Hi, This won't be the full story as I don't want to to make the post too long and hard/annoying to read. It's already going to be too long.
RAI for Graves around 11 years ago. Never felt good on T4 since. Normal dose around 100 micrograms plus around 12.5 micrograms a couple of times a week. Mostly stopped the 12.5 micrograms as I felt like there was just a placebo affect doing on there. Had kind of given up on thyroid stuff - just felt like this was as good as it gets. Lots of anxiety, fatigue, brain fog, pain, mix of overactive and under active symptoms etc. Not functional enough to work or even manage chores, cooking etc. Also have N24, a circadian rhythm disorder which has been resistant to treatment, so have been blaming that.
Ran out of 100 microgram tablets while looking after my mum in December. Still don't have a diagnosis for her. Decided to ration the 50s I had for a few days, but lost track of time. Probably ended up doing it for at least a couple of weeks. Felt a million dollars for a while, brain working, allergy symptoms basically gone, no pain, loads more energy, but then I clearly became hypo and absolutely cracked up. Actual psychosis I think. Decided that my thyroid was working again and had a crazy theory that I'd figured out the root cause of most diseases including thyroid (thoracic outlet syndrome in case anyone's interested). Decided that most of the population are suffering from it and that I'd made an amazing breakthrough. Stopped taking my thyroxine entirely for at least another week or two. Became incredibly weak - was finding it difficult to breathe at times, so started taking it again. Became horrendously anxious when restarting it so ended up trying to start at 50 micrograms and work up. Felt like my body was giving up on me so started the 100 again. That was around a month ago and I'm living with constant anxiety, palpitations, cold adrenaline rush feelings and can barely eat food because I've convinced myself I have MCAS or histamine intolerance (I do have allergies and keep acquiring new ones as an adult, but have no idea if this is true or a delusion), wake up in a panic between 3 and 6am every morning, can't get back to sleep, panic most of the day. I can't carry on like this - I'm a danger to myself because things feel so futile and the constant panic is exhausting. Losing weight and can't find foods to eat that don't make me feel worse. I feel like I can't trust my own perception of things because of how crazy I went.
Decided to get some bloods in case they shone any light on things. Was going to wait the 6 weeks after restarting the 100 micrograms, but was feeling so bad I had some done at around 3 and a half weeks. I'm a bit worried about whether or not I can rely on them. I was probably quite dehydrated on the day and the nurse who took the bloods gave the container a shake instead of inverting gently. I felt too ill to challenge her.
Results are attached. What should I do short term with my dose? The TSH, which is normally under 1, obviously hasn't had time to recover, but the fact that the free T4 is already so high after 3 and a half weeks makes me concerned that its going to be super high by week 6. The T3 obviously isn't optimal, but my sleep, food intake and stress and awful just now, so that may be contributing.
Can I rely on the results given the shaking of the sample and dehydration?
Long term I want to look at getting T3 to take as well, and sort out my nutrition, vitamin D (might be tricky as I have bad reactions to yeasts and lots of B vitamins are yeast derived and have reactions to other things in supplements) but currently I just need to not feel the way I do just now. I thought this would pass in a couple of weeks and I could withstand it short term, but there's no end in sight now and I genuinely don't think I can survive much longer feeling like this.
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Cat4444
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Welcome to the group. If you could complete your profile it helps members understand your thyroid journey so far and be able to advise you better. Click on your image icon to start. Fill out the free text box at the top.
After only 3.5 weeks at the same dose these tests won't be reliable.
How did you feel before you stopped taking the 100mcgs Levo?
When did you take your last Levo before this test? Recommended to leave 24 hours to show stable blood levels as opposed to what you have just taken.
levo only works well when we have all vitamin levels at OPTIMAL.
Your active B12 is on the low side. The range for B12 is too wide and cut off point too low.
What types of B12 have you tried?
Are you vegan or vegetarian?
B12 - do you have symptoms of B12 deficiency? The reference range for B12 is very wide and cut off point too low. theb12society.com/signs-and...
If you do then you should discuss this with your doctor for further tests for Pernicious Anaemia.
If not, then start with a methyl B12 sublingual spray or lozenge for a week, then add a good B complex. Once you run out of the separate B12 just continue with the B complex.
Vitamin D should be around 100 - 150. Buy one that includes vit K2 to help it go to your bones. Some are available in oil or you can take it with an oily meal for better absorption. Many members like the ‘Better You’ range of mouth sprays that contain both bit D & K2. Use this calculator to work out how much to take to get your level to 100-150.grassrootshealth.net/projec...
Omega 3 is good for inflammation/allergy type symptoms.
Will try to fill out my profile. Feel so muddled and anxious just now that it's difficult to get anything done. I felt pretty awful on the 100 micrograms, lots of intrusive anxiety, but not as bad as I do at the minute. I genuinely don't know how I can continue on this dose. I can't function at all at the minute. Am near the point of needing psychiatric care but terrified to get mental health services involved in case they make me worse. Don't know if that's just paranoia.
Had my levothyroxine 24.5 hours before the bloods. Have recently stopped vitamin D as it seemed to be making me more anxious. At the minute, can't think well enough to work out what to do supplement wise. Still eating meat, although lately don't seem to tolerate much other than chicken.
Really hoping someone can make a suggestion on lowering the dose short term as I just really need a break from feeling like this.
You may have dived in at too higher dose and need to back peddle a bit to let your body catch up. Even then it will take a while for symptoms to settle.
With serum B12 result below 500, (Or active B12 below 70) recommended to be taking a separate B12 supplement
A week later add a separate vitamin B Complex
Then once your serum B12 is over 500 (or Active B12 level has reached 70), you may be able to reduce then stop the B12 and just carry on with the B Complex.
If Vegetarian or vegan likely to need ongoing separate B12 few times a week
IMPORTANT......If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 7 days before ALL BLOOD TESTS , as biotin can falsely affect test results
In week before blood test, when you stop vitamin B complex, you might want to consider taking a separate folate supplement (eg Jarrow methyl folate 400mcg) and continue separate B12
Post discussing how biotin can affect test results
Always get almus. Is the best of a bad bunch, even though I don't tolerate dairy any longer and wonder if that's doing me any damage Any advice on how to cope in the meantime? Within 3-4 hours of my dose I feel horrendous. If I didn't have my boyfriend and mum looking after me I don't think I'd be around any more and it gets worse every day. Keep linking it with food, and thinking that I'm not tolerating my levothyroxine because I have MCAS and that that's why all my allergy related symptoms and asthma stopped when I stopped the drugs. But it's so hard to tell if that's my stressed out brain jumping to conclusions. Only have a handful of foods that I can tolerate at the minute and I don't know if that's psychosomatic. Can't calm down at all. Can't seem to tolerate the supplements I've tried. Think I might have Candida overgrowth back. Had horrible die off symptoms when I treated it in the past.Is Jaydee1507's suggestion about backpedaling worth a try? The free T4 seems so high for such a short time taking the 100 again.
I'd been avoiding that as the evenings are the more bearable part of the day and I was worried about making the entire day equally bad and getting absolutely no sleep, but if you think it will help I'll give it a shot.
Unfortunately, the vitamin D spray contains xylitol, acacia and citric acid, all of which I've reacted to in the past. Hence my MCAS paranoia/delusion (or maybe I do actually have MCAS, but delusion/paranoia would probably be preferable). Have been dairy free for a couple of years, really struggle to get calcium in my diet. Been mostly gluten free for around a month, but not sure if it's doing anything or not. The antibody levels don't seem very high, so not sure if that's doing anything or not as I wouldn't have expected them to drop that quickly.
I think the period when I was off the drugs and really hypothyroid has really messed with my guy function - my stools are always yellow at the minute and I'm too worried about histamine producing bacteria to take probiotics! I've really tied myself up in knots I'm afraid.
I must confess that I read through your profile a few weeks ago and was terrified at the idea of trying to navigate all that you have managed to. I genuinely don't know how I would do it. Even B vitamins terrifying me at the moment - because of the fact I don't seem to tolerate even magnesium supplements at the minute and because one of the differentials for my mother's current illness is B6 toxicity.
It will pass once you are correctly medicated on a steady therapeutic dose.
Your labs show you are wrongly medicated....despite the poor timing!!
It seems pretty clear that you are not converting T4 to T3 at all well and that low T3 has a lot to do with how you feel.
You piled 100mcg T4 in and your body is struggling to cope with that.
For good health almost every cell in the body must be flooded with T3 by way of an adequate and constant supply....although the labs above are not reliable they nevertheless suggest low (cellular) T3 is your problem.
You can't expect levo to work by taking it in stops and starts...it's not like grabbing a paracetamol for a headache
If your body needs replacement thyroid hormone, it needs it for life....it doesn't recover.
Your low T3 may be responsible for the raised cortisol level.....as might stress.
I understand how you feel and many here will have had a similar experience. At it's worst thyroid disease can drive us to do desperate things
BUT...hold onto the fact that you are not suffering from strange illnesses or are losing your mind. Yes, you are unwell but you can be treated....you just haven't been treated by medics who know what they are doing
You need to request an appointment with an endo ( or visit one privately) explain what has been happening and how desperate you feel.
Don't let them suggest you need antidepressants the anxiety etc is a symptom of what is wrong....not the cause
Of course you can survive this, at my very worst I used to remember Bob Marley's words...You never know how strong you are until being strong is your only choice.”
Thank you to you and everyone else for the replies.
Yeah, would never have considered deliberately stopping my levothyroxine, but I do think I genuinely lost my mind. I think I was definitely in hypothyroid psychosis - I was convinced of a lot of crazy things, but one of them was that all T4 and T3 do is lower blood pressure (there was more intricacy to it, but that's the gist) and that hypothyroidism occurs because the blood supply to the head has become compromised, so the body stops producing T3 and T4 to maintain cerebral perfusion. Another was that I had to balance what foods I ate together because some raised blood pressure and some lowered it. There is a tiny bit of logic involved - T4 and T3 do seem to cause vasodilation in the body and different foods do cause vasodilation and vasoconstriction, but my brain took this and ran with it.Because of this, I'm having difficulty trusting myself just now - I don't know what I can believe. Especially because my T3 is still low in range, and was low in range previously, so my current and past thoughts could be crazy too.
It doesn't help of course that I could genuinely have MCAS and that it can cause anxiety and other mental disorders. And that I have been acquiring new allergies/intolerances in adulthood and have plenty of MCAS signs and symptoms. And that levothyroxine treatment messes with histamine in the human body and that autoimmune thyroid disease is a risk factor for MCAS... As I said, have absolutely tied myself into knots.
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