I am feeling very dejected tonight because I am finding it impossible to get well and seem to reach roadblock after roadblock. I was diagnosed October 2019 when I was very unwell and I am still unwell now. I’m constipated, have bad acid reflux that limits my eating, exhaustion, constant uncomfortable thrumming/vibrating body, lightheadedness (can’t climb stairs on my own) and constant iron deficiency.
I take Levo and t3 and struggle to raise them because of adrenaline symptoms. I’ve managed to extremely slowly build A bit back up to 84t4 and 7t3 but still feel awful and my last blood test in dec at 75 and 6 showed ft4: 16.1 (10-20) and ft3 5.1 (3.5-6.5) but my levels seem to fluctuate all over the place with only minor or no changes in dose.
Recently I have constant internal thrumming, some adrenaline symptoms and exhaustion. I started eating liver again to try and raise my ferritin and now I’m having terrible adrenaline symptoms with worse thrumming, feeling wired and palpitations and this evening had a massive I’m guessing adrenaline attack with fast heart, terrible shaking and feeling incredibly anxious and like I can’t breathe.
I’m at a loss of what to do because it could be a coincidence but this is the second time I’ve had worse adrenaline symptoms when tying to raise ferritin but mine is much too low with blood test last week showing 11(15-250). I find no help from my doctor who’s content to leave me at that level (shocking) and I feel like I’m losing my life as I’ve been ill since 16 and I’m only 24 so feel like I lost the entirety of my late teens and early twenties and haven’t even been able to start a career etc. I don’t know how to best approach this anymore because everything I try seems to make me feel worse. Any help would be hugely appreciated.
Thank you
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liaratsoni
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I’m constipated, have bad acid reflux that limits my eating,
There's a common denominator, here - well, two in fact, because both are hypo symptoms. The other one is: low stomach acid. Which is also a hypo symptom.
The symptoms of high stomach acid and low stomach acid are the the same: acid reflux. But, hypos usually have low stomach acid. The low stomach acid inhibits the absorption of nutrients, including B12, and low B12 keeps the stomach acid low. So, bit of a vicious circle, here. Have you had your b12 tested?
You won't be able to fix all of your problems in one go, that's for sure. And, it's a mistake to try too many different things at the same time. So, for now, because they're connected, let's concentrate on those two symptoms, shall we?
First of all, the stomach acid. To know if you have low stomach acid, have a read of this article and try the home test at the end:
Now, constipation is something a lot of us get. The best things to help are magnesium citrate and large doses of vit C.
Four things to think about with constipation:
1. Are you getting enough fibre? You need fibre for your transit, BUT you don't want too much fibre because it could affect the absorption of your levo, making you more hypo, and therefore possibly more constipated. It's a matter of finding the right balance.
2. Are you drinking enough water? Your body needs a constant supply of water, and if it's not getting enough, it will suck your poo dry (sorry for that image!) to get the water, leaving you more constipated and unable to 'go'.
3. Do you, by any chance, have high levels of calcium? Because that, too, can cause constipation. So, that’s another thing that wants testing.
I would add that getting your nutrients tested: vit D, vit B12, folate, ferritin - will give you a clue as to your stomach acid level. If they are low, then your stomach acid will also be low.
You know you have low ferritin, how about the others?
Oh, and low-salt diets can also cause constipation, so make sure you're getting enough salt.
Thank you for your reply greygoose!I have previously had b12 deficiency and was at one point on injections before I knew I was hypo and now I take a sublingual b12.
I am pretty sure I have low acid - I get a lot of the symptoms, my digestion improved when I was taking an acidic supplement last year and I did the bicarb of soda test and never burped. I am not taking vit c or magnesium citrate I will look into that! I think I get a good amount of fibre - I eat high fibre oatmeal with peanut butter and fruit for breakfast an hour after my Levo and t3 but now I’m wondering if that’s too close? I try to drink well and I recently had calcium tested and it was just below middle of the range so I think that’s ok!
I had my vit d tested with my ferritin last week and it’s pretty good - I was deficient but I’ve been supplementing and it’s currently 86 so I’m continuing my supplement! Folate and b12 haven’t been done for a while but last time my b12 was >1000 I think due to the sublingual and my folate was just above reference range. I have salt with my meals too so I think I get a good amount of that
If you take B12, do you also take a B complex? All the Bs work together, so need to be kept balanced. Igennus do a good one, with methylcobalamin (B12) and 400 mcg methylfolate.
If you take vit D, you should also be taking magnesium, because the two work together. And, you should take vit K2-MK7, because taking vit D, increases absorption of calcium from food and the K2 makes sure it goes into the teeth and bones, and doesn't build up in the soft tissues.
How about zinc and copper? Have you ever had those tested? Hypos tend to have high copper and low zinc, and that's not good, it should be the other way around. So, getting them tested and correcting the balance can ease quite a few hypo symptoms, such as muscle pain.
You do need to be careful not to consume too much fibre, as that can affect the absorption of thyroid hormone in the gut. Could well be that that breakfast is a little high on fibre. Once again, it's a question of balance.
my digestion improved when I was taking an acidic supplement last year
Why did you stop? Might be a good idea to go back on it.
I don’t take a bvit one as a whole I will look into that too! Didn’t know that about magnesium and vit d! My vit d supplement does have k2 however! I’ve never had zinc or copper tested would that have to be private?
I will keep that in mind about fibre! I don’t remember exactly but I believe I stopped the acid as I had started feeling slightly worse and thought that could be a factor? It’s difficult because my reflux is the lpr type so it effects my throat the most and anything acidic irritates my burnt throat and causes it to become swollen and uncomfortable but I might have to try and get past that and hope it improves!
I think zinc and copper testing would probably have to be private, yes. It's hard enough to get a doctor to test the basics, like vit D! They'd probably flip out if you asked for anything more exotic.
Calm vitality magnesium powder is cheap and easy to use. Very good for helping with constipation. Magnesium best taken afternoon or evening. Must be four hours away from levothyroxine
Are you on strictly gluten free diet or dairy free diet
Ferritin is clearly terrible
terrible adrenaline symptoms with worse thrumming, feeling wired and palpitations and this evening had a massive I’m guessing adrenaline attack with fast heart, terrible shaking and feeling incredibly anxious and like I can’t breathe.
These are hypothyroid symptoms
Anxiety is common hypothyroid symptom
Anxiety often improves on strictly gluten free diet
Or
You might need to take small doses propranolol (beta blocker) in order to increase dose levothyroxine higher enough. But propranolol can’t be prescribed for anyone with asthma
Roughly where in the U.K. are you
You need adrenal, thyroid specialist endocrinologist
I am on strictly gluten free yes, I have been for years. Another thing I forgot to mention is I wake up with adrenaline feel and faster thumpy heart every morning that initially usually stops as soon as I take my thyroid meds. It was previously not too bad just mild but the last month or so it’s been getting gradually more intense and this morning I woke 45mins earlier than normal feeling awful really adrenaliney and terrible thrumming chest and uneven higher heart. I hadn’t heard about beta blocker! I’m in the south east of the uk. My endocrinologist has been very helpful in many regards - he understands secondary hypo, diagnosed me and prescribed me t3 but has been a little less helpful with the adrenal symptoms. He’s also previously run full bloods including cortisol so maybe I should book an early appointment with him?
High fibre oatmeal may not be gluten free. A gluten free diet is helpful for many of us, but we are not all coeliac. It works for me although I am not coeliac, but I do have food intolerances which include wheat and oats. I avoid oats whether they are gluten free or not. This may be the same for many others.
There are other cereals which are gluten free. I've found a buckwheat muesli which is gluten free. A bit chewy, so best to leave overnight with milk or whatever you like to give it a chance to soften.
I would suggest getting something like Isabella Wentz’s ‘Hashimoto’s Protocol’ which sets out a clear step by step plan, has excellent explanations and her kind and encouraging voice helps you through when you’re feeling lost. It did for me. Also, check out the Autoimmune Wellness website autoimmunewellness.com/and sign up for their regular updates which include Healing Stories .... it’s peoples’s stories of recovering from a wide variety of autoimmune diseases which I always find so inspiring. All the best.
Currently i do take my t3 split in two twice a day. I also always take my thyroid meds 8 hours before my blood tests. My last blood test in December (results in my initial post) I took my t4 8 hours before too as I messed up before the blood test bit previously was always taken 24 hours before though the results weren’t that much different. I take mercury pharma t4 and always get the same brand - others including teva especially upset me.
Yes I always take Mercury Pharma levothyroxine too
Do you take levothyroxine at bedtime or morning
Have you tried splitting Levothyroxine dose and taking morning and evening....can help some people tolerate getting dose levothyroxine increased higher
So you might be able to tolerate 50mcg am and 50mcg pm
Which T3 do you use?
As you find strictly gluten free diet necessary it’s likely you have poor gut function and need regular small doses of T3
I take my Levo all in one go in the morning I’ve never tried at night! I haven’t tried splitting Levo either that’s interesting! I was worried it would keep me up! I usually have a snack 9pm otherwise I get blood sugar issues so would that be ok with day taking some Levo at 12am?
I am not entirely sure but I think the brand of t3 is thybon henning - the pharmacy I order from doesn’t have the brand on the bottle. I know it’s lactose free because my endo writes that on the prescription. I haven’t no. Currently I take 3.5mcg at 9am and 3.5mcg at 5.30pm so I do have quite a gap between that and my next morning dose. I wondered if that might be why I seem to have adrenaline compensating especially waking up with adrenaline symptoms before my tabs.
No other medication or supplements at same as Levothyroxine, leave at least 2 hour gap.
Some like iron, calcium, magnesium, HRT, omeprazole or vitamin D should be four hours away
(Time gap doesn't apply to Vitamin D mouth spray)
If you normally take levothyroxine at bedtime/in night ...adjust timings as follows prior to blood test
If testing Monday morning, delay Saturday evening dose levothyroxine until Sunday morning. Delay Sunday evening dose levothyroxine until after blood test on Monday morning. Take Monday evening dose levothyroxine as per normal
Alternatively if struggling to increase levothyroxine dose, splitting dose morning and evening is another option
Small dose T3 at bedtime often helps improve sleep. But doesn’t suit everyone.
I don’t think I need lactose free my endo just always writes it for some reason. Thank you I will look into that! I am hoping to get a whole set of bloods done with my endo so will go from there! Thank you!
A good probiotic sorted out my constipation and acid reflux. Drinking warm water as well has helped (I boil the kettle and have half boiled, half tap water - helps with constipation). Take the probiotic last thing away from anything hot.
I used probio 7 advanced for a whole month solid. So, it contains soya fibre which made me bloated (I didn’t realize until after, I don’t get on with soya) that said it worked a treat. Vitabiotics do a soy free one which looks good and I plan on taking . I maintain with inessa delayed release probiotic which is gentle. I also use digestive enzymes regularly; especially if I eat lactose (I take one with my meds in the AM). Taking before bed means you don’t deal with the bloat and gas during the day.
Warm/hot water is Chinese medicine. It’s actually nicer than slugging cold water and if you read about it, less stress on your body.
You've had a lot of great advice so far, in addition to other issues, to me your thyroid hormone looks a little low. Your freeT3 is about halfway through the range, most people feel better with it in the top third. This is the blood result that most closely reflects symptoms, so it's not surprising that you still feel rubbish.
I get what you're saying that you've struggled to raise it with adrenal symptoms. I suggest raisng super slow. Get the smallest crumb of tablet you can reliably reproduce at that size and raise by that amount, then after several weeks when you're confident there hasn't been a bad reaction add another small crumb. I think ultimately you need to get those hormones to good levels which will have a big impact on a lot of your symptoms.
I think a larger number of split doses can also help, particularly with adrenal symptoms, because you want to keep the levels of thyroid hormone in your body as even as you can across the day so there is less shock to the adrenals. I now take mine in 4 doses, 3 in the daytime and I've recently added one when I wake up in the night. I haven't tested it fully yet, but one night I missed it because I didn't wake up in the night and I woke up very dizzy and didn't feel right till well after lunch, so I'm convinced it's making some difference.
I know you've now got quite a long list of things to do! If you find it overwhelming, what I always do is pick one thing to work on, take several weeks ( or months) to work that out and get to a point of feeling comfortable, and then pick the next piece of advice to work on. All these things feed into each other, so as you get improvement in one area it will feed in and improve the next bit, too.
Thank you silveravocado 😊 I definitely want to raise it higher as I’m obviously not good with this level.
The minuscule raises are actually what I’ve been trying and it had been working for me - I’ve managed to go from 6 to 7mcg t3 and 75 to 83mcg t4 with very small increases and definitely can’t raise t3 as much in one go as t4 which I also have to do small I’m assuming owing to adrenals. I stopped increasing 4 weeks ago after my first mini adrenaline rush period for a very long time that was a bit out of the blue and I’ve been feeling a little gradually worse. I think maybe I should focus on getting t3 up for now. I’m hoping to get a blood test next week to see where my levels are at after 6 weeks on my last dose. Like you say I think I just need to get that t3 up!
Ah that’s very interesting as lightheadedness is a big thing for me and after my adrenaline period last night my dizziness was worse which has happened in the past too. I also wake up with that sort of after adrenaline feeling and fast thumpy heart that goes when i take my medication. As slow dragon mentioned I’m wondering if I should try taking some t3 before bed so I have 3 doses a day rather than leaving a 15.5 hour gap! If I can ask what times and amounts do you take yours? Do you mind food interactions?
Thank you that’s very helpful!! I think my big takeaway is (after hopefully checking my blood test!) to put my focus on raising t3. Previously my iron increased when my ft3 increased so I think if I can work on that my stomach acid improves and then my other issues should get better too! Thank you again 😊
I take my doses: On waking, then two hours after breakfast, two hours after lunch, then whenever I wake up in the night. Because my day is a bit skewed these gaps are not that different I do avoid food, but I wonder if one day I'll stop doing that as I know some people do argue you can have your dose with food as long as you eat something very similar each time.
When I first changed from two doses to three doses I had a huge improvement. A while ago I tried to go back to two doses, and I started feeling noticeably worse, so returned to three, and because I had such improvement wondered if four would be even btter. Unfortunately it is quite a pain to have so many doses while fasting for two hours before and an hour after each one. That's the reason I would like to be able to manage on just two doses! It means all day I've got a tight schedule of when I can eat, and misses out on cups of tea or snacks.
That’s exactly what I’m thinking as I am very much a snacker in the sense I prefer 2 larger snacks and 3 smaller meals a day - I just can’t go hours without food! Right now it works ok because I snack at 3 leaving me 2.5 hours to my 2nd dose at 5.30pm.
That’s very interesting 3 doses a day helped your feel so much better! I think I’m definitely going to try adding my next increase as a 3rd dose before bed as there’s a pretty big gap between my 2nd daily dose at 5.30pm and my 9am next morning one! I wonder if that big dip being around the same time cortisol is made could be a contributor to my issues! Thank you again 😊
One thing with adding a third dose was that I found I had an improvement in the morning, after I'd taken my morning dose as well. So it still makes difference hours later.
The down side is missing out on snacks, and also in having difficulty joining in with friends and family to eat. I can usually manage to rearrange my day occasionally to have a meal or something with a friend, but it means knowing the night before so I can make sure my breakfast time, etc matches up. It does mean I eat every three/ four hours, and I tend to be quite hungry when it gets to my meal time.
So sorry, it’s terrible that you are so Sick, I Rembrandts being exactly the same before I got treatment, I know they will help you hear because it doesn’t seem your medication is working. All the best x
Thank you I’m so sorry you went through it too! I’ve realised from the amazing help and responses are here my ft3 and t3 dose is just much too low and I need to get that sorted! So I’m going to focus on that and hopefully my problems will improve! Thank you for the kind words x
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I do avoid food, but I wonder if one day I'll stop doing that as I know some people do argue you can have your dose with food as long as you eat something very similar each time. 
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