Results - advice please

[rustymoon88]

Hi everyone,

I posted on here a couple of months back saying that I've been having a rough time with severe fatigue, brain fog, joint pain in my legs, sensitivity to cold and dry skin and have been back and forth for blood tests over the last six months, which included an initial diagnosis of underactive thyroid but ultimately hasn't led to any kind of treatment to date.

After seeing others on here being helped by some very kind people when posting their results I've got myself a print out of mine from my surgery and would really appreciate some advice on what to say to my doctor at my face-to-face appointment next week as I don't really understand what most of it means and I'm getting to the end of my tether...

May 2021 (first appointment)

Serum TSH level - unable to find on the print out but doctor said level was high, hence mentioning the likelihood of an underactive thyroid

Serum vitamin B12 level - 223 ng/L [144.0-915.0]

Serum folate level - 4.2 ug/L [3.1-19.9]

Serum ferritin level - 73 ng/mL [11.0-306.8]

Doctor wouldn't give me thyroid medication but told me to take a 6-week course of vitamin D and then have more blood tests.

June 2021 (when I was generally feeling a bit better, most likely due to a combination of the vit D, warm weather and being outside more)

Serum TSH level - 3.94 miu/L [0.34-5.6]

B12/folate/ferritin - not found on print out, may not have been tested this time

Doctor said everything was fine and that was that. I have continued to take vitamin D supplements since then and also omega 3 fish oil capsules.

October 2021 (back to feeling really rough again)

Serum TSH level - 4.49 miu/L [0.34-5.6]

Serum vitamin B12 level - 185 ng/L [144.0-915.0]

Serum folate level - 5.0 ug/L [3.1-19.9]

Serum ferritin level - 65 ng/mL [11.0-306.8]

Had a phone apt with the doctor yesterday but he didn't really say much except that he'd like to see me face-to-face next Tuesday, hence I'd like to be prepared after all the to-ing and fro-ing. My vit D levels have showed as very slightly low again, but only by a tiny amount.

I seem to have all the classic symptoms of Hashimoto's disease and my mum and cousin have this so it would seem to make sense but I'm not sure what to think. The fatigue and joint pain are starting to affect my work and everyday life and it's so miserable

I'm 33 and female.

Thank you so much in advance for any advice.

[shaws]

If you are in the UK, I believe doctors have been told not to begin B12 injections until you reach a certain number (not sure what it is).

For a dysfunctional thyroid gland, your doctor has to test TSH (thyroid stimulating hormone), T4, T3 and antibodies. Always get the earliest possible test (fasting - you can drink water) and don't take thyroid hormones before test but take afterwards.

You are a young woman and shouldn't be having clinical symptoms unless you have an autoimmune disease. If your GP diagnosis you with hypothyroidism he has to begin supplementation of levothyroxine and every six weeks take a blood test (which should be at the very earliest and don't take thyroid hormones before it but take afterwards (with one glass of water) and wait an hour before you eat. Food can interfere with the uptake of of thyroid hormones.

If you have a B12 deficiency (pernicious anaemia) you'd have to have regular injections.

When blood test results are stated, there also has to be ranges too so that members can comment upon the test results. Labs differ in their machines and so ranges may differ.

Once diagnosed with hypothyroidism we have to take levothyroxine (or equivalent) for life.

[rustymoon88 in reply to shaws]

Thanks for your reply. I've added the ranges in next to the results now (assuming this is the bit in brackets?)My first and third tests were in the morning having had nothing but water but the second test in June was early afternoon and I'd eaten and drunk tea as I wasn't told it should be starving. I'm not taking any kind of hormones/medication though as the doctor hasn't prescribed me anything thus far.

I'll ask the doctor to test for TSH, FT3, FT4 and antibodies at my appointment next week but if he won't then I'll look into going private I think.

[SlowDragon Administrator]

As your mum has autoimmune thyroid disease GP must test thyroid antibodies

For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested.

Very important to test vitamin D, folate, ferritin and B12

Low vitamin levels are extremely common, especially with autoimmune thyroid disease (Hashimoto’s or Ord’s thyroiditis)

Serum vitamin B12 level - 185 ng/L

Serum folate level - 5.0 ug/L

Serum ferritin level - 65 ng/mL

Please add ranges on these results And vitamin D result

Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water

This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)

Private tests are available as NHS currently rarely tests Ft3 or all relevant vitamins

List of private testing options

thyroiduk.org/getting-a-dia...

Medichecks Thyroid plus antibodies and vitamins

medichecks.com/products/adv...

Blue Horizon Thyroid Premium Gold includes antibodies, cortisol and vitamins by DIY fingerprick test

bluehorizonbloodtests.co.uk...

If you can get GP to test vitamins and antibodies then cheapest option for just TSH, FT4 and FT3

£29 (via NHS private service ) and 10% off down to £26.10 if go on thyroid uk for code

thyroiduk.org/getting-a-dia...

monitormyhealth.org.uk/

NHS easy postal kit vitamin D test £29 via

vitamindtest.org.uk

If TPO or TG thyroid antibodies are high this is usually due to Hashimoto’s (commonly known in UK as autoimmune thyroid disease). Ord’s is autoimmune without goitre.

About 90% of all primary hypothyroidism in Uk is due to Hashimoto’s. Low vitamin levels are particularly common with Hashimoto’s. Gluten intolerance is often a hidden issue too

Link about thyroid blood tests

thyroiduk.org/getting-a-dia...

Link about Hashimoto’s

thyroiduk.org/hypothyroid-b...

List of hypothyroid symptoms

thyroiduk.org/if-you-are-un...

[rustymoon88 in reply to SlowDragon]

Thank you very much for your reply. I've now added what I think are the ranges for each of the results which hopefully makes things clearer. My current vitamin D3 is 48.2 nmol/L with a note saying 50-150 is adequate.My first test was done at 7am having had nothing but water. Second test was done around 1pm having eaten (wasn't told not to) and my third was done at 11am having had nothing but water after seeing advice on here.

At my appointment I'll mention about my mum and ask him to test for all the things you mention. If no luck I'm definitely going to look into getting it done privately.

Thanks again.

[SlowDragon Administrator in reply to rustymoon88]

First test - TSH not listed

Tested 7am and fasting

June

Serum TSH level - 3.94 miu/L [0.34-5.6]

Tested as 1pm and having eaten

TSH would have been higher 7am and fasting

Serum TSH level - 4.49 miu/L [0.34-5.6]

Tested at 11am fasting

Would possibly have been over 5 if tested at 7am

See flow charts on here

gp-update.co.uk/Latest-Upda...

Median TSH graph shows that TSH over 3 is abnormal

healthunlocked.com/thyroidu...

TSH daily variation

healthunlocked.com/thyroidu...

Very important when you test TSH ....

researchgate.net/publicatio...

“According to the current TSH reference interval, hypothyroidism was not diagnosed in about 50% of the cases in the afternoon.”

“Further analysis demonstrated inadequate compensation of hypothyroidism, which was defined in 45.5% of the morning samples and in 9% of the afternoon samples”

ncbi.nlm.nih.gov/pubmed/252...

TSH levels showed a statistically significant decline postprandially in comparison to fasting values. This may have clinical implications in the diagnosis and management of hypothyroidism, especially SCH.

[rustymoon88 in reply to SlowDragon]

Thanks so much, some really interesting food for thought there! Can't tell you how useful this will be when I see the doctor, always good to go pre-armed with some knowledge.

[SlowDragon Administrator in reply to rustymoon88]

GP will likely categorically deny timings of test have any difference

This is patient to patient tip on when/how to test

[rustymoon88 in reply to SlowDragon]

Possibly, although based on information I've read on here I think I'd be right in saying that my first and third TSH results are high and hence I wouldn't be being unreasonable to ask for further testing? Though having done some research into other people's experiences I've prepared myself for potentially getting nowhere at my appointment so will go down the private testing route if so.

[SlowDragon Administrator in reply to rustymoon88]

Getting all four vitamins optimal might/should increase TSH so you can get levothyroxine prescribed

Being hypothyroid frequently causes low stomach acid and poor nutrient absorption and low vitamin levels as direct result

Low vitamin levels tend to lower TSH

B12 is extremely low

Folate low (but just within range)

Vitamin D still far too low

Test twice year

Ferritin dropping

It’s chicken and egg. Being hypothyroid frequently causes low vitamin levels. Low vitamin levels reduce TSH

[rustymoon88 in reply to SlowDragon]

I didn't know that about nutrient absorption, thanks. I actually had a text from my surgery today saying my doctor's prescribed me more vitamin D (higher dose than the supplements I bought) so that's something but will definitely ask him about my B12 being low.

[SlowDragon Administrator in reply to rustymoon88]

Low B12 symptoms b12deficiency.info/signs-an...

Getting tested for Pernicious Anaemia before starting any supplements

With serum B12 result well below 500, (Or active B12 below 70) recommended to be taking a B12 supplement as well as a B Complex (to balance all the B vitamins) initially for first 2-4 months,

then once your serum B12 is over 500 (or Active B12 level has reached 70), stop the B12 and just carry on with the B Complex.

B12 sublingual lozenges

amazon.co.uk/Jarrow-Methylc...

cytoplan.co.uk/shop-by-prod...

healthunlocked.com/thyroidu...

Low folate

supplementing a good quality daily vitamin B complex, one with folate in (not folic acid) may be beneficial. This can help keep all B vitamins in balance and will help improve B12 levels too

Difference between folate and folic acid

chriskresser.com/folate-vs-...

Many Hashimoto’s patients have MTHFR gene variation and can have trouble processing folic acid.

thyroidpharmacist.com/artic...

B vitamins best taken after breakfast

Thorne Basic B or Jarrow B Right are recommended options that contains folate, but both are large capsules. (You can tip powder out if can’t swallow capsule)

IMPORTANT......If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 7 days before ALL BLOOD TESTS , as biotin can falsely affect test results

endo.confex.com/endo/2016en...

endocrinenews.endocrine.org...

[rustymoon88 in reply to SlowDragon]

Thanks again. Really hoping my appointment next week will result in some course of action based on my results instead of being fobbed off again!

[SlowDragon Administrator in reply to rustymoon88]

Getting full testing for Pernicious Anaemia is most important………before starting any B vitamins

[SlowDragon Administrator in reply to rustymoon88]

My current vitamin D3 is 48.2 nmol/L with a note saying 50-150 is adequate

Low vitamin D

With vitamin D under 50nmol GP should prescribe 1600iu everyday for 6 months

NHS Guidelines on dose vitamin D required

ouh.nhs.uk/osteoporosis/use...

GP will often only prescribe to bring vitamin D levels to 50nmol. Some areas will prescribe to bring levels to 75nmol or even 80nmol

leedsformulary.nhs.uk/docs/...

GP should advise on self supplementing if over 50nmol, but under 75nmol (but they rarely do)

mm.wirral.nhs.uk/document_u...

But with improving to around 80nmol or 100nmol by self supplementing may be better

pubmed.ncbi.nlm.nih.gov/218...

vitamindsociety.org/pdf/Vit...

Once you Improve level, very likely you will need on going maintenance dose to keep it there.

Test twice yearly via NHS private testing service when supplementing

vitamindtest.org.uk

Vitamin D mouth spray by Better You is very effective as it avoids poor gut function. There’s a version made that also contains vitamin K2 Mk7

amazon.co.uk/BetterYou-Dlux...

It’s trial and error what dose we need,

Vitamin D and thyroid disease

grassrootshealth.net/blog/t...

Government recommends everyone supplement October to April

gov.uk/government/news/phe-...

Taking too much vitamin D is not a good idea

chriskresser.com/vitamin-d-...

Web links about taking important cofactors - magnesium and Vit K2-MK7

Magnesium best taken in the afternoon or evening, but must be four hours away from levothyroxine

betterbones.com/bone-nutrit...

medicalnewstoday.com/articl...

livescience.com/61866-magne...

sciencedaily.com/releases/2...

Vitamin K2 mk7

betterbones.com/bone-nutrit...

healthline.com/nutrition/vi...

[waveylines]

Hello you are having a horrid time. Its not just your thyroid that needs treatment. But also B12 -your latest result shows it is below range. I suspect this is likely why the doctor wants to see you. Given that you are already on supplements its likley he will be suggesting injections but he should want to do some other tests to find out why your b12 is so slow.. The frequency are based on whether you have neurological symptoms. Examples of this, are tilngling, shoiting pains, sensation os soneyhing crawling on you, blurred or double vidion, numbness, weakness, loss of balance, feeling uncordinated. If you on B12d.org they do an excellant assessment sheet which is worth filling in. They aslo have a free book download on b12 defivency written by Dr Chandy which is excellant. Knowledge is power and will help you when talking to your GP.

If you do have neurological symptoms you should be alternative day injections until np further improvement........this could be a very long time. Many GPs often forget about this protocol and opt for the other one -non neurological symptoms , where by you get alternate day injections for two weeks and then go onto two or three monthly injections.

[Marymary7 in reply to waveylines]

Agree with you. Also don't supplement with any b12 at all in any form until proper diagnosis or it will skew results, look falsely high and maybe stop further investigations.

[rustymoon88 in reply to Marymary7]

Thanks, I did look into buying some vitamin B supplements as I got more and more frustrated but glad I didn't!

[rustymoon88 in reply to waveylines]

Thanks so much for your reply. The doctor hasn't specifically mentioned my vit B before but you could be right in saying that's why he wants to see me in person. I'll certainly mention it if he doesn't.

I wouldn't say I've ever experienced tingling, crawling sensation or double/blurred vision but I sometimes get numbness in my knees and feet, my leg muscles are very weak (I struggle to crouch and bend down; had to give up yoga and pilates because of this) and I've always felt a bit uncoordinated (thought I was just clumsy to be honest!)

[Litatamon in reply to rustymoon88]

Clumsy could be proprioception, which is a sign of b12 deficiency.

I had my vitamin b12 deficiency and vitamin d deficiency found at the same time. I had very weak leg muscles just as you describe, despite no atrophy and strong muscles (composition). And a lack of exercise recovery. My vitamin d was 19 pmol/l. It took very aggressive dosing to get it anywhere near normal. In Canada our normal for vitamin d starts in the low seventies. Always surprised by the 50 in the UK.

Please educate yourself about pernicious anemia/b12 deficiency, just in case. Doctors know little and it is not normal range okay stop now, you're fine like other tests.

A good start -

stichtingb12tekort.nl/engli....

stichtingb12tekort.nl/engli...

All the best to you.

[rustymoon88 in reply to Litatamon]

Thanks so much for sharing this. I've been doing a bit of reading about B12 deficiency and will definitely mention this when I see the doctor next week.

[rustymoon88 in reply to waveylines]

Don't know if this is also worth mentioning but I've just been doing a bit of reading about B12 deficiency and it says this causes a lack of red blood cell formation, but something that was picked up in my first blood test is that my red blood cell count is too high (it's not currently at a level that I need any kind of treatment but it's above the normal ranges and needs to be monitored)...so that's a bit weird. Will see what the doctor says anyway!

[humanbean in reply to rustymoon88]

If you have the results of a Full Blood Count, take a look at your MCV = Mean Cell Volume. MCV tells you the average size of your red blood cells.

In people with low B12 and/or low folate MCV tends to be high in range or over the range.

In people with low iron and/or low ferritin (iron stores) MCV tends to be low in range or under the range.

In people with low B12/folate AND low iron/ferritin, it is not possible to predict the effect on MCV.

Red blood cells which are too small OR too big don't transport oxygen very well, so you could be very breathless.

Please note that if you start taking B12 and/or folate and/or iron it will start your body trying to fix a back log of creating healthy red blood cells. There are other ingredients required in making red blood cells, not just B12, folate and/or iron. One thing that may run low is levels of potassium and it can make you feel unwell. Some popular ways of increasing your potassium levels are to drink coconut water and eat bananas - but I'm sure that there must be other options too. Look for lists of potassium-rich foods.

health-boundaries.com/what-...

Also useful, if you haven't already seen it - this is a list of B12 deficiency symptoms :

b12deficiency.info/signs-an...

Another link you may find useful - how to caclulate your ideal vitamin D dose if your level is too low :

grassrootshealth.net/projec...

[rustymoon88 in reply to humanbean]

Thanks so much for your reply! I've just had another look at my results and my MCV on all three occasions is between 83 and 84.5 [80.0-101.0] so I'm not sure if that would suggest I have both low B12 and low iron? Though to throw another source of confusion into the mix, I read that people like me with polycythaemia (too many red blood cells) shouldn't take iron supplements...hmm.

[humanbean in reply to rustymoon88]

Serum ferritin level - 65 ng/mL [11.0-306.8]

Your ferritin is only 18% of the way through the range, which for most people would be too low. Usually it is recommended that people get their ferritin up to mid-range or a little bit higher (while staying well within range).

A couple of links you might find of interest :

cmaj.ca/content/cmaj/184/11...

onlinelibrary.wiley.com/doi...

Unfortunately, it isn't a good idea to supplement iron based solely on a ferritin result. It is usually a good idea to get an iron panel first, because people really need to know their serum iron and transferrin saturation percentage as well as ferritin before doing anything about iron. It also helps to know CRP (a measure of inflammation) because it has an impact on ferritin.

But all of this is just pointless waffle on my part because I don't know anything about polycythemia, and if you can't take iron supplements I don't know how you are supposed to raise your iron levels, sorry.

☹️

[rustymoon88 in reply to humanbean]

No need to apologise, this is all really helpful! I've actually just done a bit more reading and apparently low ferritin and folate is common with polycythaemia...curiouser and curiouser. Definitely another question for the doctor!

[waveylines]

I never had alow blood count. Its all about degrees..... Your symptoms are neurological. Have a look at the symptoms checker on B12d.org