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!
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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?
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.
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).
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.
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.
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.
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.
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!
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.
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 😚
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.)
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.
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.
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.
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.
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.
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?
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.
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?
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?
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.
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.
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.
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
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.
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.
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
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I appreciate it and good luck!
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