Dizziness & light headed...: Hi I've been getting... - Thyroid UK

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Dizziness & light headed...

joey82 profile image
42 Replies

Hi I've been getting quite bad dizziness and light headed spells the last 2 days, from what I read this is due to low cortisol/poor adrenal function.

Does anyone know what can be done to help?

I took pregnenolone and Adrenavive twice a day over the Christmas and NY period to see if it would help with my poor adrenal function following a saliva cortisol test, could this of caused the issue? I stopped taking them Saturday just gone as I woke up feeling horrendous.

And would anyone tell what the difference is between the Adrenavive and an adrenal glandular?

Thank you as always.

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joey82
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JumpJiving profile image
JumpJiving

joey82 As per my responses to your posts about a month ago, please do not use over-the-counter adrenal supplements. They are unregulated, they don't tell you what hormones (and unintentional steroids, antibiotics etc) they contain, and don't guarantee that quantities are the same from one batch to another.

For products containing an unknown quantity of cortisol, supplementing your body's own cortisol with an unknown quantity comes with risks. Suddenly stopping cortisol supplementation can lead to potentially fatal adrenal crisis. IMHO, the sooner adrenal supplements are regulated the better.

Similarly, with pregnenolone, it's largely unregulated, and as a precursor to a whole host of hormones the effect of taking it is possibly far-reaching.

Having stopped taking them, please don't start again.

joey82 profile image
joey82 in reply toJumpJiving

Thank you Jump Jiving.

I bought them for Dr Myhills website and thought that there would be some "guarantee" to thier quality and ingredients.

I was almost desperate to rescue my Christmas rather than have another one written off by ill health that I thought I would try them.

Another hard learnt lesson. I won't be taking them again.

JumpJiving profile image
JumpJiving in reply tojoey82

joey82 Have just re-read your previous posts. My recommendation is still that you get your early morning (8-9am) blood cortisol re-tested, but after stopping ashwagandha and anything else that might affect your levels (liquorice, grapefruit, biotin, etc). Also, withhold any steroids (including asthma inhalers, nasal sprays, tablets, creams etc) prior to the test, at least that morning, but ideally up to 24 hours if safe to do so. If you are on any opioids you would need to check on those too. Your GP should do, or arrange, the early morning cortisol test so won't cost anything. Only by getting a useful blood test result will you get a diagnosis and treatment from the NHS for cortisol problems.

Remember that books do not provide personalised medical advice, so their content is also not regulated. It may or may not be accurate, it may or may not be risky. Whilst we might like to argue with some aspects of their guidance/advice, the NICE guidelines (and supporting documents) and ESE guidance are more reliable sources of information about anything cortisol-related. Other sources of good information are Adrenals.eu, the Pituitary Foundation, the ADSHG etc.

joey82 profile image
joey82 in reply toJumpJiving

Hi jump Jiving. This is my blood cortisol taken 20th Dec. The only thing I was taking at the time, as mentioned by yourself, was 1 ashwagandha and a b complex per day. I didn't realise it you had to stop taking these prior to blood cortisol tests.

Blood cortisol 20th Dec
JumpJiving profile image
JumpJiving in reply tojoey82

joey82 Yes, you need that re-done without the influences of supplements etc.

helvella profile image
helvellaAdministrator

That you have to ask this question:

And would anyone tell what the difference is between the Adrenavive and an adrenal glandular?

... is an indication of the problems.

There are several adrenal glandulars - including Adrenavive - but we do not know what they contain. Yes, they might well list the ingredients. But they do not publish an assay of the products. Listing all the substances which would be expected or are known to have an effect on us.

We cannot tell the differences between them. Except insofar as they state "whole" versus "cortex".

This is exactly the same issue as with non-prescription standard desiccated thyroid.

The only information we have about any of these products is what the vendor/manufacturer states. While many have good reason to criticise the FDA (in the USA) and the MHRA (in the UK), they do have the role of ensuring approved products do meet the defined standards. For these glandular products, there is no independent verification or government-oversight.

At best, food standards might be applied if they were found to be contaminated with listeria, salmonella or whatever.

With thyroid glandulars, there is a reasonable chance that individuals have experience and might be able to detect variations. And, if they contain what they claim, the issues would be the absolute thyroid hormone content and the T4:T3 ratios.

With adrenal glandulars, I don't think that is a viable approach.

However, I entirely understand why people who feel awful would be willing to try almost anything to feel better.

And dosing changes to any medicines such as steroids need to be done under a properly considered plan such as tapering.

joey82 profile image
joey82 in reply tohelvella

Thank you Hellvella. So with adrenal gladulars thay are only available under a prescription, how do they differ from the Adrenavive etc? Because I bought them off shelf.

helvella profile image
helvellaAdministrator in reply tojoey82

No - adrenal glandulars would almost certainly NEVER pass the requirements.

Adrenal glandulars is just a name for any product made from dried, powdered adrenal glands. Adrenavive is simply a brand name for one such product.

The prescription products include hydrocortisone, prednisone, prednisolone, methylprednisolone, fludrocortisone, dexamethasone, betamethasone - and, more generally, glucocorticoids.

(A few are available without prescription in very low doses such as hydrocortisone cream for some skin issues.)

joey82 profile image
joey82 in reply tohelvella

Thanks Helvela, I have a better understanding now.

How do I go about addressing my low cortisol? What are the options?

PR is adamant that his CT3M is the way to go...

helvella profile image
helvellaAdministrator in reply tojoey82

I have no experience of any adrenal issues and feel totally ignorant in that direction.

I usually avoid getting involved because of that! But in this case, I felt clarification was required. Despite JumpJiving having replied very well.

greygoose profile image
greygoose

Dizziness and light-headedness can be caused by a lot of things, one of them being low B12. Low B12 can also cause poor adrenal function. So, have you had your B12 tested recently? If not, it would be a good idea to get it done. :)

joey82 profile image
joey82 in reply togreygoose

Hi, B12 measured at GP's 20th Dec. I have the injections.

B12 result.
helvella profile image
helvellaAdministrator in reply tojoey82

The Pernicious Anaemia Society repeatedly quote the advice that B12 should NOT be measured in people on injections.

Doing so reveals nothing useful.

joey82 profile image
joey82 in reply tohelvella

I understand what you are saying, but for me it asks more questions than answers. Do now go down the whole PA route and discover if I have this as well?

helvella profile image
helvellaAdministrator in reply tojoey82

I think so. If you have ever needed B12 injections, it seems sensible to check.

The only exception might be someone who had a diet that had virtually no B12 - e.g. vegan with no B12 fortification.

joey82 profile image
joey82 in reply tohelvella

I didn't need to, I just felt it was the best way to get B12 and the easiest and possibly the most cost effective.

How do I start on the PA route? My endo requested some tests related to this earlier in the year and I've had my intrinsic factor checked. But by all accounts this means nothing.

Jazzw profile image
Jazzw in reply tohelvella

Except… wouldn’t we normally expect B12 to read higher than it does here, for someone who’s on B12 jabs?

Might suggest that more frequent B12 jabs are required, maybe? Just a thought.

I know a number of people who are trying to “make do” with 3 monthly jabs when they need them every 2 months or even more frequently than that. But their GPs refuse to up the frequency. :(

joey82 profile image
joey82 in reply toJazzw

I appreciate your point, I can't remember my last jab, I think it was in November, maybe even October last year. My next one is 2nd Feb.

helvella profile image
helvellaAdministrator in reply toJazzw

Maybe - but it does depend on how many and when.

Sparklingsunshine profile image
Sparklingsunshine in reply toJazzw

My B12 level is over 2000, but I have jabs every 2 months which now I'm SI at home will probably increase. I'm going to try every 4-6 weeks.

I dont know anything about adrenal supplements, but being dizzy and lightheaded can be due to many things, vitamin deficiencies, low iron, low blood sugar, blood pressure problems, even being under or over medicated on Levo. If I were you I'd get checked out by your GP.

joey82 profile image
joey82 in reply toSparklingsunshine

I do agree, but I think there is a coincidence that it's all started after taking the Adrenavive and pregnenolone for a couple of weeks over the Christmas period. I will continue to look for answer though.

Pastille profile image
Pastille

Hi  joey82

I realise that this has been said, above, more than once, but I just want to add that, personally I 'always' experience dizzy spells when I am under medicated for thyroid. If you are not sure if you are on the right amount of thyroxine, then I would, definitely start there. Just check your levels, just to be sure.

Just read your profile and wonder if you would be better off on T4 alone? Some people are.

joey82 profile image
joey82 in reply toPastille

I've always had dizziness and light headed spells, but very minor and not regular so I do agree with you. But the last two days have been terrible.

I was never well on T4 mono therapy. Combination T3/T3 has shown to be little better. I've never been well.

2 1/2 years ago I was on 100t4 20t3 and I felt great for around 3 months. One day I got up ans felt horrendous and I've struggled to regain my health since. I was taking one single dose of t3 per day and I think it caused major problems with my adrenal function.

I've just had enough. Sometimes I wish I'd never been born. Hypothyroidism has ruined my life.

I've had two breakdowns in the last 2 days where I ended up in years after punching myself in the head through shear frustration and anger.

greygoose profile image
greygoose in reply tojoey82

OK, so you felt great for around 3 months and then bad again. That could just be a sign that you needed an increase in dose. That's the way it often works. So, have you had full thyroid testing recently: TSH, FT4, FT3? If not it would be a good idea to get it done.

I very much doubt that taking 20 mcg T3 all in one go caused problems with your adrenals. I take 75 mcg a day, all in one go and my adrenals are fine. :)

joey82 profile image
joey82 in reply togreygoose

Before the 100/20 dose I was trying t3 and t4 in various doses and making small changes under an endo. 100-75 t3, 10t3 etc etc... just seeing what would work and what wouldn't. I do know once I started taking one dose of t3 per day it was making me feel rough upon waking.

I've tried single doses of t3 and it just doesn't work for me. And i think taking a single 20mcg dose of t3 2 1/2 year ago was the start of all my issues. Taking 2 or 3 doses a day seems to be the norm for t3.

Yes I had a full thyroid panel on the 20th Dec plus countless others over the past 2 and half years plus countless other blood tests from iron panels, b12, magnesium etc etc.

Nothing shows anything of any issue.

The only tests that show an issue is cortisol both in blood and saliva and symptoms.

Perhaps the reason I've responded so badly is due to something like PA.

I followed the supplements protocols suggested on here for months, years. unfortunate I didn't do anything

Sparklingsunshine profile image
Sparklingsunshine in reply tojoey82

If you have PA or low B12 the PA forum is very helpful on HU. I self inject my B12, with NHS agreement. I get jabs currently every 2 months as I get neuro symptoms. But I've ordered some B12 ampoules from Germany and am planning to try 4-6 weeks instead. Maybe you need more B12 than you currently get. Some folk SI daily or every other day for good health.

The NHS has provided needles, syringes, wipes and a sharps bin. There are lots of self inject resources on the PA forum. Some beauty salons and pharmacies now offer B12 jabs for around £30 a jab too.

Sparklingsunshine profile image
Sparklingsunshine in reply toSparklingsunshine

Just did my first SI today as well. I feel ridiculously pleased I managed it. Its a bit fiddly but now I know what I'm doing it'll get easier. Much less painful as well 😆

joey82 profile image
joey82 in reply toSparklingsunshine

Yes my B12 provider isn't expensive. I may well need a higher level of B12 as you have suggested.

How do I start the journey of ruling out PA? What would be the 1st steps?

I can't honestly say I feel any better after receiving my B12 jab.

elaar profile image
elaar in reply tojoey82

PA can be quite lengthy to diagnose. PA is the just the term for the end result of intrinsic factor loss to the point where your body can't absorb enough B12.

They can test for autoimmune causes (e.g IF antibodies), but the reliability isn't perfect. Also PA can be caused by Gastritis (both autoimmune and non), but you'd certainly have serious other symptoms with those.

There's a lot of other routine tests that may pick it up, such as looking at our Red blood cell results, MMA, Homocysteine levels, but the results are distorted if you're injecting/supplementing.

The above are issues with B12 gut absorption, there's also cases where people have problems with transport proteins/cell uptake.

joey82 profile image
joey82 in reply toelaar

If there are issues with transport proteins/cell uptake can this be dealt with?

Sparklingsunshine profile image
Sparklingsunshine in reply tojoey82

Not all B12 is due to PA, it can be due to diet or other reasons like certain medications. Doctors should test you for intrinsic factor antibodies if they suspect PA, but the test isnt very accurate and only picks up around 50% of cases. So you can have negative antibodies and have PA. As we know antibodies fluctuate.

Mine was diagnosed via the backdoor, I had very low B12 about 13 years ago. I have struggled with it since a child. My doctor suggested I tried very high strength tablets for a few weeks, but when my blood was tested my levels hadnt improved at all. My GP was sure I have PA.

So jabs it was. I had 5 loading doses over 10 days at the surgery then jabs every 12 weeks. These then got reduced to 2 months and now I'm in charge of them I'm thinking monthly. You might need more frequent jabs than you get now. Do you supplement with B12 tablets or spray in between?

joey82 profile image
joey82 in reply toSparklingsunshine

Only a B complex every day. Why would I need more regular jobs than I do know if I don't have PA? My levels are the highest they've ever been.

Looks like ruling out PA is a priority now as my response to thyroid medication and t3 in particular has been poor.

PR has mentioned it to me a couple of times and I was hoping I didn't have it. But perhaps now is time to find out for sure.

helvella profile image
helvellaAdministrator in reply tojoey82

I suggest you join the Pernicious Anaemia Society forum.

healthunlocked.com/pasoc

There is no good test for PA. They often do Intrinsic Factor antibody tests - but you could have multiple negative results before you get a positive. That is, negative results mean nothing but one positive result is diagnostic. Because it is a simple blood test, a GP should request a test. However they might not be so willing to repeat tests after one or more negative tests.

Also, endoscopy with biopsy can prove PA.

If you have PA, one injection months ago is very much a drop in the ocean and you might well have not noticed any improvement.

helvella profile image
helvellaAdministrator in reply tohelvella

The PAS forum has a load of pinned posts. Some of them could be very helpful to read:

healthunlocked.com/pasoc/po...

And the PAS has their own website:

pernicious-anaemia-society....

It's much better to go to those who have the disorder. Many here have, or had, low B12, some have PA. But there are far more deeply knowledgeable members there than here. (Even while we have many members in common!)

joey82 profile image
joey82 in reply tohelvella

I'm on thier website now. Thanks. Let's hope there is something in this, as the whole conversation around PA that come from my original post is getting me stressed.

helvella profile image
helvellaAdministrator in reply tojoey82

If you do have PA, then you could just be taking the most important steps possible. Wish you well in getting the answer to PA.

Pastille profile image
Pastille

I'm so sorry to hear that joey82 , it sounds like you really are low, right now. This condition can get you so down, especially as others just seem to get diagnosed, prescribed and then it's all plain sailing from there on. It really doesn't help us that struggle to be believed and helped! (apart from on here, HU, of course, which is an absolute godsend).

I'm not in the best place myself, so I'm just going to do my best here! :)

The only thing I can think of, to say to you, is to go back to the start. Re test and supplement with careful guidance from this site. 'Something' is amiss. There is something that is off balance (sorry for stating the obvious, but you know what I mean! :)

Testing T4, T3, Ferritin, Folate, B12, Vitamin D, and adding ALL the other, suggested, required vitamins for this condition, ( magnesium, Vitamin C, B complex to ensure that Thyroxine and T3 is being absorbed and utilised.

Start from scratch, write it all down and go through everything, step by step.

Once you are sure you have all your ducks in a row and you are doing everything right, stick to it with discipline. Taking your T4/T3 with an hour before and after of no food/coffee, anything.

Keep on reading here and doing all that is suggested, and keep on asking questions until you start to feel better, because if you do follow it all, strictly, you will start to feel better.

The only reason I am saying this is because, I have been told what to do, myself, followed it and done everything right, got complacent, let things slip, stopped certain supplements and ended up in the same boat again! Feeling rubbish.

Clearly, this means that it was working, because it is only when I am feeling rubbish that I am asking what to do, and this is because I have stopped doing what I was previously told :D

I hope this does not sound condescending, that really is not my intention at all, it's just that, so much of our brain is affected by this, and it is easy to lose track of things with brain fog and unrelenting fatigue!

Go back to the drawing board. Make sure you have everything right and that you are giving it all time to help you. Don't add any other supplements, unless it is suggested on here, they do know what they are talking about.

Try to focus on something else, that you enjoy doing, whilst you are doing this, because when you feel so unwell it can totally consume you, and you can become obsessed (I've been there, to the point that most of my conversations were about my health issues and vitamins!!) and just not thinking about it at all for a while, even though it's hard, can really make a difference.

I believe that adrenal problems can be such a nightmare, greygoose has always had excellent knowledge and advice in that area from what I remember. Ask, ask and ask.

I hope you find some reprieve soon

joey82 profile image
joey82 in reply toPastille

Thank you Pastille. I follow all the protocols and standard advice on here.

I had a iron panel before Christmas so I'll post the results on here and see what people think.

I felt I was a good path way back in the summer under the care of a FMP. But I tried adding 25mcg of T4 in a coming down on my T3 but I felt terrible. Ever since October it's been a nightmare and I've changed my dose back to where I was but can't back to how I was feeling. I think Taking the Adrenavive and pregnenolone over Christmas has caused even further problems.

The gym has been my saviour and even on bad days I make very effort to go. It always makes me feel better. But the last 2 days has been really hard.

I'm hoping things will pick up in the next few weeks. I'm going to work hard on my fitness (when I can) l, meditation and cold showers. I want to tidy my diet up as well after the festive period.

Sparklingsunshine profile image
Sparklingsunshine in reply tojoey82

Just to say as brilliant as exercise is and its been my saviour in the past as well, you might need to watch doing too much, particularly if not optimised on thyroid meds or other nutrients. Exercise can use a lot of T3, and can be tough on a body that is struggling. Just make sure you get some low impact exercise and rest days in. You dont want burnout.

joey82 profile image
joey82 in reply toSparklingsunshine

Back in the summer I felt I could of exercised every day. I plan on every other day atm.

Low impact exercise has been my go to but would like to pick up on the cardio as the long term plan is to ride my push bike again.

I'm going to make the magnesium salt baths and meditation a regular thing now as part of my rest days.

serenfach profile image
serenfach

Just a passing thought - as you said you felt worse as you woke up, check you blood oxygen levels by buying a finger monitor (cheap on the web), just to rule this out.

Hope you feel better soon.

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