Hi folks. I’m following up on my original post from a couple of weeks ago, now with some blood results, tests done as advised. Would you please give me your thoughts?
TSH 0.03 (range 0.27 to 4.2)
Free T3 4.8 (3.1 to 6.8)
Free T4 16.5 (12 to 22)
Thyroglobulin 13.8 (0 to 115)
Thyroid peroxidase <9 (0 to 34)
I’m currently taking 125mcg of Levothyroxine four days a week (Friday through Monday) and 100mcg the other three days. I take this early in the morning, normally around 6am, away from food, coffee or supplements. I also take 10mcg of Liothyronine split 5mcg around 8am and 5mcg at 4pm.
I was taking multivitamins till a couple of weeks ago and the advice here. I still take Omega oil and vitamin C
Basically, I was diagnosed 5 years ago. I’d felt exhausted for years through my late 40s and into my 50s (I’m 63 now) but my NHS gp fobbed me off constantly, so in the end I found a private endo who diagnosed both hypothyroidism and chronic fatigue. But even taking meds, I’ve never felt quite right. Some of my original symptoms are better. Eg constant coldness, anxiety and constipation But I tire very easily and cannot exercise in any way. I gave up work a couple of years ago because I just didn’t have it in me to do it any more especially as my job needs a lot of mental work and I have a lot of brain fog. In the first two years of taking meds, I gained 10kg. I did Slimming World last year and lost nothing. I recently did 12 weeks on ZOE, which I loved and did lose 2kg but that seems like nothing compared with what other people are losing on ZOE.
I’ve no idea where to go with any of this. I did get an appointment with another endo during the pandemic to ask for a second opinion. She looked at my original test results ( TSH just over range; FT4 just under; no antibodies: and my results over time showing about the same numbers - TSH supressed; FT3/4 midrange - regardless of whether I was taking 50mcg of Levothyroxine or my current combination/dosage), said she thought I should never have been diagnosed and told me to come off meds, which seemed ridiculous to me But, still…
Open to your suggestions.
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Your FT3 is still quite low, which would account for your continuing symptoms. If it were me, I would want an increase in T3.
Also, I cannot imagine why you're not on 125 mcg levo every day because your FT4 is not quite mid-range. Maybe putting it up to 125 daily would give you a bump up in T3.
I only stopped taking the multivitamin two weeks or so ago (when you first suggested it 😊)
That’s interesting about the range thing. And it seems, like greygoose also suggested, an increase might be help. I’ve certainly got nothing to lose in trying.
Okay, I’ll get a vit D test now and refer back. Everything is due to be tested again in 6-8 weeks so that’s perfect.
I’m currently on Teva Levothyroxine and SigmaPharm Liothyronine.
I’m not autoimmune. In my last post you suggested maybe getting a thyroid scan. Do you still think that? What would it tell me?
Request coeliac blood test BEFORE considering trial on strictly gluten free diet
Try to always get same brand levothyroxine at each prescription
Teva brand upsets many people
Most easily available (and often most easily tolerated) are Mercury Pharma or Accord
Mercury Pharma make 25mcg, 50mcg and 100mcg tablets
Mercury Pharma also boxed as Eltroxin. Both often listed by company name on pharmacy database - Advanz
Accord only make 50mcg and 100mcg tablets. Accord is also boxed as Almus via Boots,
Wockhardt is very well tolerated, but only available in 25mcg tablets. Some people remain on Wockhardt, taking their daily dose as a number of tablets
Lactose free brands - currently Teva or Vencamil only
Teva makes 25mcg, 50mcg, 75mcg and 100mcg
Many patients do NOT get on well with Teva brand of Levothyroxine.
Teva is lactose free.But Teva contains mannitol as a filler instead of lactose, which seems to be possible cause of problems. Mannitol seems to upset many people, it changes gut biome
But for some people (usually if lactose intolerant, Teva is by far the best option)
Aristo (currently 100mcg only) is lactose free and mannitol free.
If a patient reports persistent symptoms when switching between different levothyroxine tablet formulations, consider consistently prescribing a specific product known to be well tolerated by the patient.
Physicians should: 1) alert patients that preparations may be switched at the pharmacy; 2) encourage patients to ask to remain on the same preparation at every pharmacy refill; and 3) make sure patients understand the need to have their TSH retested and the potential for dosing readjusted every time their LT4 preparation is switched (18).
That is all super useful again. Especially the Paul Robinson and Tania Smith articles. I’d no idea of any of that. On the contrary, I’ve been told I’m “lucky” as I have neither the thyroglobulin nor thyroid peroxidase antibodies. So I’m going to check out where to get a scan and put that on my to-do list for the coming weeks.
Interestingly, I have AAIT. Early on I was full of energy always on the go, hardly sleeping, as thin as a pin. I think I must have been hyperthyroid, but just thought I was a high energy person. I’d get sudden bouts of exhaustion then go back to feeling full of energy. Id find scenery so beautiful I’d be reduced to tears like a sort of hyper sensory overload. Over time the hypo phases became more prevalent and at the end I was in a dreadful state with sudden huge burts of energy where I would go bonkers I’d shout at silly things then feel bad and cry then feel ok and think that was odd and off it would go again , then I’d feel utterly exhausted with a mind like a glacier it was like complete mental chaos. I finally got a diagnosis after determining I was not moving out of the consulting room until I got a thyroid function test. At first they thought I had hyperthyroidism but a test just a few week later showed very overt hypo so I was yo-yoing between the two states hence all the dreadful symptoms (there were shed loads more than I’ve mentioned here) I got a tiny dose of Levo but it was enough to save my life because an ultrasound showed I had no functioning thyroid left just a fibrosed tiny crisp of a thing this was about three months after diagnosis which was of AAIT to the endos credit. I was lucky to pull through. If any of that sounds vaguely familiar to you I’d suspect it for sure. The ultrasound would be very helpful in determining what’s going on - again I demanded mine because of two close family members having primary non Hodkins lymphoma of the thyroid which is very rare, and highly unlikely to occur randomly in two close relatives. Otherwise I’d never have known mine was totally atrophied and I didn’t have cancer in it. It explains why I didn’t ever have a goitre as well.
I found going gluten free helpful, Levothyroxine never made me feel well but NDT has been a huge help.
this is the only private blood test I can find for relevant antibodies you can get with AAIT, from medichecks. It has to be a venous draw.
Thanks for sharing all this. Have you had a medical diagnosis of AAIT, or has this been something you’ve figured out yourself? Sounds like most likely a bit of both!
I used to live full-on but have times where I’d become exhausted and need to sleep for a few days before returning to top gear. I was not skinny, but I was a healthy weight, maintained with not much problem and I enjoyed going to the gym or to classes. Besides gradually becoming less and less able to keep going, gaining weight and becoming puffy, I started having dizzy spells, fainting, and then incredible DOMS after any exercise. But it still took a few more years and self-referral to an endo before thyroid issues were acknowledged.
It seems from what I’m picking up here that, most generously, I’ve been under diagnosed as having hypothyroidism and under medicated too. But also no one has been remotely interested to look into what’s really behind it all. I had to fight to get my GP to honour a Levothyroxine dosage my endocrinologist set. So I’m not even going to ask to get an NHS scan. Instead I’ll go to the place in London that does them. I believe there’s a Thyroid UK code for 10% off. I’m really curious to know what that will tell me.
The Medichecks blood test also looks interesting. I’ll save that as another possible option.
The endo knew it was AAIT and told me he said what I had was a more unusual type so I did get an exact diagnosis but it didn’t mean much to me till I read Tania Smith’s blog posts where are explained it so well.
I asked repeatedly if my strange health issues could be thyroid related but it was dismissed (no thyroid function test of course just crystal ball diagnosing) and everything was blamed on the menopause but they persisted after the menopause had passed so it clearly could not have been down to that. I was so ill I wasn’t very able to reflect on anything I was just getting from moment to moment as best I could some part of me must have pressed me to seek help knowing it was terminal. I passed out on my bike one time which must have been thyroid disease induced syncope. I was a mess.
I’m so sorry to hear that, and I totally relate. Looking back, and even now, I’ve just been getting through. I also had the “menopause” diagnosis… When I began fainting, my doctor said it was “some strange vaso vagal thing” but could not explain why it was happening.
I’ve read more of Tania Smith’s blog now, can’t say I understand all the science, but it’s really interesting. At least I no longer feel like I’m the only person who the medical profession doesn’t understand!
Yes her posts can be hard going but I plough through all of them and bit by bit my knowledge increases and it’s much more than most doctors, I’d say. No one associated my collapse with thyroid, tho syncope is a known symptom. It never happened again but it was dramatic - amublance worried fellow cyclists X-rays concussion huge haematona in leg…
I’m in South Wales. My GP says no-one is prescribed T3 in that practice (although I guess I could investigate and see if other practices do prescribe).
I found this article. There’s a table of how much levothyroxine and liothyronine was prescribed in Wales 2019 to 2020 (also one for England). It’s not zero! That’s worth knowing.
Also, looks like a few of the authors are at Cardiff University.
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