Sporadically fall backwards with no warning - Thyroid UK

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Sporadically fall backwards with no warning

woofa27 profile image
24 Replies

3 weeks into new dose of 100 levothyroxine (on waking) + 2 doses of 7.5 t3 (one on waking and one at 3pm - [built up gradually]). Back to suddenly, out of nowhere just falling backwards and fatigue beyond all comprehension.

This falling symptom only started after my 15 days off levothyroxine, nearly 3 years ago now, and is the most disconcerting symptom I have. It's as though my body short circuits and just loses all power, but I'm always fully conscious and usually manage to grab hold of something.

I am also heading into the menopause (last period January and female hormone blood tests done last week state: not yet post menopausal, They didn't test thyroid)

I've had a 24 hour trace and everything looked normal rhythm (I was on 60 Erfa at this point, but still felt very very wrong and unstable at the time)

I even recently fell in front of a car. Luckily the driver was on the ball and managed to stop, but it was a close call, in fact, so close that she thought she'd hit me.

I haven't got any thyroid results as only 3 weeks at this dose, having built up to it. On Easter day, my sister-in-law who is a doctor and witnessed me fall, agreed it could be female hormones or thyroid and that my pulse was erratic after fall, but absolutely fine after I'd sat for a bit.

Since my latest fall, on Easter day, I have also started the HRT that I've had for a bit, but was originally too frightened to begin, as she said its been life changing for her. She also felt I should wait the minimum of 6 weeks before retesting thyroid levels.

So… any ideas about the falls? Thyroid? menopause? Anyone experienced similar issues and found the solution?

TIA

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woofa27 profile image
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24 Replies
Lindam1077 profile image
Lindam1077

Hi be not afraid of HRT it’s a game changer I’ve been on it for many years. You lose vital hormone with the menopause that you have to replace.

Dizziness I have vertigo difficult to live with no medication works.

I have Hashimotos Levothyroxine does not work for me my immune system is attacking my thyroid that is caused by inflammation.

I have decided to take a holistic approach to deal with the inflammation Castor Oil Apple Cider Vinegar Hawthorn Berries and Celtic Salt Good Luck

jimh111 profile image
jimh111

It doesn't look like a hormonal problem. You should get it checked out with your GP.

woofa27 profile image
woofa27 in reply to jimh111

Do you think it might be a heart issue then?

jimh111 profile image
jimh111 in reply to woofa27

It could be a number of things I know little about. It's best to see a GP as a first point of call and if they find nothing you can start looking for other answers.

woofa27 profile image
woofa27 in reply to jimh111

Trouble is, seems like it could be a number of things that my GP knows little about!!! So far, no joy from GP or hospital tests run to date. I'm going to carry on muddling along on my current dose and see what happens. It's something that appears more likely to occur just after a dose change, so I feel like it could even be as simple as my body saying what on earth are you doing to me now, for crying out loud!!! Like my brain goes into panic mode. Who knows?

But thank you Jimh111 for your replies and also, just had a look at your profile and sorry to hear about your recent battles with the GMC.

Sometimes it feels as though we're all just banging our heads against a impenetrable brick wall of obstinate, conceited ignorance - it just shouldn't be like this! Surely, individuals intelligent enough to become medical professionals, should be open-minded and willing to learn, develop and expand their knowledge base, not just bury their heads in antiquated notions based on very little, very outdated research. When did the patient's well-being and recovery cease to have any importance or relevance to those within the health system? Something has gone very very wrong!

And so, good luck with your 'rule 12' appeal and KEEP FIGHTING THE FIGHT! 🍀🤞🍀🤞🍀

jimh111 profile image
jimh111 in reply to woofa27

Thanks so much. I hadn't realised you had checked with your GP, that's important to rule out the common causes. You could keep an eye on your blood pressure, standing and sitting. Also, if you feel dizzy get your ears checked out - you probably don't get dizzy before a fall. Good luck anyway, it's outside my knowledge.

woofa27 profile image
woofa27 in reply to jimh111

No worries, it was a pretty futile experience! Ain't that just always the way…sadly. Thanks Jimh111 🤗

Marz profile image
Marz

My eyes tire easily so have not read through your previous posts.... how are your levels of B12 - Folate - Ferritin - VitD ? Low levels could be partly linked to the symptoms....

woofa27 profile image
woofa27 in reply to Marz

Sorry Marz, only just seen your reply.

They're not too bad, not sure of folate levels 'cos that failed on recent test, but my B12 levels have been going down. I have also been getting pins and needles in lower legs, particularly just after taking thyroid meds and must admit I wondered if my vitamin levels were not quite as optimized as they could/should be.

So I have, along with starting the HRT in the last couple of days, also restarted taking vits more religiously.

22-FEB-2024 results:

Ferritin 75.00 ug/L (Range: 30 - 264)

Vitamin D 89.1 (Range: 50 - 250)

Active B12 - 88.9 pmol/L (Range: 37.5 - 188)

[B12 was, when taking sublingually, above 188, so has dropped quite significantly]

I guess, if things do get better, we won't know why, but if they get better, who cares!

I'm glad you think it is potentially a relatively simple fix, because when we've looked into my heart, we keep hitting dead ends - results always come back normal, nothing wrong.

Thank you so much for your reply 😀

Marz profile image
Marz in reply to woofa27

Your levels look good. Not sure those levels would cause problems for you. VitD around 100+ is considered good and you are almost there ! I think you should continue to explore. Hope the HRT works !

woofa27 profile image
woofa27 in reply to Marz

Darn it, thought we might have been onto something there 🙁. Thank you though

Marz profile image
Marz in reply to woofa27

B12 is like thyroid ! - unravelling its mysteries can be difficult ! The B12 test you had, only indicated the amount available for transfer into the cells - where it is needed ! Raised Homocysteine can indicate low B12 in the cells.... rarely tested in the NHS - SIGH !!

I have B12 issues due to major gut surgeries - hence my interest. I self-inject weekly and often feel unsteady when my jab is due... Am also 77 !! 🌻

woofa27 profile image
woofa27 in reply to Marz

Never heard of the homocysteine test! Just looked up about raised homocysteine and I tick all the symptoms boxes. I might see if I can test the level of that next blood test too. 👍😀

Marz profile image
Marz in reply to woofa27

Also raised MMA. I don't think they are done in the NHS. Had mine done in Crete where I lived for 15 years.... A GOOD B Complex could sort out Hcy.

nightingale-56 profile image
nightingale-56

This has happened to my Son recently and I know his Cortisol is low, so wondered if this could be what is happening to you. See if you can get a 9 am Cortisol test done. My Son was sitting on his bed at the time, just about to take some medication, and just fell back, but quickly came to.

woofa27 profile image
woofa27 in reply to nightingale-56

That is EXACTLY what happens to me, no warning, just zonk! I had been wondering if it could be due to stress, but also do feel that my thyroid levels are off. Does he now take medication for low cortisol?

nightingale-56 profile image
nightingale-56 in reply to woofa27

Yes, woofa27 my Son has been on Hydrocortisone for about 35 years now, as he has Hypopituiarism with Septo-Optic Dysplasia. I know at the moment his Cortisol is quite low and will hope I can see his NHS Endocrinologist soon. All this came about because his Diabetes (Type 2) was changed for Alogliptin, which has Mannitol in it (I think this is what upset all his hormonal blood levels. The Alogliptin was changed for a higher dose of Gliclazide (already on this as well as Metformin and 1 injection of Dulaglutide (Trulicity) once a week. His appetite once he started the Alogliptin just plummeted. This was just after Christmas and his appetite has still not got back to normal (not big anyway). I have also had low Cortisol and also felt as though I might faint while this was going on. I also felt quite sick at the time.

woofa27 profile image
woofa27 in reply to nightingale-56

Hi nightingle-56, thank you for such a detailed reply. So sorry you've both been through so much.

Oh, but also, I know from my dad being on metformin, that it can cause very low B12 levels. I don't want to add to your worries, but going by Marz's comments earlier, low B12 levels might also be contributing to your son's issues.

I guess you/his GP probably make regular checks on his B12 levels already, so that's probably not relevant. We're all trying to put together the pieces of our health puzzles though, so, just thinking out loud really...

I hope things improve for you both very soon 🤞🤞🤞 GOOD LUCK!

nightingale-56 profile image
nightingale-56 in reply to woofa27

I certainly do keep a check on my Son's B12, unfortunately GP not so good. GP did start B12 injections at the start of the year, giving him 3 monthly injections, then tested and said he did not need any more until 6 months time. I know that this should be kept up much more frequently, so it rather looks as though I will have to go private with this. Do wonder why we have an NHS as they are just making things worse. In the meantime I am giving him B12 drops. Yes, I did know that Metformin depletes B12, and some of the other meds he takes as well. We really should not have to do a GPs work for him! I try and think out loud if I get to see a GP - perhaps they'll learn something! Thanks for your wishes, and good luck to you too.

Brightness14 profile image
Brightness14

I have fallen several times the first when visiting back in the UK. I feel straight back onto my head and had to go to A & E. More recently after receiving a batch of Thyroid s after only 44 days I started falling, nearly everyday.

Mine is low FT3 not the menopause I am 77 years old.

woofa27 profile image
woofa27 in reply to Brightness14

Sorry to hear you're going through the same issues, it's very scary isn't it. Hope you've got it sorted now.

But interesting that you should say it was low t3 in your case, 'cos my gut says that my thyroid levels are off.

But I'm always stuck playing the waiting game - holding out for the next blinking blood test. I will definitely post my results when the 6 weeks is up, or even try to wait out 8 weeks. It'd be interesting to see whether the same is true for me.

Marz profile image
Marz in reply to woofa27

Have you considered private testing to ensure T3 is tested ?

woofa27 profile image
woofa27 in reply to Marz

Yeah, I now test thyroid stuff myself, don't really like to go anywhere near a doctor if I can help it. Also, as we all know sadly too well, you can't guarantee you'll even get FT4 with an NHS blood test, let alone FT3, if your TSH is in range, even if your Doctor has specifically requested them.

Brightness14 profile image
Brightness14 in reply to woofa27

Yes that's what I did waiting and finding out what was going on. It took months but mine is exactly that. I hope you find your answers too. Time consuming but worth the wait.

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