I have a question that I have not seen anyone talk about. I had my thyroid removed a couple of years ago and have a serious problem with t4 conversion. Since the surgery I have had episodes in which I fail rapidly and end up almost comatose at the emergency room. When things start going badly I loose the ability to think clearly, I am so weak it is difficult to stand. Interestingly I urinate like every 30- 40 minutes. The only thing the hospital seemed to do for me was give me fluids. Once revived, I am able to recuperate at home over 4 or 5 days.
My husband was once on a business trip with his boss who also had a thyroidectomy . He started to feel badly on the trip and told my husband that the most dangerous thing for him was to become dehydrated. He said that the folks at the hospital never understand how dangerous it is for him and asked my husband if he would help explain this at the emergency room. I don't feel comfortable asking my husband's boss about what is happening to him and I wonder if the same thing is now happening to me. Can anyone speak about the issue of rapid dehydration? What is actually happening? Why does my body release fluid like that? Any help?
( am still trying to find a doctor to help with the t4 conversion issue. )
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justwundering
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Have you ever had your sodium levels measured when these problems occur? There was another member on the forum who had all sorts of problems because she chose to not use salt in cooking and never used it on her food.
Sodium and potassium need to be balanced to be healthy. So a very low in range sodium level and a very high potassium level is not healthy and may cause issues with your hydration levels.
Problems with your adrenal glands could also cause issues with hydration (as well as other problems)
When people have too low a level of thyroid hormones, particularly T3, the body uses cortisol as a (poor) substitute. Cortisol is produced by the adrenal glands. If the adrenal glands are producing too much or too little cortisol it produces lots of problems.
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When you still had a thyroid it produced about 20% of your body's supply of T3, which is the active thyroid hormone required by every cell in the human body. The remaining 80% of your T3 was produced by conversion of T4 (produced by the thyroid) into T3 in various organs and tissues of the body e.g. the liver, kidneys, gut, etc.
Since doctors believe (wrongly) that everyone can convert sufficient T4 into T3 even without a thyroid they rarely test T3 and rarely prescribe it to make up a shortfall.
Another problem for patients is that doctors rely on TSH (Thyroid Stimulating Hormone - produced by the pituitary) to tell them whether someone is dosed adequately with Levo, and also T3 if the patient is prescribed it.
But there are lots of problems with relying on TSH, and many people end up underdosed or incorrectly dosed.
Oh, by the way, why was your thyroid removed? And how well or ill did you feel before it was removed?
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Another effect of being hypothyroid, however people have reached that state, is that stomach acid levels reduce and therefore food is poorly digested, leading to low levels of nutrients. Unfortunately, doctors usually think low means "below the reference range" and ignore someone with levels in range but low in range. There is a huge difference between someone with a ferritin (iron stores) level of 30 mcg/L and someone with a level of 100. Doctors don't recognise that a level of 30 is extremely close to being deficient because it is usually in range (I'm thinking of UK ranges here - just noticed you are in the US) and so they think the person is fine, when in fact they would feel much better with a higher level.
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I don't know which of these things are relevant to you specifically. It would be worth getting hold of a copy of your thyroid test results and other test results for the last 3 to 5 years, or asking to see your historical test results online, and then posting the thyroid results and the results for any nutrient levels you've had tested. Make sure that you get hold of the reference ranges for your test results too.
Thank you for this thorough exploration. Healthcare is NOT better here in the Us. It is forbidden to prescribe T3. I have seen so many doctors over the last 40 years. They need to keep the visits down to about 3 minutes so that they can earn enough money. To present a problem that has to be diagnosed is to deny the physician his rightful earnings. By avoiding discussion and insulting the patient they let you know that you need to go elsewhere. I will surely die of this condition as my mother did. I just keep trying for my daughter's sake. On good days I try. I have learned so much, especially through this forum.
To answer your questions:
SODIUM
Yes, my sodium levels are particularly low at the hospital. May 14, 2021 it read 133 mEq/L and December 17 2021 it read 138 mEq/L. the standard is 135 - 148 mEq/L.
I have been trying to find help for 40 years. I have extraordinary symptoms.
LOW STOMACH ACID
I am aware that I have low stomach acid. I have a great deal of pain on a daily basis. I am using bone broth lately and that helps so much.
FERRITIN
Lately my ferritin is measured at 121 although interestingly in the past I was always in the anemic range anytime I was tested. Standard in US is 22 - 320 ng/ml.
B12
My B12 measured 515 in December. I am taking supplements now and will make sure I am taking the right kind. Interesting to know that 500 is considered low. US standard is 200 - 1100 pg/ml.
Thank you for these thoughts and ideas. This helps me to feel better, that I am on the right track. (counting on this not being a diabetes situation.) I am consciously trying to stay hydrated now. I carry water with me. I have noticed an improvement. When I begin to dump fluid, I make sure that I drink and drink and drink. I have not been to the emergency room with a bad crash for awhile. It helps me to think of it as a situation that I can improve as opposed to some organ deteriorating.
BLOOD
My blood platelet count is high out of range. This is sometime thought to be a sign of dehydration. In 2022 my results were 458 K/uL and 452 K/uL.
This may be more than you are interested in but this is what I have on record so far:
Yes, my sodium levels are particularly low at the hospital.
It would be a good idea to add more salt to your cooking and sprinkle it on your food too. You don't need to add a lot.
Another option would be to put a quarter or half teaspoon of salt into some water and sip this throughout the day.
Electrolyte powders are another possibility, but they would add more than just sodium and chloride, they might add potassium, calcium, and magnesium, depending on the product. Whether these are necessary for you I wouldn't know.
These might be of interest - there are a lot of electrolytes :
I am aware that I have low stomach acid. I have a great deal of pain on a daily basis. I am using bone broth lately and that helps so much.
Do you have gastritis or stomach/gastric ulcers? Have you been tested for h. pylori or SIBO? Do you have IBS? Do you eat gluten? These things get mentioned on this forum a lot. It would be worth reading through some of the posts that mention these things, and doing some research on each of them. A lot of people get gut relief from eating a gluten-free diet. It won't achieve anything if gluten is just reduced. It has to be eliminated 100%.
Have you ever tried taking apple cider vinegar (ACV) in water before and during your meals? It makes your stomach more acid. ACV gets mentioned a lot. You could try half a teaspoon in water, and start sipping it through a straw five minutes before starting a meal, and during the meal. The straw is to protect your teeth from the extra acid in the vinegar. After finishing eating rinse out your mouth thoroughly with plain water to get rid of as much acid as possible. An hour (or more) later you can clean your teeth.
The suggestion of half a teaspoon of ACV in water is a starter dose. You can take up to a tablespoon (or two?) in water (I think - please check).
If it doesn't help, just give it up.
Other possibilities are betaine + pepsin, bitters, and digestive enzymes. If your bone broth is helping then keep taking it.
FERRITIN
Lately my ferritin is measured at 121 although interestingly in the past I was always in the anemic range anytime I was tested. Standard in US is 22 - 320 ng/ml.
This sounds like quite a good level. Unfortunately, it is impossible to be sure whether iron levels are good just by checking ferritin - you also need to know the level of your serum iron and transferrin saturation and a few other things tested in an iron panel.
My B12 measured 515 in December. I am taking supplements now and will make sure I am taking the right kind. Interesting to know that 500 is considered low. US standard is 200 - 1100 pg/ml.
Try to get your B12 level closer to 1000 pg/mL or top of the range.
My blood platelet count is high out of range.
Snap! I have this problem too. I haven't consulted a doctor about it and haven't found a way of reducing it.
It is forbidden to prescribe T3.
Do you know if you can buy T3 from countries outside the US? I'm sure some Americans on the forum do this. You could write a new post asking them specifically to let you know via private message where they get it from. Any posts of this type are always closed to public replies, and conversations must occur via private message - it's one of the forum rules that we all have to abide by.
If you want to get private testing done, without involving doctors you could find some places that might do it on this link :
I'm echoing some of what humanbean said in their reply.
It would be important to get checked for adrenal insufficiency. There are tests that are undertaken in a hospital setting in the UK so not sure how it would work in the USA but it would be an idea to find out so adrenal problems can be ruled out.
Also with you having had a thyroidectomy do you still have your parathyroid glands intact?
These are all issues that are best discussed with an endocrinologist, hopefully a thyroid specialist.
I've only recently had a partial thyroidectomy so working through these issues myself.
Thank you Hedgeree. I do have parathyroid intact. My endo has let me know that he is only concerned with my TSH, nothing else is worth his time. He is hopeless but is my source for my Levo. Someday I hope that I am able to tackle the adrenal issue. One thing that amazes me is I always seem to come back if I can just weather the ups and downs. When I am in the middle of the darkest times, I think I am going to die. But in a week or two, I come back. I event get my mind back. I feel buoyant again. I hope that you do too. Remember that when you are low, your spirit feels broken but that is yet another physical symptom that may be relieved when your cells energy comes back.
I really feel that you need to tackle the adrenal issue sooner rather than later. It is very important to discuss it with your endo and to rule out adrenal insufficiency.
Patient recommended physicians. I wish I had any hope. How many will I have to endure? But I will try. We are not able to make appointments with endos. In the US we can only access an endo if our physician will recommend. So, I have to find a physician that will be interested in T3. And then the physician has to happen to know an endo that will prescribe T3. I don't think it is realistic to think that I will find help.
I've had any amount of fainting issues and collapse over the course of being hypo, even on treatment. Terrible frequent urintaion at times and raging thirst, even waking in the night due to needing a drink of water. This has all been checked out, not diabetes which is sometimes what it looked like.
I also have a conversion issue and now getting T3 added to my levo is helping slowly.
Nothing to do with this particular issue but we have already ascertained that you are not converting well the thyroid hormone replacement and need to find another doctor who prescribes T3 - Liothyronine.
If this is difficult you could also be helped by an alternative or more holistic doctor who prescribes Natural Desiccated Thyroid which contains all the same known hormones as that of the human gland and the original and successful treatment for hypothyroidism for over 100 years.
A fully functioning working thyroid would be supporting you on a daily basis with trace elements of T1. T2 and calcitonin plus a measure of T3 at around 10 mcg + a measure of T4 at around 100 mcg.
I have read these integrated doctors are more common in the States than here i the UK where many of us and having to self medicate in order to reclaim our lives, health and well being.
There is a smear campaign going on in the US right now and desiccated thyroid is becoming scarce. I was on it for a long time but USDA kept recalling it and I am terrified of being without. There are lawsuits in the works. I lost my doctor to the insanity of COVID. (She was a hostile non-masker) It is a crazy world. I am on T4 which is easy to get but, insufficient.
OK then - so try and obtain T3 as previously suggested though maybe you can buy both Armour and/ or T3 - Liothyronine without a prescription and do it for yourself as we in the UK seem to be having to do if we want our lives back .
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