Here’s the short version: I’m having chest pain with a suppressed TSH, so I think the doctors will want to lower my meds when I’m actually feeling more hypo than hyper. Does anyone have any advice? I so appreciate the people here! The picture above is my last thyroid bloodwork from over a year ago.
Here’s the long version:
I’ve had my own Hashimotos under control for 15+ years with Armour thyroid. I’ve talked my primary care doctor into prescribing Armour, allowing me to adjust slightly when symptoms shift slightly, as long as the T4 and T3 bloodwork is within range. The doctor would prefer I be under the care of an endocrinologist, most of whom object to using natural thyroid, and also do not allow such a suppressed TSH. My TSH is always under 0.1, usually like 0.03 or somewhere near there.
But now I have chest pain that landed me in the ER, and the problem is that they are going to want the TSH to increase, even while I’m still having some hypothyroid symptoms.
At the ER, they did a 5-second EKG that seemed normal, but they did it while I was having no symptoms. The chest X-ray didn’t show anything, and the blood tests didn’t show the enzymes that indicate a heart attack. I’ve been doing ECG measurements on my Apple watch at least 10 times a day when I have chest pain, and they all come back normal sinus rhythm.
When I go in to have this looked at again, since the chest pain has continued, their reaction will be to lower my meds, but the thyroid-type symptoms I’m having point more toward hypothyroid rather than hyperthyroid:
Symptoms and stats: my resting heart rate is 59
I’m needing naps, which is usually my first indicator I need to increase thyroid meds slightly.
I’m having hair loss that the hairdresser noticed.
I’m gaining weight, but not drastically. But certainly not losing weight.
Blood pressure is always ideal, like 128/72 or something in that neighborhood.
If I had to guess where I’m at, I’d say that I should increase my thyroid meds slightly for a few weeks and see how it feels–but I’m worried that when I go in and get tested, as I’ll have to do with this level of chest pain, they will lower the meds and I will be miserable.
I even considered getting a private blood test so that I could know before I go in and deal with the doctors.
I was really sick for a month about a month ago, so I was wondering if the chest pain could be some kind of pericarditis from that. . . but the ER said that would normally show up on the chest x-ray.
I’ve been reading through all the past posts on the forum about “cardiac” and “TSH.” Thanks in advance for any thoughts!
Thanks,
Lost
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LostinHeadSpace
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Definitely you should get a current fT4/fT3/ TSH test done , as it might be significantly different to a year ago... and symptoms can be misleading, 'a bit overmedicated' can feel very similar to a bit undermedicated.. even when you think you know your own signs pretty well.
it's quite normal for the TSH to be low suppressed when taking any form of thyroid hormone replacement that contains T3 and Armour is a brand of Natural Desiccated Thyroid and contains both T3 and T4 :
Have you changed dose recently - or started a new bottle as there could be some slight inconsistency of potency between batch numbers within the brand ?
Your symptoms read as more hypothyroid than over medicated ?
Do you have Hashimoto's - thyroid auto immune thyroid disease as you could be experiencing and AI attack ?
I manage and track my NDT on my Free 3 readings - and that appears to be in range on this blood test - but yes, we need to see current blood tests results just to rule in or out your current dose of Armour.
Yes, I did just switch bottles! I haven't been worried about having a very low TSH for years, only when the new symptoms started. I did think my symptoms seemed more hypo.
Yes, it's definitely Hashimoto's. I'll read up on AI attacks. And will definitely get the blood test--I was going to get it today, but then delayed because I was taking biotin in a supplement. Thank you for the input!
Ok - yes biotin can mess with results, depending on the assays used at the Laboratory
Well it's difficult when with Hashimoto's but ultimately you will be left more hypo than before so just reassess your NDT by 1/4 grains up or down once the attack is over and your body settled back down again.
Worthwhile running your core strength vitamins and minerals, ferritin, folate, B12 and vitamin D as these tend to nose dive with AI attacks and we need to maintain these at optimal for any thyroid hormone replacement to work well.
I see someone else has kindly stepped in there and not left you ' hanging ' :
Depending on one's diagnosis - some reasons why one becomes hypothyroid is of an auto immune nature where ones own immune system is triggered and turns and starts attacking ones own body rather than defend it as intended.
Low iron! That's super helpful to know! My iron has not been tested since 2020, when it was fine (111 out of 27-159). Maybe 6 weeks ago I had a round of antibiotics for a sinus infection, and they were incredibly hard on my digestive system, I even called in to see if they could change to a different type. So maybe the gut problems affected things? I was taking a good probiotic the whole time, and generally switch between Cuturelle and Digestive Advantage Probiotics from Schiff to try to keep the good bugs going.
My Vitamin D went last tested in 2022 was below range. 24 (30-100), so I've supplemented daily since then with 5000 IU (625% daily value). It will be retested in this next round.
I also supplement with Thorne's Basic B--I realized Saturday that it has Biotin in it, so I probably shouldn't do the bloodwork until maybe the end of the week? How many days do I need to wait with that?
My B12 was last tested in '22 and was on the low end, 262 (232-1245) but there's B12 in the Thorne B, so I'm hoping to have addressed that.
Also in '22 my Free T3 was 2.9 (2 - 4.4) and my Free T4 was 0.94 (0.82 - 1.77).
Folate was low (the numbers weren't given for that, but it was low on the visual bar.)
I also take 0.5 mg estradiol and 2.5 mg progesterone, but in the evening to not interfere with the thyroid. I'm in my low 50s and menopause has stabilized.
I'm not currently gluten free or dairy free, but we have tried going very strictly GFDF for periods of 6 weeks several times as a family. My daughter has a more severe form of Hashimoto's overlapping with fibromyalgia/pain amplification/fatigue, and we both are clearly poor converters, who do terribly on t4 only. (Oddly, she also did noticeably worse on T4/T3 synthetics, including Tirosint. They tried every form known to man before I finally begged and pleaded for her to go back on Armour, which has instant improvement for her in every way.)
Very helpful! I would never have thought of supplementing with b12 during the week that I'm off the Vit B complex. The Vitamin B complex from Thorne is one of the only supplements I've ever taken where I actually noticed having more energy--most of the things I take change so gradually that they may be helping, but I never notice it.
So you'd suggest it's worth trying the gluten and dairy free trial for a long time?
I'll definitely try to get the doctor to do the full iron panel!
I got chest pain with extremely low iron and ferritin. If you haven't had an iron panel done in recent months then it would be worth getting one tested.
An iron panel would include :
Ferritin
Serum Iron
Transferrin or Total Iron Binding Capacity (TIBC)
Transferrin Saturation Percentage
C-Reactive Protein (CRP) This is a non-specific inflammation marker that is useful when interpreting ferritin levels.
That is super helpful! I'll ask if they are willing to add those to the bloodwork!
It would also check out if I were low iron, because I've had unusual fatigue this spring. Both of my teenagers have just had mono (when it rains, it pours!) so I did have bloodwork to check if I too somehow had mono, although I'd had it in the past, and the results were definitive that I didn't have a current case--but fatigue was why they tested, which would fit with low iron. I've been eating far less red meat this year as well.
Please note that it says that serum iron is tested rarely and is not considered to be useful in determining iron deficiency. But some people with low ferritin have found that their ferritin doesn't rise with iron supplementation. Instead their serum iron rises dramatically, and unless it is measured the patient doesn't know why they feel so ill.
Wow, that's wild. I can see how the "not converting" thing could work in more than just thyroid. I will try to talk the doctor into these tests, but some might be a bit of a hard sell, because we have an HMO, which means they tend to cheap out.
When you say chest pain. Present all the time? From time to time? Aggravating features? A long time ago I started having chest pain that could not be diagnosed. (No name for it then). Long story short, now it’s got a name (two in fact frankly, which I think are the same thing) vasospastic angina and mitochondrial ?? This pain has almost been completely absent since starting levo two years ago. It not entirely unknown on the forum. I have been in contact with one person but she does not seem to be on the forum much. However there are more people on the cardiac forum with it. I stopped posting there because there’s a lot of fear on that forum and I found it unsettling. I have had the condition for over twenty five years. I think it has always been due to undiagnosed hypothyroidism, as to the speed it mostly resolved with commencing levo. I can experience it from time to time. My meds are not optimal I would say.
Like you, clear ecg, no enzymes showing heart attack etc.
If it is thyroid related - and I doubt an endo would necessarily agree (my experience is I was sent to cardiology who did not have a clue either) the last thing you want anyone to muck about with your thyroid meds. You know yourself best. Sounds like you have been doing very well until these recent symptoms. Just suggesting another type of incidence. BUT do everything suggested above. It’s good stuff.
I have heard of psychiatrists spotting the condition as thyroid related, so that tells you a lot about GPs, endos and cardiologists.
Curious to know how they caught your two conditions? I had a cardiologist tell me a decade ago that my tachycardia was just how my body was made and he used a car analogy to explain it. That didnt really explain anything because I didn't always have tachycardia and chest pain.
After yrs of observing my body, its always gets worse when my thyroid is off, when I'm increasing/decreasing a dose and when my sleep apnea is acting up
I wish they had discovered it. I had to go through four GPs to even get referred to a cardiologist. In the end I thought who would hate to have me pestering them in their surgery. I picked the grumpiest oldest male doctor. I was about 48 at the time but it was after a long period with more usual hypo symptoms which were also ignored. He referred me immediately to cardiology. There was a campaign on to get women complaining of heart stuff a to cardiologist. Cardiology tested thyroid. I was subclinical but no notice was taken. I was not informed. Even 15 years or so later when I was very definitely hypothyroid (blood tests again) I still was not informed and no meds for another four or five years. Like hypothyroidism treatment, the treatment for heart was ‘classic’ and limited and it did not help enough. Eventually I chose no meds and just managed the pain by changing behaviour. Basically trying not to annoy my heart until it became impossible. I feel I have been disabled for years. Could not continue to work - similar to many on the forum. Fairly recently (within the last year) my Gp grudgingly agreed it was likely vasospastic angina. No idea whether he had even heard of it. They do tell us such lies. I found the name of it to discuss with the Gp from someone on the heart HealthUnlocked forum. Anyway with no reference to heart situation, levo helped. I never even considered it would. Unfortunately all other hypo stuff needs attention and I think my heart could improve more if I could get T3 to …… handle it.
I refrain from further comment now because I will just become abusive. Of course there are good doctors out there. I have met a few but it’s the ones who let you down that cut deep!
You've gone through it and I'm sorry that the doctors weren't much of a help when it came to your heart and overall health. Thank you for sharing your experiences and here is to better days for us all
Wait, this is wild, because my son is diagnosed with a mitochondrial disorder! He actually had a period of heart pain 3 years ago that last three months, and went away, and the cardiologists ran every single test possible. I never associated my son's situation with my own because his symptoms have never included thyroid or autoimmune issues that they could catch. My son's disorder was initially caught when he was a baby, after he caught a bad cold, because mito issues often show up after another unrelated event that require more energy of the body. If you want to find an area of medicine that normal doctors have NO idea how to handle, mitochondrial problems are the definition of that. Wow.
Most mito disorders, if they involve the mDNA, are inherited only from the mother, so we did so some bloodwork on me when he was diagnosed, and it didn't show anything, so I just forgot about it. Now I think I'll have to revisit that. By the way, just for the record, we've seen several top pediatric geneticists, and the treatment is the "mito cocktail" of Carnitine, Co-Q (in the accessible form) and B-2 (riboflavin), taken twice a day, and it made a noticeable difference with my son--both in his bloodwork, muscle tone, heart, and general well-being.
I can't believe how this forum is so helpful, especially for things normal doctors aren't trained in. Thank you so much, and I'm sorry that you had to go through so much!
Well well well. Straight back at you LostinHeadSpace! I am trying to get my head around Adrenal stuff before I embark on another attempt at T3. The process includes broadly similar to the ‘cocktail’ you mention. I was losing a bit of ‘heart’ with all this reading (and somehow not getting on with getting better) but you have bucked up my interest again. Two experts on this Adrenal stuff Peat and Myhill (so far quite similar to each others explanations of Adrenal cocktail) plus your interesting ‘mito cocktail’ literally have brightened my day. I am going to look into this again. So thank you so much!
It’s disappointing when medics do not even understand quite basic blood tests (e.g. hypothyroidism) far less something as ‘new’ as mitochondrial stuff. I could go on…. But I won’t. Good luck with your ‘sorting out’ and keep posting. I will be very very interested to know how you get on!
Oh my heart goes out to you! But there's hope out there . . . things like the mito cocktail fly under the radar because there's not pharmaceutical money to be made. We initially saw a really impressive head doctor about the mito, and he did a great job of setting us up for how hard it would be to get issues treated down the road, because it affects the gut, the muscles, everything, and each of those doctors are not used to looking for the unusual cause. (We actually carry a letter with us when we travel that explains to the ER how to revive him during a crash with D10 sugar solution, even when his blood sugar is not low! because it sort of "pushes" the metabolic pathway, but the ER doctors are not used to this at all.) That doctor told us that the doctors would not want to look at the bigger picture and that we'd have to carry around our 2" thick folder with the evidence for what we were saying . . . but he was that one person who knew what might help, and it worked (very gradually), and my son is thriving. You might find just the right things that will gradually make you feel like yourself again, and it will be worth it!
Sorry to hear about your son's struggles and I wish you and him better health. I've been going back and forth in trying CoQ10 and B2 for awhile now and I think it's time I've tried them . God willingly it will make a difference for me .
Can you pls pls share the supplement brands of carnosine, CoQ10 and B2 that your son uses and the dosages.
I have found some good stuff about this from the infoLostinHeadSpace provided. There is an analogy to a car engine. It made me think of you. I do not know how to put up references. I have been told how but somehow I just can’t get my head around it. I will type out some google references in a few days as I am going out today and I may need recovery time. In the meantime check out Google Mitochondria and Hypothyroidism together. Tachycardia is not quite the same as palpitations but I think same ballpark and worth checking. See my further reply to LostinHeadSpace . Could be important to us.
Yes that is one of them. See also tattybogle post to me earlier about Tythrop who also has highlighted this subject recently. I have not had a chance to reply to her post yet, although I have now read the referenced articles. We can get our skates on sooner rather than later!
Well I am so pleased for you and your son. I think the explanation “the doctors would not want to look at the bigger picture” is very familiar, probably with most of us on the forum. It’s why we are here. Keep us posted though about your outcome please?
Now that I know exactly what I was looking for I found some good references!!! The mitochondria cocktail is similar to the adrenal cocktail, so basically it is the same ballpark. Honestly I have been cross eyed with all this adrenal stuff, trying to underpin my heart situation for a further attempt of T3 at some point.
The T3 gave me very uncomfortable/frightening palpitations but helped every other aspect of my hypothyroidism. After only one week of using the T3 at a very low dose, the unpleasant heart effects lasted much longer, as did the good effects. It’s all worn off now, fortunately and unfortunately.
The HAPPY thing for me is that the ‘mito’ cocktail is more precise and has been specifically tested for my situation and tested on women! Probably due to the knowledge it comes via the Mother’s line. I have two daughters and four granddaughters. Enough said. There is a clear hypothyroid connection too. Ooh today I am a happy person. Like you say WOW! Maybe I can get myself more fully sorted out yet!? I could ask why endos and cardiologists do not know this stuff but I would be wasting my breath, wouldn’t I? I am so pleased you posted. Could be very important for both of us!
OK I read these before LostinHeadSpace post. However I did not see any direct connection to my issue at that time. I did know about the mitochondrial thingy but the connection.still eluded me. Like a lot of medical explanations, what I had read could have been ‘me’ but without LostinHeadSpace and her situation it was just another piece of knowledge. Like a piece of a jigsaw which still had too many pieces missing to actually make out the picture. What can I say tattybogle? I am impressed by your ‘Super powers’ and very very grateful to you for highlighting this. I will communicate with Tythrop too. What a fab forum.
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