My mental health symptoms have been unremittingly present and life affecting over the past year or so (not that they weren't present before-but have increased in intensity from Feb 2023. Every doctor and consultant I have seen have suggested that the issues I am facing are non-Thyroidal, and thereby something else, in most cases, an underlying mental health pathology is to blame. I am autistic, and this has always conditioned my life, but I have just about managed this before 2020. I have also always had Obsessive Compulsive Tendencies, though without obvious compulsions, particularly over health and health contiguous areas. Whether this would be formally recognised as a disorder in my case I don't know, and I have also recently been diagnosed with Generalized Anxiety Disorder. The first line would be to take Anti-Depressants and/or CBT, but I have always (perhaps stupidly and dogmatically) been opposed to this idea. In the case of the former, I don't believe in treating the manifestations of a developmental disorder with anti-depressants, I ain't depressed! RE: CBT, I doubt the probable efficacy in my case (there is some interesting evidence that I can't find right now that tentatively proposes that Autistic people do not do as well with CBT in certain circumstances, especially on self report), and I am entirely aware of the irrationality of my anxieties and maladaptive coping strategies, but the whole reason I use maladaptive ones is that the best ways of dealing with stress are things I can't do! But the other big reason I am sceptical about these mental health treatments is because it is only since my Hypothyroid diagnosis that my mental health symptoms have become persistently unmanagable, and significantly changed in character. And I feel that until this is fully appreciated, one is bound to fail in treatment. The problem is, I don't know where to go. I have tried a whole gamut of T4 doses, with differences for a bit, but no real difference. Presently. I have high conversion, which has led my (excellent and well regarded endocrinology Prof) endocrinologist to say that I don't need T3. I would like to trial it, but they are reluctant since I don't fit the typical patient profile who would benefit it. I may go to a Rhumetologist,but my experience of a neurologist was basically someone who wasn't interested in my symptoms because I didn't fit a pattern of obvious disease, so was written off. From my preliminary research, there isn't an obvious disease pattern. I do have a rash over my face that resembles a Lupus rash, but have been told that it categorically isn't a lupus rash by my GP. So I get a bit worried I'll be fobbed off again.
Any advice very much appreciated!
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ErraticAspie
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Health, generally. A fear of chronic pain caused by my own abnormal bodily movements, including, but not exclusively, walking, eye movements, swallowing, mouth movements, breathing etc. Food, which impacts diet, due to Autism and sensory processing problems (I take vitamins to compensate-trying to improve this but very difficult). This stuff massively impacts on me, makes things as simple as sitting at a desk a worrisome activity (all this started in 2023). Light, even at one stage the fear of looking at the sun. Apart from some anxiety on accidentally hurting myself and diet, none of this remotely impacted on my life until June 2020, when I noticed tingling in my feet (the first sign of what would become Hypothyroid diagnosis).
Mind: Massive decline (went from reading 80-100 serious academic books per year to barely being able to read 1). Massive memory issues, problems finding words. Complete lack of mental sharpness. Massively irritable, to the point of making relationships with my family more difficult.
General systemic:
Muscle issues, periodic twitching (esp on higher doses) occasional nausea and headaches (on high doses), palpitations (on higher doses). Weight gain (last time I checked 10 stone 6) having been 9 stone at diagnosis, at 9 stone 6 to 9 stone 8 more generally. This has come despite going on a 30 to 40 minute walk most days, which I hadn't been doing between 2021-2022). Tingling and numbness, gum inflammation (may be irrelevant and simlpy related to plaque build up, but my dentist noticed oddness). Earwax build up. Tiredness, and sleeping 9-10 hours if not interrupted.
Please also add details: what thyroid medication you were taking, time of day this test was done and time interval between last dose of thyroid medication before blood draw.
I really don't know what to do. Part of me wishes to embrace mental health treatment to get rid of this scourge, but another part of me thinks that this scourge is pretty clearly the remnants of badly treated illness, and until this is sorted, that we will not have a tractable sense of the issues, what causes what, and hence, no chance of effective treatment. But nobody to agree with me that the Thyroid or some other unknown autoimmune/neurological problem is in fact the issue!
I take Thyroxine maybe 30 minutes before food and water. I tried evenings but that completely failed for me, made everything worse. I take a multivit and vitamin d.
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 near full replacement dose (typically 1.6mcg levothyroxine per kilo of your weight per day)
In the majority of patients 50-100 μg thyroxine can be used as the starting dose. Alterations in dose are achieved by using 25-50 μg increments and adequacy of the new dose can be confirmed by repeat measurement of TSH after 2-3 months.
The majority of patients will be clinically euthyroid with a ‘normal’ TSH and having thyroxine replacement in the range 75-150 μg/day (1.6ug/Kg on average).
The recommended approach is to titrate thyroxine therapy against the TSH concentration whilst assessing clinical well-being. The target is a serum TSH within the reference range.
……The primary target of thyroxine replacement therapy is to make the patient feel well and to achieve a serum TSH that is within the reference range. The corresponding FT4 will be within or slightly above its reference range.
The minimum period to achieve stable concentrations after a change in dose of thyroxine is two months and thyroid function tests should not normally be requested before this period has elapsed.
Some people need a bit less than guidelines, some a bit more
TSH should be under 2 as an absolute maximum when on levothyroxine
If symptoms of hypothyroidism persist despite normalisation of TSH, the dose of levothyroxine can be titrated further to place the TSH in the lower part of the reference range or even slightly below (i.e., TSH: 0.1–2.0 mU/L), but avoiding TSH < 0.1 mU/L. Use of alternate day dosing of different levothyroxine strengths may be needed to achieve this (e.g., 100 mcg for 4 days; 125 mcg for 3 days weekly).
I take Thyroxine maybe 30 minutes before food and water
Suggest you leave at least an hour before food
And 2 hours before any vitamin supplements
Stop any supplements that contain biotin at least 5-7 days before blood tests
Many, many thyroid patients need to supplement vitamin D, separate magnesium and vitamin B complex daily and continuously to maintain good vitamin levels
Some need separate B12 as well, especially initially
Some (mainly females) have to work hard to maintain good iron/ferritin
As you are currently on inadequate dose Levo quite likely vitamin levels are low
Have you had testosterone levels tested
What’s reason for your hypothyroidism……autoimmune?
I am 10 stone 6, age 28 and a bloke. Will start taking longer before food, I already leave a gap with vitamins. Biotin is in the vitamin, so I take that out and replace with specific vitamins. I had a testosterone test that came back normal. Also had high cortisol but assessed as simply stress and not cushings. Autoimmune hypothyroidism, that came after several stressors.
High cortisol is common when on inadequate dose Levo
It should improve as dose levothyroxine increases
You don’t appear to be poor converter of Ft4 to Ft3 ….you just need more Ft4 (levothyroxine)
As your hypothyroidism is autoimmune it’s especially important to test vitamin D, folate, ferritin and B12 ….ideally twice year, especially if working on improving
Once vitamin levels optimal, test at least annually
Test vitamin levels and only supplement what’s necessary
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
125 dose suppressed tsh better but also had massive anxiety spikes. When I went down on dose, I get way better (maybe due to a t3 spike) but then returned to the same state a month later. Obviously, all on the assumption that these things are in fact linked.
Should have been tested when got autoimmune thyroid diagnosis
Or are you already on gluten free diet
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
While still 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
Hi EA. What an excellently meticulous post. You’re certainly thinking of everything.
My Free Ts were kind of similar in that my FreeT4 was middle/low in range. I’m taking T3, which was top of range in last test. I still was symptomatic (fatigue, brain fog, a few others).
I chose my next step to bring my t4 up to top quartile.
For the last couple months I’ve titrated my Levo from 75 to 100. I did this with a few weeks going from 75 to 87.5, low and slow, then a couple weeks to an even 100 a day. Low and slow : ) in this titration period the first few weeks I was convinced I was having heart troubles - I’ve had palpitations since I started T3 almost a year or so ago and was a worried about it constantly.
But. Although I’m due for my next bloods soon so don’t have the numbers… I will say that I have seen improvement just in my increase in Levo.
Many people here say we need T4 AND T3 well above mid range towards top quartile in range.
I have decided I’m going to do that before I do anything else, and then see what remains. Fact is that nothing works well without enough T3, and for many many of us, we also feel best when t4 is top quartile.
So I wonder - when you gave your Levo increase a chance - how long did you wait out the anxiety spike? How much time did you give it to settle?
I tend to give it at least 6 weeks, but if I still am feeling worse, I often take myself down in dose. But never for things like headaches and palpitations, generally for mental health, and once pulsatile tinnitus (that was a mistake).
Well… in my experience- and I’ve posted replies about this a lot.
There is a huge difference between 6 weeks… 8 weeks and even 9 weeks!
Once I lost the blood test prescription I was desperate for at 6 weeks… and by week 8-9 when I finally found it I felt immeasurably more settled.
Many people here over the years have reminded me if this.
I’m not saying it will fix everything, but I am saying that for he and many others here we have felt a notable smoothing out AFTER 8 weeks…. More so at 10 or even 12.
Problem is of course that 8-10 weeks is a LONG TIME to feel like crap. Especially when you have no idea if it’s going to work out.
Personally if it was me, I’d study SD’s advice above and methodically take it, step by step one thing at a time. And give your titrations a full 8 weeks before you decide it’s not working.
I can't offer much in the way of advice but lots of solidarity!
I previously had covert OCD, so no 'external' compulsions. My compulsions were to do with recalling memories, doubting and distrusting myself and memories (i.e. the intrusive thoughts I was having were the 'real me') and rumination.
It was so bad I could barely leave the house with at least 5 episodes of panic every day.
It has disappeared almost in its entirety now.
This is due to getting my thyroid hormones optimised AND starting, and optimising, HRT. (Despite only being 37 at the time but confirmed perimenopausal.) (And a year of regular counselling but I had known, undealt with trauma.)
I'm not suggesting your mental health issues aren't related to other things but trying to emphasis that hormone imbalance can cause MH problems but also exacerbate issues.
I’ll just add to this - over the last 2 years since diagnosis I have experienced anxiety/anxious thoughts, and other states of mind that I am aware are entirely caused by my low thyroid hormone.
To your point - not ALL mh problems are caused by thyroid but thyroid CAN be the sole cause of a slice of them OR the sole cause of them getting worse.
There are so many delicate and interwoven threads to this. I had ZERO mental health issues before my hashis. In the past two years I am so aware of this anxiety and anxious feelings, and a bit of social awkwardness, and the way it is a foreign intruder… I can look at it when it happens and intellectually understand that its all in my head and no one else around is feeling it. There’s zero external stimulus for it.
It’s fascinating to me - and I have to think back to before my diagnosis and pretend/act like that person, and remind myself that no one else is experiencing it.
one other thing I would be interested to know from people who have had similar symptoms about is how intense they experienced them to be. Because I get very angry and shout without much reason, and then start crying and being generally distressed. It is this side of my symptoms that I sometimes think might be suggestive of a neurological complaint. But the neuro I saw only saw me at the point when I had tingling which he said was not worrying and not abnormal. So all this other stuff that has come later wasn’t looked at.
Aspergers can come with emotional challenges and if your thyroid levels are too low then likely this will be magnified. Certainly being hypo makes many things so much worse.
Where I am, there is little support. When I was at Uni, there was not much, now I am out, pretty much nothing. Doesn't help that I am fairly idiosyncratic even by the standards of ASDs!
Update: Having calmed down over the weekend, things have intensified. I have been getting into weird agitated states bang on the dot of 6.00 every evening. I notice everything in my visual field, to the point of making watching tv or using a computer difficult. OCD-esque symptoms, but worse. My mum is in contact with a neurologist to see if that is worth exploring.
On the basis of these results, I have upped my dose to 112.5 by using a pill cutter. So far, no symptomatic relief whatsoever. I also saw a Neurologist, for a discussion of some symptoms, who suggested FND/psychological origin and treatment for the problems.
112 is a good idea , give it good 6 wks , (preferably wait a bit longer 8-12wks if already noticing some small improvements at 6 wks) then reassess how you feel / test again.
boring , i know , but "slowly slowly catchee monkee"
Curious .... what treatment did they suggest for FND ?
Mmmm ... not a big fan of either to be honest .... suspect you feel the same ?
although to be fair CBT (or variations of it) can give you some useful insights into yourself and give practical managing strategies , but only if it's delivered by a skilled counsellor. i did find it helped me 'somewhat' in dealing with my very self critical nature ...
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