This time last year, I was enjoying my best health for decades. This year, I have been going down hill since February, and am now feeling rotten again.
I have not changed any part of my lifestyle, diet, or brand of medication, so I am wondering if the Thiroid that I take has been 'changed' (as happened with Armour and ERFA), or if I have simply become resistant to it.
Through the summer, I felt a lot better when I halved my dose to 1 grain from 2, but I then got hypo symptoms including oedema. As it started getting cooler, I needed to return to 2 grains (to stay warm), but I am now feeling awful.
So two questions:
1 Has anybody else on Thiroid had a problem this year?
2 What can I change to next? Thyroid-S doesn't work for me, Armour and ERFA stopped working after they were 'changed', and I think that I read that Naturethroid and Westthroid have been 'changed' as well. I didn't do well on Liothyronine when I tried it before the NDT. Any suggestions please?
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I agree with Jazzw. A good first step would be a full set of thyroid tests so you can work out what is going on. Do you have hashis? That can make levels go up and down as your thyroid is slowly destroyed. If you do, maybe your thyroid is producing even less do you need to up the dose. Good luck. 😄
My endo ordered a 'full' set of tests, but despite doing stuff like B12, Ferretin, Folate, Testosterone, SSD and NAD, they only appear to have done TSH. I have received a hand written letter with the results, but no ranges! I almost give up on NHS treatment, but I will contact the hospital and ask for the ranges, and why they only did TSH. The TSH was 3.5 which is high considering that I am taking T3 but they have told me "everything is normal".
You can't assume it's the medication unless you've got recent t3 results that show your levels have dropped. In my case I was on nature throid and my t3 dropped from 5.4 to 3.5 in the space of 6 months on the same dose of meds so I knew that was the reason. I've switched to Thai thiroyd and my levels are on their way back up.
No, you can't assume anything in this game, but nothing else about me has changed, hence the query about the medication, given that twice before I have had a similar relapse after my NDT was changed.
NatChap makes a point that I know about in people on psych meds. Gradually or suddenly, a patient no longer responds to a particular medication, even after decades, and their psychiatrist has to start up the medication merry-go-round to find something to replace it. Becoming refractory to a medication, even a hormone we need everyday, happens. This resistance might be(or is likely) linked to a change in the pituitary or hypothalmus. The only known way to counter it is to keep increasing the dosage until symptoms resolve, as Dr. Jon Lowe did with himself and with his patients. Same for NDT dosing. Those of us who need high doses of thyroid and/or other hormones likely have a compromised Hypothalmic Pituitary Adrenal Axis(HPA). Actually, I do; part of the clinical aspect of bipolar illness. Dr. Neal Rouzier MD, addresses thyroid resistance and dosing in several videos on YouTube.
As I said, increasing the dose of Thiroid is making me feel awful, even though the blood test results are better. But I am sure that you are correct - any drug taken over a long time will become less effective, and may need the dose increasing, or being replaced with something similar. In my case, I don't know what to try as an alternative to the Thiroid.
It sounds like your levels are dropping if the TSH is rising, but I still think you cannot know what is happening until you have a full set of thyroid results. Until then it’s a stab in the dark as there may be multiple reasons why you feel unwell. I understand your frustration with the NHS. Sometimes it feels like we have to keep battling away despite the fact our energy supplies are depleted. It’s not a fair fight.
I don't know if what you're experiencing represents something positive, like a healing crisis, or something negative. Your body might need the higher dose but it also might be going through an adjustment to that new dose and the discomfort is part of it. I'm only speculating. It's not a given that a drug taken over years or decades will become less effective, but there are people in whom that happens, such as myself.
My primary and urologist, who prescribes my testosterone,along with my psychiatrist, believe that HPA dysfunction is a major reason why my hormones are in disarray. I've written,here, that for 11 or 12 years, Cytomel worked beautifully. Then, it seemed to stop working and my endo at the time told me not to take more than 75 mcg, daily. That was in 2005. My testosterone was also low and he told me it was normal. I didn't know what I know, now, so I just went along with what he said. 2005 was the beginning of a long, slow decline and I believe it was the fault of the endo, but it was managed care, which I got under my wife's health plan. I didn't have money to shop for a doctor. I'm 68 and I'm working every day, with the help of good doctors, to regain some of what I lost.
Let's hope it is nothing to do with being 68 as that is my age too. LOL I will have to wait until I can get the full results, and also find out if they did FT3 etc, or if I need another test.
They actually called me into the hospital in September for these tests. I went in and was told to go to the Phlebotomy department. The lady who was to take my blood had no information about me, or what was required, so I told her all the tests that I should have done, and she took three vials of blood, and off I went. When I phoned for the results, all they had done was a TSH test. When I went in this time, again, no record of an appointment, but the nurse on reception contacted somebody, and got all the details. On the piece of paper that the endo gave me, it says TFT, which I presume is full thyroid function. No wonder they are short of money.
It's a travesty that the NHS cannot provide excellent outpatient care. From what I've read, they do a great job in critical care medicine(heart attacks, cancer, injuries). If true, that's to their credit but, as with Medicare here in the US, the NHS is also a punching bag for politicians who publicly proclaim their support for it, while reducing services or restricting access to certain services. At least here in the US, decisions are made between the physician and patient without interference from any regulatory body. For me, the worst case scenario is that I'd have to pay cash if a doctor takes no insurance. I'm prepared to do that, though I get a paltry amount from Social Security retirement.
Hoping you get the full thyroid panel, or at least what the endo considers a 'full' panel. It shouldn't have to be so damn difficult to obtain proper tests. Maybe the only doctors who understand are those similarly afflicted or who have a spouse or family member dealing with the same medical problem. Just realize how strong we all are, dealing with a condition that leaves us physically exhausted and emotionally unwell, as we continue to navigate the medical system to find answers and get optimal treatment.
If you can get private blood test from blue horizon or medichecks via thyroid UK website then you can see what is going on. You don't adjust by a full grain at a time do you? It may be I misunderstood lol, not unusual, but should e by 1/4 or 1/2 a grain at a time. I adjust by a quarter and it can make a big difference. Plus I went 7 months on 2 1/4 NDT great then suddenly over medicated, had to drop to 1 1/2 to get in range then 3months later way under medicated up to 1 3/4 and up and down I go... On 2 at the moment. I do not have Hashimotos, or at least anti bodies always under range so no idea why it keeps happening???🤨
No, I am careful to adjust in small amounts like you do. In one way, it is a pity that we cannot test ourselves at home like diabetics do, and know what our levels are on a daily or weekly, (or even monthly would help) basis.
I’m currently self medicating on T3 only, and I’m struggling to implement an increase, it’s making me feel worse.
I don’t feel well on my current dosage, either, so I know I need a further increase, but my body keeps rejecting it.
I’m in the process of having cortisol blood test and recently had a saliva cortisol test, this has highlighted an issue with my cortisol levels and adrenals.
Having looked further into this until I sort my cortisol levels out my thyroid medication will not help.
Through the summer, I felt a lot better when I halved my dose to 1 grain from 2, but I then got hypo symptoms including oedema. As it started getting cooler, I needed to return to 2 grains (to stay warm), but I am now feeling awful.
The changes you are making to your dose are being done in increments which are too big. If you were okay on 2 grains before summer then started going downhill, any increase or decrease should have been done at no more than 1/4 grain increments.
Changing dose a whole grain at a time suggests that you are missing your sweet spot. And before making such changes it would be good if you could get TSH, Free T4 and Free T3 measured with a finger-prick test.
If you already know you have autoimmune thyroid disease i.e. Hashimoto's Thyroiditis, then there is no benefit (other than intellectual curiosity) in paying to get antibodies measured repeatedly.
....hi i think a comment way back may be useful, that its a multi thing meaning are adtenals as solid as can be, GUT health being the biggy and diet, exercise
This time last week was in dyer place and fine today, i had an accupuncture ( she said channels blocked etc ) Did feel better after too some degree then did a good walk at weekend bla bla but just saying its the whole thing,
Really disappointing I know when things go to pot is metavive ant use as its here in Uk ?
Yes, for sure the endocrine system is far more than just the thyroid, and there are many factors involved. I had my best spell for decades last year after I started taking Water Kefir, and other pro-biotics. The problem , as most of know by ow, is that conventional doctors look at everything in isolation. And I am tired of being the one to educated doctors and specialists who know far less than many of the posters here.
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not doing as great as expected on Erfa
A bit of exercise has set off symptoms again!!
Changed from Erfa to Armour now getting headaches
NTD dose advice please 
Has Thyroid-S changed - feel unwell again?
