Blood results call out 😀

[smilingjane]

Good afternoon to everybody.

I have arranged at last an appointment with a recommended, (on this brilliant site), endocronologist.

I have been unwell for a while now but looking at my latest blood results, I dont think they look too bad. I am aware that it's not just results but that it's how you feel.

What does everyone else think, looking at these results? I have been taking sublingual B12 for over a month but stopped the other B vits a month ago, knowing I was having these latest tests.

Interestingly, looking back at my last B12 test on 2017 it was 209.

I am pretty much bedridden now. I am able to potter for a couple of hours daily, but that's all.

My Vit D wasnt tested but I have been supplementing with mega sublingual daily doses so I assume that shouldnt be so bad.

I have also added result from March too.

May:

B12 578 (145 - 569)

Folate 17.1 (3.9 - 26.8)

TSH 0.06 (0.3 - 4.5)

T4 16.4 (10.0 - 22.0)

Ferritin 169 ug/l

March:

TSH 0.05 (0.3 - 4.5)

T4 20.09 (10.00 - 22.00)

I reduced my T4 from 112 daily (halved a 125 tab daily to do this), to 100 daily in January 2020.

Do people think the endo will think that it's not my thyroud causing the fatigue?

Ps for anyone that can remember, I did try T3 for a couple of weeks, (not prescribed) in April and it certainty made a difference. But I've stopped because I am seeing a new endo and I want to go in 'clean' if you get my drift 😉

Smiling Jane smiling to everyone!

[smilingjane]

No, GP/labs said no!

I assume my endo will do that

[SlowDragon Administrator in reply to smilingjane]

Is this a private endo or NHS

NHS rarely tests Ft3

If private....remember you can get full testing via Medichecks etc ...at likely much cheaper price than private endocrinologist

[smilingjane in reply to SlowDragon]

Yes he is private. That's why I got the recent bloods from GP - but not T3 Grrrr.

I am aware ig Medi and B.H.

Will be using them in the future 😊

[SlowDragon Administrator in reply to smilingjane]

Ft3 is the most important result....but NHS refuses to test

[smilingjane]

Hi Scrumbler hope your well?

I have found this from a year ago. My last T3 b.test.

TSH 0.9 (0.3 - 4.5)

T4 22.4 (10 -22)

T3 5.6 (3.1 - 6.8

I assume not a lot has changed in the last year. Who knows...

[smilingjane]

oh does it? why? where would you expect T3 if TSH is low?

[smilingjane in reply to smilingjane]

Ah yes I see, would you then expect a high T3?

[smilingjane]

Also, to mention, I had a Thyroid scan recently and was told there was just a tiny slither of the gland left. Does this mean that probably I am incapable of producing any thyroud hormones now?

🤔

[Family2017 in reply to smilingjane]

Hello, I had total thyroidectomy 2004. On Levothroxine 100mg for years. Last year GP reduced to 88mg. TSH was 0.33 (0.35 - 4.00). Also, always have experience intermitt palpatations. Recent lab results 5/16/20

TSH 0.71 (0.35 - 4.00) in March it was 2.29

Vit B12 1210 (200 - 910) in May 2019 - 691

FERRITIN 183 (20 - 400) first ever test!

IRON Sat 18 (20 - 50)

IRON 54 (37 - 145)

Total IRON Binding Capacity 292 (250 - 450)

At present (March 2020) I am having hair loss. Shedding/thinning. GP states TSH is within range and Iron is slightly low. Therefore, these results would 'really' not cause the hair loss and I was referred to a Dermatologist. Oh, forgot to mention been on blood pressure meds since December 2019. GP states bp meds would not cause hair loss. In addition to this medical discussion I requested to see an Endocrinologist and I am waiting for a phone visit from Dermatologist.

I am 66 years young with CLL in remission, so I am overly concern about any health issue.

I am not a doctor either, but one has to question the medical professionals. Check and double check.

[smilingjane in reply to Family2017]

Hello family 2017

So sorry late response and thank you for responding.

you are so right, in double checking with medics!

So far I have seen 4 different specialists in a year who all doubt I have an endo issue.

Just back from seeing a private endo and confident that he has helped me with my thyroidism.

I wish you luck with seeing your endo.

Best wishes

Jane 😊

[SlowDragon Administrator]

Essential to test vitamin D, folate, ferritin

As you have restless legs are you supplementing magnesium?

How much vitamin D are you supplementing?

Essential to test

vitamindtest.org.uk

Magnesium

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...

As you have Hashimoto’s are you on strictly gluten free diet

Clearly essential to test Ft3, Ft4 and TSH together

[smilingjane in reply to SlowDragon]

Hi Slowdragon

Have put the vits on hold till my appointment next week with Endo.

Yes working g o the G. free 😊

[SlowDragon Administrator in reply to smilingjane]

It does need to be absolutely strictly gluten free diet to e effective

[smilingjane in reply to SlowDragon]

Thanks for that. Yep I know that's important 😊

[SeasideSusie Remembering]

Scrumbler

I’m amazed. Abnormal TSH - especially as low as yours - normally triggers a FT3 test even if not requested by GP.

My GP tests have always come back with FT3 as well as TSH and FT4 because my TSH is always below range or suppressed. Never failed, even though individual tests are never specified on the form, just TFT, so I was quite happy about that.

In October 2019 it came back, as usual, with FT3 tested as TSH was <0.02 but in February 2020, same TSH, FT3 was not done. I don't know if this is a new thing and they've changed the criteria (however, I am in Wales and they do some things differently from NHS England).

[smilingjane in reply to SeasideSusie]

Hi SeasideSusie!

Do you mind me asking, with a low TSH where about is your T3?

[SeasideSusie Remembering in reply to smilingjane]

Do you mind me asking, with a low TSH where about is your T3?

I take Levo plus T3 so my result wouldn't be relevant as it reflects the exogenous T3 that I take, not what I produce on Levo only.

[smilingjane in reply to SeasideSusie]

Ah okay yes of course 🙂

[smilingjane in reply to SeasideSusie]

Maybe the criteria has changed.

I will mention this to my endo ...

[Hidden in reply to SeasideSusie]

I have got into the habit of writing

"TSH

T3

T4" on the blood form when TFT is ordered. Otherwise they just test TSH.

One time I just put "T3" to make sure they tested that, and that was ALL they tested! You have to spell it out for them it seems!

[SeasideSusie Remembering in reply to Hidden]

Our surgery doesn't give you a blood form. When a GP wants you to have a blood test you get given a tiny little pre-printed "ticket" on which they tick which tests they want doing, thyroid is down just as TFT. You had this to the receptionist, she books the appointment with the nurse, puts on the computer what tests and keeps the ticket. Patients have no access whatsoever to any paperwork connected to tests.

If they phone you to say you need a routine blood test, they just book the appointment and put the tests on the computer for the nurse to see.

[Hidden in reply to SeasideSusie]

That is so mean!!!

[SeasideSusie Remembering]

Scrumbler

From what I understand cost is about the same as the other thyroid tests, about £1-ish

My last test was done in February before the Covid situation so I can only wonder if the hospital lab that does my tests is now falling in line with all those others who don't do FT3. It's puzzling because they've done the FT3 test for years as my TSH always comes back below range or suppressed.

[smilingjane]

Is that because they suspect you may be hyper?

[smilingjane in reply to smilingjane]

Can you remind me what FT3 is?

🤔

[Hidden in reply to smilingjane]

It's the active thyroid hormone, T4 (thyroxine) is normally converted to T3 in the body when needed, but if you are hypo that process may not give enough. T4 has 4 iodine atoms and T3 has 3.

[smilingjane]

can you be over medicated but still be symptomatic?

[Hay2016]

My hospital reflex testing goes low tsh, test t4, if normal out it goes. If t4 is high then t3 tested. X

[Hidden in reply to Hay2016]

You actually get reflexes tested?!!! I know that's a good test but thought they didn't do it any more.

[Hay2016 in reply to Hidden]

Sorry Jnetti. Reflex testing in this case refers to cascade testing I suppose. It’s programmed into the big analysers. I wish they still tested reflexes.

[smilingjane]

My TSH is low but my T4 is only 16 or so. The surgery has said they might need to lower my Thyroxin? Does that sound right do you think?

[Hidden in reply to smilingjane]

"Does that sound right do you think?"

NO!!! They did that to me and I've had problems ever since.

If you still have hypo symptoms you are still undermedicated, whatever the TSH is.

There is a simple test of overmedication that you can do at home. As far as I know it's pretty failsafe unless you have hand tremors for some other reason. Stretch your arms straight out in front of you, palms of the hands down and fingers spread, and put a small weight on the back of one or both hands. If there is a hand tremor you are likely over medicated. If not you are not.

I don't think I've ever been truly overmedicated, but as Hidden said "hot, wired, cranky and hungry" sounds about right. I get bouts of being hungry and hot (hot flushes!) but not wired or cranky - seldom have the energy for that!

[suztango]

With a test result in the past of B12 209 you may have b12 deficiency. Mine went down to 202 when I started B12 injections. Unfortunately you have been taking B12 supplements which will now mask the deficiency so the doctor will probably dismiss this. I started B12 injections this year and it has made a huge difference to me. I’d look into this if I were you.

[smilingjane in reply to suztango]

Suztango

Thank you so much for that. I did wonder.

My appointment with endo is tomorrow. I will take evidence along of the low B12 past result.

Just out of interest, I stopped the B12 around 3 weeks ago. Do you think that it would still be in my system? With a test this week? Last week I was still high at 507.

Thanks so much for getti g back a d pointing that out 😚

[suztango in reply to smilingjane]

Hi, unfortunately B12 can circulate in your blood for months and not be utilised. You need to leave it 4 months to get the result. And take folate to utilise the B12 in the blood.

But, I would ask the endo for a trial of B12 injections based on symptoms. I got that and now it's lead to prescribed injections via the GP. If you can get your endo to do this for you it's better than arguing with a GP. Having said that there are some useless endos out there. (BTW, I also self inject in-between as per Sally 56.)

[suztango in reply to smilingjane]

This is a really good article about B12 deficiency from the thyroid patient point of view.

paulrobinsonthyroid.com/b12...

The British Society of Haematology states in the B12 guidelines that there is NO gold standard method of diagnosing B12 deficiency. Doctors need to look at all the evidence and diagnose on symptoms as well as test results.

[smilingjane in reply to suztango]

Thanks Suztango, will look at this 😊

[smilingjane in reply to smilingjane]

Wow just read this. Interesting indeed.

Thanks again Suz 😊

[smilingjane in reply to suztango]

Hi suztango

Back from endo. He saw my past b12 results and folate.

Recommend b12 injection fro. GP.Looking forward to a result!

☺

[suztango in reply to smilingjane]

Excellent! Will you have regular injections? I hope so. It might take a few days / good few injections to start seeing a result. I felt very sleepy for 3 days after my first one. Then i felt amazing.

Really important to not let your gp or endo retest your B12 whilst on injections. You will have high serum results and the doctors could then assume you are cured. Retesting b12 is the number 1 reason for injections being taken away from people. And keep taking that folate - its a cofactor for b12.

It’s a good idea to join a b12 forum. There’s one on health unlocked. There’s also a b12 wake up group on fb.

[smilingjane in reply to suztango]

Hi Suz

Yes, no worries re B12 now. My endo recognises that I cannot absorb, so a lifetime thing...

Also I had an intestinal resection in 2016 whick apparently hinders B12 absorbsion. I am to have 6 injections over 2 weeks. Then 1 every 3 months.

Do you reckon that will be enough?

Also I am to take sublingual daily.

😊

[suztango in reply to smilingjane]

That’s great! So glad.

See how you feel. Some people find that one injection every 3 months is not enough. If you have neurological symptoms, then you’ll need B12 injections every other day until they go away which might take years (this is stated in the NICE guidelines - i found out my doctors totally ignore).

I am finding, at the moment, I need an injection every week. But I get bad headaches after 5 days. So I am now seeing if an injection every 5 days gets rid of my headaches. I self inject in between my NHS injections.

[smilingjane in reply to suztango]

Ah ... you buy it online?

[suztango in reply to smilingjane]

Yes. From a pharmacy in Germany

[smilingjane in reply to suztango]

Thanks for all that info Suz.

😊😊😊

[Hidden]

"This would indicate either hyperthyroidism or over medication."

Except when it doesn't because the feedback mechanism is broken!

[Pippah45]

I see you have used the words "I assume" in more than one post. My advice would be to never assume anything with the NHS about thyroid health. Good luck.

[smilingjane in reply to Pippah45]

Thank you Pippab 😊

[Sally56]

I agree with Suztango re your B12. I had a deficiency masked by my supplementing B12 orally. I ignored all advice and finally in desperation went back to the B12 results I had copies of an I had low / normal. I couldn't be tested because of the high B12 blood results, However I had every one of the B12 deficiency symptoms. Please google them, especially the Pernicious anemia and B12 deficiency Society in the U.K. It may or may not be you. I have an absorption issue. My bloods were high but I was not utilizing. I was hospitalised, then bed bound last year. I thought I was dying. I had nothing to lose so I began self injecting in February (you can buy B12 and needles OTC in Australia) and I am sitting up, going for small walks. I was able to raise my T3 only (No T4 as I have conversion issues) that I couldn't before because of the B12 deficiency. I am not a Doctor, I am a thyroidless, B12 deficient patient. Good luck.

[smilingjane in reply to Sally56]

Sally thank you so much for that.

I feel alls falling into place now.

Out of interest, if I stopped my b12 sups 3 weeks ago and theres still some in my bloodstream, does that mean that I shouldnt be getting symptons now of liw b12?

[suztango in reply to smilingjane]

You can have symptoms of B12 deficiency with low in range B12 results if the B12 is not being utilised in your cells. E.g. Being folate deficient can do this, as B12 needs folate to work.

[smilingjane in reply to smilingjane]

Also to say that I've just been reading ... and it seems that if you have had intestinal surgery which I have it, can effect B12 absorbsion .

Interesting!

[suztango in reply to smilingjane]

Yes exactly

[Sally56 in reply to smilingjane]

Hi Jane, if you have an absorption issue then blood readings are meaningless. If you have taken supplements then it would take 3-4 months before a true reading of your B12 would be seen. But even then if there's an absorption problem, that happens in the stomach and intestines, then B12 food and B12 oral supplements are useless as well. There's many reasons why you may have an issue and I see you've had intestinal surgery which is a known precursor to B12 deficiency. Also if you already have one autoimmune (thyroid?) there's a higher chance of another P.A. Pernicious anemia. Do you have B12 deficiency symptoms?

[smilingjane in reply to Sally56]

Hi Sally

Thanks for getting back 😊

My symptoms are extreme constant fatigue, light headed when standing, vertigo and tinnitus and loss of appetite and others.

My B12 results were 209 3 years ago and the only other test recently was over 500. I had only been taking the sublingual for around 4 weeks.

Do you think the Supps brought the blood result up? If so does that mean my symptoms should have lessened do you think? I am not quite as weak as I was last year . Now for example I can open a bottle.

Also, if B12 stays around in the system, am wondering why, when people have injections that they need to be frequent?

It's all very confusing ...

[Sally56 in reply to smilingjane]

If you can't absorb for some reason then injections are the only way to get B12 in. I'm in Australia, what is the range for the result of 209? B12 is stored in the liver if it goes through the gut, but if injected you will wee out what you don't need. However you need to be in the high dose to reverse neurological damage hence the frequency of injections. The supplements would have given a serum level quite high, but it is not an indication of what is getting in. Doctors usually only go by B12 serum and Active B12, which is totally skewed by supplementation (including multivitamins). And yes, very confusing.

[smilingjane in reply to Sally56]

How interesting, thanks so much for this. Particularly helpfull as I am going to see my new endo today.

The ranges for the B12 were something like 145 - 575.

Thanks again Sally.

I will let folk know how I get on today. x

[Sally56 in reply to smilingjane]

Great Jane. Good luck.

[smilingjane in reply to Sally56]

Thank you Sally!

[smilingjane in reply to Sally56]

😊

[smilingjane in reply to Sally56]

Hi again Sally

When you say oral supps are no good with absorbsion issues fo you mean sublingual too?

[Sally56 in reply to smilingjane]

Yes, only B12 injectables are not required to be absorbed in the gut.

[smilingjane in reply to Sally56]

Ah ... I didn't know that.

Mind you, I read that sublinguals can be absorbed through the tissues in the mouth. Is that wrong?

[helvella in reply to smilingjane]

Over on the Pernicious Anaemia Society forum, this answer, slightly reworded from time to time, is fairly definitive:

fbirder

4 months ago

No. The B12 molecule is too large, and too hydrophilic to cross biological membranes unaided.

All the studies that compare them say that you absorb about 10 mcg from a 1000 mcg dose.

That strongly indicates that B12 is not absorbed sublingually.

The studies show about 1% of an oral dose of 1000 mcg is absorbed across the gut.

If 10 mcg is absorbed sublingually, then 990 mcg is swallowed. It becomes an oral dose. So you would expect about 1% of that dose to be absorbed from the gut, to give a total of 19.9 mcg absorbed. But you don't - you just get the same 10 mcg as if you'd swallowed all of the dose. The simplest interpretation is that you have swallowed 100% of the dose and none of it is absorbed sublingually.

In an amazing coincidence, the maximum amount of an oral dose of B12 that people without any absorption problem can absorb (using Intrinsic Factor) is about 13 mcg. Which is almost exactly what people with PA are supposed to be able to absorb passively and almost exactly what is supposed to be absorbed sublingually.

Occam's Razor says that the obvious explanation is that all of those studies have measured the absorption of oral B12 via the IF method.

healthunlocked.com/pasoc/po...

[smilingjane in reply to helvella]

Helvella, Thanks for that. 😊

Is there a short answer to the difference between pernicious amenia and inability to absorb b12, or is it the same thing?

[helvella in reply to smilingjane]

Pernicious Anaemia is usually regarded as being due to inability to produce Intrinsic Factor which is required to absorb B12.

But if you cannot absorb B12 for another reason, a classic being after surgery which removes critical parts of our guts, the effect is exactly the same. No, or virtually no, B12 is absorbed.

Have a look here: pernicious-anaemia-society....

[smilingjane in reply to helvella]

If my b12 result is 537 does that mean I am absorbing it? Or is that a silly question? 🤔

[Sally56 in reply to smilingjane]

See Helvella below for explanation of sublinguals.

[Alexanderl]

Hey. I just joined and looking for an endocrinologist in London so can you say which one did you choose? What do you think about functional doctors? Thanks

[smilingjane in reply to Alexanderl]

Hi Alex

Mines in Notts. I am travelling from Newcastle!

If you PM me next week I can say how it went. then if you are prepared to travel .... Only asking g you to msge me cause I could forget!

Re functional practitioners. I dont know much except that they are not usually medics. I think the fact that they are heavy on blood tests and spend a lot of time with you says a lot.

Are you aware of the Optimal Health Clinic in London? They are specialists in CFS if you look on their website it will give you a clear picture of a good func tional practice.

Take care 😊

[Alexanderl]

No I'm not, I'll check it. Thank you so much I appreciate it and good luck!

[smilingjane in reply to Alexanderl]

Thank you 😊

[Thyb]

Wow I get those symptoms Scrumbler and I only take 50mcg levo every second day...200mcg a week. As requested by Endo starting tomorrow I take 25mcg, following day 50mcg....so upping dose to 275mcg a week. Those tabs don't agree with me and over past couple years have tried all brands so now I just stick to Actavis. Lockdown doesn't really affect me as I rarely go out cos too tired.

[Thyb]

If the Endo is any good I would sure like details please. Good Luck and take care

[smilingjane in reply to Thyb]

Hi Thyb

P. m me on Friday and i will let you know!

Jane 😚

[Thyb in reply to smilingjane]

I'm new on site this Month Smilingjane what does p.m. mean? (Private message or?)

[smilingjane in reply to Thyb]

ha! yes ...

I think you just press my logo to get into my profile and you will have the option from there.

Any probs give me a shout 😊

[Thyb]

Yes Cortisol525 113-456 nmol/L. I just put a new post up as my GP very surprisingly rang me to go to Surgery for a B12 injection...

BUT they have Never checked My B12 ever!! I simply put an online request last week to ask for the Best B vitamin supplements plus extra InvitaD3 Ampoules which I know I need now that I have blood results from BHM. New post has 'all thyroid/some vit levels etc

[Thyb]

9:30am...All results are on new post couple of hours ago