Fainting spells: Felt as if I was going to faint... - Thyroid UK

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Fainting spells

Coachgeorge
Coachgeorge

Felt as if I was going to faint today. Can anyone shed some light? I was fairly stable most of the day. It seemed to come from nowhere. Thanks

158 Replies
oldestnewest

Low blood sugar? Do you eat regularly, even if they're only small meals?

I’m eating regularly. It just came from nowhere. Came and went pretty quickly. When I sat down, the chills started. Could it be thyroid related?

Could be due to under-medication, yes.

I thought it might be. Scared me. Can’t imagine it happening when I start driving again

Surely you won't be starting driving until your feeling better, and your levels are better. By then, it probably won't be happening any more. :)

Hope so. Back in bed with the heating pad (my new best friend) thanks

You're welcome. :)

Louiss
Louiss
in reply to Coachgeorge

This happens to me occasionally and is more than likely low blood sugar, I am type 2 diabetic also low thyroid and copd. I find that having one or two Dextro sweets brings sugar up quite quickly. This hot weather will cause us to use up energy faster which needs replacing with something sugary for quick relief followed by something more substantial. Give it a try if it happens again, dextro are in chemist or home bargain shops where they are cheaper, about 99p. Hope this helps.

Hi,

I tend to feel fainty too, if I get too hungry, but I'm not sure why as I've been diagnosed recently with hypothyroidism.

I hope someone will be able to shed some light on this.

Best wishes

I have been getting daily bouts of this for last few years. It used to terrify me as I could go from feeling fine to wobbly legs, sweating and feeling faint in a split second. I still have daily bouts although it's become so commonplace I no longer feel anxious when it happens. I (now) suspect its a sign of either under medication or due to very low B12, more likely in my case the former. Have you had your vitamin levels tested?

Coachgeorge
Coachgeorge
in reply to ILR2019

Vitamins are good with the exception of D and I have a prescription for that. My doc has me on cbd oil for anxiety. She just increased it from one drop to two. I’m wondering if that’s it. I’m also under medicated as we are working to optimize t3 meds. It’s all very frightening. Can’t they get your meds optimal so this doesn’t happen?

ILR2019
ILR2019
in reply to Coachgeorge

I have no experience with CBD oil so no idea how it works or possible side effects, but I assume if your symptoms coincide with a dose/drop increase you can't rule that out.

I have been in a battle for about 4 years with my local docs, only getting diagnosed last September. I have just had to do private bloods to confirm Hashi. My GP is refusing to budge so yet another battle ensues for optimisation 🙄

Coachgeorge
Coachgeorge
in reply to ILR2019

I hear this over and over from folks in the UK. I’m in the US. We don’t have to fight the same battles. It makes no sense to me. I don’t understand why UK docs are so resistant

SlowDragon
SlowDragonAdministrator
in reply to Coachgeorge

The trouble with NHS system is GP's are increasingly employed as gate keepers to prevent people using the NHS budget up

Easy to get "diagnosed" with depression as there's a bonus for GP doing so ......

but getting diagnosed with long term "boring" and complex condition like hypothyroidism.....guidelines say no diagnosis until TSH over 10! (madness)

Was a recent suggestion that TSH should be increased to over 20 before getting diagnosis for people over 60 ......though even endocrinologists did say that was utterly ridiculous

NHS being exploited on price charged by pharmaceutical companies for Liothyronine, so it's currently all but impossible to get prescribed on NHS

thelancet.com/journals/land...

m7-cola
m7-cola
in reply to SlowDragon

Depressing but true. (I used the ‘d’ word unconsciously... wow).

Hi, is there a project name or something re GPs getting bonuses for depression diagnoses. I want to make a complaint against a GP I’ve seen

There might be rules about posting about a doctor. I'd start a post and see what one of the administrators say.

SlowDragon
SlowDragonAdministrator
in reply to JaneyJaney

Knows as Quality and outcomes framework

Paid for certain diagnoses.....notable that there's no mention at all of thyroid disease

en.m.wikipedia.org/wiki/Qua...

telegraph.co.uk/news/health...

Paid extra incentive to prescribe statins

express.co.uk/life-style/he...

£55 per head to diagnose dementia

bbc.co.uk/news/health-29718618

Wow thanks

SlowDragon
SlowDragonAdministrator
in reply to JaneyJaney

So will get paid more to diagnose a thyroid patient with needing statins, high blood pressure and depression...rather than managing thyroid disease properly

Great article about why low TSH on Levothyroxine is often misleading ...it's always FT3 that should be considered

thyroidpatients.ca/rational...

Interesting, I am seeing improvements dropping my dose my 12.5mcg a day, so I was overdosed. I’m not struggling to breathe as much.

So happy you are finding your way

Thanks. I still feel I need T3 probably, but I do think we all need to look at the simplest explanation first that T4dose now right and then see what symptoms are left.

I was such a mess on just T4. Not sure the t3 is helping but don’t know what else to do

Maybe see about NDT? Surely there is a pharma company that could make some alternative to T4 and make a fortune! I actually think there would be so many people willing to pay a high price for an alternative drug, if it means I can work full time, an expensive drug still works out cost effective for me.

One would think. I’m so weak this morning. Feel like I keep trying but can’t find a solution

It's interesting to hear this. I also have difficulty breathing but didnt think that it was related to my dose. After i have stopped my meds, i don't feel this difficulty in breathing anymore.

Interesting to know. Are you okay without any thyroid meds?

I am weak for some hours a day, else i feel better withoutbthe meds. But i am still only 2 days without meds.

Good luck! I’m sure my doses are wrong but I’m waiting until my next draw to make changes. I’m sure I couldn’t do without meds. Best

Thanks! I have more problems with the side effects of my meds than with my symptoms, and since my values are normal for 5 months now, my dr has allowed me to be free from meds just to give it a try. My next blood work will be in 2 weeksm So, we'll see. I hope you feel better soon too. This illness is not easy.

It’s terrible. I’ve been in bed for eight months. Just recently started doing things. Best

Yes, this illness is not easy. I was also bedridden for 2 months, and most of the time it feels like i am dying, especially since my body does not want the meds, i cant take a high dosage. Let us hope, we all be better the soonest. That is why i am really grateful for this support group. People including doctors don't really know what we are going through

Agreed, I’d be worse if it weren’t for this group.

So, Slow Dragon, writing as someone who is struggling with severe symptoms but also struggling to get anywhere with either GP or Endo, is it possible that if I am failing down that route, might I get a diagnosis if I go privately do you think?

SlowDragon
SlowDragonAdministrator
in reply to Redlester

Just had a look at your previous posts

Lots of test results....but you don't have high thyroid antibodies

However one in five Hashimoto's patients never have raised Thyroid antibodies

healthunlocked.com/thyroidu...

Suggest you push GP for thyroid ultrasound

If you can't get this done.....yes seeing private endocrinologist MIGHT get you a diagnosis and trial of Levothyroxine

Getting all four vitamins optimal is first step

Retesting thyroid and vitamins privately

Making sure to get blood test as early as possible in morning and fasting

Have you ever tried strictly gluten free diet?

Hi SlowDragon

My GP couldn't do an ultrasound but referred me to an NHS Endo. I saw him last Monday. He was very find during the appointment but said he couldn't treat on symptoms alone. He did blood tests and copied back to me the letter he sent to my GP when those results came back. According to him my TSH was normal at 2.27 [however this was done at 3.30 in the afternoon after I had eaten 2 meals etc and my other readings would have been done before 8.30am and fasting] and he declared me to be euthyroid. He has however referred me for an ultrasound. I had an episode about 10 years ago of severe throat pain - agonising - which antibiotics did nothing for. At the time I was concerned it was thyroiditis, but I saw an ENT privately and he said it was an infected tonsil remnant and I had surgery to remove it. I would doubt that anybody even considered testing my antibodies at that point - it makes me wonder could I have had high antibodies then which have subsequently come down to the current low levels? So Endo's letter to GP is more or less saying that unless the ultrasound shows evidence of thyroiditis he won't be prescribing treatment for me at this point. I have previously gone off gluten and dairy for 3 years with no improvement.

I would be interested to know if thyroiditis comes and goes, I had four ultrasounds (one person simply incompetent) in a a short period ,but three were experienced consultants and only one picked up Hashimotos. I wonder if inflammation comes and goes? The thing about private consultations, you can pick one that is thyroid experienced and as you are paying they tend to want to keep the patient happy. So it is better than NHS I feel.

Thanks for this JaneyJaney - you have put me on notice that even the ultrasound may not be accurate which is good to know. Were your ultrasounds done on the NHS or privately? I have no real knowledge of this but my understanding was that an ultrasound would pick up evidence of thyroiditis if it showed that the thyroid gland was actually damaged, which would lead me to believe that thyroiditis was something that if you had it, was a one off event or progressive. I could be wrong in this and others with more understanding or knowledge of this area could correct me. My sister has hashis and my mum might have it but I would doubt has ever had her antibodies tested - she was dxd as hypo and she is content to leave it at that. For my part if I have hashis I want to know one way or the other. If I get no joy via the NHS route I am going to have to go down the private route. How can our supposedly "world class" NHS perform so poorly on this issue and get away with it????

Hi, mine were all private. There is a lady I found and I’d only have her going forward. Yes, actually thinking about it, when you have Hashis, they say your thyroid is rippled or bosselated. It looks like a giraffe hide. I would have a look for yourself at the screen whilst you are having it done. It was the inflammation that I thought might come and go, but probably the rippled look is somewhat permanent. Essentially they are looking at grainy pictures, so it does come down to skill and experience of the ultrasound person. They can take screen shots and give them to your specialist. I would ask how many thyroids they do and their experience of thyroid disease. One I had mistook a ripple for a cancerous growth!! I did have cancer but not on that side! And not two growths as she told me! Had no clue about what to look for in lymph nodes either.

Hi JaneyJaney

I am so sorry to hear you had cancer and then to be told you had a cancerous growth by mistake. That must have been devastating for you. And all privately done. Thank you for the tips about the ultrasound - knowing what they are supposed to be looking for and the advice about the screenshot is excellent advice. I would imagine that the ultrasound techie won't like me questioning her experience and expertise with thyroid issues but I will try my best to find out when the time comes. To be honest I don't hold out any great hope for the test but we will see. Thanks for your advice .Take care.

To be honest the Hashimotos and not having a thyroid is the bad bit, worse than the cancer so far. Everyone’s story is different on here. Well in the UK a lot of ultrasounds are done by consultant doctors who have specialised in radiography. So they can be excellent. I did get told by an experienced consultant you have a weird thyroid, like someone with Hashimotos, but I don’t think you have Hashimotos as your thyroid is still within normal limits!! But weeks later it was removed and the lab report, was like even upon first look, obviously knackered from Hashimotos! And the ultrasound after that, very experienced woman, was like Jesus, this is all so inflamed, your lymph node area and thyroid very, very inflamed, and asked me if I’d had my antibodies tested!

ILR2019
ILR2019
in reply to Coachgeorge

SlowDragon is spot on. Despite suspecting thyroid problems for the last 3/4 years my GP kept assuring me my symptoms were not thyroid related and anxiety (ob now know caused by thyroid). I never knew back then to query my results (why would I, we trust our GP's with our health right?) Then when I got a call last year saying thyroid come collect your meds I breathed a sigh of relief. Finally (I thought) they know what the problem is and how to fix it. After a few months the Levo would kick in, symptoms would diminish and my weight would drop)......how wrong I was. I thought my surgery were being particularly lax which was what brought me to these forums. I felt ill. My symptoms were getting worse despite Levo and I had had enough. It was only then I realised the scale of the problem. My GPs ignorance is no isolated case, it's nationwide! The admins on this forum know more than all the health professionals ive had the misfortune of dealing with. Thank goodness I found this place!

JaneyJaney
JaneyJaney
in reply to ILR2019

Doctors don’t seem to realise that we know our own bodies and we know when we aren’t right.

I have been experimenting with CBD oil for the past 8 months or so. I had a truly dreadful time starting it. I had terrible nausea and could hardly stand due to dizziness and lightheadedness.

Maybe that's got something to do with it. I have no idea if the fact I had loads of symptoms was related to being hypothyroid. They do say it can be good to have a bad experience starting out with CBD, I believe the term is Herxheimer reaction. I'm not sure I fully believe that, but I persevered and have had some improvement on it.

I have actually have quite a lot of lightheadedness and feeling about to faint while I've been hypo. Usually it's not a one off thing that comes suddenly, but just the fact that its very difficult to stand up for any length of time. I've also had low blood sugar effects, which do come on more suddenly. And also more faint/low blood pressure feelings during my period.

Overall I'd say feeling faint is a hypo symptom that can be triggered by or be made worse by a lot of other things.

Do you take your CBD oil at least two hours away from your thyroid hormone?

Yes I do, which is a further nuisance because the advice is to take that 3 times per day as well. Fortunately its best to take it with meals so it's compatible with fitting into my daily routine to an extent.

But it adds an extra hour here and there which locks things down almost completely for me :( Means I only have an hour slot for most of my meals.

Because of the difficulty fitting it in with all the other supplements I take, I only take my CBD once a day - in the evening before bed - but I've still had terrific results with it.

Oh, that's interesting!

I've gone down to only one dose because I thought it might be a trigger for some palpatations. But it hasn't reversed any of the benefits I've had. I did that just to keep it ticking over and was planning to build up later, but maybe I'll stick with just the evening dose!

Yes, they say the reason for multi-dosing is because CBD only stays in the system for two hours. But I don't see why during those two hours, it can't make improvements that stick. Well, it did for me, anyway.

CBD oil should not cause fainting, so don't worry about that. It's far more likely to be your low T3. :)

Salmos
Salmos
in reply to Coachgeorge

Question: is vitamin D not good to take if you have hypothroidism? I also live in the US by the way. Ive been hypo for almost15 years and my endo told me last year to take vitamin D3 because i had low energy.

Coachgeorge
Coachgeorge
in reply to Salmos

I’m low on D as well. I take a supplement. Got a prescription from my doctor

Salmos
Salmos
in reply to Coachgeorge

Nice. I feel like alot of ppl here take vitamins. I take zero. No longer taking vit D either. Im on .150mcg levothyroxine. Im not sure what vitamins to take actually. How do i find out?

Coachgeorge
Coachgeorge
in reply to Salmos

Start a thread and ask. There are several knowledgeable folks that can help you. I’m a newbie so I wouldn’t want to give information yet.

Salmos
Salmos
in reply to Coachgeorge

I see. Although ive been hypo for years i really feel like im just starting to learn alot. I feel like a newbie too. Thank you and good luck.

Jodiedebs55
Jodiedebs55
in reply to Salmos

Vit D3 is VITAL if you have hypothyroidism, I started off taking 5000 iu I now take 3000iu as a maintenance dose daily with my evening meal as it needs to bind to fat to work properly, I was dreadfully ill when I wasn't taking it and my symptoms improved immediately when I found out from this forum that it is crucial for maintaining thyroid health

Salmos
Salmos
in reply to Jodiedebs55

Oh wow! What were your symptoms before the Vit D?

Jodiedebs55
Jodiedebs55
in reply to Salmos

Pain in joints especially around the sides of my knees to painful to touch at times , headache, pain in my shoulders and neck , lethargic, mood swings, cramps , Vit D3 gave me so much relief I'm not joking its absolutely necessary and I wouldn't miss a day if I did my symptoms would return hope this helps

Salmos
Salmos
in reply to Jodiedebs55

I have those exact symptoms! I will begin taking Vit D as soon as possible. Glad you are feeling better. Hopefully soon I will too. Thank you so much!

SeasideSusie
SeasideSusieAdministrator
in reply to Salmos

Salmos

You can't just take Vit D. You need to test your level and dose appropriately, also there are important cofactors necessary when taking D3. Too much Vit D can lead to toxicity.

For Vit D only, an easy home fingerprick test with an NHS lab which offers this test to the general public:

vitamindtest.org.uk/

When you have your result, start a new thread and comment can be made on how much D3 you need to take and what cofactors are needed and how you need to monitor your level.

However, if you haven't had your other vitamins tested then it's advisable to do so - B12, folate and ferritin. Medichecks and Blue Horizon both do these tests but possibly the cheapest way is with a thyroid/vitamin bundle which includes the thyroid panel and the full set of vitamins - Vit D, B12, Folate, Ferritin:

Medichecks Thyroid Check ULTRAVIT medichecks.com/thyroid-func... You can use code THYROIDUK for a 10% discount on any test not on special offer

or

Blue Horizon Thyroid Check PLUS ELEVEN bluehorizonmedicals.co.uk/t...

Both tests include the full thyroid and vitamin panel. They are basically the same test but with the following small differences:

For the fingerprick test, Blue Horizon requires 1 x microtainer of blood (0.8ml), Medichecks requires 2 x microtainers (total 1.6ml)

Blue Horizon includes Total T4 (can be useful but not essential). Medichecks doesn't include this test.

B12 - Blue Horizon does Serum B12. Medichecks does Active B12.

Serum B12 shows the total B12 in the blood. Active B12 shows what's available to be taken up by the cells. You can have a reasonable level of Serum B12 but a poor level of Active B12. (Personally, I would go for the Active B12 test.)

Jodiedebs55
Jodiedebs55
in reply to Salmos

My vitamin levels were very low when I had them tested which is why I had to supplement to improve them I'm now taking a maintenance dose of my vit D3 hope this helps

I wonder if some of your issues stem from your use of CBD oil. There is inconclusive evidence as to whether or not it affects the absorption of levothyroxine. Some sites I looked at say it is possible and others say unsure. I wonder if substituting something else for your anxiety would improve your reaction to your meds. It’s worth talking to your MD . The dizziness makes me suspect that there is something else going on- but it could also be underdosing.

I think it’s the cbd. It happened very shortly after I dosed. My doc is a real supporter of cbd for a lot of conditions. She just increased my dose to two drops. My blood pressure has also gone down since the introduction of t3. She backed my blood pressure meds down, too. It’s all a mess and very scary.

In my opinion you need an endocrinologist. Your doctor, as good as she may be, is trying to treat too many things at once and not sure she understands thyroid or the drugs you are on and their effects in your body. My 2 cents yet again .... good luck and feel better soon.

Cica77
Cica77
in reply to Coachgeorge

I've taken cbd since autumn (on and off) and levo since the July before. Never had an absorption issues etc but do make sure I take it 4 hours apart like with vitamins and iron. These days, I mostly just take it to get to sleep better but take 5 drops or so. 2 drops is very little unless it's very high concentration.

I used to get quite serious dizziness last spring before my thyroid diagnoses - enough that I was prescribed anti-dizziness tablets (that did nothing btw) but it went away once Levo started. It's far more likely to be under medication for thyroid.

Having said all this, if you are taking cbd to help with anxiety and taking it is making you nervous, it might not be the best solution for you.

Coachgeorge
Coachgeorge
in reply to Cica77

I think the cbd works for me but not sure I need the two drops. I wasn’t having the fainting sensation until recently. We are trying to stabilize my T4 and t3. I still don’t get out much so I’m going to watch it carefully this weekend. If it happens again, back to the doctor on Monday. Thank you

It's not stabilizing you should be doing, but optimising. I've never understood the use of that word where thyroid is concerned - unless we're talking about Hashi's. :)

I've been taking CBD oil for over a year, now, and never had any problems. It's been a god-send for me. I couldn't walk straight before I started it, and struggled to get up and down stairs. Now, I walk just fine. It's also helped a lot with my back pain.

CBD oil comes in several strength. Perhaps she started you on one that was too strong? Do you take it at least two hours away from your thyroid hormone?

I do in the morning. The faint feeling came in the afternoon after my second cbd drop. It’s also the furthest away from my T3. I seem to have a lot of tingling in the afternoon, too.

How long have you been taking the CBD? I think if the fainting were due to that, you'd have noticed it before now.

It might be the change in dose. Going back to one drop

I would be very surprised if it was.

Shaz26
Shaz26
in reply to Greekchick

Yes first step is to see the Endocronologist. Homeopathic med “Aurum Met and “Ignacia” are very good and helped me a lot with anxiety and hyperthyroid symptoms. I suggest you visit a health food store or see a homeopathic doctor. Safe meds good results, no side effects either. Keep me posted. Good luck.

Coachgeorge
Coachgeorge
in reply to Shaz26

Thank you!

I would advise against a health food store. You can get some very strange - and possibly dangerous - advice in those places. Know what your doing before you visit one, if you want to go down that road. Don't rely on untrained staff.

I got in a mess with B vitamins in a health food store. I always go through my doctor now

Well, that's not much of an improvement, but still… :)

love your dry humor gg

Shaz26
Shaz26
in reply to greygoose

It depends which health food store u go. Homeopathic is safe and some health food stores carry them,still best nervous to see a homeopathic doctor first

greygoose
greygoose
in reply to Shaz26

Homeopathy doesn't help with thyroid. I've already been down that road, and the homeopath himself admitted that it can't help thyroid.

One of my children is committed to home remedies, healthy eating including no meat, and sees a homeopathic doctor. She has thyroid problems as well. Her doctor told her the same thing.

I get severe weakness suddenly and feel like I’m going to pass out. For me it can be either under medicated or over medicated. I have Hashimotos. I have learnt to react to my body alarm and either reduce or increase my T4 and T3 medications. I always have a spare blood form at home. And if this fainting happens I go to have my bloods checked. It’s always either too high or too low T4 or T3 for me and I don’t know why it changes suddenly. Maybe it’s the antibodies attacking. Sometimes I feel like I’m on a tight rope, one false move (levels) and I’m falling again. I only take small amounts of Levo 75mcg and T3 5mcg twice daily. So any changes must also be small also. I don’t know why I only need these low amounts compared to others I’ve read who are on much higher doses. I guess we are all different with our own bodily requirements.

If your MD has lowered your blood pressure tablets could this be contributing to feeling faint. I do know when I was really under medicated that my blood pressure would drop and spike a lot. Do you have a blood pressure monitor at home to check when you feel faint. Sometimes I’d feel faint but my blood pressure was fine 120/80. I now know it was my thyroid medication needing adjustment. Then once adjusted I’d feel fine again. I’d notice it immediately with the T3 medication. T4 May take a little longer to settle.

minkjaere
minkjaere
in reply to McPammy

Hi,

I also take very small amounts as my body can't take the whole dosage. I am on 5 mg neomercazole, but i have to cut them in 4 parts, so in principle i am only taking 1.25mg, 4x a day, and levaxin 25ug, and again, i have to cut them in 4 parts. My body reacts as if im overdosed in the beginning when i have to follow the correct dosage. I was even taken by an ambulance due to very high blood pressure. I am in medication for 5 months now and i am getting better and went back to work again. I guess, each body reacts differently. But how i wish i can be like anyone else that can tolerate the high dosage as if it is nothing. My life can be simpler that way

McPammy
McPammy
in reply to minkjaere

Your reactions and doses sound very similar to me. I too was taken by ambulance to hospital when my blood pressure went very high. I didn’t know how high until I reached hospital. It was all to do with Levothyroxine. I’d been on Levothyroxine alone for 11 years (with difficulty always). Then something went wrong. I still don’t know what. And suddenly I could hardly walk. This went on for 15 months and I went from a full time job to being housebound. Eventually I found out I wasn’t converting T4 to T3 very well at all. I was given T3 medication and it was like a miracle for me. Within a day I was up walking and could do most things. I then decided to do a DIO2 gene test with Regenerus Laboratories. The test came back positive that I have a faulty gene meaning I struggle to convert T4 to T3. I do believe that I’m hardly converting at all now. And I wonder if I should even be on T4 Levothyroxine. This I need to discuss with my private Endocrinologist. I don’t know why I’m so very sensitive to my thyroid levels these days. I’m on a tight rope. Something has happened but I don’t know what.

Maybe too many years my body has struggled trying to convert the T4 to T3 and then it just gave up after 11 years. Thankfully now on T3 I’m much better.

By the way I too get faint suddenly after feeling ok for some hours. I’ve found that if it’s after say 6 hours since your last T3 dose then it’s the T3 wearing off and T4 isn’t converting into T3 well. Or if it’s shortly after taking the T3 it could be you are going over medicated. Try and write a timeline diary of when you took the T3 and when you feel faint. Do you have blood test results when on T4 alone to see how you are converting.

My T3 bloods never got better than 3.9 (3.7-6.0) when on T4 alone. This convinced me that I’m a really poor converter. And in the UK the NHS ranges are far too wide.

ILR2019
ILR2019
in reply to McPammy

I'm so sorry you had to go through that 😪. I truly don't understand how a persons life can be turned upside down yet a doctor can allow a patient to suffer for that length of time without knowing cause (or at very least knowing where to look). And it is suffering and it is unnecessary and unfair. This angers me so much.

Thank you. I’m just learning how overwhelming this disease can be. I’ve been off work for 7 months. Hoping I’m on the right track.

McPammy
McPammy
in reply to Coachgeorge

I’m very sorry to hear how poorly you are and have been. I’ve been off work for 15 months now. I lost my dream job with Rolls-Royce over all this last year. You will be ok. You sound like you have a good doctor. My NHS Endocrinologist said I had no Endocrine issues!! Then sent me to neurologists. That was a waste of time. It was only when I finally went private he found I have a conversion disorder then gave me T3. I do have an Endocrine issue of course.

Coachgeorge
Coachgeorge
in reply to McPammy

I’m sorry to hear about all you’ve been thru. This is truly a very serious disease. I’m in the US so things are a bit different. I have some concerns about my doctor but I can’t see an endocrinologist without a referral from her. She’s an internist not a GP. I’ve talked to her about it but haven’t gotten much support. It’s early morning here and I’m not doing great. Hopefully, the day will get better. I’m am truly sorry you lost your dream job. We WILL be okay....takes time.

Coachgeorge
Coachgeorge
in reply to McPammy

Thank you for sharing. I do think it’s related to several of the things you’ve mentioned. We are trying to find the right doses of meds right now. I’m on 50 mcg of levo and 7.25 of t3. I also think I’m going to back down to one drop of cbd. If it’s the t3 that is lowering my blood pressure, I’m happy to get off the blood pressure meds. The fewer meds, the better. I’m starting to wonder if a number of my health problems, over the years, haven’t been Hashimoto related.

McPammy
McPammy
in reply to Coachgeorge

You’d be surprised how many things in your body can go wrong when your thyroid levels are not right. Hashimotos effected my blood pressure, eyesight, migraines, weight gain, muscle weakness, balance, bowels, heart rate too low, skin, hair, feet, water retention. These are what I can think of off the cuff. Now I’m on T3 finally all the above are now good. I’ve lost 20lbs in 4 months after putting on 28lbs when under medicated last year.

Once you get your levels in a good place for you I bet all your symptoms will dissipate.

Coachgeorge
Coachgeorge
in reply to McPammy

Thank you for the encouragement. I’m just learning the power of the thyroid. It’s put me in bed for 7 months. With the support of this group, I feel like I’m finally getting better. For so long, no one knew what was wrong. It’s been a very scary ride.

McPammy
McPammy
in reply to Coachgeorge

I glad to hear that you are going in-the right direction now.

Take good care x

McPammy
McPammy
in reply to Coachgeorge

Sorry .... Just one more big issue I forgot to mention was that I had very low cortisol too. I was tested for Addison’s and glad to say I haven’t got that. What my low thyroid T3 also did was reduce my cortisol or it couldn’t perform without T3. Once I started T3 my cortisol rose from 68 (155-607) at 9am to 466. I think this even shocked my GP. So not only did my thyroid levels improve significantly but my cortisol did also.

Also my Endocrinologist swapped me to liquid Levothyroxine. I have to take my 75mcg dose in 2 lots. As it’s liquid you can tailor the dose to your own needs. You just draw the liquid in a syringe and squirt it in your mouth. I take 38mcg then 38mcg with a few hours in between. This way stopped the tingling and being very ill later on. Is doesn’t matter how often you take Levothyroxine as long as you get the right dose in as it builds up and just sits waiting to be converted into active T3.

Coachgeorge
Coachgeorge
in reply to McPammy

That’s great information. I have the late day tingling. Maybe, the liquid would help me, too. I’ll ask my doc. Thank you!!

McPammy
McPammy
in reply to Coachgeorge

I believe the tingling was the Levothyroxine trying to get to work and convert but my body couldn’t do it and this is when my blood pressure would go high, I checked it during the tingling several times.

In the past I’d take say 75mcg of Levothyroxine. About 90 mins later I’d get mad tingling starting in my legs. Then before too long I’d be crashing to the floor or sliding down walls. It was really scary. It was only when T3 medication started and I split the Levothyroxine dose that I started to feel ok again. Now I take my T4 in the evening and T3 at 8am and 3pm daily. I put an alarm on my phone to remind me.

I also had low B12 and low ferritin. I’m now on life long medication for these.

I hope I’m not bothering you sending all these messages. I’ve not come across hardly anyone who’s had very similar symptoms to me before.

If it wasn’t for this forum I think I’d still be on the floor struggling not knowing what on Earth happened to me.

The people on here really helped me recover and get well again

Coachgeorge
Coachgeorge
in reply to McPammy

I appreciate your help. Doctor mentioned day vs night dosing. Let’s keep communicating. My blood pressure cuff isn’t reliable. I’ve replaced it twice. What brand do you use?

McPammy
McPammy
in reply to Coachgeorge

I use Mercury Pharma liquid Levothyroxine 50mcg.

There are lots of brands. The only one I don’t get in with is Teva. I draw 38mcg at a time. I take 38mcg at 8pm then 38mcg as I’m going g to bed.

I also use ThyBon Henning 20mcg T3. This I get privately from Germany. I cut this into quarters. I take 5mcg at 8am and 5mcg at 3pm.

I was diagnosed by the leading Endocrinologist in the UK.

I trust in him. No other Dr had managed to help me. And I saw many over a years period. In A&E. I stayed in hospital 3 times and they still didn’t have a clue. All along I needed T3 and splitting the T4.

I do believe something happened to me to cause such a downturn in my health. I’m still not sure what.

I was on Levothyroxine alone for 11 years before I hit this brick wall. During those 11 years I had many fainting type issues or loss of strength and swaying. No Dr knew what is was. Now I now for sure after being given T3 and doing the DIO2 gene test which sealed it.

I now know what and why. But still not sure why I hit that brick wall.

Coachgeorge
Coachgeorge
in reply to McPammy

Interesting! I took 100mcg of levo for years with no problems. When I had the flu this past Christmas, I was given steroids. After that, all my symptoms started. For months, we thought it was anxiety and a reaction to the steroids. I even went to a psychiatrist. Then, my doctor went over my chart almost day by day. Something happened with my thyroid in November. My ft4 suddenly went out of range. She had me take my levo 6 days a week to instead of seven. We didn’t check my thyroid again until spring and I was even further out of range. Since then, we’ve been trying to get a handle on things. Like you, we aren’t sure what wall we hit. My doc is aware that I’m under medicated but we are taking things very slow. I don’t do well with medication of any kind. She raised the t3 from 5 mcg to 7.5 to see how I’d tolerate. Next draw is in two weeks. She may also raise my levo. Just trial and error, as you well know. Keep in touch. Our stories are similar. What kind of blood pressure cuff do you use?

McPammy
McPammy
in reply to Coachgeorge

Steroids effect your cortisol. Cortisol is your own steroids. If you take steroids your own adrenals can go to sleep. How long were you on the steroids for. Why were you put on steroids for flu? Seems odd. Is your cortisol low.

Also low thyroid levels effect your cortisol/steroids. Your thyroid drives your cortisol/steroids.

Thyroid and Cortisol go hand in hand. I have learnt that throughout this past year. My cortisol was in the floor. Now with T3 it’s good.

I had a flu vaccine jab not long before I became ill. I did think last year could it be anything to do with it. I haven’t had the flu though. I think you having steroids may have some bearing on things. How much was you on. I guess it was hydrocortisone. They also put me on hydrocortisone as my cortisol was so low. It didn’t work. It had the opposite effect like a tranquilliser. I just fell asleep. My body I guess saying no. T3 request please.

My blood pressure cuff is just from a local pharmacy made by Salter. I used it a lot last year. Now it’s away in a cupboard. Although I still get odd bouts of weakness mainly at noon. I think it could be the cortisol dropping out too fast. Always at noon every bodies cortisol drops out. It’s always highest at 9am they say. For me mine is highest at 7.30am. I know this from blood tests done. I think you request a cortisol test. You can have saliva or blood. I think saliva is better as you can do it throughout the day. Also ask for a synacthen test. This measures if your adrenals themselves are ok. This is how Addison’s is checked.

Has your MD suggested a day curve. To measure your adrenals and thyroid. If not ask if this could be done.

Have you had your ACTH done. ACTH stimulates your adrenals/cortisol. My ACTH was too low 0.5(2-11).

In fact everything went far too low. Heart rate was only 43. I was in a mess. I felt like I was sinking in quicksand. Horrible.

Keep taking the thyroid medications. Ask for your cortisol to be checked. Especially if you’ve been on steroids! Ask for a day curve and a synacthen test to rule out Addison’s.

Coachgeorge
Coachgeorge
in reply to McPammy

I’ve wondered about cortisol. I was on two separate doses of methylpredisone. I finished one pack and didn’t get any better so we started another. About half way through I was a mess and stopped taking it. It’s been downhill from there.

McPammy
McPammy
in reply to Coachgeorge

How many times a day do you take your T3 7.5mcg???

Coachgeorge
Coachgeorge
in reply to McPammy

Once in the morning. Today is my third day.

McPammy
McPammy
in reply to Coachgeorge

Well I truly think this maybe your problem. T3 medication only lasts 6-8 hours. Do you notice you are worse in the middle/late afternoon?? Most people take T3 at least twice a day. Sometimes 3 times depending on your needs.

I think you need to take it in the morning then again about 6/7 hours later. And take the same dose of 7.5mcg twice. If this is too much just take 5mcg. It has a very short life. It’s not like T4 Levo. T4 builds up over time and has a long life. T4 sits in your body waiting to be converted to T3 as it’s required.

You need it at least twice a day.

Coachgeorge
Coachgeorge
in reply to McPammy

I’m having a rough morning. Yesterday afternoon was rough, too. I’m wondering if my body is trying to adjust to the change from 5 to 7.5

McPammy
McPammy
in reply to Coachgeorge

Maybe your Doctor give you an increase and you should have been on 5mcg TWICE a day. Not increasing to 7.5mcg once a day. Your T3 levels will increase then you’ll have nothing if you’re not converting.

greygoose
greygoose
in reply to McPammy

That is absolutely not true. T3 has a half-life of 24 hours in the blood - it certainly doesn't only last 6 - 8 hours. Half-life means that if you take your 10 mcg T3 at 8 am one day, by 8 am the next day, there will be 5 mcg left in the blood, less what got into the cells. And, what gets into the cells stays there for about 3 days. The reason people take T3 several times a day is because it evens out the picks and the troughs, which they find easier to live with. Not because the T3 runs out. :)

McPammy
McPammy
in reply to greygoose

I was going on what I was told by my Endocrinologist. I thought he would know as he is a Professor in Endocrine.

Thank you for clarifying how long T3 stays in your system.

This is news to me. I stand corrected!

greygoose
greygoose
in reply to McPammy

Yes, I know, we'd all love to think that endos know what they're talking about. But, it often seems to me that they just make it up as they go along. That bit certainly isn't right, I'm afraid. :)

Coachgeorge
Coachgeorge
in reply to McPammy

Did you have trouble adjusting to the t3?

McPammy
McPammy
in reply to Coachgeorge

No. Well not for about 3 months. Then my brand got changed and that caused a couple of issues. It was Sigma 5mcg causing skin problems.

You can double check with people on here or talk to your Dr. Or google life of T3 medication. It only has a maximum of 8 hrs.

I honestly think you should try adding another 5mcg dose about 6/7 hours after your first dose.

A Dr put me in NDT and wrongly prescribed it as one a day. By 3pm I was in a mess everyday. I didn’t understand then but I do now. It’s not possible if you’re not converting or poorly converting to keep going on T3 all day with just one dose as it’ll be gone within 8 hrs.

I’m not a Dr but I know enough about T3 that if you’re not converting you’ll need it at least twice during the day.

Coachgeorge
Coachgeorge
in reply to McPammy

Wonder why I’m struggling this morning. I’m back in bed, very weak with the chills. I thought it might be my body adjusting to the increase.

McPammy
McPammy
in reply to Coachgeorge

Well chills can mean under medicated and you’re hypothyroidism is still ongoing. People get very cold with hypothyroidism.

Have you taken your T3 today. What time do you take your T4.

Taking too much T3 can make you feel weak also.

Can you call your MD to ask why they haven’t prescribed twice a day.

Do you know your latest blood tests. And did you refrain from taking any medication before your last blood draw.

You must refrain otherwise the bloods can show a spike and my alter you TSH, T3 and T4 results.

Coachgeorge
Coachgeorge
in reply to McPammy

Took them both at 5am. It’s 10:24 am here. Been struggling all morning. Yesterday and the day before I was better than I’d been in months. At least, until yesterday afternoon

McPammy
McPammy
in reply to Coachgeorge

Then like I said you need 2 doses of T3 per day.

It only lasts 6/7 hours. So you took it 5.5 hours ago. And if you are not converting your T3 will sink as the tablet wears off and you’ll feel tired and weak because of this.

Coachgeorge
Coachgeorge
in reply to McPammy

That makes sense. I just don’t understand why I’ve been bad since I took it today.

McPammy
McPammy
in reply to Coachgeorge

Maybe as the Dr increased your T3 from 5 to 7.5mcg. She should have said 5mcg morning and 5mcg afternoon.

You’ve gone up by 50% that’s quite a bit really. You may now be going over medicated. Just try 5mcg now and see how you feel in an hour. Let me know. It’ll wear off. Then tomorrow try 5mcg morning and 5mcg afternoon. But not with T4 medication. Sometimes we have to go with how we feel.

I now know when I’m going over or under by how I’m feeling. If I’m very hot and weak then I’m over. If I’m cold and weak I’m under.

Coachgeorge
Coachgeorge
in reply to McPammy

Got it

McPammy
McPammy
in reply to Coachgeorge

I’ve also read that you shouldn’t take T3 and T4 together. Take them hours apart. Always take T3 as you get up with a glass of water. No food for an hour. Same with afternoon T3 water only. No food before or after for at least an hour.

Coachgeorge
Coachgeorge
in reply to McPammy

Will give that a try

SeasideSusie
SeasideSusieAdministrator
in reply to McPammy

McPammy

Can you please provide a link for where you've read

I’ve also read that you shouldn’t take T3 and T4 together. Take them hours apart.

I haven’t got a link sorry. I’ve read on here that people have been advised not to. There was a member saying that today also in their post.

I’ve not be advised not to. But I always take mine hours apart.

Coachgeorge
Coachgeorge
in reply to McPammy

I’d love to have the link, too. I’ll see if I can find something. Least I can do to contribute

MaisieGray
MaisieGray
in reply to McPammy

McPammy It isn't the case across the board, that "It’s not possible if you’re not converting or poorly converting to keep going on T3 all day with just one dose as it’ll be gone within 8 hrs." I have always taken only one dose per day, well, at night, and have tested homozygous positive for the DIO2 (T92A) rs225014 variant ie a decreased ability of the enzyme to generate T3, and have never had a problem keeping going. T3 isn't gone in 8 hrs, it has a half life of around 24 hrs (research in '72 concluded it was slightly shorter in hyperthyroidism and slightly longer in hypothyroidism, and around 24 hrs in euthyroidism) so even after that time, half of the dose remains, and the next day, half of that amount remains, and so on until it's all gone, although of course, meanwhile you would have taken your next day's dose.

Still trying to find out why I appear to be having side effects. Thoughts?

McPammy
McPammy
in reply to MaisieGray

I fully understand now. Sorry.

Just repeating what I was told by my Professor in Endocrine recently.

Jodiedebs55
Jodiedebs55
in reply to McPammy

I struggle to lose weight iv gained 3st in 18 months, I'm hypo and hashis I take 75mcg T4 and 10mcg T3 I source my own as gp refused, I know I have problems with conversion and hoped by taking T3 I'd see some weight loss but infact its steadily increasing and I'm eating well no processed or fried foods I simply don't understand what I'm doing wrong I seem to be the only person on T3 that's putting weight on.. sorry to jump on your post x

McPammy
McPammy
in reply to Jodiedebs55

What are your latest blood tests saying. You could still be under medicated. What T3 are you on. How do you feel? Is it the weight gain only.

Are your vitamins all optimal.

B12,D, ferritin and folate.

Jodiedebs55
Jodiedebs55
in reply to McPammy

Hi thanks for your reply yes vitamins are all optional its defo not that and the brand of T3 is uni pharma liothyronine sodium I know it's not cytomel but I cant afford the decent brands as I have to source it myself as I'm a poor converter and gp wont help but knows I'm on this , I just have zero motivation and I'm like a slug the weight is piling on and I'm gluten free and eat VERY healthy all organic and local sourced veg , fruit and meat , I'm so uncomfortable with the weight its actually painful now as I have severe scoliosis of the spine and its uncomfortable to walk sit or lay, I'm not due bloods till September

Your GP may be keen on CBD oil, but if you feel it is having a negative effect, drop it. You’ve introduced T3, had your blood pressure meds reduced etc - you’ve got a real cocktail going on and CBD is something else being added to the mix.

Perhaps focus on getting your thyroid meds right as that will make you feel so much better in so many ways - otherwise it’s hard to know what is having an effect. 🤸🏿‍♀️🥛

This is one of the reasons my friend stopped T3 medication, and went back to Levothyroxine. She felt that she has less control over her body with the ups and downs.

Coachgeorge
Coachgeorge
in reply to dfran

I’m not converting so I think I have to give the t3 a shot. Might be too much cbd as she just increased my dose. Thanks for the information. I think you’re right about the cocktail. If the T3 is helping my blood pressure, maybe I won’t need to take the blood pressure medication anymore. 🤞

I have had these spells for many years. They very quickly pass and I don’t let them interfere with my daily activities. I really have no clear idea why but they are just part of me. I gave me worrying about anything I felt years ago.

I get the dizzies at times too & I can’t concentrate for a while, luckily doesn’t happen too often. Have you tested adrenals? I think mines worse when loads of stress. Also low folate & low B12 can cause anxiety. My dizziness was extreme when started on B12 injections & wasn’t taking folate, luckily things improved. I think it’s possible if it’s just since cbd then maybe worth stopping to see if it goes, could be reaction to that. Hope you figure it out.x

Have you been been tested for Postural Orthostatic Tachycardia Syndrome?

I haven’t. I have a cardiologist but he hasn’t expressed concern. I watch my heart rate very closely. Thanks

Low potassium does that to me.

I get dizzy and fainty when I over eat and I eat normally. Much healthier when I’m fasting and only having two small meals a day, combined of course with a handful of high quality vitamin supplements. Boring, I know, but I have much more energy and sleep better when I eat only protein, and veg and my blood sugars balance out.

I have fainting spells that come from low blood pressure (and I am normally on the high BP side). Worth investing in a blood pressure unit to test your own so that you can rule that out as a potential reason. I had low blood sugar and low blood pressure at the same time on a cruise this year after a severe cough and being quite weak. I am not diabetic so had never experienced the low blood sugar before. You should try and find the cause if it happens quite often.

I'm so sorry your having to experience fainting spells . I would suggest that you check out your adrenals / electrolytes /salt . Sometimes when Electrolytes are off one can experience dizziness/fainting spells . Also have you had your Blood Pressure checked out too ?

Best Wishes

My blood pressure is typically high. I take medication. However, since I started the T3, it’s been dropping. Makes no sense

I experienced many symptoms amongst them high BP with being on T4 only . Once my T4 was lowered and some T3 added my BP decreased too . I'm not a good converter T4 to T3 . I had TT and our once healthy thyroid did make T4 and T3 . Now my T3 /T4 comes in a bottle .

😀 I hate to be ignorant but lots of folks refer to TT. What does that mean? I’m fairly new. Thanks

Oh I'm sorry it's just abbreviated for Thyroidectomy . I had my thyroids removed .

No worries. Everyone uses it. I just never knew what it meant. Had a suspicion but wasn’t sure. Thanks

Your Very Welcome .

vocalEK
vocalEK
in reply to Coachgeorge

You might need to have your dose of blood pressure medication lowered. Docs wanted to put me on BP meds because it spiked when in the doctor's office (white coat hypertension) but I refused because it can be pretty low at other times. Also T3 can lower your BP overall, so its a good time to ask doctor to see if BP meds need to be adjusted.

Coachgeorge
Coachgeorge
in reply to vocalEK

Great observation! She did cut my meds in half. We will see how it goes for the next few weeks.

I'm very sensitive to temperature extremes. The sun and heat sometimes makes me feel nauseous and dizzy. Many times I know I need to sit down even if its on the floor. Not sure if theres anything that can be done except I try to avoid going outside in sun.

Coachgeorge
Coachgeorge
in reply to SLC60

Interesting point. It happened when I walked yo the mailbox. It was 90 degrees. Thank you

If it seems to happen just when you stand up, it could be positional orthostatic hypotension. Your BP drops when you stand up.

Hey Coachgeorge, some very good advice on here. Also be mindful that your blood pressure will always drop after eating a meal. If this is happening whilst you are sitting still, then needs checking by way of BP test & blood test, may a 24hr tape (cardiac or BP)

If you feel faint whilst walking then this is what we call a ‘big red flag’ & needs investigating. Think of your circulatory system as a central heating system. The water pump (heart) has to pump blood adequately, radiator fluid (blood) must have adequate amount, radiator pipes (vessels) must have orthostatic competence, in other words be able to deliver blood around body/ not collapse or be blocked by a thrombus/clot. If any one of these is comprised then you have a problem. Also remember before standing up, adjust slowly. Feet down, wiggle toes, sit up then stand up, with a good minute in between each. Finally & most importantly, if you feel faint, get down & stay down. Lay down (not sit) & preferably raise legs to get blood back to head.

Would be nice to know what your blood pressure is throughout the day, a BP monitor (brachial type, not wrist) would be a worthwhile investment.

Good Luck 👍

I am struggling to get a diagnosis at the moment - I have severe symptoms but am being told I have subclinical hypo which neither GP nor NHS endo will treat - I have had dizziness swaying and problems with balance for 18 years - over the last 2 years I developed vertigo which took the form of attacks which would last for a week at a time or would come out of nowhere - then in April this year I had a weekend where I was really bad and felt on and off like I was about to faint. On the Friday evening the combination of low blood pressure, fatigue and the feeling that I was about to pass out was so bad that that night at bedtime I stood at the edge of the bed and was afraid to get into it in case I didn't wake up in the morning. Told my GP - got the look that says "I am sure you are exaggerating" and continue to go untreated.

When I was being overdosed for two years due to an error by my GP I would suffer spells approximately every four weeks where I would break into a sweat and feel faint. On several occasions I became unresponsive and was rushed to hospital, unfortunately it took them 2 years to discover the problem. The doctor who discovered it was in a blind panic when he told me my metabolism was running at 200% and that I was lucky to be alive. I was told to stop taking thyroxine for a month and see my GP to get back on to the correct dose. I have been OK since, although I am left with a lot of muscle weakness and pain. I now adjust my thyroxine depending upon how I feel however my requirement seems to vary and it is not easy to stabilise so my suffering varies from being in agony to sometimes having a good week with no pain at all. I do not think the medical profession have a clue about this problem and one thing is for sure, THEY DONT CARE! By the way, the initial symptoms are the same if you are over or under and tests mean nothing.

really they want us all dead or zombies so they can controll us renegades! iwas inhospital with a suspected stroke 3 weeks ago, i had a heck of a lot of stress, but i thinkmy symptoms were low cortisol,i even took prof chews clinic letters when i had headscan ( no stroke)---saying i produce low cortisol and low acth but it was not aknowledged!

Have you had an sst to test for Addisons?

hi nessy, i have had a short syn test in 2011 my base was 217 ( low) check out Prof C. Net doctor site 550nmol is the cut off point-- and a long syn test i think, from the lovely PRof.c. but as i did produce cortisol albeit low, i was not considered addisons criteria, national neuro doc however did wonder if i had adrenal insufficiency, he was a neuro' doc, i was gobsmacked , i said i thought same but no one wants to know- he said-- no they wont- adrenals ' either work or they dont'!!! he knew more than any endo, but he pointe dout he was a neuro' doc, he suggested in the clinic letter thati may be deficient but as i produce it albeit low that is 'ok'! as far as other medics are concerned,---i think not!!!!!! stress causes high cortisol to start but after prolonged stress adrenals get worn out and produce little i am sure that is correct.

That’s far too low for a base cortisol, I’ve read the same should be between 500-600 but mine always rises so they say I’m fine but it’s hard to get an Endo who’s clued up. Sounds like the neuro doc is talking more sense & should be an Endo as he knows more. I saw an Endo today about thyroid & feel it was a waste of time. Can’t get my levels up when on NDT, now on T4 but he thinks my levels are fine grrr & as usual freak when they see suppressed TSH which is the norm. He’s asked for T3 but who knows if they’ll do it, already been knocked back. Hope you get somewhere. X

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