Very, Very worried about my daughter

[Booblet]

Hi,

My daughter is nearly 17 (24th September 2016). She is so tired all the time. This is the second lot of blood tests completed by GP. I am sure that she has CFS like myself.

Anyway, her latest bloods are:

Serum total billirubin 23 umol/L Range: (0 - 21)

Haemoglobin estimation: 0.359 Ratio Range: (0.370-0.470)

Red blood cell distribut..width 11.4 Range: (11.8-14.00)

Serum vit B12 582ng/L Range: (200-900)

Serum Folate 8.9 Range: (4.6-18.7)

Serum Ferritin 41 ug/L Range: (12 - 300).

TSH: Serum level 0.61 Range (0.35-5.00)

Free T4 (Serum level) 17.3 pmo1/L Range (11.0-23.0)

***Since the last lot of blood tests I have given her Q10 (300 mg daily), and a very good multi-vitamin with folate, minerals and vits).

Well, you have guessed it...........the GP says that the above tests are fine! I am now going to purchase Iron tabs (re: Low ferritin and Low folate). But I am worried that they may cause constipation? Perhaps take it with Vit C?

Can anybody please advice? I am so worried about her. She is only 16 years old, started her first day at college today (studying languages). She came back exhausted. It breaks my heart. Please help.

[SlowDragon Administrator]

Looking at her previous blood tests, is she now supplementing vitamin D as recommended in that post.

Also be good idea to check both thyroid antibodies, as also recommended previously

[Booblet in reply to SlowDragon]

Hi,

Thank you so much for your quick reply! her Vit D levels are good. And will check thyroid antibodies.

[greygoose]

That low ferritin would make her very, very tired. But her thyroid labs look ok - you would need to see the FT3 and antibodies before ruling out thyroid, though, of course.

Her B12 and folate could be a bit higher, too.

If I were you, I would bin the multivit - they really are not a good idea - and give her 1000 mcg sublingual cobalamin daily. Plus a B complex with methylfolate, rather than folic acid. Ferrous fumarate and 1000 vit C daily. And, I would get her vit D tested, too.

Don't start her on all this at the same time, though. A two week gap should be left between starting each supplement - one of the reasons multivits are not a good idea. But, start her on the iron, because that's the most desperate.

[Booblet in reply to greygoose]

What is sublingual cobalmin? is it B12 at a guess??

[greygoose in reply to Booblet]

Sorry! I should have said methylcobalamin! Yes, cobalamin is B12, and the type you want is methyl, not cyano. And it's in a form that will melt under the tongue, so you don't have to swallow it.

[Booblet in reply to greygoose]

Thank-you so much for your support. Is Methylcobalamin Vit B12? Where do you purchase 'melt on the tongue' from?

regards and thank you again.

[greygoose in reply to Booblet]

Yes, methylcobalamin is vit B12. You can find it on Amazon, by Jarrows or Solgar, and you want the 1000 mcg one. And it melts under the tongue, not on it. If you put it on your tongue, you will just swallow it! lol

[Booblet in reply to greygoose]

Thank-you again! By the way, I love your 'grey goose!'.

[greygoose in reply to Booblet]

He is rather handsome, isn't he. He lives in a park not far from me.

[seekinganswers6]

It may be worthwhile re-testing for Free T4 , Free T3, TSH, anti-TPO and anti-thyroglobulin. And note that even a slight elevation of TSH (i.e. above 5 on a lab range of 2.00 - 10.00) could signal that the thyroid is already working very hard and suboptimally even though the FT4 and FT3 levels are within the normal range. If antibodies are present (especially anti-TPO) and the FT4 and FT3 levels are not within the upper quartile, discuss a trial of levothyroxine (very small dosage) to try and give the thyroid a bit of a break. Some studies have shown that early intervention with l-thyroxine actually helps to reduce thyroid antibodies.

And iron supplements could also help (her haemoglobin levels do appear to be on the low side). But if thyroid levels haven't yet been tested, I would very strongly encourage you to do so.... I remember being her age and feeling very tired and only wish my thyroid levels were tested then instead of waiting almost a decade later to discover I had an autoimmune thyroid disorder!.... (as a starting point, the endocrine web is worth a look: endocrineweb.com/conditions....

Another thing to consider: has your daughter ever had Eppstein-Barr Virus (the one that can lead to mono)? If so, chronic fatigue could be a consequence of it. Worthwhile checking EBV antibodies as well (EBV VCA-IgM Ab; EBV VCA-IgG Ab; EBNA-IgG Ab; EA-D IgG Ab): labtestsonline.org/understa...

[Hidden]

Hi I fully understand my son is 27 just diagnosed with cfs it's awful I'm so stressed with it all . He has tryed to go back to work on short hours but was only able to stay one hour because of his symtoms . I think I have it also plus my hubby has progressive ms . I don't know how much more we can cope with . I Realy do feel for you an your daughter . Anyway my son went private to a senior pathologist who had worked all over war torn countries covering eboli virus etc don't know if this will help but he had put him on low dose naltrexone . If you google it you might get some info . He also takes a lot of vits b c d etc . Hope you find some help 😊

[bluebug]

Just to add iron tablets can cause diarrhoea as well.

She can also be one of the unfortunate people to swap randomly between both.

Oh and her results indicate she has iron deficiency anaemia which is why her haemoglobin estimate is low. The doctor should have picked up on this as they are trained to look for that at least. I suggest you question the doctor if it's not mentioned and get her to change practices to someone more competent.

She will need one iron tablet 3 times per day with vitamin C and water.

[Sleepybunny]

Hi,

Thought these links may be helpful.

patient.info/doctor/iron-de...

There are other iron tests besides ferritin.

labtestsonline.org.uk/under...

Has your daughter ever had a full blood count test (FBC)?

labtestsonline.org.uk/under...

I normally post on the PAS (Pernicious Anaemia Society) forum.Lots of info about B12 (cobalamin) there. From personal experience, I can say that it is possible to be symptomatic for b12 deficiency with levels that are normal range. I was given labels such as CFS. A lot of people on the PAS forum have had diagnoses of ME/CFS/Fibro in past.

b12deficiency.info/what-to-...

Is she prone to yeast/fungal infections? Some people with CFS type symptoms have candida problems.

patient.info/doctor/candidi...

Has she ever been tested for Coeliac disease?

coeliac.org.uk/coeliac-dise...

I am not a medic just a person who has struggled to get a diagnosis.

[Rosy_Holly]

A very good idea to be checked for coeliac disease. A new friend was tested for everything under the sun for 10 years at her previous hospital. In the end her GP said it must be something you are eating. The result came back coeliac disease. Please have the test before embarking on Gluten Free diet. When you have the results, see if your daughter will consider going gluten free whatever the result, there are a lot of people now - many of them call themselves "gluten light". It could be the modified wheat that is being used and the drenching of the grains with pesticides etc.