I have been hypothyroid since I was 20 years old and was on Armour for over 50 years. I am 75 now and was switched to generic Synthroid a little over a year ago for insurance reasons. But even before the switch, I was having mysterious episodes of nausea, body aches and fatigue lasting 3-5 days at a time. I have had a complete gastro workup, including bloodwork, an endoscopy, and a CT scan but there is no diagnosis. I had some relief after being put on 40 mg a day of esomeprazole in December but now the malaise has returned. Meanwhile, my endocrinologist cannot get my levothyroxine dose synced with my THS. I am on 100 mcg now, having been lowered from 112, having been lowered 3 more times in the last year. She is only testing the free T4 and TSH. Since I was lowered to 100 mcg, my TSH went from .31 in January to .065 (range is .55-4.78). So my pituitary gland is obviously not responding to the lower dose. My free T4 has not come back yet from the last test but on all previous tests, it was in the right range. (1.3 in January and 1.5 last July). Researching hypopituitarism, I am finding that it could be the answer to both problems, and wonder if anyone else has had this issue. My other symptoms are night sweats, feeling too hot and then too cold within 60 seconds, fatigue, memory loss, depression, dry skin, tired all the time despite sleeping 10 hours a night and occasional daytime naps, nausea, no appetite, losing weight, and both constipation and diarrhea. My doctor has refused to order a full thyroid panel, saying it was not necessary. I have a teleconference with her in a few days and have sent her a message also asking her to order a cortisal test to try to see if my pituitary is the problem and determine if my adrenal glands are okay. I do not know what her response will be but I feel miserable and this is getting worse.
TSH going down instead of up with lowering of l... - Thyroid UK
TSH going down instead of up with lowering of levothyroxine
Hello Earthur and welcome to the forum :
I think your first step back to some sort of wellness is to reinstate the Armour.
How much Armour were you taking and how much T4 were you put on and understand you are now on just 100 mcg T4 now - is that right ?
For 20 odd years your body has been supported with full spectrum thyroid hormone replacement, namely trace elements of T1. T2 and calcitonin + a measure of T3 + a measure of T4 in each grain - quite how your doctor thinks you will respond to switching to just T4 which is inert is beyond my understanding.
The TSH is the least important of all the blood tests once on any form of thyroid hormone replacement and you should be dosed and monitored on your T3 and T4 levels and when on T4 only we generally feel at our best when both T3 and T4 are up in the top quadrant on the range at around a 1/4 ratio T3/T4.
No thyroid hormone replacement works well until ferritin, folate, B12 and vitamin D are a optimal levels and conversion of T4 into T3 can also be compromised by any physiological stress ( emotional or physical ) inflammation, dieting, depression and ageing.
I can't say much more, as we need the appropriate blood test s run to include the vitamins and minerals so we can see more clearly from the results and ranges what's going on.
Hello Pennyannie, I was last on 120 mg Armour. It had gone up over the years of course. My GP used the same conversion chart you can find online ( npthyroid.com/wp-content/up... and started me at a somewhat lower point, 175 mcg. She lowered it progressively over 2021 because TSH was still too low, then referred me to a endo specialist who took over in January of this year and lowered it again from 112 to 100 because TSH was too low. TSH is still "too low" and I have an appointment with her in 3 days. TSH has never been in the range throughout this transition period and just went lower after the last reduction in levo. I have asked the endo to please order a complete thyroid panel but she said it was not necessary. I am going to ask her again and will leave her care if she refuses and go looking for someone willing to dig deeper into the problem and not just skim along on the "this works for most people" excuse.
The TSH was originally introduced as a diagnostic tool to help identify a patient suffering with hypothyroid.
Once on any form of thyroid hormone replacement the TSH is not a reliable measure of anything and you need to be dosed and monitored on your T3 and T4 levels.
So, yes of course your dose on NDT will have changed throughout those 20 years but it is said that 1 grain equates to around 100 mcg T4 - so 200 T4 might have been a sensible starting point.
BUT your body has become used to receiving the " Rolls Royce " of thyroid hormone treatments and is in shock as it's as though you have switched from 5 star to 1 star :
2 grains is trace elements of T1. T2 and calcitonin plus a measure of T3 at around 18 mcg plus a measure of T4 at around 76 mcg :
If your medication has priced itself out of the equation for our insurance company could you at least suggest replacing with a T3 / T4 combo ?
Alternatively source your own Natural Desiccated Thyroid :
Thank you. Yes, I do anticipate she may want to add T3 to my levo but really want further workup than that. I just ordered a tests for Vitamin D, Ferritin, B12, and folate, blood draw tomorrow. I also ordered a complete kidney function test, perhaps unrelated to my thyroid issues, but after 8 days of misery following a Reclast infusion last month, a CBC taken during the episode showed a reduction in kidney function and I want to see if it has returned to normal. Sad that my own GP did not suggest it but I am willing to be a "difficult patient" if that is what it takes to be healthy.
Did you get my PM last night ?
I am still getting used to this website but did find it this morning, and thank you. I may just have to "go rogue" if my doctor cannot help me.
Ditto ;
You should get a e.mail when anyone writes to you - with either the alert or chat icons lighting up
However - there are sometimes glitches but 1 of the 2 should always be working.
Hi Earthur,I’ve found synthetic hormone problematic and noticed it produced paradoxical results— more was worse and my FT4 went lower.
I had weird surges from a brain injury and I only determined it was the brain gobbling up energy and leaving me depleted after Neurofeedback stopped it in one treatment. There are a lot of causes that nobody understands. Sadly.
I’m seeing a new endocrinologist at a major teaching hospital in California and my recently-minted doctor is including parathyroid hormones in the full thyroid panel.
Some hypothyroidism, she explained, is caused by pituitary problems and warrants other tests you will find commonly mentioned here. You could ask about other endocrine tests. I found the cortisol problematic. Due to the cycling and tests not capturing a complete picture.
For insurance purposes I should be taking synthetic hormone as well. I’m sticking with what works and shopping around for deals on NDT. NP Thyroid is cheaper than Armour.
Doctors can be hardheaded.
Good luck 🍀
Thank you for that feedback. I did have my parathyroid checked last July and it was normal. I asked to be put back on Armour but my endo refused, saying the amounts of T3, and T4 varied in the pills and it was not reliable. And I have to admit, I had these nausea episodes happening the last few years I was on 120 mcg of Armour, and that is my main complaint. I appreciate your remark on cortisol testing but will look further into how that could be more reliably tested.
Earthur,
You may be on to something with the pituitary but you need someone who will listen.
You may be able to find someone who does Integrative Medicine or Functional Medicine who is more apt to listen. Typically the doctor has 15 minutes to spend and needs to type into the electronic medical records system at the same time. They're looking for quick answers.
Greygoose nailed it. Ditch the doctor -- unless you're 100 miles outside Tucumcari and there's only one doctor in town. There are doctors out there who know a thing or two.
Good luck again
Lord there are some ignorant, unintelligent, illogical doctors out there! Why on earth does she want to 'sync' your levo dose with your TSH? What would be the point of that? Does she know absolutely nothing about T3? Both hormones count towards TSH levels, not just the T4. And, in any case, it absolutely does not matter if your TSH doesn't 'sync' with the T4. The most important number is the FT3. Honestly, I despair at times.
Also, she should be aware that after 50 years on NDT, your HPT axis will be down-graded and your TSH will probably never rise, even if you came off thyroid hormone completely. This woman is going to make you very ill, so your best bet would be to find another doctor. She has no idea what she's doing.
As to your gut problems, you more than likely have low stomach acid - most hypos do - so a PPI is just going to make things worse. You need to raise your stomach acid, not lower it even further.
Your good self and others on here are so knowledgeable - still waiting for someone/entity [with Dr Skinner long seen off] to expose what's being done - any ideas, before more people are doomed to an almost non-life?
My thyroid is so-so... but what delays and worse have thrown out of it all has taken its toll. Worse still, there are so many others way worse off. Hoping someone, somewhere will... xox
Likely to have low vitamin levels now …..
Essential to regularly retest vitamin D, folate, ferritin and B12
What vitamin supplements are you currently taking
Night sweats often low B12
Have you had coeliac blood test done or are you already on gluten free diet
I take 15,000 units daily of Methyl Cobalamin B12. I am going to return to a Vit. D supplement. My Dr. told me to use calcium citrate with D but the pills are so big, I confess I do not take them faithfully. Have not had Celiac test but at 75 it would be hard to believe I just became gluten sensitive. Getting blood draw tomorrow for a private D, B12, folate and ferritin test. Thank you for the suggestions.
I think greygoose has summed it up nicely- and other input is valuable- far more so than your idiot doc chasing TSH results 🙄
Hi Earthur, I had a total thyroidectomy at the age of 11 and am now 67. After the op I was put on 0.2 mg thyroxine daily, referred to as grains. In micrograms equal to 200 mcg ? My frequent bl;ood tests at that time were always based on the PBI blood test. (protein-bound iodine test) All was fine and dandy and I begain to grow again, was happy, healthy, very active and no qualms about having no thyroid. Come 1996, I am told to reduce my dose down to 150 mcg and in a nutshell I feel like Ive been on a slow steady decline ever since, I am on 100 mcg now but really am told by docs it should be reduced to 75 mcg........Apart from one doctor, after doing bloods when I was in A+E recently who said he felt my dose was too low. but he was immediately overridden by another doctor who said it was fine. So by the time we get to 2008, the zombie like fatigue had crept in and as you say, not relieved by sleep, nausea, lightheadedness, pains, in fact all sorts of weird things I never experienced before, feeling low, losing interest, you name it. I researched the cortisol issue (GP was reluctant to order the blood test though) but indeed it was found to be low with a 'mild' ACTH deficiency. My blood cortisol tests have remained in the lower end, at recent one done at 8 am was only 333... I have wondered, and asked many doctors, many times if this is all related to the low thyroxine dose. I just want to feel well and like my old self. So I wish you luck with your teleconference and hope you get some resolution.
Does your doctor then refuse to treat you for the low ACTH? What is his or her explanation?
No it then meant I had a synacthen test after that initial low blood test, and Ive had quite a few synacthens since. This, though, then shows the level of response to be acceptable and replacement cortisone not required. The ITT test was suggested to give a definite answer but at my age I was loathe to undergo a potentially dangerous test. I never really get a straightforward answer as to why I need to be on such a low dose of thyroxine, apart from the blood tests 'say so'. Im on my 3rd opinion with Endocrinologists! I am in the UK. Ive taken reams of info from the websites to the GP in the past, but time dosent allow for in depth probing. If nothing else, its interesting to read how many people are struggling with unresolved endo issues.
I think you must be in the US but still, have a look at UK's Dr Sarah Myhill's website for info on glandulars. Also, Janie Bowthorp's book, 'Stop the thyroid madness' might be useful for you too. I'm exactly in the same boat as you and have just ordered a glandular that supports the adrenals which tend to bottom out, not supporting the thyroid. But you're spot on re cortisol - a 24 hour test necessary.
To update my post, my vitamin D, folate, ferritin and B12 were all normal. In fact B12 was so high it was almost double the high normal so I have cut back on that supplement. My meeting with my endo ended up with her refusing to order a full thyroid panel because it was not "clinically indicated", but did agree to test my cortisol (serum test), and switched me back to Armour, but lowered my dose to 60 mg, retest in 6 weeks. (Before the switch to levo, my Armour dose was 120 mg and TSH was normal). I have consistently had almost fully suppressed TSH levels since the switch to levo in December 2020 no matter how low the levo dose was . My self-ordered CMP, CBP and kidney and liver tests were all normal. I just had an abdominal ultrasound to try to find the cause of the nausea, and that was normal. None of the gastro tests I have had in the last year (endoscopy, CT scan, colonoscopy) had any result that would explain the nausea and my gastro wants my thyroid levels to come to normal before she continues to conduct further tests. I agree with this. I have found I can self-order a complete thyroid panel and have the blood draw taken locally so may do that to further throw light on this. So I am hoping to start to feel better on the Armour and want to thank all of you again for your help on this journey!
So to update my thread here, my TSH, T3 and free T4 were tested at the end of the 6 weeks on 60 mg Armour and here they are: TSH-.429 (.55-4.78); free T4- .7 (.8-1.8; T3-117 (60-170). So I thought she would be happy with this and leave me on the 60 mg, but no, TSH is still "too low" so she dropped me down to 30 mg. She first asked me if I was ready to go back to Levo but I said no, this was the first time I felt well in a year and a half. But will this drop not also drop my T3 and free T4? It would be a miracle if after being on Armour for 50 years my thyroid gland started functioning again, wouldn't it? My T3 on the 60 mg was 51% into the range and I felt good! I did get a cortisol test too but it was normal. I need to find another endocrinologist I guess. (sigh)
Your TSH of 0.429 [0.55-4.78] is not low enough to concern anyone , if you feel well. It's only just below range by a very small amount , it's not 'supressed'.
This study doesn't directly apply to you because it's from people taking levo , but i believe it's still relevant academic.oup.com/jcem/artic...
It's a very large / very long term study of patients on levo , and found that there were NO increased 'risks' when TSH was between 0.04 to 0.4 than there were when TSH was 'in -range'.
The 'risks' increased quite sharply when TSH was below 0.04 .... but your TSH at 0.429 is a long way above that.
please see my reply to this post (3rd reply down) healthunlocked.com/thyroidu... ...
.... for links to that study and other discussions on the subject of Low TSH / 'risks' / quality of life .
Halving your NDT to 30mcg when you feel well on 60mcg , (and your fT4 is already so low) will most likely mean you don't continue to feel well for long .
If you feel well , don't rock the boat just because your TSH is very slightly below range.
Show that study to your endo and ask them to read it carefully .... and then ask them to explain why they think your slightly below range TSH of 0.429 is such a 'risk' that it's worth risking your current well being by lowering your dose, just to raise your TSH .
Thank you tattybogle, your reply gave me the courage to message my Dr. and attach a link to the study you gave me. I reminded her of the numbers, told her I was now feeling worse than I was on the 60 mg, and that I wanted to go back to 60. (It has been 3 weeks since I was dropped to 30 and I am feeling tired and "out of it"). I still want to find another endo, I just need to figure out how that works with my insurance company when I was referred to her by my GP in the first place. So thanks again.
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