Hi all,I am new here. I've been unwell since christmas with severe b12 deficiency but when attending the gp last week with swollen lymphnodes in my chin and armpit he told me he thought my thyroid felt enlarged. He is sending me for an ultrasound scan. I will post my latest thyroid level. It is on the lower end but I do have alot of the symptoms, which have no gone after my b12 treatment. I asked the Dr if it is possible to have symptoms at this level and he didn't feel I would as its classed as 'normal'. I don't know if it's just me but surely being so near a cut off could potentionally mean you would get symptoms? As ever body is different and all countries have different ranges? I have previously been more in the middle of the range at 2.45, 18 months ago. At Christmas I was 0.5 and now 0.799. What do people think or what have your experiences been? Thank you 😊
New to it all: Hi all,I am new here. I've been... - Thyroid UK
New to it all
welcome to the forum
How low was B12
Was test done to see if cause is Pernicious Anaemia
Are you now having loading B12 injections
Have you had folate, vitamin D and full iron panel test including ferritin
Pernicious Anaemia is autoimmune
Having one Autoimmune disease makes it more likely to have another
For full Thyroid evaluation you need TSH, FT4 and FT3 tested
Also both TPO and TG thyroid antibodies tested at least once to see if your hypothyroidism is autoimmune
Very important to test vitamin D, folate, ferritin and B12 at least once year minimum
Low vitamin levels are extremely common when hypothyroid, especially with autoimmune thyroid disease
About 90% of primary hypothyroidism is autoimmune thyroid disease, usually diagnosed by high TPO and/or high TG thyroid antibodies
Autoimmune thyroid disease with goitre is Hashimoto’s
Autoimmune thyroid disease without goitre is Ord’s thyroiditis.
Both are autoimmune and generally called Hashimoto’s.
Significant minority of Hashimoto’s patients only have high TG antibodies (thyroglobulin)
NHS only tests TG antibodies if TPO are high
20% of autoimmune thyroid patients never have high thyroid antibodies and ultrasound scan of thyroid can get diagnosis
In U.K. medics hardly ever refer to autoimmune thyroid disease as Hashimoto’s (or Ord’s thyroiditis)
Recommended that all thyroid blood tests early morning, ideally just before 9am, only drink water between waking and test
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
Post all about what time of day to test
healthunlocked.com/thyroidu...
Testing options and includes money off codes for private testing
Medichecks Thyroid plus BOTH TPO and TG antibodies and vitamins
medichecks.com/products/adv...
Blue Horizon Thyroid Premium Gold includes BOTH TPO and TG antibodies, cortisol and vitamins
bluehorizonbloodtests.co.uk...
Medichecks and BH also offer private blood draw at clinic near you, or private nurse to your own home…..for an extra fee
Only do private testing early Monday or Tuesday morning.
Tips on how to do DIY finger prick test
support.medichecks.com/hc/e...
Thank you for your reply the information is really helpful. I tested negative for PA
I finished loading doses 6 weeks ago now. My folate, ferritin and vit d have all been tested, within normal range but I've been working on increasing them since they were tested so things were more optimal for my b12. I have only had tsh done, my gp didn't seem bothered about the other testing just told me to get the scan done. I will look into the private testing links you've posted. He's written 'simple goiter' on my consultation notes. I did ask what the causes could potentially be and if symptoms would show at my level and the reply was get the scan done and we will find out so not all that helpful.
My folate, ferritin and vit d have all been tested, within normal range but I've been working on increasing them since they were tested so things were more optimal for my b12.
Please add what original results and ranges were
Exactly what vitamin supplements are you taking
Retest with thyroid and thyroid antibodies
Are you going to have further b12 injections? Normally they are given every 8 or 12 weeks. However many people require them more frequently. The tests for PA can only show you have PA - they cannot show you haven’t. This is because at least 50% of cases are not detected by a test!
They want to retest my level at 10 weeks and then a decision will be made about injections apparently, I know its absorbtion as I don't need any of the other criteria so I will be requesting further testing as I know there are gut bacteria that can cause it that would need treatment. I had the IF and that's negative and informed my gp just because its negative doesn't mean it is as its unreliable, he agreed but then proceeded to prescribe me an oral supplement in fear of "overdosing'. Discussed that being impossible and I told him I wouldn't be taking the oral supplement as it won't do anything. I have written a long, evidenced based letter to my surgery around having more frequent injections also. Its like fighting a battle and at some points I've felt too unwell to do it. If the gp don't cooperate I will get private injections or SI.
Great. You clearly know about b12 and your GP, somewhat predictably, doesn't. I would decline the b12 serum test because NICE recommend against retesting but more importantly a GP might declare some lousy level of b12 as adequate and worse your cured. Something most GPs don't know is that effective treatment of b12 g3nerally requires supra optimal serum levels such as over 1000. The reason for this is not known. Anyway the correct and simplest criteria for treatment is reduction and control of symptoms.
If you go down the SI route then Wedgwood on the PA site is gold mine of practical advice.
Best wishes.
I have learnt everything about b12 deficiency through my own research, this forum and also a group on Facebook that I joined. Otherwise I would be CLUELESS and the gp would be spinning me every line going to get out of giving injections. If they do offer me continued interval injections I'm going to have some inbetween if I can feel myself struggling and just attend for the one they offer aswel. I've spoken to many people who have had b12 deficiency and they've never been given a reason why they have it, most likley PA or malabsobtion and have been left to it, it's actually worrying. My initial b12 was measured as an active level of 16, 25 being classed of deficient, so I was really low. I had it done in hospital and this is what they tend to go for. I feel the gp will try and do serum at this check but I'm going to request an active level and use the point of how it can be compared to the previous one if its in 2 different measurements. I think my surgery just seeing me as an annoyance because I keep going in and challenging things that they say. When discussed my b12 with a gp 2 weeks ago he kept saying "it's not my speciality" and as I am under neurology to discuss it with them. I pointed out it's also not their speciality so passing the book to them won't make a difference. I don't think he knew what to say. I self referred myself back to neuro, as i was under them for something seperate while ago and they are really good so I know my consultant will be supportive with what I need an hopefully the gp listens.
Well done ….keep up the great work
B12 deficiency is as much misunderstood as thyroid
I now self inject B12 as GP refused to contemplate the idea. Probably you'll have to do this too. It's worth me saying that I'm having a hard time differentiating between B12 deficiency and underactive thyroid symptoms - they can overlap. I've been SI every other day 3 months so I think what is left is likely to be underactive thyroid. But on the other hand, neuro B12 deficiency symptoms can take a long time to heal. Keep juggling both!!
Yes when I've read about the symptoms some of them are the same this is why I was questioning whether a reading of tsh nearer the lower limit could be causing me symptoms. Don't get me wrong the loading doses of b12 plus an extra 3 I managed to get out of them did improve lots of my symptoms but I know I need more frequent injections for sure. I sent a long letter into my gp about more injections and they contacted my neuro consultant and have asked her to see me to make a decision 😣. Its like they don't want to do it incase anything comes back on them, never mind me being unwell until I can get to see my consultant. Honestly it's a battle but not one I'll have to fight for much longer when I take things into my own hands
Hi Hgsn, welcome to the forum. 
The TSH itself doesn't cause symptoms whether it is high or low. That's not it's job. It is just a chemical messenger between the pituitary and the thyroid, telling it when to make more thyroid hormone. And that's just about all it does.
Your TSH is so-called 'normal' (euthyroid) - you wouldn't want it anyy higher than 2. But the problem with the TSH is that it's unreliable. For example, the level varies throughout the day, but doctors turn a blind eye to that. It's highest before 9 am, then drops sharply to its lowest around midday. The, slowly climbs to its highest around midnight. So, the idea that it can tell you your thyroid status no matter when it's tested is just ludicrous. But doctors have these set ideas in their heads, which they don't even understand and couldn't explain, and they don't want to know any better.
Plus, TSH is a pituitary hormone, so the pituitary has to be working 100% correctly for the TSH to be as reliable as doctors think it is. And that's not always the case. TSH can be low but so can thyroid hormone levels at the same time. But, where ignorance is bliss... And if they knew more about it they would have to diagnose many, many more people, and that's the exact opposite of what they want!
Thank you for this. When I tried to ask questions about it during my appointment I got the idea its not understood enough by GPS but can't say I'm surprised because neither is b12 deficiency so I've had the battle around under standing with that also 😣. If the tsh is an unreliable way to monitor will the ultrasound give more answers around what's going on or will they just say yeah its enlarged and then nothing further will happen?
Probably the latter. They don't know enough about it to draw any conclusions from that.
Get your b12 sorted out too. Natural factors has a 5000mcg sublingual supplement that is incredible to get you out of the danger zone as for thyroid sorry are you presently taking thyroid medication if so how much and ehat kind.how is your energy.
I'm not currently on any treatment for my thyroid as my gp states its in normal range and he's only just identified it feeling enlarged. Yes my b12 will be sorted one way or another but I'm thinking about SI. I'm struggling with fatigue at the moment but I think that's my body just recovering and learning to manage things again.
Thank you to all you fighters.
Where to buy T3 / b12 level too high?
A huge thanks to Thyroid UK for showing me how to deal with my GP!
GP agreed to raise levo dose. I'm amazed really.
New here - need further tests?
