Hi all, I'm back with another request for your valuable input. I started levothyroxine treatment for Hashimoto's in February, and at my last review my GP agreed an increase to 62.5mcg (50/75 on alternating days). Things have improved in many areas - I seem to be back to a manageable level of energy in my body, sleep is normal, and my anxiety has massively decreased. I'm stuck though with the cognitive symptoms - I'm struggling with brain fog and concentration, and a general feeling of being spaced out - it's like being asleep and living in a dream while awake. I'm a PhD student and my academic work has been crippled by this, along with other impacts like not feeling safe to drive.
I've just had my bloods done ready for another review with the GP and my TSH was 0.4 (0.35-5.5) and T4 was 15.6 (10.5-21) - down from TSH of 2.13 and T4 of 18.8 in late March.
I also did a private blood test a few weeks ago which showed my T4 to be 17.7 (12-22) and T3 to be 4.2 (3.1-6.8). TSH was 2 (0.27-4.2).
A few weeks ago I had a private consultation with a specialist GP from the Thyroid UK list. They recommended NDT as a good option for me given my high antibodies and their experience with other patients, but said we could also try increasing my dose of levothyroxine to 75mcg and see if things improved (aiming for a TSH under 1 and T4 18-20, and for a better T3 conversion), or try adding T3. I opted for the most conservative option, but given my (surprisingly) low TSH I think my GP is unlikely to let me increase my dose again - so either way I'm likely to need to go back to the specialist for the next step.
I suppose I have a bit of a mental block with NDT given the cost (although not unfeasible) and the other options that are available; it feels like it might be overkill at the moment. But at the same time, something which would help me regain function in my work feels necessary - time is not on my side.
I also had ferritin, folate, B12 and vitamin D tested in May:
Ferritin 74 (30-150) : 36% through range; folate 36.8 (8.83-60.8) : 53%; active B12 128 (37.5-188): 60%, vitamin D 90 (50-250) : 20%. Vitamin D has actually come down in the last six months despite trebling supplements, and ferritin has remained around the same despite starting to eat red meat regularly again after a period as veggie.
I'm on a good B complex (Pure Encapsulations B Complex Plus), Balanced zinc picolinate 22mg, vitamin D 3000 iu, Higher Nature omega 3 1000mg, selenium 200 mcg, probiotics: Optibac s. boulardii 250mg, Barefoot magnesium glycinate 560mg (112mg magnesium), extra vitamin C 1000mg, and take adaptogens (ashwagandha 340mg 2x daily, and rhodiola rosea 200mg 2x daily, on specialist's advice).
Does anyone have any suggestions for where to go next with this symptom profile and results?
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sa67
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Please can you give actual readings and ranges for the ferritin, folate, B12 and vitamin D -
36% doesn't sound ok for ferritin, but without the actual base numbers these percentages mean nothing.
We generally feel at our best when our T4 is in the top quadrant of it's range and this then, in theory, converts to a decent level of T3 tracking behind T4 by around 15 % :
Your T4 is just 57% through it's range with your T3 tracking behind at around 30%.
So you are converting the T4 into T3 and as you increase your T4 your T3 should also improve in percentage terms and keep tracking behind your T4 reading by around 15%.
T4 works very well for around 80 % of the population and I do not see any reason why you need to consider stressing yourself out looking at other treatment options at this point as current it would seem your T4 too low as are your vitamins and minerals.
No thyroid hormone works well until your core strength vitamins and minerals are up and maintained at optimal levels and I now aim for a ferritin at around 100: folate at around 20: active B12 75++ ( serum B12 500++ ) and vitamin D at around 100:
Hashimoto's is an auto immune disease and systematically destroys and disables the thyroid and there may well come a time when you find T4 doesn't work as well as it once did.
Currently i think you just need to optimise vitamins and minerals, with a general rule of thumb being at least 50% through the ranges, and work on increasing your T4 up into the top quadrant + 75% through it's range :
Healing the gut is often the first step when with Hashimoto's as the T4 is absorbed and converted into T3 in the liver - have you been ruled out for celiac disease and have you considered looking at food intolerances such as gluten, dairy, wheat etc?
P.S, just read your first post - are you waiting on a lip biopsy for the Sjogren's Syndrome :
There is the British Sjogren's Society Association and when I last read around things Dr Elizabeth Price would treat if not with an official diagnosis. bssa.uk.net
Please ensure that whatever sprays, drops or gels you use on your eyes are all Preservative Free - even those prescribed by the NHS.
I wonder if you may also have TED - thyroid eye disease - and can signpost you the Thyroid Eye Disease Charitable Trust - tedct.org.uk - who can signpost you to outlier specialist eye units where you will be seen by both an ophthalmologist and endocrinologist to assess and monitor your treatment.
Thank you for this in-depth response. I've added the precise figures to the post - clearly I do need to work more on my ferritin especially, but it doesn't seem to be responding at all to dietary adjustments. Is supplementation possible? Vitamin D also hasn't gone up with increased supplements, and indeed the specialist GP suggested that it's difficult to get this to increase until the thyroid hormones (calcitonin in particular) are at good levels.
My rheumatologist diagnosed Sjogren's on a hunch, I think (me presenting with dry eyes), and I haven't pursued it further (nor has the consultant). Interestingly my sister tested positive for the antibodies last year. My eyes haven't been too problematic lately, unless I wear mascara. TED is indeed something I'd wondered about when the Hashimoto's became apparent.
Re: propanolol - yes, I only took it for about four days before I couldn't take its effects and stopped. It had been given based on the symptoms I was presenting with (hyper-looking symptoms although not hyper - specialist suggested this was probably cortisol and adrenaline related), and my initially suppressed TSH, before the repeat bloods showed I was moving in the other direction.
My levothyroxine is 50mcg Mercury Pharma and 25mcg Teva. I don't think I have issues with the Teva, although I have been moved around various brands since commencing treatment (initially 50mcg Teva, then 62.5mcg on Accord and Wockhardt, now Mercury/Teva blend). I know that's not ideal but I've been trying to address one thing at a time with the GP.
My bloods have all been done early and delaying levo until after the blood draw, except the latest test which was slightly later at 10.30 (still delaying my dose until after).
I've been totally gluten free for 4+ months and didn't think it made any difference, so I've started to reintroduce gluten in the last week. I also went dairy free for a couple of months but reintroduced (didn't see any change). I wasn't tested for coeliac as I'd already gone GF by the time it was on the cards. I have found that I'm very sensitive to soy, and get on marginally better with a minimally processed diet without added sugar or sweeteners.
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