I haven’t posted for years because things had been as stable as they could be for someone with ME, but in the last year my TSH has gone from suppressed on T3 only therapy to high ‘normal’ to just over ‘normal’ to my latest blood of TSH 7.86.
Sorry this is a long post I am a complicated case. history: diagnosed hypo in 1994 by 2010 was on 150mcg levo and 20mph of T3 via a supportive GP. In 2011 following my fourth major abdominal gynae surgery I hit a brick wall and a myriad of other symptoms started and I was diagnosed with ME/CFS six months later.
Between 2011 and 2015 I explored every possible treatment, nutrition, herbs, alternative medicine (you name it I’ve applied it including LDN, cortisone etc) etc in an attempt to recover from being bed ridden. By the end of 2015 I had tried NDT and with low cortisol had transfered to T3 only with the support of Paul Robinson. It did not ‘cure’ me but it seemed to suit me best out of all the hypo approaches. At the highest I took 80 mcg and worked on my low cortisol with Paul’s method of taking a dose of T3 in the early hours to support cortisol production.
Eventually, I got an endo onboard and they prescribed T3 for me, but warned me that a suppressed TSH with T3 was ‘believed’ to cause atrial fibrillation. But my TSH had been suppressed or on 0.01 for a decade or so with my levo T3 combination.
Since then I addressed other issues which were contributing toward my ME such as mould and other pathogens and i slowly dropped many symptoms, suffering has been lowered, but am still very limited and no where near leading a normal life. I started to get short episodes of Atrial fibrilliation about 18 months after starting t3 only, but I was never convinced it was cause by the T3 but more associated with when I had pushed myself too far or was particularly stressed.
however, unnerved I reduced my dose and my TSH came up slightly, I’ve been on or around 50 to 55 mcg since about 2018 and my tsh was always under 0.10. I continue to have episodes of atrial fibrillation, maybe 3 or 4 a year.
since 2022 my tsh quite suddenly went to 4.27. Then in 2023 4.87 despite me adding 5 mcg of t3.
then my most recent test has come back 7.87. It has never been this high since I was first diagnosed and it was 17.7, not even when I was on t4 only in the 1990s.
i also did a cortisol test before xmas and for the first time since getting M.E all four of my samples were on the high end of normal.
Whenever I’ve tried to reintroduce some t4 it just doesn’t suit me.
obviously I need to increase my t3, and talk to my endo (although I’ve always seemed to know more than him about my condition surprise surprise) but I just wondered if any super experienced people here had any idea about what is going on and if there is anything else I can do. Unfortunately our local lab no longer provides free t3 or t4 measures anymore, not even when the endo requests, so i can’t see what is going on there.
anyone got any ideas? Thank you.
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Thank s for your reply, my t3 is split into 3 doses anyway, and my bloods are always in the morning and I don’t take my early morning dose when testing.
I wish there was some way of doing an at home thyroid test like a covid lateral flow, it seems to me you really need to know a few days in a row what is going on and how changes in t3 dose are being metabolised. I’m not sure what a free t3 will really tell me about why my tsh has gone up. What is your thinking behind vitamins? I know but D can impact and I’ve previously self injected B12, but what else could impact tsh?
Until you stop trying to adjust your TSH and relegate FT3 and FT4 to the sidelines you will get nowhere I'm afraid
Normally we need a full thyroid test to include TSH, FT4, FT3, vit D, vit B12, folate, ferritin and thyroid antibodies TPO and Tg.
SlowDragon has already given you links to private home tests which most of us use
However....on T3-only testing becomes less important than symptoms....we need to learn to listen to our body and to identify over or under medication
How do you feel?
I need high dose T3-only to function because I have the Dio2 polymorphism/ homozygous which impairs T4 to T3 conversion and I later discovered that I have a form of Thyroid Hormone Resistance. It's all in my bio
I’m not sure what a free t3 will really tell me about why my tsh has gone up.
It will tell you a lot!
I will explain as briefly as I can
T3 is one of the most important hormones in the body and for good health the millions of cells in the body must be flooded with it by way of an adequate and constant supply.
T3 first needs to be transported to the cells from the serum, it must enter the cells, reach the nuclei and attach to the cell's T3 receptors before it becomes active. Once active it gets on with it's job of keeping the body healthy in numerous ways.
Low cellular T3 = poor health
TSH testing was devised to diagnose hypothyroidism by measuring the amount of thyroid hormone in the serum - a high level diagnoses hypothyroidism - but it measures T4 and T3 together as a single reading. It does not distinguish between them or show individual levels so provides little useful information.
Despite this, medics remain fixated on TSH despite the fact that it fluctuates during the day making it difficult to obtain steady/accurate results.
Once medication is initiated TSH is not a reliable marker and relying on it is leaving many patients unwell
It sounds as if your endo is clueless if you "always seemed to know more than him about my condition".
Many of us have been there!
You are very possibly undermedicated and as your hormone levels fall your TSH rises in response.....it is then trying to signal the thyroid to produce more hormone
You may find it difficult to persuade your endo to increase your dose if he persists in adhering to outdated information
Eventually, I got an endo onboard and they prescribed T3 for me, but warned me that a suppressed TSH with T3 was ‘believed’ to cause atrial fibrillation.
Conclusion: For patients taking long-term liothyronine we did not identify any additional risk of atrial fibrillation, cardiovascular disease or fractures. There was an increased incident use of antipsychotic medication during follow-up.
I've ranted enough now but hopefully you find something in the appended links that help you move forward
thanks for your response. As I have had ME for 13 years it is pretty difficult for me to just listen to my body. How do I feel? I feel like someone who has to go back to bed every 2 hours for a variety of reasons. I have felt even iller, more symptoms in the past when the NHS test did include FT3 as standard for a suppressed TSH and my FT3 a was optimal at the top of the range. I am not using tsh to adjust my medication, I have historically used how I feel, however I have not felt what was once ‘normal’ for 13 years, and can only evaluate everything relative to how much I once suffered with over 20 symptoms in comparison to how restricted my life still is in terms of function ability today.
I don’t want to be reactive but I didn’t get on to T3 only therapy without knowing the inherent problems with tsh, the history of the ‘normal’ range etc. As you will be aware to get T3 mono therapy out of the NHS is quite a feat in itself but I can’t control the fact the NHS refuse to test for anything but TSH, directly ignoring my endo’s request, and obviously I am not just going to ignore the fact that whether TSH a is a flawed evaluation of function or not, if my dose hasn’t changed but my TSH has gone up from significantly below 1.0 to nearly 8, something is changing or has changed in my body. FT3 only tells me what is in my blood at that moment in time, it doesn’t tell me how it will be an hour later or earlier nor how much is locking into the receptors. FT4 is a pretty meaningless value when on T3 only, even when they tested for it the lab would get jumpy because FT4 was on the floor. Well it would be wouldn’t it, with a surpressed TSH and only T3 being administered, where did they think I was going to get it from?
I stick to my guns, i don’t think FT3 will tell me anything too helpful unless it shows my levels are on the floor, and even then I would be left wondering why, what has changed from a few years ago?
i understand vitamin testing is useful in case my levels are not optimal, but i was interested to ask precisely how that might be causing my TSH to be demanding more hormone from my thyroid gland?
I can at least get the vitamin test out of the NHS, and I will ask my endo to request FT4 FT3 and my antibodies before I pay for private tests. Being unable to work for 13 years doesn’t leave much for private tests once you’ve spent your savings on trying to recover.
I am very grateful for THYROID UK and anyone who takes the time to comment on other peoples posts, but there is a tendency for the community to think that ME is just badly treated or untreated hypothyroidism, if only….
My menopause is completed many years ago, i went through menopause early as one of my many operations was an emergency hysterectomy, and o went into menopause several years after that and I’m now nearly 57. I had a relatively easy menopause.
If your adrenals are struggling due to thyroid hormones being low this could also mean another reduction in sex hormones... quite easy to check levels... randoxhealth.com/en-GB/at-h...
Just an ‘out there’ thought, but have you had Covid in the weeks/ months leading up to this test. I ask because when I had Covid both times, it seriously messed with my thyroid & GI stuff and I had to modify my levo for months before it settled back down.
Other than that, I’ll leave to those a lot more knowledgable than me.
Thank you, oh that’s interesting. Did you find you needed more or less levo? I did have covid for the first time last September, but it wouldn’t explain why my tsh started going up a few years previously. I never got covid until last September, being housebound etc helped with that and my daughter was home educated. She brought the september dose home from college. Interesting all the same.
Hi, as someone else with ME/Cfs I am predominantly housebound but caught from hubby x 2 times. Each time I had to reduce dose or miss altogether. I had hyper swings most days when I took normal dose for few weeks and then periodically for a few months …it was weird.
How did you identify your hyper swings? Before getting ME my predominant hypo symptoms would be weight gain, dry skin and hair falling out. I didn’t even get tired when I was first hypo but undiagnosed. My symptoms with ME were wide ranging and complex, now I have far fewer of them, but I still find it impossible to differentiate when I am hypo or just having a kick back of ME.
From what I can remember. Fast heart, jittery and very restless, felt vey unwell all within a short time of taking it. I take my levo at 11pm so it seemed more pronounced , if I took it in the day I may have passed it off as something else…like doing something. My ME symptoms are nothing like they used to be either, probably down to the fact that I pace quite well & don’t do much so I’m not in a constant boom/ bust cycle of PEM.
Deciding which is PEM & hypo can be difficult, mostly though the vomiting lets me know it’s PEM. The cellular level fatigue could be either though
Thanks, my heart rate only goes above 60 when I am experiencing POTs and it goes pretty tachycardic then, as does it when atrial fibrillation kicks in. I have worked my way through many approaches and each has taken me forwards a little, apart from the ones which made me worse (homeopathy, herbs) but yes the foundation is keeping within the energy window whilst also challenging it a tiny bit when able. I used to feel very grim and nauseous all of the time, but I think addressing pathogens really helped with that. I worked out that lots of my symptoms were like the ones I experienced when I had septaecemia and the IV antibiotic treatments, and that this is because the body is desperately trying to clear the infection or the dead stuff the antibiotics have scoured out of the body. I should think this is why chemo makes people feel so ill, it is the relentless detoxing of the toxins.
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TSH Rising with increased dose of Levothyroxine?!
How can TSH rise and T3 stay the same.
T4 low, TSH rising, T3 fluctuates
