I ordered a saliva cortisol test and should get the results the end of this week due to my ongoing symptoms and difficulty raising T3 above 10mcg despite being very hypo in both symptoms and lab ranges and raising T4 not doing anything except making me feel worse. I am currently on 75mcg t4 and 10mcg a dose I have been on since Janurary and one that I have always been comfortable on however now I have become increasingly hypo again and now I seem to be becoming unable to tolerate the T3.
I have NEVER had a problem with my 5mcg twice a day - even back when I had poor nutrient levels - but I am becoming anxious, shaky, waking in night, palpitations (these are usually an undermedicated symptom for me) and the most pressing thing - I am having frightening periods (4/5 times its happened the same time - after breakfast and 1 hour 45 after morning tabs) where I become very anxious my pulse shoots up to 92 then gradually increases up to 100s over a period of half an hour at which point for a short time it pounds, I feel anxious and panicky, dizzy, my arms become weak, warm and shaky, I get an adrenaliney feeling in tummy and my bowels feel more active and I feel like I am falling out of my body. It is horrible and it takes hours after the event for pulse to come down to my usual 68-72 and after it I get cold waves/shivers. It is making me very scared - I am scared to take my T3 and I always miss my afternoon dose after the event because I am so scared of it happening again but similarly if I don't take it I am terrified of becoming more hypo. I am already uncomfortable - very constipated, acid reflux, very cold, tired, palpitations, and though my pulse is usually 64-72 in the day it reaches 52 at night. I am also very concerned as gastroparesis is a hypo symptom for me and if I can't eat properly I know that won't help.
I don't know what to do as I don't want to not take the T3 but I am scared of doing so. I do have vitamin c - is it worth taking that to see of it helps me tolerate it while I wait for the cortisol result or should I reduce it for the time being? The periods above are so frightening. Thank you.
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liaratsoni
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I initially did try the 3rd 5mcg when endo said to increase to 15mcg but experienced some anxiety and insomnia and midly raised heart rate at bedtime - I never usually have trouble getting to sleep but my usual 52-60 pulse went to 72 - and sort of milder forms of the almost adrenaline surges I seem to be having now.
I have had both antibodies done back in my first ever thyroid check by medichecks both were listed as <10. I haven't had an ultrasound and wonder if I should ask doctors about it as I recently found out every single female member on my dad's side has/had thyroid disease - cousin, grandma and grandmas sister bar my aunt who was told she has an 'irregular shaped thyroid' and I have just got my younger sister a thyroid check test as she is now exhibiting the same symptoms as I started to get a few years ago.
I have also had a coeliac test done in the past and it was negative however I haven't eaten gluten for 3 years (after the test) anyway.
I am not currently taking as I stopped for a week while doing my cortisol test. Previously I was taking vitamin c and sublignual b12. Last results were:
vit d was 91 (75-200)
b12 was 1086 (200-900)
ferritin was 89! (15-250)
Folate was 8.8 (2-17)
however this was a while ago now as I was planning on asking them to be retested at my next thyroid blood test.
This sounds very like hypoglycemia to me. I have two forms (long and short reactive). The one that's short reactive comes on not long after eating. The more sensitive a state one is in, the sooner the reaction. As the body struggles to deal with an insulin spike in the normal way, it dumps adrenaline into the system to stop blood sugar going too low. This corrects the drop very quickly (which is why one can't do an accurate blood-sugar test), but results in this racing pulse and feelings of anxiety. The process usually goes through cycles of overproduction of adrenaline and insulin (leading one to feel drowsy or even kind of 'pass out' in slow motion), until the effect dies off or one eats something again and sets if off on a new cycle.
In my case, the long reactive type is down to Fibromyalgia and is controlled with a low-carb diet (I am recovered enough that this is now not usually a problem); the short reactive is related to long-term endocrine problems, specifically the adrenal gland. Essentially, and to cut a very long story short, I have managed to minimise this effect by working up to an effective dose of adrenal support. I started with adrenal glandulars, which helped, but had side effects, and now take the hormone precursors pregnenolone (50mg per day) and a small amount of DHEA (c.12.5mg).
Interestingly, I've recently changed my thyroid regime from exclusively glandular (Metavive IV ) to a mixture of T3 and porcine glandular. This seems to have surprised my adrenals (im increasing my effective dose, as it's been too low for a long time) and I've had more incidence of this hypoglycemia (though it appears to be settling as the weeks go by). I'm guessing that my adrenals are catching up a bit, though I think that I have some way to go to settle my thyroid combination.
I'm not medically qualified, but I've done web support for fibromyalgics for the best part of twenty years and hypoglycemia (we refer to it as 'HG')is very common. When I first started on thyroid replacement therapy (under Dr Skinner) I didn't have adrenal support and no combination of T4, T3 and NDT would work consistently. Unfortunately, he passed away before we could try this. Without adrenal support I get lots of this short reactive HG; with it I don't, though it took a couple of years of trial and error to sort it out.
It will be interesting to see what your cortisol tests are. My NHS ones were normal yet, when I tried Dr Rind's temperature graph, my temp was all over the place, indicating adrenal insufficiency. A private saliva profile test showed good levels once I was on support.
If you have adrenal insufficiency, this may be why you can't raise your thyroid replacement to a therapeutic level: there simply may not be the support from the adrenals to allow it to function. HG then depletes the adrenals more in a vicious circle...
Apologies for the long reply. If this is hypoglycemia, you may benefit in the short term by reducing or eliminating sugars and simple starches from your diet, though it can make one feel rather rough for a couple of weeks, and a couple of months to really settle down if one is being strict.
Thank you this is very interesting and very helpful. I have suspected blood sugar issues in the past - a couple years before diagnosis I had symptoms like shaking, lightheadness on standing, constantly hungry and episodes where I would be conscious but would lose my vision to black collapse and be very hot. I had to be laid down and fanned until my vision came back! I eventually had a diabetes test but it was ok but blood pressure was a tad low but the doctor did say to eat anything sugary if it happened again. Then a couple of months ago I started getting palpitations headaches etc that only lasted when eating.
I currently eat a moderate/lowish carb diet - I was on low carb for a year before diagnosis and then on a liquid meal replacement diet due to gastroparesis but seem to need carbs and particularly at the moment - I am very underweight and without carbs I can't maintain. I do eat only complex carbs though with the only sugary food being a quarter banana in the morning and quarter in the afternoon. I do seem to get some worse symptoms with eating sometimes and I also have been feeling very hungry the last few days. I was also fine if a little anxious this morning until I ate then the issues started.
I am waiting impatiently for the cortisol results! Are you able to eat more carbs now you have sorted your adrenals out? Do you support them with things like Vit C too? I really do think my issues are adrenal and I wonder if they are impacting on blood sugar too.
Yes, I would suggest orthostatic hypotension. As insulin impacts upon blood sugar, blood pressure drops and this is where the dizziness comes in. Sitting is okay, but as soon as one stands up there is insufficient blood pressure to operate the brain properly and one can faint (has happened to me on a few occasions). Generally, I sit down and stay down when a severe attack is coming on (I estimate that I have had 15 000 attacks over the 45 years or so this has been happening). This is highly indicative of hypoglycemia (am using US spelling here).
Unfortunately, it tends to have to be diagnosed by symptoms such as these. In the Fibromyalgia world, extensive tests were carried out to test for blood sugar drop-off years ago, but the adrenal system corrects it so quickly (under thirty seconds) that it's impossible to draw blood quickly enough. Most endocrinologists won't recognise this metabolic effect, thinking of HG in terms of diabetes, though as far back as 1994, a study by Genter and Ipp showed this happening to even healthy young individuals, and at different thresholds of blood sugar from provocation. If you are interested in the symptoms of the long-reactive type of HG (which are the same, but delayed by a number of hours), then a web search for the Guaifenesin Protocol will bring up a hypoglycemia symptom checklist somewhere.
One of the reasons that I pursued hypothyroidism as a possibility (mine seems to result from chronic system toxicity , inflammation and a possible brain injury), is that I was sometimes getting this short-reactive HG even when my long-reactive was under control. As such, it couldn't be a component of the fibromyalgia. The effect got worse over the course of the new millennium and I got to the point where I would get it even from zero-carb meals. Because my endocrine system seems to be all over the place, sometimes it would go away for a time. It's worse if I drink too much alcohol and if I eat wheat in any quantity (though I have leaky gut and dysbiosis)...
What I found really telling was, after a disastrous round with a series of NHS endocrinologists, I was briefly put onto T4 only. The next day, my HG went away completely, I'm guessing because the adrenal demand had been reduced by the sudden lack of 'active' T3 (I do very badly on T4 only). The HG gradually returned over a few days as my system adapted to the T4. This was before I was on adrenal support.
To answer your question: yes, I can tolerate more carbs now, when things are settled down. Hopefully I will resolve this once my thyroid dose is finalised and I've had time to adapt to it (may take some time). As you suggest, vitamin C is helpful. I take about 1000mg per day, in liposomal form if funds allow. Oddly enough, if I take a B complex, I get more HG. I have no idea why this is. At the moment I'm taking a liposomal B12 to help with my new regime.
I can recommend Dr Rind's temperature graph as a diagnostic tool, though it takes a while to accomplish. There seem to be lots of people undertaking adrenal support in different ways, so I can only really relate my experience. It would have been interesting to have tried prednisolone, but this is prescription only. Pregnenolone is quite cheap and easy to get (DHEA less so, but this may be optional).
Thank you for all the help! Interestingly I don't have the lightheadedness on standing anymore! Right now my body feels anxious drained, I still feel warm with flushed cheeks, eyes bit dazzled and I don't have much appetite. I took 500mcg vit c a few hours ago and I'm going to take 500mcg more with dinner.
I had to order the saliva test myself - I told my endo about all my issues and asked if I could have a cortisol saliva test/further investigation weeks ago he said no because cortisol blood test was fine - this was back in october before even starting thyroid hormone and wasn't even early morning!
That's good to know that your tolerance has improved! Back in March I had good levels both t4 and t3 were 70% through range and I had none of these issues and ate carbs with no issues. They came on as thyroid levels fell - unbeknownst to me - and now my t3 is only 43% through on the same dose but I can't raise! I have now seen on here that its at a similar dose that people tend to have adrenal issues uncovered which seems to make sense to me. I don't have enough T3 to help adrenals recover but have just enough to put further strain on them! Absolutely maddening as I went to doctors for years saying I was unwell and they became increasingly dismissive. Now I am here with what I think are shot adrenals after years of strain - it's so frustrating.
I know what you mean about it all being frustrating. I had a short synacthen test and others on the NHS and they thought that was alright. The 'mixed meal test' had mixed results, but I had a hypoglycaemic attack in the hospital while they were watching me and taking the samples. My pulse went up to 140 BPM and they wouldn't let me leave until I'd had an ECG to see if I had terminal heart problems. Even then, I was eventually discharged some months down the line with a diagnosis of somatisation (!!!). This was five years ago and has put me off going back to the NHS to try and sort it out officially (sure I'm not alone in this),
Interesting that you say that people seem to find out about adrenal insufficiency just as they're on the cusp of finding a therapeutic dose of thyroid support. I guess the plus side is that it is within our power to resolve these things with a variety of supplements, even if it takes a bit of (careful) experimentation. Hopefully it won't take you much to get back on track.
I am told that the morning is much lower than it should be, noon a little low, 4pm a little high and that the bed one is unfortunately not helpful due to the range.
I was actually advised by a member with previously very similar results to try the circadian t3 method as it sorted theirs out and I am willing to try something safe and easy like that before I look into glandulars etc! If I give it a try I can report back to you with update via pm if you like?
Yes, I'd be interested on both counts, especially as I'm testing out various timings with my T3 at the minute (split into three doses at 5 hour intervals, with half a grain of NDT with the middle one). Have looked into the circadian method briefly, but seeing if I can get away with a simple regime first.
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I hope so too and the same for you! 
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