Oh dear 😤: I’ve spent an annoying few weeks... - Thyroid UK

Thyroid UK

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Oh dear 😤

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I’ve spent an annoying few weeks feeling dizzy, falling over, being sick and slurring my speech, feeling confused. No fuel in tank at all. BP spiking inexplicably. Still trying to get this sorted out at Primary Care Level as waiting list in secondary care in NW England is longer than my life expectancy. I kid you not.

Had bloods done in ED last week when I fell over on the prom and was presumed drunk in charge of an ice cream. Declared sober and and returned to care of GP while awaiting for neuro appt at local private hospital.

I would have bet my last penny that my thyroid levels were ‘off’. GP has just phoned to give me blood results and my thyroid levels were good - as usual. Had been off biotin for two weeks when these bloods were done. Everything else ok but B12 twice over normal range, Folate over range, magnesium twice over range. Just amazed they did magnesium.

Do you take supplements? Yes. Just the usual ‘B’ complex (Thorne’s Multi B. Just 1 tablet), magnesium (400 mg) vitamin D. She tells me to stop all supplements until further notice. She doesn’t think the supps have anything to do with the problem but I don’t need them, except the Vit D.

Husband is euphoric. He’s always been of the view that I take too much ‘stuff’. Supps now in bin. Husband smiling.

My vitamin B12 was 345 pg/ml last November so decided to take the Thorne B ‘complex - 400 mg a day. I’m struggling to understand how my result now shows 1800 pg/ml. This is quite an increase in 6 months - especially considering I am at risk for low B12 as I take PPIs, antidepressants and an opioid.

I am struggling to understand this. In fact, I’m struggling to understand everything at the moment, such is the level of my cognitive deficit and confusion.

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31 Replies

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Bearo2 years ago

Sorry no advice - just replying to say how much I enjoyed reading your post - it made me smile at certain points! Your ‘cognitive deficit’ does not show in your writing and you haven’t lost your sense of humour!

Star132 years ago

Have they done a brain CT or MRI and have you seen a neurologist?

• in reply toStar132 years ago

Now in hospital. Suspecting Guillain Barre. I hope not. 😞

birkie• in reply to2 years ago

Hi Llamedosx💗

Sorry your feeling so unwell ❤️ I love it how medical professionals see normal bloods and just switch off, even when we are showing symptoms 😠

I was rushed to hospital in thyroid storm after 12 months of trying to get my gp understand my symptoms, he kept saying menupause when it was actually graves disease 🤦‍♂️.

But when I was in I went over everything they did with a fine tooth comb, I asked what bloods were being done, what were the results of said bloods.. Why was I having this scan?

Ask every question you can it's your right👍

I found some medical professionals just came in took the blood didn't say much other than ... Hold your arm out, this will sting a bit... Leave😠 I'd honestly lay there thinking... Did Dracula just visit me? 😄 Well I don't let that happen now 👍

Some specialist can be intimidating and talk over you (what I found) I just stopped them and said "I'd like to ask a couple of questions if you don't mind"

There faces😄😄😄

Anyway I hope you get some answers to what's going on, it can be scary when you have no idea why your feeling the way you are❤️

Best of luck🍀🍀

• in reply tobirkie2 years ago

Thank you. You’ve made me smile 😍

Although I feel so unwell, I’m asking lots of questions. They just said:

“Are you medical?” ☺️

PRJ20• in reply to2 years ago

Me too (made me smile 🙂) Hidden ❤️ & birkie ❤️ and just wanted to say I second what birkie said and send you a virtual hug. 💞

I too hope it's not Guillain Barre but, ultimately, that you get sorted and get answers to your questions.

Good Luck 🍀 - Thinking of you ❤️🙂

• in reply toPRJ202 years ago

I’d never even heard of Guillain Barre until GP brought it up. He wrote an amazingly long and thorough letter to the hospital after Phoned them first, said that I needed immediate admission. I read the letter myself, in my notes, which they left on the trolley in A&E. GP said “ recent history and examination today strongly suggests possibility of Guillain Barre or MG. Needs immediate investigations”

Took me a while to figure out MG (Mysenia Gravis ) as battery in my phone was flatter than me.. I don’t know about these things. I’m not supposed to. I do know though that my thyroid levels are fine and my B12 and Folate levels are even better.

I also know that the tensions which currently exist between Primary and Secondary care are sky high and doing nothing to support patient health. 111 service is refereeing while patients are kicked about like footballs

Anyway, I shan’t be bothering anyone again.

PRJ20• in reply tobirkie2 years ago

Oh birkie ! 💉🛏️🧛🤪😅

Thinking of you, too, today as I know you've got/had your appointment with the specialist today and I hope you get your answers, too. 🍀❤️🙏

Blissful• in reply to2 years ago

I hope not too. You may not be aware that GB can be another "rare" side effect from the covid jab - it's just something to consider perhaps if answers remain elusive.

This is quite an increase in 6 months - especially considering I am at risk for low B12 as I take PPIs, antidepressants and an opioid.

Do any of the above contain magnesium? Is the opioid daily - one of the negative things with opioids in their flattening effect on our intestinal villi (nutrient catching hairs (imagine a sea anemone) - PPI medications are another impediment and thyroid patients particularly suffer symptoms of too much acid/reflux when the reality is we don't produce enough.

What about calcium, and the other electrolytes - are they being tested? What about kidney function?

Did the ice cream get treated at the scene

Marz• in reply toBlissful2 years ago

I too was thinking about the side effects of the j@b...

D-dimer test ?

• in reply toMarz2 years ago

GB has been a major s/e of j@b. Seldom reported in media.

Marz• in reply to2 years ago

Check MHRA Yellow card reporting system to see between 1-10% of side effects reported that are not reported elsewhere....

• in reply to2 years ago

Sadly not.

caledoniancat2 years ago

Have you ever had your adrenal function checked? If not it might be worth asking for this.

• in reply tocaledoniancat2 years ago

Ive asked about that. They may do a 9 am test but they’re not ‘into’ saliva tests 😔

caledoniancat• in reply to2 years ago

Blood test would likely be best, ideally the short synacthen test. Hope you get the answers you need and that you feel better soon. 🌸🌼🌸

• in reply tocaledoniancat2 years ago

Hello CC. Is it possible to have low cortisol and normal / optimal thyroid bloods:

TSH: 0.05

FT4 : 17 (12-22)

FT3: 5.9 (3.4 -6.8)

caledoniancat• in reply to2 years ago

I'm no expert so not sure, but if you are on levothyroxine (with or without T3) I think it could be possible, but if you have an adrenal issue such as undiagnosed Addison's disease, the improved thyroid function would speed up the clearance of the cortisol from the adrenals resulting in symptoms you cite but also leaving you exhausted and getting gradually worse. My daughter was started on levo as a teenager but within a 6-8wks she ended up in A&E and diagnosed with autoimmune Addison's disease within 20hrs. She was then taken off levothyroxine and prescribed daily hydrocortisone and fludrocortisone to treat her Addison's and has not needed anything for her thyroid since then. However, as she gets older the likelihood is that she may end up with autoimmune thyroid disease too, particularly as it runs in the family. The NICE guidelines specifically highlight "Do not prescribe levothyroxine if there is suspected:Thyrotoxicosis...Adrenal gland disorder or insufficiency".

In my daughter's case we had no idea that she had an adrenal disease until her symptoms were exacerbated by levo. It was a steep learning curve!

• in reply tocaledoniancat2 years ago

Very interesting CC. Thank you

2 years ago

Have been discharged from A&E after 24 hours. First seen by doctor 15 mins before ‘discharge’ (How can you be ‘discharged” from A&E when you haven’t ever been admitted 😞)

Bloods all good. Referred to endocrinologist as this is a ‘thyroid issue’. I refused referral and gave arrogant young doctor a quick quiz on what he knew about ‘thyroid issues’. Performed as expected. Never heard of Liothyronine., let alone its impact on TSH.

Now at home and still feeling ill.

Stay well peeps.

PRJ20• in reply to2 years ago

Have been discharged from A&E after 24 hours. First seen by doctor 15 mins before ‘discharge’ (How can you be ‘discharged” from A&E when you haven’t ever been admitted 😞)

🤷‍♀️ Maybe because they found out you weren't "medical"? (whatever that meant! 🙄) and just wanting to be a properly informed patient 🙌 (how very dare you question their 'paternalism' 🙇)

Yesssss! 👊 Power to your 💪&👄 Hidden 😊

Now at home and still feeling ill.

So sorry 😔 Look after yourself, rest and hope you find a way to feel better soon - take care. ❤️

PRJ20 x

• in reply toPRJ202 years ago

Thank you PRJ20. xx

jade_s2 years ago

Hi, do you want to join us on the pernicious anemia group? healthunlocked.com/pasoc

What you describe sounds very much like B12 deficiency, assuming they have ruled out stroke, G.B., etc. It is possible to have high blood levels and still be symptomatic of B12 deficiency. Please take a look at this symptoms page and how many apply b12deficiency.info/signs-an...

Low Cortisol is also possible. I would push for a fasting, early morning serum cortisol test. Sodium & potassium should also be checked - do you have any recent results for either? Potassium often spikes in adrenal insufficiency.

Absolutely insane how you have been treated. They really should have ruled out a few things!

• in reply tojade_s2 years ago

Thank you so much jade. I shall ‘come over’ asap.

I’ve just rescued the Thorne B Complex. I haven’t been taking 400 mcg B12 as I thought - it’s only been 100 mcg. I can’t figure how in 6 months my levels are as they are.

Likewise Folate. Thorne is 200 mcg. The ‘baby’ dose.

I feel quite overwhelmed that there’s a possible answer that no-one’s explored. Ty 😉

jade_s• in reply to2 years ago

Wow that's not high a dose at all. I wonder if some 'pooling' is going on. Not getting into the cells.

See you on the other side

• in reply tojade_s2 years ago

You sure will 😉

SeasideSusieRemembering• in reply to2 years ago

Llamedosx

Just the usual ‘B’ complex (Thorne’s Multi B. Just 1 tablet),

Thorne don't have a supplement called Multi B.

I’ve just rescued the Thorne B Complex. I haven’t been taking 400 mcg B12 as I thought - it’s only been 100 mcg. I can’t figure how in 6 months my levels are as they are.

Likewise Folate. Thorne is 200 mcg. The ‘baby’ dose.

Your Thorne supplement is likely to be either B-Complex#6 or Stress B-Complex as both of these contain the amounts of B12 and folate that you say yours does. The 400mcg B12 is in the Thorne Basic B which is the one recommended here, we don't recommend the others, they have too much B6 as the amount suggested for long term supplementation is no more than 10mg.

• in reply toSeasideSusie2 years ago

Thanks for putting right my mistake. Yes. I tried to post an image of the one I’ve been using but sadly it wouldn’t post.

thorne.com/products/dp/stre...

This is the one I’ve been using. 😔

• in reply toSeasideSusie2 years ago

Hello again SeasideSusie . I’ve made a stupid mistake. I recall Thorne being recommended on here. When I later decided to try it, Amazon were no longer stocking it. I went to EBay and bought 2 x the wrong one 🙈. Just looked at EBay again and they no longer sell the Basic one. How stupid of me.

Thank you.

Edit:

Years ago when I was young and had PMS symptoms, I used Natures Best B50 complex. That was a ridiculous formula really but even that only had 5 mg B6. Seemed to sort my PMS though .

This has been a salutary lesson to me to read formula/contents carefully 🙈

Have just had to eat a Magnum to calm my panic. Looked at the wrapper but it all seemed pretty innocuous.

PRJ202 years ago

You're very welcome Llamedosx 🙂 I can concur with and testify to this, too, sadly 👇

Still trying to get this sorted out at Primary Care Level as waiting list in secondary care in NW England is longer than my life expectancy. I kid you not. As well as this 👉 I also know that the tensions which currently exist between Primary and Secondary care are sky high and doing nothing to support patient health. 111 service is refereeing while patients are kicked about like footballs

I'm in the NW, too (Merseyside), and unfortunately registered with a GP practice that's recently been one of the 10 (or may have been 12) in the area as "Requires Improvement" (and not for the first time ☹️) by the CQC. It made for pretty grim reading with their complaints system being non-existent (i.e. They hadn't even bothered to display any notices or leaflets of how/who to complain!); their return check visit report being only marginally better; and as for their prescribing record, when I followed a link I saw on a post on here recently, specifically re prescribing for any form of hypothyroidism, it was non-existent as far back as I could go (2017). As for on-line access for patients to their files, again in the last CQC report I saw this mentioned, only just over 1,000 out of a 7,000+ list registered with the practice had been 'allowed' access. DIRE 😒 and the hospital trust for my area (LUHFT) was certainly one of the 1 in 7 hospital trusts in this report last year (May 2022) found to be still using paper records:

futurecarecapital.org.uk/la...

It's so depressing 😢

Anyhooow! Sorry for rant/side-tracking in empathising with you...Moving forward, just some pointers to help you get the best out of this amazing site and get the help from the admin and other more knowledgeable members as well as that all important private consultation you've got coming up. When you feel up to it:

* it helps if you can put any blood test results with dates, particularly TFTs, Vitamins and Supplements, on your Bio (ranges in brackets) so that they're all in one place and you don't have to keep repeating them;

* any corresponding Rx you're on - ditto on your Bio; and

* though it sounds as if your practice is pretty good and on the ball (certainly not complacent, chaotic & obstructive like mine), if you haven't [yet] got on-line access to at least all your results through your GP practice, put in a request now.

Hope that helps a bit 🙂❤️

• in reply toPRJ202 years ago

It helps a lot. Thank you 🥰