Latest results and my plan...

[Spritze]

Hello

I am symptomatic of low B12 and/or Hypothyroidism. GP isn't concerned and advised me to take B12 supplements, but will retest Thyroid in 6 months time.

My plan is to raise B12, Ferretin, Foltate, and Vit D to the top 25% of range and then see how I feel and redo TFTs. I am happy to pay for B12 injections privately if I can't raise it enough with tablets as GP won't be prescribing.

Can anyone see anything glaringly obvious in my hotpotch of results ? The first one was pre supplement, the others could have been with or without all sorts of supplements and the last two were both 9am, no supplements for 3 weeks, only water to drink.

I have just read that Intrinsic Factor should not be tested after starting B12 supplements ... 😐

Many thanks for any suggestions

Edited to add ; I am undiagnosed as yet

[Spritze]

Here are the results

table

[Kowbie]

thought I would just answer you as I didn’t see anyone else had , all I can say looking at your results is that you look like your really under medicated, I hope someone soon replies to you

[Spritze in reply to Kowbie]

Thank you - sorry my post is not clear - I am undiagnosed as yet. My GP initially was only interested in TSH and now my T4 has gone into normal range I think she will be even less interested!

[Kowbie in reply to Spritze]

Oh sorry, but even so your t4 seems very low to me , as well as t3 hope someone else messages you to help , good luck wouldn’t mind if you kept me posted of how your doing, big hug x

[FancyPants54]

Hi

Your Free Ts are really low and your TSH is low. What time of day did you test? TSH drops in the afternoon. It's highest in the morning so next test make sure it's by 9am at the latest.

Your B12 is horribly deficient. B12 specialists say anything below 500 is deficient. The range is far too wide. But once you start taking supplements it screws up test results horribly. And on top of that, you don't know if that B12 is reaching your cells. With NHS test results like those early days results you should have been given injections.

I raised my B12 to the top of the range with sublingual supplements and then spray supplements. But I didn't feel any better. I have very bad peripheral neuropathy which can be B12 related so I joined the pernicious anaemia group on Health Unlocked, learnt more about it and then bought my own supplies. I now inject myself every other day. It's hard to say if I feel better. There are days I think the neuropathy is a bit better and then times like last night where it is so painful I can't sleep. But that can be a sign of healing. I have to wait at least 6 months before I might know if it's helping that. But I do feel as if it has helped to stabilise my thyroid meds. So it was worth the experiment for that alone.

[Spritze in reply to FancyPants54]

Thank you - I have joined the PA group and wish I knew then what I know now ! Tests were all morning ones, the last two or three early morning. Yes my T results are off and not sure what is going on which I why I want to get B12 up and just do one thing at a time. Now you are injecting do you check your levels at all or just do every other day ? Can you do EOD indefinitely ? Did your GP ever pick up B12 deficiency ?

[FancyPants54 in reply to Spritze]

You can indeed do EOD indefinitely because B12 is water soluble so what you don't need just gets pee'd out. It's not harmful. Most people use EOD until they feel symptoms have gone away or not improving further and then work on finding a dose routine that doesn't allow symptoms to come back. But my peripheral neuropathy means I just keep doing EOD for as long as it takes to see improvement. I'm prepared to give it a year. If I've not improved then, then I will assume I'm not going too and B12 isn't the cause of my neuropathy. No use testing levels now I'm injecting. They will be sky-high. I want to ensure my levels are high enough to flood my cells. GP would not have picked up deficiency because my blood levels were always in range and not at the bottom either. But that doesn't mean it wasn't there. I've never been tested for pernicious anaemia either. I will pursue that at some point when I have the fight to bother with it.

Your TSH is too low for someone with such low Free results. So that means someone should be investigating your pituitary gland to see if it's OK. It doesn't matter if your thyroid is fine if your pituitary can't tell it what you need. But it's a good idea to get all your vital vitamins and minerals up to top levels first. However, that just affects conversion and not the TSH or the pituitary. I'm not that up on this term, but a low pituitary might be called Central Hypothyroidism. Search up on that here and elsewhere and see if you can get that confirmed as correct and then look into it so that you can talk to your GP with knowledge. I think a GP is pretty unlikely to pick that up on their own these days.

[Popscicle in reply to FancyPants54]

You are right that we just pee out excess B12. But there are also storage areas in the liver which can store enough to last 3 years!

Re your peripheral neuropathy - that must be awful for you I’m so sorry. Recent research has shown that one of the causes of peripheral neuropathy is poor circulation (which is why diabetics are prone to it). If it’s in your legs you need your peripheral pulses checked which is done with a thing called a Doppler machine (same idea as the thing used to listen to baby’s hearts in pregnant woman). This assesses whether or not the blood is getting to everywhere it should do but also assesses the strength of the pulse in each area which is assessing the strength of the blood flow. If flow is poor there are medications that can improve flow. GPS should Hv Doppler machines but I guess most won’t be very good at interpreting them so a referral to a vascular surgeon would be better. Just an idea!

[FancyPants54 in reply to Popscicle]

Thanks. I’ve not even told the GP I have this problem. They left me high and dry with my difficult hypothyroidism, and a few other things so I pretty much ignore them unless I need something. I do go to a foot doctor though, because I can’t cut my ingrown toe nails properly because I can’t sit in front of myself as it were🤣

He used one of those machines to check blood flow and circulation on my first visit. Both were fine.

[Popscicle in reply to FancyPants54]

See if he’ll check your pulses biannually or whenever you’re there just in case a circulatory problem develops. Again - just an idea! (But v sensible)!

[FancyPants54 in reply to Popscicle]

I'm due to see him in 2 weeks. I'll ask then.

[Mixteca in reply to Spritze]

I'd post on PAS forum ASAP with (clearer) blood test results and get all relevant tests done for PA BEFORE you start supplements or injections. Members will advise you well.

With neurological involvement, BNF best practice is to inject EOD until no further improvement, as already mentioned by FancyPants. Now is your best opportunity for a correct diagnosis.

[Popscicle in reply to FancyPants54]

Can I just ask the strength of your B12 injections? Normally when B12 is low, B12 injections are given every other day until B12 is satisfactorily raised and then further treatment depends on the cause. If it’s pernicious anaemia injections are then given 6monthly. If it’s thought to be dietary B12 is taken orally. In your case you say oral B12 didnt help you so injections are the right choice for you. But I just query the strength tho am assuming they’re a much smaller dose than the twice yearly ones.

[FancyPants54 in reply to Popscicle]

It’s 1mg. It’s the normal dose. Those with peripheral neuropathy should inject EOD indefinitely until all symptoms are gone or improvement stops. And that can take a long time.

[Popscicle in reply to FancyPants54]

Well you can’t go wrong because you’ll either store any excess or pee it out. Hope it’s not too expensive!

[FancyPants54 in reply to Popscicle]

It's not expensive compared to thyroid medication and all the attendant private medic appointments needed to get it. I have to pay for that too.

[FallingInReverse]

I was waiting too for others to respond as I am not familiar enough with bloods where antibodies are in range.

That being said - you said you are symptomatic… what symptoms?

Also, I’ll reiterate how important it is to change one thing at a time, and to track symptom changes and blood tests accordingly.

Whereas optimizing vitamins is a very good idea while you wait for your next t bloods, it might be helpful to isolate the change and the impact with changes in symptoms and how you feel. This rule is critical with t hormones, but also important even with vitamins. You should know if optimizing XYZ made you feel better, and therefore what level of XYZ you feel best at.

If you dont do this, you will be at a loss as to what’s worked and what to do next. Which is why it’s hard to evaluate what’s happening across your blood tests.

ps, assuming those Ts are FREE T4 and FREE T3, right?

[Spritze in reply to FallingInReverse]

Hi Chronic Symptoms are : Sore muscles every day which tire quickly, muscles injure easily and take a very long time to heal, no stamina physically or mentally, poor memory, no concentration, very high anxiety and depression, nasal congestion, dry skin, poor nails. More recently breathless. Yes these are free T3/T4. Definitely want to keep track of changes thank you

[Popscicle in reply to Spritze]

What age are you? I was just wondering if the perimenopause / menopause were exacerbating your symptoms.

[Spritze in reply to Popscicle]

Hi thank you, I am 60 and menopause has been well managed with HRT which was pretty much instigated to help with bone health over 10 years ago so I don't think it is oestrogen related..... but it could be ... 🤷‍♀️

[Popscicle in reply to Spritze]

Are you still on HRT? Our oestrogen levels vary with time. If you are still on HRT it might be worth getting your oestrogen level checked. This would be to see if you’re absorbing it properly. Gps tend to fight requests for oestrogen levels but will do them if it’s for absorption levels.

If you’re not on HRT and you discontinued long before these symptoms started then it’s not relevant. If you recently stopped hrt it is worth checking levels.

Some gps seem to think that hrt is just for 5 years where as it can be taken for life if that’s what you choose. Afterall it benefits cardiovascular health, bones, and reduces the incidence of dementia by 23% if you’re taking oestrogen AND progesterone and by 32% if you’ve had a hysterectomy and are just taking oestrogen.

[Bearo]

it looks like you have Central hypothyroidism - your thyroid gland may not have anything wrong with it but the problem may lie with the pituitary. The pituitary sends a message to TSH if the thyroid hormones (free T4) falls too low. The TSH rises on receipt of the message and creates more T4. Your FT4 is below range but your TSH hasn’t risen….something has gone wrong with the message from pituitary.

You will need to be referred to an endo to get a diagnosis of Central hypothyroidism. Unfortunately the medics know little of Central hypothyroidism, endos included. Fortunately the treatment - Levothyroxine - is the same for primary and secondary/central hypothyroidism.

So the problem is getting a GP to see past the in range TSH to the below range FT4 results and refer you to an endo.

Thyroid uk has a list of recommended endos, but I don’t think the list extends to central diagnoses.

[Spritze in reply to Bearo]

Thank you Bearo this is what I first thought, however what has happened to my November 2023 T4 results ? They have jumped up and my GP now reports all 'in range no further action'. Is this common with secondary Hypothyroidism ? I'm so confused !

[Popscicle in reply to Bearo]

I’ve decided I must Hv central hypothyroidism. This is because my periods stopped very suddenly in 2004 but having 4 sisters and a mum, none of them had an early menopause at all. Then in 2016 I was diagnosed with gross hypothyroidism accidentally (the only symptom I had was tiredness. My weight stayed at 49kg tho has dropped since). My antibodies were all negative. But I don’t know what it means because as far as I understand, the treatment is the same. The endo never said anything about anything really!

[Bearo]

Try another9am test in a few months time. If your T4 goes under range again ask GP for a trial of Levo or insist on being referred to an endo to consider Central hypothyroidism.