Ten months ago I nearly left this world. A lot of stress in my life and I thought I was just run down and tired. Long story short I ended up in ER severely anemic, got 2 blood transfusions and still low blood count so continued with the iron. Upon follow up, for some reason I requested my thyroid tests and my TSH was 206... Began Levothyroxine at 50mg which brought it down slightly but still triple digits. Increased to 75 mg and TSH came down to 68... Still too high. Levo increased to 88 and I have continued to supplement other vitamins and minerals as suggested, but no more high iron doses as blood count is good ... Was feeling good. T4 and T3 were starting to look good but my TSH went up in the 90s, so the endocrinologist put me on 112 Levo. I have also included a small dose of raw dessicated bovine thyroid on my own as it was recommended that it couldn't hurt... Then, since I have not been feeling so great, so I asked her if swelling is typical. She said if I'm not getting enough thyroid. I went and had blood drawn since its another month before I see her again, and now my TSH is at 304. They didn't check T4 T3 or anything else ... I am certain there is something else going on to cause the numbers to go up, but I am weary physically and mentally trying to process things. I do a lot of research, but I wonder if anyone else has had TSH numbers this high. The first doctor I saw said I shouldn't be walking in like a healthy person and looking normal with that readout. I have begun gaining weight quite noticably since taking Levothyroxine, whereas I was fairly consistent before. Has anyone seen TSH in triple digits before?
Extremely High TSH: Ten months ago I nearly left... - Thyroid UK
Extremely High TSH
And yes, the Endocrinologist tested me and said I have Hashimotos.
If you have been very hypothyroid, your pituitary can have enlarged (hyperplasia). Thus it can produce more TSH.
Once thyroid hormones rise, and TSH comes down, it can shoot back up very quickly because you have the capacity to produce so much TSH.
You absolutely MUST get Free T4 and Free T3 tested. The TSH number just says you are (very) hypothyroid - but doesn't tell you where you are.
There are several possibilities including, simply, that you need more thyroid hormone. Or you are not absorbing the levothyroxine sufficiently well. Or you are producing excess TSH. (If you had a fully functioning thyroid, that would likely make you hyperthyroid. But if your thyroid can't make enough thyroid hormone, that can't happen.)
Or something is interfering with the TSH test.
So I will be getting the t3 and 4 tested soon ... I'm very new to all this but trying to learn. Is there a test for the pituitary function? Also what might be interfering? I have been reading suggestions on here about going gluten free. It won't be easy but I'm going to do that ... And when you say not absorbing, do you mean in the cells? I just got some information yesterday on glutathione which i had no inkling about previously, and it is supposed to help health on the cellular level. I haven't seen anything to suggest that's a bad idea so I think ill try that too. Anything else I should be asking to have tested? All suggestions are welcome here.
My Vade Mecum has a section on Human Hormones - in there is a list of the other hormones produced by the anterior pituitary. It is not unusual to test a selection of them - if others are high, it pushes the thoughts in that direction.
My point about absorption was not absorbing levothyroxine from your jejunem, duodenum. Imagine you take 100 but only absorb 20. (Usually we absorb 60 to 80% of what we swallow.)
I assume you are taking levothyroxine well away from food, drink (other than water), supplements and other medicines?
helvella - Vade Mecum for Thyroid
The term vade mecum means:
1. A referential book such as a handbook or manual.
2. A useful object, constantly carried on one’s person.
Please don't get put off by the number of pages!
Nor by the fact it is targeted at people interested in thyroid issues. Much of its contents could be of use to many involved in health issues. Things like abbreviations, lists, general reference information, an Appendix of links to many useful websites.
And do keep up to date. I edit it frequently- sometimes trivially, sometimes extensively. If your copy is more than a few weeks old, please download it again.
In particular, it is not intended that you sit and read the document. Just that you download it and know you can look things up.
If there is anything you'd like me to add, let me know.
From Dropbox:
dropbox.com/s/vp5ct1cwc03bl...
From Google Drive:
are you male or female
Approx how much do you weigh in kilo
112.mcg levothyroxine isn’t a high dose
Some people are on much higher dose
ALWAYS Test thyroid levels early morning, ideally around 9am and last dose levothyroxine 24 hours before test
Just testing TSH is completely inadequate
Essential to test TSH, Ft4 and Ft3 together
ESSENTIAL to test vitamin D, folate, ferritin and B12 at least once a year
What vitamin supplements are you currently taking
Probably a full iron panel test for anaemia too
Coeliac blood test as well
Just perhaps, the TSH test is being interfered with. People can have anti-animal (mouse, rabbit, sheep are most common) antibodies that interfere with the TSH test and give spuriously high values. A test by another method should be done.
Does this mean if I have had recent interaction with cats in close quarters, that could change the outcome of the tests? And forgive me for my ignorance, but what other methods for testing are there?
Modern TSH assays are made using usually a mouse-originated antibody for the measurement. So anti-mouse antibodies if they exist in your blood will interfere. However, we humans can have all sorts of anti-animal antibodies purely spontaneously and at random. Any of these causes trouble if present. Nothing really to do with outside influences but purely a random feature of blood types.
hi Diogenes. I have anti mouse antibody. It was discovered by accident when testing me for screening prior to a treatment regime for a non thyroid related condition. The treatment was then deemed not suitable when the antibody was discovered. A few years later when my TSH of 161 came up, it was retested because I told them about the anti mouse factor as it can throw up false positive or false negative results particularly with TSH testing, but my TSH came back the same. I've been told that modern blood culture assays are usually humanised but I sometimes mention it when I go for blood tests and I get some odd looks. It's nice to see it get a mention here as it's probably something that isn't considered often enough when checking TSH and could be throwing up odd results more than you'd think. Thanks for the extra info.
I am female. My weight is at about 147 lbs which I believe is around 67 kilos... This is heaviest I have ever been, I am petite and comfortable at 115-120 lbs. My job is sedentary and I spend a lit if time in front of a screen for the last 5 years. Prior to that I was very active. So I have been incorporating exercise into my work schedule. My diet hasn't changed drastically. The testing times and dosages may mean something as the lower TSH results came from early morning blood draws. I didn't know about the 24 hr wait. Nor the Ferritin and folate tests. I haven't tested Vit D, but was taking it at 5000 during winter months and had cut back for summer getting more outdoor sunshine. I'll need to get that tested too. My CDC panel is all normal now. I wondered about hormone balance. I'm taking a natural progesterone otc because I had experienced some extreme bleeding probably perimenopause, none of that now... But probably the cause of the anemia which brought me to this point of discovery. I thought the endocrinologist would be more interested in the interrelationship of all these issues but seems completely focused on the TSH and so it feels scary to see numbers like that. Ill get checked for Celiac, probably going gluten free anyway to see if I feel better. Thanks for the input.
This was supposed to be a response to SlowDragon.
As diogenes says high TSH could be false due to mouse 🐁 antibodies (or rabbit)
ncbi.nlm.nih.gov/pmc/articl...
academic.oup.com/clinchem/a...
heavy blood loss likely to result in low iron/ferritin
Come back with new post once you get vitamin results
As you have Hashimoto’s it’s ALWAYS worth trying strictly gluten free diet
I did once have a very high TSH of over 200. This was due to stopping my thyroid hormones for a few weeks - not to be recommended by the way. It's a long story as to why I did that but I was extremely ill and it took many months to recover.
Might you be taking a supplement with Biotin in it? That can skew thyroid blood tests.
Ah, yes! The endocrinologist did warn about biotin interference, and I had a multi product that was high so I stopped it several months ago. I will check everything again. If it is on the label. I just now looked up top foods for biotin and discovered that several are top on my list of regular eating, particularly sweet potatoes, peanuts, and some legumes. Oh and bananas. I don't know how high the amount has to be for it to be problematic. Any ideas of other foods or herbs that may be high in biotin?
I've never heard of anyone having to change their diet to have a thyroid blood test. Removing the biotin containing multi was a good idea though. Maybe it's just that you have a TSH that 'shouts'.
Just a little history lesson...
Before reliable thyroid function tests (TFTs) were invented people were treated based on their symptoms and some other factors, such as the level of total cholesterol. (High cholesterol is very often found in hypothyroid people.) They may have tested iodine as well, but I'm not positive about that.
Anyway, people ending up on 200mcg - 400mcg Levothyroxine per day or even more, or five or more grains of NDT per day was common. I'm sure I've read that hypothyroid patients are now dosed on about a quarter of what they used to get before TFTs started being used.
NDT = Natural Dessicated Thyroid
DTE = Dessicated Thyroid Extract
NDT and DTE both refer to the same treatment, but patients use NDT, doctors use DTE. I don't know why the difference arose.
The first ever treatment for hypothyroidism (developed in the 1890s) was ground up fresh thyroid tissue from sheep. Thankfully it was discovered quite quickly that it worked just as well if it was dried (i.e. dessicated) and made into tablets.
NDT or DTE as it was called was dispensed in grains which is an old-fashioned unit of weight measurement, and 1 grain equals something between 60 and 65 mcg. It was the main treatment for hypothyroidism until the 1970s (?) I think. That was when Levothyroxine gained ground, and without any testing on patients it got introduced and there have been problems between doctors and patients ever since. Some patients still take NDT and find it hugely preferable to Levo.
The End.
Thank you for this history! I am curious if the amount mcg of the NDT is equivalent to the same amount mcg of Levothyroxine. I would prefer natural, if effective.
Modern NDTs are sold in 60mg or 65mg tablets. I don't know which is most common.
Usually these have a standard conversion :
60mg NDT usually contains 38mcg T4 and 9mcg T3.
There are differences of opinion about how T3 compares in potency to T4.
Most patients would say T3 is 3 times as potent as T4, some would say that T3 is 4 times as potent as T4, a tiny number of patients would say that T3 is 5 times as potent as T4.
My personal opinion is that T3 is 3 times as potent as T4. So...
60mg NDT contains 38mcg T4 + 9mcg T3
which is equivalent to 38mcg T4 + (9 x 3)mcg T4
i.e. 60mg NDT is equivalent to 38mcg + 27 mcg = 65mcg Levo.
If T3 is 4 times as potent as T4 then 60mg NDT is equivalent to 74mcg Levo.
If T3 is 5 times as potent as T4 then 60mg NDT is equivalent to 83mcg Levo.
...
To make all this more annoying, manufacturers of NDT have been claiming for years that 60mcg or 65mcg NDT is equivalent to 100mcg Levo. Absolute nonsense, in my opinion!
...
This page is worth keeping a link to, although it is updated erratically.
stopthethyroidmadness.com/a...
My Vade Mecum document has a table of the (claimed) T4/T3 content of desiccated thyroid products!
(I think it contains all available "real" desiccated thyroid products - not glandulars.)
helvella - Vade Mecum for Thyroid
The term vade mecum means:
1. A referential book such as a handbook or manual.
2. A useful object, constantly carried on one’s person.
Please don't get put off by the number of pages!
Nor by the fact it is targeted at people interested in thyroid issues. Much of its contents could be of use to many involved in health issues. Things like abbreviations, lists, general reference information, an Appendix of links to many useful websites.
And do keep up to date. I edit it frequently- sometimes trivially, sometimes extensively. If your copy is more than a few weeks old, please download it again.
In particular, it is not intended that you sit and read the document. Just that you download it and know you can look things up.
If there is anything you'd like me to add, let me know.
From Dropbox:
dropbox.com/s/vp5ct1cwc03bl...
From Google Drive:
drive.google.com/file/d/1P9...
It's depressing how few NDT products there are left.
My Vade Mecum document has a table of the (claimed) T4/T3 content of desiccated thyroid products!
Could you tell me the page number, please. I can't find it.
I am wary of pages numbers because they change as I update documents!
There is a Table of Contents at the start - and you should be able to find Desiccated Thyroid Ratios there - and clicking on it should take you to the appropriate page.
Many PDF viewers allow you to see the Table of Contents as well as the pages (usually in a panel on the left side). Having that visible can help with navigation. Adobe Acrobat allows F4 to switch the panel on or off. Apple's Preview on macOS - use View -> Table of Contents.
Many PDF viewers allow you to search. Try Find or Search and look for Desiccated Thyroid Ratios (or just Desiccated). Often Ctrl + F or Command + F.
(There are so many PDF viewers, on Windows, macOS, Linux, Google's devices, Android, IOS, iPadOS, etc., it impossible to provide comprehensive advice!)
Desiccated Thyroid Ratios is probably somewhere around page 70.
Thank you.
I've just checked my bookmarks to be sure I was linking to the latest version - and I wasn't, but I am now.
I don't know what I was retrieving earlier but it had about 25 pages missing at the beginning.
I'm pretty much convinced that the use of the wording Natural Dessicated Thyroid (NDT) is very largely a matter of marketing and sales.
After all, there is not, there cannot be!, any non-natural desiccated thyroid!
However, I also find the term Desiccated Thyroid Extract unsatisfactory. The word extract conflicts with the many assertions that it is whole thyroid! (And we don't tend to see "natural insulin" but "porcine insulin" - or whatever.)
More sensibly, I think it is due to the physical preparation and defatting processes being considered, in total, as a process of extraction.
Had someone found that dunking thyroid tissue in a solvent had worked to extract the thyroid hormone (then either supplied as a liquid, or dried), that would have felt more of an extraction process!
I wonder how the huge difference in cost between Levo pills and Levo liquid is justified. And I think the simple answer is that it isn't. It's just another way of making mountains of cash.
hi. OICU. Yes to your Q about numbers. My TSH was 161 with no detectable T4 when tested last year. I'd become very ill, physically and mentally, during Covid and lockdown but for some reason Drs, via telephone, kept explaining away my symptoms without testing thyroid even though it was recorded that I had antibodies in 2014. I believe high numbers are unusual but they can happen. The numbers (and me) improved over several months but then you realise you're in for the long haul. There's so much to learn, and everyone is different.
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