As per my previous posts, I have started T4 50mg 23rd Feb, my next apt is 8th May. I have noticed some positive changes, feet little warmer, reg bowel movements and little less hyper feelings. However I still sweat awfully every morning, a daily headache still, odd bouts of inner shakiness/weakness though not everyday.
Since all this kicked off 3 years ago iv had crashes pretty severe & last one lasted 2 months, symptoms were chronic fatigue, very weak limbs, dizziness standing up, anxiety, depression etc -then I would get better and able to lead a life again whilst not overdoing things.
Someone mentioned Addisons to me and I’m now worrying about that!
Could low thyroid hormones also cause these crashes?’ Has anyone here been through similar with Thyroid?
many thanks
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FoxyTed
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I'm still learning but I get flare ups from certain triggers and some unknown reasons. Mine do not last as long as you described. Mine are from 2 days to 2 weeks. My known triggers are stress, physical activity, strong emotions, hormone shifts, insomnia.
I am only on 50 levothyroxine and not yet feeling well. About to do private tests to check t4 to see if I need more levothyroxine. GP can only look at tsh.
I like listening to a youtube channel by Dr Brad Bodle, that's helped me make some changes that have made some things easier... But won't fix it until the t4 is figured out.
FT4 and FT3 should be tested together, that way you can evaluate T4 to T3 conversion which, if impaired, results in low FT3
FT4 alone will show how much T4 is sloshing around in the serum....not entirely useful....we don't know what will happen to that T4
It doesn't tell you how much of that serum T4 will be converted to T3
And FT3 is key to good health...if there is insufficient T3 then symptoms will result
For good health every cell in he body must be flooded with T3 by way of an adequate and constant supply....it's a long, and often complicated story, but that's the basic fact.
Testing both will reveal where the problem lies.
To complicate matters that serum T3 has to reach the nuclei of the cells in order to become active....most of the time this occurs with no problems
But for people like me with a form of thyroid hormone resistance a further problem arises
NHS hyroid testing is abysmally poor....verified by the number of people who arrive here...as is many medic's ability to analyse the labs
I think we are ultimately saying the same thing. I don't think I am there yet with proper t4.
My private thyroid panel is tsh, t4 & t3 anyway. Looking like I will have to keep paying for my myself. Monday is my first time paying. Nit had t4 done since diagnosis and t3 never.
I paid to see a professor Endo he was a disgrace! Only tested T4 and TSH he did not test T3! My T4 at that stage was 16 and prior to his tests it was 11. He dismissed me completely! Then in jan my T4 below range again, I’m completely beyond disgusted with Thyroid treatment - a hormone so vital for our good health.
T4 is only effective if we convert it well to T3, I just hope we do. It’s a journey
My GP is understanding but from what I am getting her hands are tied due to only being able to look at tsh.
She is currently testing me for chronic fatigue but I am increasingly feeling that direction will just distract from proper thyroid treatment.
My GP surgery has told me even if they request t4 tests the labs are the ones not running it when tsh is normal. T3 they don't even mention.
My GP has saud she can use private tests and I confirmed this with the surgery as well.
So... It ends up up to me to get the other tests in hopes it shows the right things to cause my meds to change.
Part of me is afraid I'll find out t4 & t3 are in range and then nothing will change.
I read that hypothyroidism and hashimoto's both have symptoms and you can treat hypothyroidism and still have autoimmune symptoms. So, a bit worried about that.
Thanks a lot Dippy, that helps! I was worried incase I had something more serious re the adrenals. Does low thyroid affect the adrenals then? Am I right think I read somewhere that if thyroid hormones are low, the adrenals have to work more and can become fatigued amongst other horrid symptoms?
My private Doc has me on Seriphos before bed and Ashwagandha morning due to readings below
My 4 point cortisol saliva testing showed it rising a lot from morn to lunchtime and a little high evening.
I’m all new to this and sometimes anx that it’s something else so bear with me. Tk you!
Just a word of reassurance that you don't need to worry about all that (yet)! You are early days on your 50 Levo!
Before I was diagnosed and all through my 50 Levo days, I used to fall asleep involuntarily all the time. I called them involuntary naps, but I've read someone on this forum calls them coma naps. No one can understand - it's not just a nap. It's like someone flips a switch and turned me off. Completely depleted. Totally out of gas. My family could have the TV blaring and high activity all around, and I'd be totally out and snoring in the middle of it all.
So crashes take many forms, but just as DD says - there is no quick fix, but you are going in the right direction, and just need to be patient.
One of the biggest misperceptions of starting treatment is that you start to feel better right away, and in a couple of months, you should be back to normal. NOPE! Reset your expectations for 6-12 months, and it will all make more sense.
We say it all the time on this board - how many places our body needs thyroid hormones from head to toe.
When so many of us finally learn we are hypo, we may originally think about the standard list of symptoms - cold all the time, joint pain, fatigue, etc.
But at the end of the initial journey (ie, once you've taken 3-12 months to go from the 50 mcg starter dose to somewhere closer to 1.6 mcg per kg body weight), we do indeed see the basics resolving mostly (ie, I am no longer freezing all the time, my joints don't hurt anymore, etc etc) But also surprising things also happen - for me it was my rosacea cleared up.
So it took 9 months on 50 mcg Levo and another 9 months since I found this board and moved towards my optimal dose of thyroid hormone replacement.
But over that time my fatigue has improved so that I only infrequently pass out in a coma nap right now : ) It used to be almost every day.
Sadly thyroid treatment is in a mess and most medics seem incapable of understanding how thyroid hormones work. As a result patients who don't readily respond to levo treatment struggle to feel well.
It took me decades to find out why my health slowly declined until I could barely function....I eventually told a GP if they couldn't find the answer I would do it myself. I even surprised myself!! Her reply...oh don't upset yourself just do as we ( including the endo) tell you. Well that literally nearly killed me. All in my bio.
I'm afraid my faith in medic's ability to treat thyroid disease is rock bottom....sorry that doesn't instil faith in medics but it helps explain why patients are left struggling and pushed to study.
It all starts with the NHS protocol and medics determination to adhere to established beliefs instead of following what are verifiable scientific facts.
I now believe that T3 rules supreme!
For good health every cell in he body must be flooded with T3 by way of an adequate and constant supply....it's a long, and often complicated story, but that's the basic fact.
So....I've looked back at these labs that you posted a few months ago and what immediately red flags from the list is your abysmally low FT3. Your FT4 is little better
FT3 is the most important number followed by FT4
FT3 = 3.9. ( range 3.1 - 6.8) = 21.62% through the reference range
FT4 = 15.7 (range 12 -22) is 37% though the r.r.
You must be really struggling with those levels, your medics should hang their heads in shame!
We aim to have both Frees roughly approaching 75% through their respective reference ranges....your results don't come close!
You are woefully undermedicated and as I mentioned above you need a dose increase
TSH is not a reliable marker, it fluctuates throughout the day for one thing, and reliance on it is a monumental disgrace. However when correctly medicated TSH should be 1 or under so 2.34 is too high
My opinion is that you need to optimise FT3, FT4 and co-factors and forget about other medication until that is achieved.
Correct medication should hopefully sort out your problems
The only serious thing I can see is your medic's ability to understand your problem over recent years...and that is why so many patients arrive here desperate for help.
They must join up the dots!
Hopefully your test in May results in an increase to 75mcg....if not you may need to complain to your Practice Manager
Meantime don't worry...be kind to yourself and be strong
Thank you DJ for taking time n energy to reply. I will post my last results again after dinner which showed T4 below range - that was before I started the T4 ❤️
I totally know what you mean. I've been having these Crashes for about 3 years. Finally diagnosed last year and working my way up the Levo. They have steadily got worse and the one I'm in now has been pretty awful. I think triggered by catching pneumonia and then being VERY stressed. I feel like I completely burned through any energy reserves I had until my body said no.
Just been upped to 100 levo and hopefully ot will help me to come out the otherside but I'm taking it very slowly. I'm sure my adrenals have something to do with it but I have read on here that fixing the thyroid and vitamin levels first, might sort cortisol levels without any other supplements (so that's my plan!)
Very sorry to hear that Dahlia, it’s truly awful. Did you find any improvement when you began T4 initially? What dose were you last on before the 100mg?
Yes I did, I was doing much better over last summer on 25, then 50. Started 75 in October, caught covid then Pneumonia and it all unravelled!! I think it was probably my stress reaction to being so poorly that triggered such a big relapse. Having to fight with Dr's and go to hospital I find really triggering and stressful. I suppose if something good has come out of it, I have learnt what happens if I don't keep my stress and anxiety under control. I've been doing lots of things to try to help build my resilience to stress (acupuncture, meditation, vagus nerve stimulation etc)
I became really affected after covid, I had no other stresses but the effects of a virus can even trigger hypo from what iv read. Dont underestimate what you have been through re all that. Yes we certainly learn from this! Sounds like the T4 was working which is a good thing.
Those symptoms, dizziness/weakness, morning sweats, headache etc are likely due to very low t3 and low blood sugar levels (hypothyroidism causes less sugar to be stored, so low levels in blood after fasting overnight). When blood sugar is low and t3 is low, the body then increases cortisol and adrenaline as the next attempt to raise blood sugar. And increased adrenaline leads to the usual fight or flight responses.
That really does make sense Forestgarden, thank you for that reassurance, I am having a bad few days symptom ways and it raises the anxiety also so it’s more difficult to not worry! This is one big rollercoaster🙃
I'm not sure I explained it very well, but thats the gist. If you want to read the scientific paper, its here: ncbi.nlm.nih.gov/pmc/articl... . I'm still adjusting t4 and t3 doses and still wake up, heart pounding some mornings, especially after a relatively busy day the day before. I also find, if I can't sleep I'll get up and eat an oatcake, and those slow release carbs are enough to raise my blood sugar, get me to sleep, and through til morning. Knowledge is power!
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