Please help, so very frightened right now

[Jefner]

Posted yesterday but, pleaseeeeeeeeeeee, really need some reassurance as I feel so very frightened right now with all the symptoms I have.

Have been suffering a lot more the last couple of months but wasn't able to test until Monday due to restabilising on my meds.

Results have come back that I am overmedicating

* TSH L 0.02 .............. 0.27 - 4.20 mIU/L

* Free T4 H 22.7 ........... (12.0 - 22.0 pmol/L)

* Free T3 5.2 ..................3.1 - 6.8 pmol/L

Dose 125mcg Levo, 10mcg T3 (split dose)

Jaydee gave me advice yesterday in dropping my Levo but the symptoms I am experiencing are so very frightening and debilitating. Missed, fast heart beats, elevated pulse, fatigue, mental confusion, body shaking/temors, exacerbated anxiety, feel like I am going crazy, dizzy, lightheadheaded, weightloss, mental confusion, blurry vision, loose bowels, fidgety and can't relax. I just don't know what to do with myself right now and being totally alone isn't helping.

I do take Diazepam throughout the day anyway for my anxiety ie. 2mg but usually take 1mg at a time but obviously I am finding I need a little more but it's not touching the anxiety symptoms I usually have.

I weaned off Propanolol a year ago but still have some so wondering whether, in the short term, I could take it just to help me through. . I am aware it interfers with thyroid but on this occasion it may be helpful to me for a few days?????

"Do beta blockers reduce thyroid hormone levels?

While beta blockers do not reduce thyroid hormone production, they can control many of the bothersome symptoms, such as rapid heart rate, tremors, anxiety, and heat intolerance. Once the hyperthyroidism is under control (with antithyroid drugs, surgery, or radioiodine), the beta blocker is stopped"

"While beta blockers will not change the levels of thyroid hormone in your blood, they will make you feel better by reducing some of the symptoms of hyperthyroidism, including increased heart rate, shakes, and nervousness"

ebmconsult.com/articles/pro...

I only took 25mcg Levo this morning with a view to cutting my dose down to 112mcg but in the meantime with all these symptoms what can I do to help dissipate them. Should I stay on 25mcg for 2-3 days and then start back on 112mcg, or can I stop the Levo completely for a few days to help drop my T4 and then restart back on 112mcg?

Has anyone else experienced what I am dealing with. Please, I need reassurance that this will pass and how long will it take before I can expect to feel these awful symptoms subside?

[JumpJiving]

I would be wary of propranalol - it messes with conversion of thyroid hormones.

I am a layperson, so please check with others too, but my immediate reaction to what you have written is that you want to reduce your levo slightly, but that it might also be worth getting a 9AM cortisol test done.

Are you under the care of an endocrinologist? If so, call your endocrinology specialist nurse to see what he/she thinks.

[Edit - I've just read your post from yesterday - forget about the cortisol test - you've had one done at close enough to 9AM already]

[Jefner in reply to JumpJiving]

morning cortisol was included in the test, Cortisol (Random) 443.0 73.8 - 507.0 nmol/L

6am - 10am 166 - 507

4pm - 8pm 73.8 - 29

[Jefner in reply to JumpJiving]

i am aware of what propanolol can do but in this instance it might be beneficial to me?

"Do beta blockers reduce thyroid hormone levels?

While beta blockers do not reduce thyroid hormone production, they can control many of the bothersome symptoms, such as rapid heart rate, tremors, anxiety, and heat intolerance. Once the hyperthyroidism is under control (with antithyroid drugs, surgery, or radioiodine), the beta blocker is stopped"

[Sparklingsunshine in reply to Jefner]

Your levels are only slightly elevated, ie your FT4 is only .7 above the top of the range, your FT3 is comfortably in range. It maybe these levels are out of balance or too high for your body but I think beta blockers are a drastic solution to what is probably a temporary problem.

Beta blockers have lots of side effects and once you start you cant just come off them, they need to be slowly weaned off. And they might give you the opposite problem, ie make you hypo. Please be careful.

[Jefner in reply to Sparklingsunshine]

i was on them for a few years sunshine but weaned off them a year ago because I learned of the conversion thing but on reading up propanolol is actually used short term for those who are hyper as it helps with the symptoms and I would only take a small amount for a week or so plus my T3 isn't comfortably in range, it's always usually very low but this time because my T4 is over then my T3 looks a little higher

[arTistapple in reply to Jefner]

This is a difficult issue, as when this stuff happens you don’t feel in control of anything.

I allowed myself to be talked into believing I was suffering palpitations (bad enough) but what I was having was supraventricular tachycardia (SVT) which is like palpitations on steroids. It’s OTT unpleasant. Maybe that’s what you are having. Still not necessarily dangerous. It’s my understanding that this is in keeping with hypothyroidism - it’s in the research, although it’s generally thought of as a hyper symptom.

Both too high FT4 and T3 are capable of creating those symptoms (as well as heart issues). Your FT4 looks high (out of range) but your T3 looks ok.

When this happens to me, I stop my Levo for a day. I am not on T3, specifically because I have been having these issues with T3. You look like you have more than enough FT4 your bloodstream right now. Chances are your body won’t notice losing one or two doses of levo. Just to put your mind to rest. The body keeps some around - it is a storage hormone.

I would try that before the propanalol but if that does not work, you are familiar with the effects of propanalol on yourself. Conversion would not be my priority when feeling as you do! You can get back to sorting that out.

[Jefner in reply to arTistapple]

it certainly is very frightening because I live alone and have no friends so totally on my own and my thought process is like I am dying. Please don't put ideas into my head that I have a heart condition lol

[arTistapple in reply to Jefner]

SVT is not necessarily due to a heart condition - just like palpitations are not necessarily due to a heart condition. I was careful not to suggest you have a heart condition!

However you are clearly suffering. That was where my attention was directed.

[Jefner in reply to arTistapple]

very much suffering and extremely frightened too

[JumpJiving in reply to Jefner]

Jefner One thing that I have found helps me is Talking Therapy. I'm a third of the way through a free course of 12 weekly sessions. If you have nobody around you that you feel you can talk to about your condition(s), it can make a massive difference. In my area, it's available without a GP referral, although GPs should be able to signpost how to access it in areas where it is available. Might be worth considering if it's available in your area. It's not something I've ever considered before, but with a diagnosis of adrenal insufficiency just before Christmas when I was very close to adrenal crisis, on top of a host of other conditions, I suddenly felt I needed to talk to somebody and it has been useful.

Another thing that has helped me has been playing audio books quietly when going to bed. Having them playing stops my brain from ruminating on things that worry me, instead my brain is taking in the audio book until I fall asleep, which often only takes 5 minutes rather than the hours it might have taken when ruminating.

[Jefner in reply to JumpJiving]

hello, I am waiting to hear about my therapy, have been assessed but they messed things up and no idea what is going on at the moment. Think I found it on the NHS site and applied. Not sure whether I have applied before because my brain doesn't work and can't remember

[JumpJiving in reply to Jefner]

The one that I do is done using a video call, which I do on an iPad, so no need to leave home to do it. Some people find it more comfortable to live chat (type) without video. but I prefer using video.

For more info, see nhs.uk/mental-health/talkin...

[Fruitandnutcase in reply to Jefner]

When I was hyper with Graves I wasn’t prescribed beta blockers because I have asthma and I was fine without it. I suppose it may have taken longer for the carb to kick in but I got there without it - and I was off the scale hyper.

Will your doctor or hospital prescribe them for you? To be honest I would try to do without them if you can. You’ll only have to stop it eventually which could be another problem.

[Jefner in reply to Fruitandnutcase]

i have had them before but weaned off them a year ago. She is happy to let me try them again but I would only use them for a week or so and probably only 20mcg just to take the edge off

[Sparklingsunshine in reply to Jefner]

The first drug I was offered for migraine was propranolol. Even though its containdicated with asthma. I took one and it massively flared up my breathing problems. I agree with the others that staying off the Levo for a bit is probably a safer option.

I totally get where you are coming from, when you have multiple symptoms, out of nowhere, you dont know if they are related or not. Doctors only tend to focus on one at a time and dont look at the whole picture.

I've had a rollercoaster two years of weird symptoms and new ones appearing. Balance issues, fatigue, nausea, migraines, feeling weak and shortness of breath. I've got no idea what's going on. Its been a nightmare. And if you have no support from friends or famiky then its easy to think the worst. You have my sympathies. I hope you feel better soon.

[JumpJiving in reply to Sparklingsunshine]

Sparklingsunshine - Don't want to hijack this thread, but based on your list of "weird symptoms", I'll ask the same question I asked Jefner - have you had a 9AM cortisol test done? Low cortisol gave me all of the symptoms that you listed, and a host of others, some of which were very weird indeed. Message me if you want to discuss off this thread

[Sparklingsunshine in reply to JumpJiving]

No never had cortisol tested. I've just been referred to cardiology as I have leaky valves and a heart murmur, probably due to Ehlers Danlos. The gift that keeps on giving 😒

[Firtyqwerty in reply to JumpJiving]

Hi JumpJiving where do you get a 9am cortisol test please ?

[Regenallotment Ambassador]

when I was over range last summer my FT4 was 28 and my FT3 was 10 same range as yours 😨

I had upset stomach, felt amazing but a bit warm and sweaty. I could hear my heartbeat more than normal. Knowing the blood test results made me more stressed than the symptoms of over replacement.

Both my GP and private prescriber at Roseway knew about this, neither were particularly worried. They let me figure out how to balance it out. I skipped a week of T4 and T3 then alternated 25/50 a day for a week went to 50mcg a day T4 for a month no T3, then 75 for a month then added 5mcg T3 for 2 months then switched brand of T3 to thybon 10mcg T3 then 15mcg then started to be constipated tired achey cold and testing shows I’m hypo again. Now a few weeks into 100mcg T4 and 15mcg thybon and starting to feel better.

I continued to do blood testing throughout.

Did you also test your vitamins/iron?

My ferritin was a bit high when I went over range but dropped very quickly and I’m back building it up.

Hope you feel better soon, take care, drink lots of water, have some gentle walks and lots of rest 🙏🌱

[Jefner in reply to Regenallotment]

clearly being only slightly over range has had a very very negative impact on me. I usually sit around 18-19 on the T4 and was on 125 Levo for many years before I started T3 but clearly 125 is too much now and 100 too low so I need to change to 112.

the worst symptom for me is how severe my anxiety has got and I must admit I think the same as you, seeing my results has just made me panic even more and it's difficult for me to know how to handle the next week or so in the way of taking a little Levo, leave it off for a few days and then start 112. I just need these symptoms to go but have no idea how soon they will subside

[Rosebud1955 in reply to Jefner]

Hi Jefner: You’ve had some very good advice. Sounds like you have a good plan to reduce your dose of thyroxine for a couple of days. Try to stay positive! This too shall pass. I emphasize with you as it must be difficult dealing with these feeling all alone. Thyroid journey can be very lonely and scary. I don’t live alone, but my thyroid journey has been very lonely. Family members don’t seem to understand our pain because we sometimes look well on the outside. Just remember that although you live alone, you’re not alone. You have this wonderful forum with the most caring human beings. You will be ok once your levels drop a bit. Take care!👍

[Regenallotment Ambassador in reply to Rosebud1955]

I echo this. It’s taken a few years of honest and direct communication with my family to explain how awful I feel at times. They are starting to get it. I found the ‘it hurts to just be’ line very useful. This is why this forum is so valuable.

🌸🌱

[Rosebud1955 in reply to Regenallotment]

Glad they’re starting to listen! I will remain hopeful that my family will start to listen soon. I have no thyroid so it shouldn’t be that difficult for them to get it. What a terrible disease!

[Rosebud1955 in reply to Regenallotment]

It’s 3:08 am in Canada and I’m still awake. My levels are really off. Don’t fall asleep til 4am most nights/mornings. Can’t get my Endo to check my cortisol levels. My six monthly appointment is coming up in a week and I’ll have to have a tantrum to get the necessary bloods. Sooooo fed up with living without my thyroids.😥

[Anthea55]

Thyroid is not the only thing that can cause problems. From my own experience it is really helpful to check vitamins and minerals and not just the usual set mentioned on here.

When I needed help with menopause I tried HRT but it was the earliest version and it didn't work for me. No google etc, but I ploughed through the medical section of our local library; I saw several references to WNAS (Women's Nutritional Advisory Service - doesn't exist any more). I saw their nutritional doctor who revised my diet and suggested various supplements. This made a tremendous difference to me and we refined it over time. (My sceptical husband sent a thank you to him!)

One thing I remember him saying is that if you get your nutrition right, then any medical problem will present more clearly. I wasn't diagnosed with thyroid problems for many years after that.

What I'm trying to suggest to you is that you may find it worth finding a nutritionist to help you. The BANT website ( bant.org.uk ) helps you to find nutritionists.

BANT is the British Association for Nutrition and Lifestyle Medicine. Find a Practitioner is at practitioner-search.bant.or...

There you can find someone to help you. If you can't get out I'm sure you can find someone to help online.

Sort out your nutrition and then review your thyroid.

I hope this helps.

[Jefner in reply to Anthea55]

I have already been down that road but can't afford one now, they are too expensive and I am on benefits

[Summerlove]

Hi Jefner

I hope you are feeling a little better today. I can totally relate to your symptoms of over medication. Had same several years ago shortly after diagnosis. My Levo was increased to 50/75 I began to feel so unwell, gastritis, nausea, agitated my blood results similar to yours. I ended up in A &E one night as my grown up children were so concerned. I lost 2 stone in weight as I couldn’t eat due to the nausea. I remember going to see the private endo and I put 2 chairs together to lie down in the waiting that’s how ill I felt. I’d already reduced myself down to 50mcg of Levo as I knew that was the cause. I’ve been on 50 ever since which I know is not good. But I became terrified of going over again and feeling as I did. As soon as I try to increase even at 12.5 extra I start to feel unwell. I think some people like us are just so sensitive to the smallest of increases.

Sadly my anxiety as never gone away. Which I never had before becoming hypothyroid. Every day is a struggle. Like you I also live alone so it is hard.

Reduce down as others have suggested, and eat small regular meals to keep blood sugars stable. Also drink plenty of fluids. It will resolve but may be a slow process.

Hope you get better soon

[Jefner in reply to Summerlove]

not feeling any better, my waking anxiety is always bad anyway but obviously even worse since going hyper. My anxiety hasn't gone away since 2016 and every day is also a struggle for me to get through. Sorry you are dealing with this alone too, it's far from funny and people don't understand just how hard it is being alone

[Hectorsmum2]

When I have taken too much T3 it has happened twice and had lots of hyper symptoms i found it helpful to do some exercise. It slowed my pulse right down. You might benefit from a gentle walk in the park or a swim if you are able.

[Jefner in reply to Hectorsmum2]

i am agorabobic so don't get out much except for a nightly walk if I feel able

[JumpJiving in reply to Jefner]

Would you find it helpful if somebody walked with you? Depending on where you are in the country, there are likely voluntary groups nearby who could help. Some of the villages near me have their own volunteer groups, but there are national ones as well such as RVS (think it was previously WRVS) at royalvoluntaryservice.org.uk/ , or depending on age (sorry, I have no idea your age bracket), Age UK at ageuk.org.uk/ . For any men reading this, there is Men in Sheds at menssheds.org.uk/ . It's worth a Google to see what is in your area if having somebody with you would help. Your GP practice might be able to signpost you to local groups too. There are also anxietyuk.org.uk and mind.org.uk/ - they might also be able to direct you to local groups or volunteers if you think it might help

[Jefner in reply to JumpJiving]

I have tried and approached everyone I can assure you. When my anxiety is as bad as this I can barely walk in a straight line. It usually wears off later in the day and I try for a walk late night but haven't felt able the last two nights so suffering the consequences of no exercise, I am just too fatigued at the moment

[Firtyqwerty]

It’s awful when you start getting severe symptoms of panic / anxiety / feel like you’re dying and the GP dismisses you and puts you on propranolol without doing further investigations ! Thank you for your reply