to the Conference and will speak to Martyn there. My GP did a lot of blood tests, so he will give me the results and his opinion. He said it could be due to low folic acid etc., so let's hope so.

The problem with us with autoimmune conditions, I think we are quite in tune that when anything 'different' pops up we want to know:-

1: What is it?

2. Remedies

My daughter has RA and my sister so autoimmunity is within our family too.

I hope you get some satisfaction but they are maybe counting the 'cost' of these tests, etc.

[Hidden in reply to shaws]

Sorry learn about the refuting. Mine is convinced mine is autoimmune related because my inflammatory markers are always between high and very high despite few signs of joint swelling or joint pain these days.so something is creating active inflammation. But my rheumatologist is the problem because he won't acknowledge anything other than synovial swelling in my joints. I'm extremely drug intollerent. It would be so straight forward to have PA and just have injections rather than powerful drugs! Anyway thanks for your help. Tx

[ukangell in reply to Hidden]

You could pay privately for an active B12 blood test. Drs do serum test but this only shows up a total amount of B12 not what's being used by the body.

[Hidden in reply to ukangell]

Thanks. I paid to have my b12 tested more thoroughly last year when these neuropathic symptoms started. I learnt on here that because I was taking high quantities of folic acid to compensate for the RA drug - my serum B12 levels would be compromised. The tests revealed not a lot as both were within normal range. I will just have to hope the neurologist can see beyond the obvious - unlike my rheumatologist!

[shaws in reply to Hidden]

Preferably, our B12 should be towards the upper range and not below the middle of the range.

I had an Active B12 done at St Thomas' Hospital in London (depends where you live of course) there was no appointment just went to Phlebotomy Dept, (no queue) paid £18. Obviously, the B12 Active is different from serum and mine was 90 and complete is 70, so I was 20 points above. That was last year.

You can use B12 sublingual methylcobalamin, which are probably as good as injections. I am going to get the higher dose this time. You cannot oversrdose as excess is excreted in urine. Martyn Hooper says in his book that even with injections our body will only absorb what it needs and excretes most of it within 24 hours and probably that's why some find they need it more often than every 3 months.

[ukangell in reply to Hidden]

You must make sure your folate level is good to aid absorption and that your iron is ok too.

[Hidden in reply to ukangell]

Both have been tested often and both are okay thanks.

[skimmy]

Thanks for all the replies. I will get further tests done and then will supplement whatever the results are. Just one more thing - my Tpo has been positive since first diagnosed and has always been above 1000 when the range goes unto 150. It is now 1205 and I'm a bit concerned that it is not decreasing even though I have been on thyroxine for over a year now. What should I do to reduce the antibodies so they don't cause any more damage.