As per my previous posts I've been experiencing symptoms common to hypo for the last 18 months or so.
GP has been averagely dismissive of all of these, but I've recently managed to persuade her to prescribe levo to see whether this alleviates my symptoms.
She put me on a dose of 25mcg, and asked me to go in for follow up bloods in 8 weeks. I've been taking this for 2 weeks so far and whilst nothing else really seems to have changed I've gone from feeling tired all the time to feeling utterly exhausted, to the point where I'm actually struggling to function at work and have no energy or inclination to do anything whatsoever afterwards. I'm panicking a bit at the prospect of feeling like this for another 6 weeks, or potentially months, until my dose is correctly titrated
Not even sure what I'm asking really, other than some assurance that there's a light at the end of the tunnel?!
These are my most recent levels for reference:
TSH: 4.79ml/UL (0.27 - 4.2)
Free T3: 3.6 pmol/L (3.1 - 6.8)
Free T4: 15pmol/L (12 - 22)
TG antibodies: 326 (0 - 115)
TPO antibodies: 175 (0- 34)
Please tell me it gets better!
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Hux71
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25mcg Levothyroxine is a very low starter dose, usually reserved for elderly parients. Likely you will need significantly more Levo to get FT4 and FT3 higher in range and TSH under 2 (with most members feeling best with TSH significantly under 1).
Can I ask your age? Or do you have any underlying conditions (eg heart) that might explain such a low starter dose? I didn’t begin to feel any Improvement until on 50mcg for 6-8 weeks.
25mcg is a very low starting dose, usually give to children, the elderly or those with a heart condition. Some doctors use weight as a guide to start Levo. Do you know why you've been started on such a low dose, 50mcg is a more usual starting dose.
You are hypothyroid because you can't produce enough thyroid hormone yourself. 25mcg Levo is enough to switch off your own thyroxine production but not enough to replace it then add what is needed to make up for what you can't produce yourself.
Here are the NICE guidelines for initiation of thyroid hormone replacement:
1.3.6 Consider starting levothyroxine at a dosage of 1.6 micrograms per kilogram of body weight per day (rounded to the nearest 25 micrograms) for adults under 65 with primary hypothyroidism and no history of cardiovascular disease.
1.3.7 Consider starting levothyroxine at a dosage of 25 to 50 micrograms per day with titration for adults aged 65 and over and adults with a history of cardiovascular disease.
The dose of levothyroxine (LT4) should be individualized on the basis of clinical response and thyroid function test (TFT) results. Treatment must be monitored regularly to determine an adequate dose and to avoid both under- and over-treatment.
The NICE clinical guideline recommends:
Consider starting LT4 at a dosage of 1.6 micrograms per kilogram of bodyweight per day (rounded to the nearest 25 micrograms) for adults under 65 years of age with primary hypothyroidism and no history of cardiovascular disease.
Consider starting LT4 at a dosage of 25–50 micrograms per day with titration for adults aged 65 years and over, and adults with a history of cardiovascular disease.
The British National Formulary (BNF) recommends:
For adults aged 18–49 years — initially 50–100 micrograms once daily; adjusted in steps of 25–50 micrograms every 3–4 weeks, adjusted according to response; maintenance 100–200 micrograms once daily.
For adults aged 50 years and over, with cardiovascular disease, or severe hypothyroidism — initially 25 micrograms once daily; adjusted in steps of 25 micrograms every 4 weeks, adjusted according to response; maintenance 50–200 micrograms once daily.
See if your GP will increase your dose to 50mcg in the light of your worsening symptoms and the above information.
Your antibodies are high this is Hashimoto's, (also known by medics here in UK more commonly as autoimmune thyroid disease).
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
While still eating high gluten diet ask GP for coeliac blood test first or buy test online for under £20, just to rule it out first
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
I'm not over 65 and apart from the thyroid symptoms am otherwise healthy so I don't know why the GP prescribed such a low dose. The only thing I can think of is that she's only prescribed it at all to humour me, as she's been super dismissive of all my symptoms and pretty much only agreed to a trial of levo at my insistence in the first place.
She did mention testing for coeliac disease when I had my latest blood test but as far as I can see from the results this wasn't done. I'm very reluctant to go GF, mostly because as a single parent working long hours who's already exhausted in the first place it seems like an additional hassle I could really do without. But I'm equally reluctant to spend the little free time I do have either asleep or crying, so I'll definitely read my way through the links!
I felt awful too, worse before better and put weight on too, from about 75mcg onwards things got better, so about 20-24 weeks onward. Hang on in there keep persisting. 🌱
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