Thyroid issue? - so confused

[Bambini83]

Firstly, apologies for the length of the post.

First stated feeling unwell Nov 2019. Symptoms bloating, fatigue lower back pain and poor circulation. Progressed to tingling/pins and needles in mainly feet also hands. Bloods and stool sample all clear and dismissed by GP as anxiety. Paid privately for pelvic and transvaginal ultrasound which ruled out gynae issues. GP continued to dismiss symptoms as perhaps post viral. Tried to improve things through diet and supplements to no avail.

April I had change in appearance of my right nipple. Seen in breast clinic and all clear. May this year I had a couple of night time visual disturbances resulting in blurred vision in left eye. Had started with pressure type headaches and neck pain. Saw nurse who called ambulance to send me to A&E as resting heart rate was 180. ECGs normal, A&E weren’t concerned with other symptoms so referred back to GP who dismissed tachycardia as anxiety and referred me to neurology. I assume to look at potential MS. Still awaiting an appointment and min waiting time 5 months.

In June I found a lump on my neck. Referred on 2 week wait and had ultrasound last week. Found 2 ‘lumps’ on thyroid. Assured these are not sinister and there are ‘no signs of any cancer’. Referred to endocrinology but not being seen until mid September.

I’m now wondering if some if not all of my symptoms are thyroid related. I do feel much worse around ovulation and menstruation. More recent symptoms include reflux/indigestion, dry skin and pruney fingers, dry mouth with nasty taste and white tongue with central red patch. I remain fatigued and still sensitive to cold. Tingling remains but not as bad as it has been.

I’m confused as a lot of my symptoms seem to fall into underactive thyroid but I haven’t gained weight and have had increased HR which I understand to be overactive thyroid symptom? Also my TSH level has been checked twice and normal at 0.76.

My fear is that these issues will be deemed as not related to my thyroid. Everything I read suggests that the NHS bloodwork parameters mean lots of people aren’t medicated when they should be and lots of those medicated continue to feel unwell.

I know I should just be grateful to have benign ‘lumps’ and I really am so thankful for that. I’m just so fed up of feeling unwell and don’t feel hopeful that I’ll ever be well again. We’d hoped to have a second child in the near future and I fear that won’t be an option any more.

If you made it this far, thank you!!

Apologies this is a duplicate thread - I don’t know how I go about getting it removed?

My sympathies. When you are suffering, you really want to find a cause and not knowing is the worst feeling.
It is good that your nodules are benign and let me assure you that benign nodule do not effect your thyroid function, I have had them in the past and even had surgery and had half my gland removed. Thyroid nodules mostly do not cause symptoms and if your thyroid is normal (.76) you do not have thyroid issues.
That said - look into B12 deficiency, because your symptoms including anxiety, pins and needles, weight gain, elevated heartbeat and having thyroid nodules all point to it.
Either your doctor has not done a test yet or has ignored the test because NHS b12 parameters are really low. You need levels above 400 to feel normal. NHS says anything above 150 is fine.
So look into symptoms, you will find that you have most symptoms ( at least that's what I see by your post). Get a B12 test and you are deficient start supplements because once your levels are below for a few months then you cannot revert back some of the damage.

Thanks Literally. Yeah I thought if my TSH shows normal is it likely to be thyroid. My B12 level was checked last Nov and I assume this May. I did request my results from last Nov and from memory I think my level was just over 400. I have been supplementing with a B12 spray for a number of months but I don’t know if that would help. My ferritin last Nov was 36 which was deemed normal but I’ve been taking liquid spatone iron supplement for a number of months also. My vitamin D level has never been checked and GP refused to check it. I have tried to finger prick test myself but I can’t get enough blood for the sample. As far as I’m aware my folate has never been checked. Staring to lose hope of feeling normal again! Perhaps it is MS after all.

Sorry meant to say not likely to be thyroid

Another one saying B12 and don't accept a statement that it is 'fine'. The bottom of the NHS range is barely enough to keep you alive.

I wonder if the endocrinologist is likely to test this again? Would a level just over 400 be ok? I’ve been spraying twice daily with B12 for a few months in case it would help but it doesn’t seem to have sorted me out.

400 level of b12 can keep you afloat. It's borderline. Now if you have long heavy periods then b12 will deplete fast and you need to supplement specially if you are mostly vegetarian and don't consume dairy products often.
As for the b12 spray- in order for your body to absorb sublingually the spray should stay in your mouth for good few minutes and the spray is gone in seconds. I wonder how much can you absorb. In comparison sublingual tablets that stay in your mouth for longer are better.
Our daily requirement for b12 in 1.2 mcg, if I take 100 mcg it does nothing. So instead I take 400 mcg just to feel normal. I feel better if take 600 mcg. That is the problem with b12 - low absorption.
Your ferritin levels are also borderline. Spatone is good but it would take a long time to have any effect.
Your consultant is unlikely to do b12 test. If you want you can get it done private , superdrug does it for 40 pounds.

Thanks Literally. I hadn’t realised that about the spray. I need to look at B12 further I think!

Forgot to add- if you are planning to get b12 levels tested and you are taking folic acid (b9) currently then stop taking b9 for a good while before your test as high levels of b9 in your blood can mask your b12 levels i.e your b12 levels will come higher than they actually are.

You can get vitamin b12, vitamin d and full thyroid testing from Thriva online, it’s a simple at home blood prick test. If you struggle to get the blood coming, holding your hand in warm water beforehand (or I place my hand on a hot water bottle which really helps) and clenching your hand several times helps.

Thanks both. I’ve found private blood test that I can have taken locally so I’m going to order that. I’ve never supplemented folic acid. It’s all such a mine field - just wish the medical professionals were more clued up on all this. Wishing I’d started my own investigations much sooner.