Brain fog is a brilliant description that no one can really understand until they experience it. I feel like my brain is surrounded by a thick cotton wool-like layer that makes me want to just lie down and close my eyes - except that makes me dizzy. What the heck is happening to me?
I’m 65 and moved here from the US last year. Been on 30mg of Armour for 6 years for sub clinical hypothyroidism and felt “normal”. I was diagnosed by a natural medicine doctor as my GP said all tests were normal. The usual. I was working at the time and very stressed with hair loss, exhaustion and weight gain making life miserable.
Not sure if this is relevant but my mother had her thyroid removed when she was in her 60s. I’m afraid I don’t know why - was living overseas at the time and somehow it was all played down as no big deal, but there was no mention of cancer. She was diagnosed with multiple myeloma when she was 71 and died at 72.
I had to switch to 50mg Accord Levothyroxine when my Armour supply ran out six months ago and I started experiencing this awful brain fog after a couple of months, along with bouts of extreme fatigue, hair thinning and weight gain. I put it down to the new medication. My GP said there was nothing wrong with the dose.
Thanks to you good people on this forum I’ve learned a lot. I asked my GP to test T4 and T3. They’d only tested TSH before prescribing Levo. I also did a private Medichecks full thyroid panel test which has just come back. Everything’s in the normal range but I’m hoping for some real insight from anyone who might be able to offer some as to what I do next. My brain is fairly useless at the moment!
In addition to the Levo I’m taking Propanalol for irregular heartbeat (3 years), a calcium supplement and Vitamin D. Ran out of my US Vit D and have been on one I got at Boots the last few months. I eat a pretty healthy diet with little to no ultra processed food, lots of leafy greens and pulses, occasional red meat, mainly chicken and fish. Low sugar because my glucose was borderline for a while (used to have a tea shop/bakery - quality control you know!) I’m at least 10 pounds - okay, 15 - heavier than I should be but I’ve given up worrying about it at this point.
The one below normal test result from my full panel in February was for GFR. Not sure if that has any bearing on my problem. eGFR 71 (90 - 500). Doctor hasn’t mentioned it but I intend to ask her.
Below are results from the US a year ago when I was on Armour, TSH results from February this year prior to switching to Levo, TSH, T3 and T4 from July, and full Thyroid panel from last week. Vitamins from February and August. February and TSH only July tests were not fasting or no meds (before I knew better from this forum!) - July T3, T4 and August results were.
TSH
8/23 1.90 (0.36 - 3.74) (still on Armour)
2/24 1.60 (0.34 - 5.6) (prior to switching to Levo)
7/24 1.29 (0.34 - 5.6)
8/24 1.54 (0.27 - 4.2)
FT4
8/23 1.0 (0.8 - 1.5) (Armour)
7/24 12.0 (7.5 - 21.1)
8/24 19.5 (12 - 22)
FT3
8/23 3.1 (2.2 - 4.0) (Armour)
7/24 4.6 (3.8 - 6.8)
8/24 4.0. (3.1 - 6.8)
TGA
8/24 17.2 (0 - 115)
TPA
8/24 11.5 (0 - 34)
CRP HS
8/24 0.156 (<3)
VITAMINS
B12
8/24 (Active) 88.9 (>37.5)
2/24 (Serum) 277 (110 - 914)
3/21 (last US test) 593 (193 - 986)
FERRTIN
8/24 228 (30 - 332)
2/24 120 (10 - 180)
FOLATE
8/24 8.9 (>7)
2/24 13.2 (3.1 - 19.9)
VITAMIN D
8/24 98.3 (50 - 250) (Boots 10 ug)
2/24 167 (60 - 150) (still on US brand which I think was higher dose than Boots)
Apologies for the lengthy missive. And thank you for any insight you all can offer.
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Ozxpat
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Thank you so much for your detailed response. The July TSH test was beginning of the month and was mid afternoon, non-fasting, Levo taken that morning, so not ideal. The T3 and T4 test was towards end of the month and followed suggested protocols - before 9am, fasting, no meds, Levo last taken 24 hours beforehand. Same for the Medichecks test 9 days later.
TSH 1.60 (0.34 - 5.6) (prior to switching to Levo)
7/24 please add time of test and how many hours from last dose
TSH 1.29 (0.34 - 5.6)
fT4 12.0 (7.5 - 21.1) 33%
fT3 4.6 (3.8 - 6.8) 26% ~ is range correct or is it actually 3.8- 6 ? ~in which case it's 36%
8/24 please add time of test and how many hours from last dose
TSH 1.54 (0.27 - 4.2)
fT4 19.5 (12 - 22) 75%
fT3 4.0. (3.1 - 6.8) 24%
my initial thoughts are the obvious drop in fT3, and the switch around from fT4 being lower than fT3 on armour ~to much higher than T3 on levo is probably why you feel less well
previous dose of half a grain of armour contained 19mcg T4 + 4.5mcg T3
compared to 50mcg T4 from levo.
Going back to armour would seem sensible , but since you have virtually no chance of getting NDT from the NHS, if i were you i'd look into getting it prescribed privately ~ several people here are using roseway labs (who have their own prescriber) , as a more affordable alternative to seeing a private endo. there have been several posts discussing roseway on the forum, putting it in the search box should find them.
ok , so the big difference in only 9 days between T4 on 7/24 to 8/24 is not explained by time of test / last dose ..... however levels can swing around a bit randomly in autoimmune hypothyroidism... my own T4 results often bear no logical connection to dose/ time .
also different test methods can give slightly different results , so the difference may not really be quite as large as it appears.
Levothyroxine (or NDT) doesn’t “top up” failing thyroid, it replaces it
It’s ESSENTIAL to be on high enough dose
Propranolol will skew results
Once OFF propranolol
Typically on levothyroxine only that will be when Ft4 is at least 70-80% through range and Ft3 at least 60% through range
Often on levo only Ft4 will be high ….but Ft3 low
Maintaining GOOD vitamin levels will often improve conversion rate of Ft4 to Ft3 (once you are off the Propranolol)
TSH on propranolol and/or after being on T3 or NDT is especially unreliable
approx how much do you weigh in kilo
Even if we frequently start on only 50mcg, most people need to increase levothyroxine dose slowly upwards in 25mcg steps (retesting 6-8 weeks after each increase) until eventually on, or somewhere near full replacement dose (typically 1.6mcg levothyroxine per kilo of your weight per day)
I had no idea about Propanalol. I was put on higher dose before I left the US last year - 20mg twice a day, up from 10 twice a day. I’m wondering the best way to taper off. You said slowly - should I bother speaking to a doctor about this? Or try on my own? I have 10mg tablets. How did you do it and are you on a different beta blocker now?
Wait 4-6 weeks before reducing by another 5mg in morning
Repeat until get down to 5mg only
Then cut to 2.5mg
Finally stop one day a week
Next week stop 2 days a week
Palpitations are common when on inadequate dose levothyroxine.
I got off propranolol after improving vitamin levels, especially magnesium and by going gluten free. Gluten free improved absorption and in effect gave dose increase in Levo. Gluten intolerance also affects cortisol. Far more detail on my profile
Interesting. My naturopath suggested Hashimoto’s back in 2018 when I first was tested (sadly can’t find those results). Also, I was told I had coeliac when I was a small child - but that was back in Australia in the 1960s and who knew about it then and how would it have been diagnosed? I had a bloated tummy and wasn’t “thriving” apparently. My mum had to order special rye bread (which obviously wasn’t gluten free but again, who knew much about that back then). I was told I “grew out of it” and certainly wasn’t on a special diet thereafter. As an adult I’ve had issues of bloating but never paid much attention to the cause. I don’t eat a lot of flour but will pay more attention now.
Hashimoto's affects the gut and leads to low stomach acid and then low vitamin levels
Low vitamin levels affect Thyroid hormone working
Poor gut function can lead leaky gut (literally holes in gut wall) this can cause food intolerances.
Most common by far is gluten.
Dairy is second most common.
A trial of strictly gluten free diet is always worth doing
Only 5% of Hashimoto’s patients test positive for coeliac but a further 81% of Hashimoto’s patients who try gluten free diet find noticeable or significant improvement or find it’s essential
A strictly gluten free diet helps or is essential due to gluten intolerance (no test available) or due to leaky gut and gluten causing molecular mimicry (see Amy Myers link)
Changing to a strictly gluten free diet may help reduce symptoms, help gut heal and may slowly lower TPO antibodies
Probably not much point getting tested again for coeliac if you don’t eat high gluten diet
But If eating high gluten diet ask GP for coeliac blood test first as per NICE Guidelines
The predominance of Hashimoto thyroiditis represents an interesting finding, since it has been indirectly confirmed by an Italian study, showing that autoimmune thyroid disease is a risk factor for the evolution towards NCGS in a group of patients with minimal duodenal inflammation. On these bases, an autoimmune stigma in NCGS is strongly supported
In summary, whereas it is not yet clear whether a gluten free diet can prevent autoimmune diseases, it is worth mentioning that HT patients with or without CD benefit from a diet low in gluten as far as the progression and the potential disease complications are concerned
Despite the fact that 5-10% of patients have Celiac disease, in my experience and in the experience of many other physicians, at least 80% + of patients with Hashimoto's who go gluten-free notice a reduction in their symptoms almost immediately.
Similarly few months later consider trying dairy free too. Approx 50-60% find dairy free beneficial
With loads of vegan dairy alternatives these days it’s not as difficult as in the past
Thorne Basic B recommended vitamin B complex that contains folate, but they are large capsules. (You can tip powder out if can’t swallow capsule) Thorne can be difficult to find at reasonable price, should be around £20-£25. iherb.com often have in stock. Or try ebay
IMPORTANT......If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 5-7 days before ALL BLOOD TESTS , as biotin can falsely affect test results
In week before blood test, when you stop vitamin B complex, you might want to consider taking a separate folate supplement (eg Jarrow methyl folate 400mcg)
Post discussing how biotin can affect test results
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Bloods after being on NDT for a year, really appreciate opinions please?
Help with results
Feeling fine but TSH is low
