This is a long story, and as with so much in this "we have too much info" age, I'm probably over-responding, but, I was recently blindsided by a new health condition, and I don't fancy having it happen again if there are cues available.
I've had hypothyroidism/Hashimotos for 16-17 years, at least based on diagnosis. Started on levoxythyrone as soon as I was diagnosed, tested yearly, and...that's about it. I won't say my symptoms were well managed, but I felt better on medication than not, and doctors (general practitioners only,) only ever seemed concerned with levels. not so much how I felt. One did offer T3, but I couldn't tolerate it.
Shortly after starting the levo, I developed PVCs. I wasn't concerned about them but I did associate them with the medication, especially initially because they felt like being over-caffeinated, and I felt less sleepy, the medication was the common denominator, ego, medication caused them...in my mind. They did--along with my very slow heart rate--eventually become debilitating in their own right, and they got worse with stress, so I/we "made accommodations" (downsized our house so my income would be less important, etc.)
Then, last year, I learned I have very severe osteoporosis. This took me to a naturopath, because first, I was way too young for this advanced a condition, and I just had a suspicion that Hashimotos linked everything.
The naturopath did a lot of tests I'd never had done before, the upshot being--at least what was primary for me--that I wasn't absorbing nutrients well. She put me on various mysterious supplements intended to deal with bad bacteria, yeast, parasites, and kidney/liver issues. I showed I had a high hematocrit level at that time too but I of course googled it and saw the number one cause is dehydration, and that day I had had no water, coffee, etc. due to not taking any of my supplements before the blood draw. She actually seemed concerned about kidney and liver issues but I was dealing with pain from vertebral fractures and shrinkage of my torso, so those items got pushed out of my mind.
Meanwhile, I made quite a few changes to my diet. I wasn't significantly overweight and I'd continued to walk daily no matter how much pain I was in; have never smoked, drink very little alcohol, rarely ate fast food (but I did eat some processed/junk food,) and basically thought I was doing as hood a job as could be expected for someone with a lifelong food addiction on top of poor thyroid finction. But, pain. Pain has been quite a motivator, and glomming on to the idea of absorption possibly being a contributor, I was ready to up my game.
It hasn't been perfect, but I did make significant changes. It can be challenging to know how to eat for various conditions, though. For thyroid, I hear "no gluten and dairy". For osteoporosis, it's "get calcium from food," which makes dairy top choice. You're also supposed to eat--generally--you don't necessarily want to limit calories or lose weight with osteoporosis. I did cut out gluten, and I'm still not eating grains for the most part (I'll have white rice sometimes.) I limit sugar pretty severely, don't drink pop, limit caffeine, try to cook our own food as much as possible. Sometimes things like protein bars or veggie sticks slip in (I eat in the car a lot,) but compared to a year ago, I'm much improved.
Of course, I'm taking every supplement that might help bones, so vit D, K2, magnesium, berberine, nattokinase (just as of recently,) boron...the list is long. Some of these are supposed to also be good for things like insulin resistance, clogged arteries, etc., so bonus.
The good news is sometimes I actually feel pretty good. My bones are going to be a process, and I did discover that whether I have a gluten intolerance or not, I feel better when I don't eat it, so m energy is reasonably good.
So I was excited for this year's blood work.
Oh, I should note, my PVCs got really bad, and through this forum, I learned about taurine and l-arginine, which combination actually does seem to have completely eliminated them.
Which is possibly why other elements of my bloodwork have caught my attention?
At any rate, there WERE some improvements! One big improvement was in the TG anti-body--went from around 650 to 60. The other one, TPO is still over 900. (Last year was the first time I ever saw those numbers.) I don't know if fluctuations like that are typical or if something I did made a difference.
Unfortunately, for the second time in a year (this is the first time my TSH has been checked four times in a year,) my TSH was high.
Some things I don't care about this year went from high to normal (like--potassium, how do you get high potassium? I do care about serum calcium, and it went down.)
My vit D level went up last year and gas stayed up despite reducing the amount of D I take (85) which I think is good.
But, urine calcium also went up. Creatinine went up. Hematocrit went up. ALT went up. Ferritin went up. Egfr went down--quite a bit. Basically anything that suggested kidneys and liver were struggling are now flagged as "high". Not "omg" high (my bones were "omg" high,) but enough that it's annoying in light of my improved diet, increased activity. ten pound weight loss (so even three inches shorter, my BMI is within the healthy range again,) and not acquiring any new bad habits.
(Total cholesterol, HDL and lipoprotein all also went up (HDL now at 94, read that it can begin to be not so protective if it gets too high. LDL went down but it's still high.)
What gives? Of course I've googled everything, and it does appear thyroid can affect all of these (except maybe lipoprotein.) And, I'm getting older. (63 now.) Maybe this is just how it goes? You expect to see things start to fail?
Does any of this indicate that my thyroid condition has not been well managed? Is this just another of those, "We don't know" propositions?
All of that aside, does anyone here have a similar profile? Any thoughts on what I can expect down the road? I have had mixed experiences with doctors: it really does seem they have one answer--medication. I am taking a diuretic for the urine calcium situation. But that endocrinologist I saw twice didn't even attempt to connect dots, didn't consider how a diuretic might affect my heart, for example, though he did mention electrolyte imbalances were possible. (Best I can tell, electrolytes are spot on.)
I appreciate that the naturopath does try to connect the dots, but her knowledge is still limited.
And in the end, maybe it doesn't matter. But it gives me a puzzle to try to sort out, and I HAVE learned some things that have made a difference when I've posted, so...thank you in advance.
(BTW, I'm in the US.)
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josephinius1
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Goodness me, sounds like a bit of a journey you’ve had with your health.
Let’s start with your most recent thyroid test results; as much detail as possible please with ranges, so that the knowledgeable on here can look at your levels. Also, any results re vitamin D, B12, folate, ferritin.
One big improvement was in the TG anti-body--went from around 650 to 60.
Sorry, but that's not an 'improvement' because it's irrelevant. Antibodies fluctuate all the time, so once you know that they are positive, and you have Hashi's, the actual level doesn't matter. It doesn't change anything. You still have Hashi's.
High cholesterol is usually linked to low FT3, not to diet. Cholesterol is made in the liver and the liver keeps levels steady by making more when you eat less, and vice versa. Have you had your FT3 tested recently?
I developed tachycardia (I realise this isn't the same as PVC but I'm assuming iron could affect the heart in multiple ways) as a result of being low in iron/ferritin. I started to test and treat the problem myself as soon as I found out I could buy prescription-strength iron supplements.
It would be worth your while to get an iron panel done. The NHS will usually test ferritin only but an iron panel includes that and other useful iron-related info. An iron panel can be done privately with a finger-prick test or a venous blood draw :
Never give up two things in your diet at once - you need to know if they both help, or just one does, or neither. You could give up gluten for three months then try eating it again. If it makes you feel better then worse then go back to being gluten-free and stay that way. Some people never have any reactions one way or the other to giving up gluten so they will go back to eating it rather than cut out a big chunk of their diet for no purpose.
The same comments could be said about food which contain, or are made with, animal milk. Once you've decided what to do about gluten go through the same process with animal milk and its products.
Please note that eggs are not dairy products. They got classified as that in so many people's minds due to the fact that farming women used to milk cows and look after the chickens because both jobs were deemed to be beneath men.
I gave up gluten 100% and it did make me feel better, but I never really adjusted to it mentally (I felt hard done by!), and after five years I relapsed totally. But I still hope to stop again some day. I never even tried to give up milk products.
Your high TSH suggests that you are under-medicated for your Hashi's. You really need to know Free T3, but Free T4 and TSH complete the usual trifecta.
Sadly, so many organisations (doctors, health services like the NHS, insurance companies) which "allow" patients to have Thyroid Function Tests have never wanted to do Free T3 tests, would occasionally do Free T4 tests, and would test TSH. But in the last year or two it seems almost the entire globe (excluding patients like us) has decided that only TSH needs to be tested, not Free T4 and Free T3.
This is really, really stupid. TSH isn't even a thyroid hormone, it's a pituitary hormone. If the hypothalamus and the pituitary are in perfect health then doing just a TSH occasionally may be okay at a push, but really I doubt it. The people on this forum and no doubt other thyroid forums on the web are made up of people who don't feel well on the standard testing and treatment routine. But we are ignored.
...
Referring to calcium and related subjects...
I would suggest that you get your vitamin D tested and optimise it.
Optimal is 40 - 60 ng/mL in the US and is 100 - 150 nmol/L in most of the rest of the world.
To convert between the different units of measurement :
The best form of vitamin D supplement is D3. This is usually derived from animal sources (sheep's wool is a common source), but a lichen has been discovered which also contains D3, and supplements made from lichen would be good for vegetarians and vegans, or others who struggle to tolerate D3.
Optimising vitamin D raises absorption of calcium from the diet, which is good.
Personally, I don't approve of calcium supplements for any health condition, unless it has been tested and been shown to be deficient. Think of the days when teachers used chalk on blackboards. Chalk is brittle and snaps easily. Nobody wants bones that snap like that.
However too much calcium can end up lining the arteries creating the condition commonly known as "hardening of the arteries".
To make calcium go into the bones and teeth rather than the arteries people need to take magnesium and vitamin K2. Boron is considered to be good as well. Selenium is also good for the bones.
elevated calcium in the blood and urine is a flag for a parathyroid issue. Has your parathyroid hormone been tested? Primary hyperparathyroidism (PHPT) is a cause of osteoporosis.
Also if you have had bone profile bloods check what your phosphate level is doing. Low phosphate is another symptom of PHPT. Finally don’t fall into the trap of assuming everything is due to thyroid issues, that is what I did along with my GP and I ended up with long term undiagnosed PHPT.
I am sorry you have had such a difficult time. I look forward to reading your test results and details of your present thyroid meds when you post them. What stood out for me was your short sentence about being offered T3 and being unable to tolerate it. Perhaps you could expand on who it was offered by, and how you trialled it. Was it tested and found deficient? How much did the doctor offer and how did he suggest you incorporated the T3 in your existing drug schedule?
hi Josephinius1 sorry you’ve had such a rough journey, I’ve not really a lot to add to the others’ replies but would say if your TSH is up that’s a flag for sure about under replacement. It seems from what I’ve read here over the months that thyroid not functioning at optimum levels causes other issues. I know you asked above re possible connections. It’s hard for us to really know isn’t it? I’d hoped that going on NDT would improve fibromyalgia but it hasn’t so maybe sometimes things are linked and sometimes not.
So I agree, post your results here for the really well informed to comment and try and get your thyroid health at its optimum. Thanks for sharing your journey with us. 💜
You might find a recent podcast, with transcript, of Zoe Food and Nutrition informative….specialist scientists talking about new research on vit D and calcium…. Always interesting and well produced podcasts ( you can find them on YouTube)but from my point of view I get frustrated that they are talking about the vast majority healthy and not for eg those already compromised by thyroid conditions!
Lots of good advice in the replies preceding this one already.
I second what Judithdalston said above - check out the Zoe podcast about osteoporosis - the link is link.chtbl.com/s9cwxMzY?lid...
It would be helpful if you posted up to date blood test results, including the reference ranges. Similarly, a complete list of the supplements that you take, and relevant medications.
Could you clarify what PVC is an abbreviation for in the context of your post please?
To add to others great responses...you mentioned high potassium. In my experience, high potassium is linked to low T3, and vice versa. This would also correspond with your high TSH result which suggests that you are undertreated with respect to your hypothyroidism. Conspicuous by its absence is any mention of fT3 and fT4 tests. T3 and T4 are produced by your thyroid and you can't tell if you are getting enough thyroid hormones, or whether you have got the balance between them correct, if you don't test these 2 items. The following article is interesting. If I remember correctly, both too much and too little T3 and T4 are bad.
Prevalence rates for 10 chronic disorders at various FT4, TSH and FT3 levels
I'm working on responding to you all, but you are latest, showed up in my email. so I'll say...I do get all those tests. My potassium is within range on this test--it was last year (when all my thyroid levels were fine,) that it was high. I was comparing notes today and noticed T3, T4, Free T-everything were all about the same as last year. I suppose the high TSH could mean they're going to change, we just caught it early?
I listened to the Zoe podcast for the first time today--didn't listen to the osteoporosis one, but the inflammation one, because it's my understanding it's a given. It was good!
I appreciate everyone who weighed in. Thank you for your input. (To be honest, I can't quite remember what I posted about, didn't think it was thyroid stuff, but it's all good. 😉)
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Diagnosed with Hashimotos 2 years ago
Hashimotos 13 year old
GP admits she knows next to nothing about hypothyroidism
How do you know what foods, if any, to give up when you have Hashimotos?
Don't know where to turn next
