Not sure whether to ask GP for more tests

[tmoxon]

Hi I posted the question below on the PAS page and someone contacted me to advise it might be a good idea to post it on this page along with my daughters blood test results

I have a lot of blood results so not sure which ones to post but her Thyroid stimulating hormone result was 1.1 ref range 0.5-4.7

Hi Just wondering whether anyone can advise the best course of action for my 28 year old daughter please.

She was diagnosed as having ME when 15 and for many years before this used to complain about simply “not feeling very well”. Her main symptoms in the last 5 years are feeling cold, numb hands and feet, headaches, unsteady on her feet, painful joints (tested for RA), her memory and concentration deteriorating and she sometimes also has a strange sensation of the skin on her arm or thigh feeling as though it is sunburnt.

Last year they thought she might have MS and she underwent a scan and a visual test which luckily was negative, then Myasthenia gravis was suspected and again this test was negative. She has also been tested for Coeliac Disease which I have and again negative, although a gluten free diet has improved her health.

Last year we asked the GP to test her vitB12 and it came back as 227, the GP started giving her injections, we asked if she could have these once a month due to the neurological issues she has and she has been having these. Her vitamin D was below normal and was prescribed Adcal D3

My question is should the GP do further tests, we have been waiting to see if the results for MS and Myasthenia Gravis came back with anything and now we can rule these out just wondering whether she should have the tests for PA or are we better off just leaving well alone due to her receiving the injections?

Any guidance anyone can provide would be appreciated

Thanks

[Marz]

Is your daughter taking Folic Acid with her B12 - both are needed as they work together. What were her results for Iron - Ferritin - Folate ? Maybe there needs a little more investigation for PA. Her TSH is low enough but what were the FT4 and FT3 - they would give you a better idea of what is going on. T3 is the only ACTIVE hormone from the thyroid and needed in every cell of the body. Many people with ME symptoms have LOW T3.

Taking Adcal is possibly not giving her enough VitD as I believe there is only 800 IU's per capsule and x 2 gives her only 1600 per day. grassrootshealth.net gives you a chart that informs you the dose required to bring you up to optimal. eg if the result is 30 ng/ml then she will need 3000 IU's daily. Start low and slow.... You may have to convert the result you have into ng/ml by dividing it by 2.5 to match the measurement on the website. It's Canadian.

b12deficiency.info/signs-an...

The above site hopefully will give you more information about the required tests for PA.

[silverfox7 in reply to Marz]

My AdCal is only 400 IU per tablet but I started on mine after a booster course of D3. I know of someone else who started on AdCal and its not made any significant difference! My readings were in 20's at first testing, high 80's at end of booster and low 90's some time after maintenance so 400 IU x2 daily is maintaining well. I have seen others on here taking a much higher maintenance dose than I so I should get it tested and if still low ask for a booster-I took one 20,000 IU dose of D3 for 12 weeks Make sure it is D3 and not D2

[Marz in reply to silverfox7]

Am assuming your result was in nmol/L. There is a chart on grassrootshealth.net which indicates 60 as being optimal That is in ng/mL - so you would have to divide your result by 2.5 to find where you are and how much D you need to take....

[silverfox7 in reply to Marz]

Not at home to actually look at figures and ranges but I do remember 50 was good but several have mentioned on here to get it up to 90 or about. Thanks for the link though.

[silverfox7 in reply to silverfox7]

Just sent a message home-it is in ng/mL

[Marz in reply to silverfox7]

In that case 60 is considered optimal on the website I gave you above ! Many of the results quoted on here are in the other measurement - nmol/L. vitamindcouncil.org is another excellent site where you sign up for a Newsletter so you can keep up to date with the latest research on VitD and know more than your Doc

[tmoxon in reply to silverfox7]

Hi I spoke to a dietician at at GF food fair on Saturday and she said that it should be 75

[Marz in reply to tmoxon]

take a look at this site - grassrootshealth.net - there is a chart. A Canadian website full of good information. Was the dietician talking ng or nmol ?

[tmoxon in reply to silverfox7]

Hi silverfox yes our adcal is the same as yours, cant say i enjoy them much either, we get the tutti fruity flavour, I am hoping to catch some sun this weekend to top up my Vit D, thanks for your help

[silverfox7 in reply to tmoxon]

Snap in more ways than one! I usually take my two together or else I forget the second one! It has certInly helped with the aches though. Think I rattle these days! I have OA and had a new hip a few years ago so tended to put any aches down to that. Had a slight rise since going on AdCal from 87 to 90 so I expect that's good for the winter months.

[tmoxon in reply to silverfox7]

yes i also take effervescent zinc 3 times a day, the thing i don't like is that the iron and the adcal say to avoid tea ( which I like to have all day) and the adcal also take with food but not bananas, bananas are great if you have CD as they are so handy for a snack and naturally gf and the iron on an empty stomach!!! Its not easy trying to accommodate them all. Glad to hear that you are feeling better anyway and not aching as much

[silverfox7 in reply to tmoxon]

The bananas bit is new to me! I wonder why. I don't drink much other than water and an occasional coffee. I went off them when pregnant and again when menopausal and decided I was less crabby though that could well have been for other reasons I suppose. My B complex was delivered this morning. So think almost a full set now-sure it isn't but it feels like it! Such a wonderful site to gain a wealth of info on. I wish I few GP's would read. Not only would they learn something but see how wretched this illness can make you feel and how debilitating. Good to talk with you

[tmoxon in reply to silverfox7]

Hi Again there are a number of foods listed on the medicine leaflet, here is what it says

Adcal-D3 with food

This medicine should not be taken within 2 hours of eating foods rich in oxalic acid (e.g. spinach and rhubarb), phosphate (e.g. bananas), or phytic acid (e.g. whole cereals).

Here is a link to the website xpil.medicines.org.uk/viewp...

If you look up the various types of foods mentioned there are quite a few. It doesn't say whether the foods are harmful when taken with the medicine or whether they stop the tablets from being absorbed as much as they would normally be.

I have looked up oxalic acid foods and by the looks of it they can cause kidney stones so i am guessing the calcium might cause stones. Looking into the other foods, by the time you are finished you will be very lucky to find anything to eat.

[silverfox7 in reply to tmoxon]

I always read the info but can't remember any of this! I have enough problem with food-allergy to Brassicas though can't always stick to it. Love rhubarb. I was just thinking of moving my Levo from night to morning as my son prefers eating late but not too sure now-will gave a read and thank you for drawing my attention to it!

[tmoxon]

Hi Marz thank you for taking the time to help

I have just had a look through her test results and cannot see anything regarding the FT4 or FT3, sorry but i know very little about these tests, are these the ones that are used to determine Thyroid disease and would they only be asked for if the TSH test had been out of range?

I know when I was feeling unwell someone on the Coeliac site suggested I ask about thyroid tests and they said the main test ( i assume the TSH ) GP's do is not very good, I went and asked a GP at our surgery who I was told had worked in a thyroid clinic and he promptly told me that the test was perfectly adequate.

The only other test i can see relating to the thyroid is a parathyroid test which is 44 range 7 - 53.

Her serum folate is 6.100ug/L with no range so have no idea of what this is supposed to be

Thanks for the links to the websites i will have a look at them

[Marz in reply to tmoxon]

TSH is Thyroid Stimulating Hormone produced by the Pituitary Gland and tells the thyroid to produce T4 ( a storage hormone ). The T4 then converts into the ACTIVE thyroid hormone T3. Many GP's resist the full testing as the T3 is more expensive I believe. Also labs often do not test if the TSH is in range. Perhaps you may consider having the tests done privately through Thyroid UK and obtain a discount.

Not sure about the folate as I think our ranges are different here in Crete....

When you want someone to read your reply - click onto the yellow box saying Reply to this....

Just keep asking questions and there will always be someone to help....

[tmoxon in reply to Marz]

Thanks for clarifying this for me, I will ask my daughter to ask about the other tests, do you know whether it is possible to still have thyroid issues with a TSH of 1.1 ? These autoimmune diseases seem to be hard to get to the bottom of as a lot have the same sort of symptoms. Thanks again for your help, by the way our Adcal is the 400 one

[Marz in reply to tmoxon]

For a clearer picture I would tell your daughter to ask for the following tests.... TSH - FT4 - FT3 - Anti-TPO - Anti-Tg - Ferritin - Iron - VitD. Is it possible to have them done privately.... ? Take a look at the main Thyroid UK website where you will learn so many valuable things about thyroid....the testing - understanding the results etc. Yes you can have a thyroid issue with a low TSH - especially if it is Hashimotos in which case she may swing from over to under....

b12deficiency.info/signs-an...

The above site should give you more guidance about additional testing for B12. In Japan the bottom of the range is 500 - 1300 UK and elsewhere is 180 - 900 approx. However experts say that we need a reading of 1000 to prevent cognitive decline and anything under 450 can cause neurological symptoms. Only 20% of the B12 in the blood result is available at a cellular level - so in your daughters case that is VERY low indeed. I would pursue the B12/PA route quite seriously. All information on the above website.

Good Luck - and keep asking questions ....

Am confused is it you taking the Adcal or is it your daughter ?

[tmoxon in reply to Marz]

Hi Marz thank you for the list of tests that is really helpful, I will print them out and see if the doctors will do the them, we can ask. Any idea how much private tests cost.

Sorry if I confused you, we are both on vit b 12 my score was 256 although my daughter gets the injections monthly, mine are 3 monthly and both on Adcal with a score of 42/43

[Marz in reply to tmoxon]

Please read the website about B12 when you have the time and energy. 3-monthly is so remiss. It's all about cutting costs as years ago it was monthly then two-monthly and now three-monthly. Costing more money in the long run as people become so ill. I see hampster1 has popped along to assist. She really is VERY good with her knowledge and experience with B12/PA and has been of great help to me. Most things I quote here have been posted by her....

[tmoxon in reply to Marz]

Hi Marz thank you I have been on the B12 site, and on the other Dr Chandy one, the BBC video of the young diagnosed with MS is testament to the fact that more research needs to be done in the NHS, they are always very shortsighted, instead of preventing all of these illnesses and looking into the cause there doesn't seem to be the common sense approach of different departments pulling together and working as a team and basically listening to the patient, in the end as you say it costs far more money. Yes Hamster1 helped me before on the PAS site. You are all very helpful.

[gabkad in reply to Marz]

True Marz. My problem is with the hypothalamus/pituitary and TSH is always low even if fT4 and fT3 are both low. My GP was only testing TSH telling me 'you know you have chronic fatigue syndrome'. I was having cardiac myxedema. (very unpleasant) GPs are too busy looking at computer screens to notice that the patient's face is also myxedematous. The cortisol is low too.

Something like this may be less common than straight forward hypothyroidism, but the thing is, it does happen and without proper testing, the origin of the problem is not discovered.

[Marz in reply to gabkad]

Of course - you are so right. It is very complicated. My approach is usually one step at a time when someone is just beginning the journey...and I try not to over complicate things. When we can see all the available results then people here are able to advise better. I know that having adrenal issues can cause everything to register low - as per drrind.com

Am sure your post will prove very helpful in alerting us all....thank you.

[Hidden in reply to tmoxon]

I think her folate is low. The bottom of the range is usually about 3 or 4, but people on B12 injections usually need much more - top quarter of the range. Personally I would try her on 5mg folic acid daily for up to 4 months to see if it helps, then reduce to a maintenance dose. The GP can prescribe this, or you can buy this strength on Amazon. If she doesn't respond to folic acid (although it usually is needed if on hydroxoB12 injections) then you could try metafolin.

And if she's not responding to the hydroxoB12 injections, then you could try methylB12 injections. Everyone is different. Personally I would try more frequent injections before changing types. She most definitely has neuro symptoms so she should go back onto alternate day injections until all possible improvement in symptoms, as per the BNF section 9.1.2. I am a year into treatment and still need mine twice a week, and I am practically symptom free. I also still take the full 5mg folic acid daily. A B-complex is also a good idea.

The other thing that must be at good levels is iron/ferritin. Depends on the range - the top of my ferritin range is 150, and I need to keep above 50 to be well. Sometimes the top of the range is 300 or so, I think you'd want to aim for about 80 in that case.

You can get lots of great support here, as well as details on where to source your own supplies injectable hydroxoB12 or methylB12 if you so wish:

facebook.com/groups/1749289...

[Hidden in reply to Hidden]

And you might find something useful regarding testing for PA in the new guidelines I posted yesterday, link here:

bcshguidelines.com/document...

[Hidden in reply to Hidden]

And there is some good information about vitamin D here:

dr-forsyth.com/Dr_Charles_F...

[tmoxon in reply to Hidden]

Thanks Hamster for the links, there is a lot to take in. I will look at buying some folic acid, her ferritin was 48 and the doctor did prescribe some iron tablets when we asked for some, I am also on these as my score was 27.

What we have noticed is that our platelets are high on our blood results, mine are above what is considered normal at 446, top range is 400 and daughters are just below the top range.

Sorry if the platelets are nothing to do with thyroid/vit B12. but just thought I would mention it in case it means something to someone on here. Neither of us have had the doctors mention it despite my results having an asterix next to them to advise they are out of range so I wouldn't be any wiser if we hadn't asked for the results so assume that there is nothing to worry about.

[Hidden in reply to tmoxon]

There's some info on platelets here:

labtestsonline.org.uk/under...

It gives various reasons for high platelets, although it's using 450 as the top of the range in which case yours would be just inside. I can't give any insight into it, mine are the other end of the scale!

H x

[Mrs_Somerset]

Hi,

I currently take Vitamin D3 5µg and the packet says that is 100% my RDA.

AS my doc refuses to test me for vit D - I have ordered private blood tests - awaiting results - but from the numbers I see on these posts I cannot believe that the packet can be right, that 5µg is 100% ?