Summary of previous issues: I was put on 50 mcg Levo in November 2022 and was refused an increase by two GPs at my practice after a test in January (they said my results were "normal"). Advice from this forum that I was undermedicated. I decided to wait another 8 weeks and then pay for a private test. I now have the results (see below).
I can see that I have high antibodies which I presume means I have an autoimmunity. Unfortunately the ranges here are completely different to the previous ones, but the FT4 and FT 3 still seem quite low in range. Although the TSH has improved, it is still above 1 which I am led to believe would be better? Have I got that right.
Am gritting my teeth for another battle with a GP, and fully expect them to refuse any help despite the fact that I still have symptoms. I don't have some of the awful symptoms experienced by some on the forum but my digestion is terrible, I am severely constipated and get indigestion, bloating and am stuffed whenever I eat. I am putting on weight in a scary way and my mood swings are frightening.
I'd be really grateful for more of your awesome advice before I see the doctor, particularly as the latest test included a lot more than the NHS one. What is the inflammation thing about?
CRP HS (inflammation): 4.31mg/L (0 – 5)
FERRITIN: 87.9ug/L (13 – 150)
FOLATE – SERUM: 13.68ug/L (3.89 - 19.45)
VITAMIN B12: ACTIVE 91.1pmol/L (37.5 – 150)
VITAMIN D:65nmol/L (50 – 200)
TSH: 2.47mU/L (0.27 - 4.2)
FREE T3: 3.81pmol/L (3.1 - 6.8)
FREE THYROXIN:E 13.8pmol/L (12 – 22)
THYROGLOBULIN ANTIBODIES: 47IU/mL < 115 R
THYROID PEROXIDASE ANTIBODIES: 214IU/mL < 34
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Your fT4 is a bit better after longer on the 50mcg dose , but your TSH is still a bit too high.. closer to 1 is where healthy people usually are ...... and 18% is still pretty rubbish for an fT4 level.
Show GP this list of recommendations : healthunlocked.com/thyroidu... my-list-of-references-recommending-gp-s-keep-tsh-lower-
and use it to ask for a "trial dose increase to 75mcg for 6 months to see if it improves your symptoms"
This explanation may help you understand why you need the optimal fT4 level for you , not just anywhere in range" healthunlocked.com/thyroidu...
tattybogle I was advised by people here that my results would not I,prove if I remained on 50mcg levo. However they do seem to have improved a bit, are they likely to get better if I wait. Anticipate doc will say that, so want to be ready if that is not the case!
if you've been on 50mcg for about 4 months ? , then i wouldn't expect the ft4 got much better .
Also the variables of fT4 production from own thyroid (little spikes every hour ish) and the allowable % differences in test results (especially from 2 diff labs with diff machines that can't ever match results exactly ).... means this is not definite proof that the fT4 is really all that much better . All you really know from your fT4 tests is that both labs say you "haven't got much" as opposed to "mid range" or "shed loads"
The other clue here is that the TSH at over 2 is still 'asking' quite loudly for a bit more T4 please (and importantly HOW well you FEEL) .
TSH has been over 2 for months and this is still all the T4 your thyroid is able to produce (including the 50mcg T4 from levo)_ .. if it was able to make more than this it would have done it by now .
it helps to realise that if you've spent a few month reading stuff on here , you've probably done about 300% more learning and thinking about thyroid hormones and how they work on individuals than your GP has done .. ever.
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.
Thanks SlowDragon . Not sure of weight, have been too scared to weigh myself lately! Think I am probably around 80kg.
A bit confused as the FT4 and TSH levels do seem to have improved slightly since my last test. Don’t want to insist of more meds if not necessary, am I just being impatient? I know it can take a long time for symptoms to be relieved.
So you’re going to need several further increases in levothyroxine over coming 12-18months
guidelines on dose levothyroxine by weight
Even if we frequently don’t start on full replacement dose, 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
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.
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.
80kg x 1.6mcg = 128mcg levothyroxine per day
This is a guide. A few people need less guidelines (or can’t tolerate high dose) A few people need more than guidelines
Dose levothyroxine is increased SLOWLY upwards in 25mcg steps
Bloods should be retested 2-3 months after each increase
Always test early morning and last dose levothyroxine 24 hours before test
Try to always get same brand levothyroxine at each prescription
Now you may not eventually need quite that much. As dose levothyroxine is slowly increased you may find your weight may start to improve, especially on gluten free and dairy diet
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
Assuming test is negative you can immediately go on strictly gluten free diet
(If test is positive you will need to remain on high gluten diet until endoscopy, maximum 6 weeks wait officially)
Trying gluten free diet for 3-6 months. If no noticeable improvement then reintroduce gluten and see if symptoms get worse
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% Hashimoto’s patients find dairy free beneficial
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