Blood results back for mum, look OK, any ideas?

[arcticsun]

Hi all,

I am back with my mother's results from medicheck.

A brief history for anyone reading for the first time. My mum is 65yrs old, and is currently house-bound. She was diagnosed with Graves with a positive test for TRab antibodies in 2015. In the passed 18months she has suffered from three severe episodes, although she has not felt well since initial diagnosis due to bad fatigue. She became very unwell again right at the start of this year, with extreme fatigue, heart palpitations, heat intolerance, severe anxiety, depression, loss of appetite, brain fog, uncomfortable eyes, and just no real quality of life.

Her basal body temperature is low (between 35.5-36.6), which through personal experience I realise indicates hypo rather than hyper.

We are still awaiting the repeat of her TRab test, and also the cortisol saliva test.

I am at a bit of a loss, none of these look particularly bad? They were drawn on Feb 14th at 10am, on an empty stomach. Her current medication is 2.5mg of Carbimazole. She also takes letrozole daily. Her bloods actually appear better (her FT4 has risen quite a lot compared to where it was 10 days prior to this episode kicking in-blood draw from Dec 21st below)

Feb 14th- medichecks

TSH 1.95 mIU/L (0.27-4.2)

FT4 19 pmol/L (12-22)

FT3 5.18 pmol/L (3.1-6.8)

Thyroglobulin antibody 11.2 (<115 kU/L)

Thyroid Peroxidase antibodies <9 (<34 kIU/L)

Serum Folate 10.21 ug/L (>3.89)

Active B12 57.9 pmol/L (37.5-188)

25 OH Vit D 117 nmol/L (50-175)

Ferritin 88.1 ug/L (13-150)

Iron-Serum 24.93 umol/L (5.8-34.5)

T.I.B.C. 47.13 umol/L (45-75)

U.I.B.C. 22.2 umol/L (24.2-70.1) LOW

Transferrin Saturation 52.9% (20-50%) HIGH

CRP High Sensitivity 0.41 mg/L (<5)

Dec 21st - NHS

TSH 1.74 mIU/L (0.55-4.78)

Free T4 13.4 pmol/L (11.5-22.7)

Ferritin 51ng/mL (30-480)

Sodium 141 mmol/L (133-146)

Potassium 4.4 mmol/L (3.5-5.3)

Chloride 107 mmol/L (95-108)

Urea 4.7 mmo/L (2.5-7.8)

Creatinine 58 umol/L (44-71)

eGRF >90 mL/min/1.73m^2

Bilirubin 9umol/L (<21)

Alk. Phos. 41 U/L (30-130)

ALT 24 U/L (10-49)

Albumin 45 g/L (35-50)

FBC all in range except:

RBC: 5.02 10^12/L (3.80-4.80) High

HCT: 0.464 (0.360-0.460) High

MCHC: 313 g/L (315-345) Low

Thanks in advance to anyone who takes the time to give me their thoughts.

[pennyannie]

Hi there articsun,

I can see extensive blood results, which I'm sure will get picked up by people more able than me in a while.

I remember your previous posts, your worry and thinking you should be taking your mother to a private endocrinologist for better treatment.

Where are you in all this now, how is your mother and how are you feeling ?

[arcticsun in reply to pennyannie]

Hi Pennyannie,

Thank you for the msg, and for taking the time to ask how we are.

My mother is a little worse unfortunately. The GP upped her dose of antidepressant (citalopram) to 30mg from 20mg. She has been on the new dose for 2 weeks, but as yet there has been no positive effect from this. I was hopeful it might help her turn a corner a little, alleviate her anxiety and depression and in turn help everything to improve a bit. No such luck yet.

She was very poorly, verging on bed-bound, for 48hr after the blood draw last week. Thankfully she has rallied a bit since, and has been able to get up and sit downstairs.

I have to admit that I was really rather disappointed when I saw the bloods last night. I was so hopeful there would be something glaringly obvious. I am so fearful no one will be able to find anything. I didn't get much sleep after seeing them.

I'm trying to stay strong, and be there for her and my dad, trying to take away as much stress from them as possible. I am finding it tricky though. I have a husband and toddler to factor in too, and it's hard not to show my upset about it all to them too much. It feels like all of our lives are at a bit of a standstill. I just want her back so we can all start making memories again. My father turned 70 at the weekend and we haven't really done anything to celebrate yet, as Mum just isn't well enough to partake. Hopefully we'll get answers soon.

On a positive note I have made contact with Dr Zachariah, and he has agreed to do a telephone consultation with us....just hope there is something he can work with results wise...

How are you Pennyannie?x

[pennyannie in reply to arcticsun]

Oh, I'm ok, self medicating with Natural Desiccated Thyroid and getting better.

I'm sorry you don't seem any further forward, and am a bit concerned that the anti depressant has been increased.

Yes, it's very hard, trying to keep an eye on everybody - please cut yourself some slack. You can only do what you can, and you also need your time, to rest and reset your own body and mind.

[arcticsun in reply to pennyannie]

I'm always relieved to read that people are finding their path, and finding a way back to better health.

I am a bit concerned about the anti-depressant increase too, and I think so is mum, but I guess at the beginning, in desperation you'll try things that probably don't really help. I so very much hope we find the answer to this problem and she can get off of anything that's unhelpful.

Thank you. Yes I need to find a balance. I will keep working tirelessly on this though, until I find a way out, or I'm forced to take a breath x

[SlowDragon Administrator]

Has she had TPO and TG thyroid antibodies tested?

Obviously needs TRab or TSI testing too

thyroiduk.org.uk/tuk/about_...

[arcticsun in reply to SlowDragon]

Hi SlowDragon,

Yes sorry, I forgot to add them, I will edit them into my question. She is still waiting for her TRab one to come back, this was elevated when she was diagnosed with Graves 4 years ago. The others are negative.

Thyroglobulin antibody

11.2 (<115 kU/L)

Thyroid Peroxidase antibodies

<9 (<34 kIU/L)

[greygoose]

Her B12 is rather low. Is she supplementing that?

[arcticsun in reply to greygoose]

HI greygoose,

No she isn't supplementing vitamins, except for vit d. Thanks for the heads up about the b12 being low!

[SeasideSusie Remembering]

arcticsun

Active B12 57.9 pmol/L (37.5-188)

This is too low. A result below 70 should be tested for B12 deficiency/pernicious anaemia according to viapath.co.uk/our-tests/act...

Check for signs of B12 deficiency here b12deficiency.info/signs-an...

If your mother does have any signs/symptoms then list them to discuss with her GP and request further testing. She must not supplement with B12 or a B Complex until further testing has been carried out (it will mask signs of B12 deficiency).

Take a look at the first video here "Diagnosing and Treating B12 Deficiency"

b12deficiency.info/films/

You don't need to watch it all, but does any of it look familiar?

Ferritin is improving but still a long way to go. Is she supplementing, eating liver, liver pate, black pudding, etc?

[arcticsun in reply to SeasideSusie]

Hi SeasideSusie,

Thanks ever so much for all this B12 info! The signs and symptoms...there are so very many that mum has, (confusion, dizziness, decreased/blurred vision, forgetfulness, depression, anxiety, irritability, insomnia, sleep disturbances, weakness, severe fatigue, chronic fatigue, orthostatic hypotension, palpitations, loss of appetite/weight loss, osteoporosis, nominal aphasia, and I have the MTHFR gene mutation so she maybe has too as I have similar health issue to her) and it would perhaps explain why she has so many apparent cross over symptoms of both hyper and hypo. Perhaps this is all not being caused by thyroid issues!

Do you know what further bloods the NHS would want to run to try and help diagnose b12 deficiency?

She hasn't been supplementing ferritin at all, I wonder why it has risen over that 8week period....hmmm. She did have a very good, healthy diet at the point of testing on the 21st of Dec, but she lost her appetite at the start of January and she is struggling to eat much of anything, though she does force herself.

Also, as you seem clued up on the b12 deficiency, any ideas why the severity of these episodes come and go, and thus far symptoms haven't been continuous in their severity? Just curious if you have any inkling, in case the GP argues this as a why to not take b12 deficiency seriously in her case.

[SeasideSusie Remembering in reply to arcticsun]

The Viapath link tells you that if result is <70 then refer for MMA test - Methylmalonic Acid

It can be done on the NHS - here is one link easily found on Google:

southtees.nhs.uk/services/p...

If that was my mum with all those symptoms, I would be pushing for this. I think Homeocysteine test can be important too.

General NHS page about B12 deficiency:

nhs.uk/conditions/vitamin-b...

Another interesting link here:

pathology.imperial.nhs.uk/u...

Looks like MMA is an expensive test so GP may not want to do it, push if you want it done.

I'm not clued up on B12 deficiency, it's just something that's mentioned a lot because we are always saying that optimal vitamins and minerals are essential for thyroid hormone to work properly, and when people post their results we see a lot of very low results for Serum B12 and quite a few low Active B12 results, and my reading has led me to the levels where further investigation should take place.

Why not look around the B12 deficiency website where I'm sure you'll find lots more information

b12deficiency.info/

and the B12 Society's website

theb12society.com/

[Karen321]

In my personal experience antidepressants do absolutely nothing for the type of anxiety and depression that come with Graves’ disease. I’m not experienced enough to comment on your mother’s blood tests but for me personally I feel better when my TSH is below 1 and my FT3 is a little higher towards the top of the range. It really is a roller coaster ride of a balancing act for many of us gravesters. When I was first diagnosed I saw several NHS Endocrinologists but they were dismissive of my symptoms so I have now found a private endocrinologist who does actually listen to me and works with me to manage my symptoms. I do hope your mother improves soon as it’s such a soul destroying illness for many of us x