Approached my GP as still symptomatic on 75 Levothyroxine and felt not optimal dose for me. Dr reluctant to change as last blood results within lab range .
Serum TSH Level - 0.84 (0.3 - 5.5)
Serum free T4 Level - 16.5 (10-22)
With a lot of thought I have self increased T4 from 75 to 100 for a trial period and already feeling the benefits 5 weeks in and no signs or symptoms that I am overdosed.
Assuming I continue to feel well I would like to approach and ask my GP again for medication increase but afraid they will decline due to going against their advice.
I will not be able to continue indefinitely on 100 mcg as I will run out before my next repeat script.
Wondered if anyone else has done the same as me and is there anything more I can tell GP to support them issuing me more Levothyroxine?
yes ... i have done similar thing on a few occasions .
See GP, tell them them your increase and why ,
Be aware that as your TSH was already relatively low they will not be very comfortable increasing your dose anyway, because they are not supposed to 'overmedicate' you ,, and they are very firmly advised by the NHS that "TSH going below range = overmedication".
Tell them of the improvements you feel, ( but avoid emphasising words like "weight loss" or "energetic" or "i feel amazing ", these will all ring alarm bells in the GP's head about overmedication, or using it inappropriately to loose weight easily etc.... Stick to functional descriptions like "i can manage to do 'x ' better")
Get them to retest bloods on this dose (after you have been on it for at least 6 weeks)
Depending on the results :
~ if the TSH is still within range on 100mcg , (and if you have persuaded him you are cautious , careful and being observant for symptoms of overmedication) then hopefully GP well not have a problem with agreeing to increase the prescription. They may want to re-test after another few months on 100mcg .
~ if the TSH is now below range on 100mcg :
They must tell you that TSH going below range leads to increased risks to heart and bones . many here would say the NHS are wrong about these risks , but they still have to tell you, so expect the standard 'low TSH' lecture )
But the conversation you need to have is about Risk vs Quality of life . (and that includes the dangers to your health of not feeling well enough to be properly active)
if your TSH is still 0.04 or higher you can use the same evidence i did: (if it's 0.03 or lower yuo can't )
I used this paper (which the NHS guidelines themselves refer to as part of their evidence to prove 'the risks of low TSH' so it is a very relevant paper ) to show my GP that those risks of low TSH do NOT actually increase unless TSH goes BELOW 0.04
it actually says while TSH is kept between 0.04 and 0.4 the risks are no greater than when TSH is in range . So not all 'low TSH' increases these risk ,, it depends HOW LOW it is.
Context: For patients on T4 replacement, the dose is guided by serum TSH concentrations, but some patients request higher doses due to adverse symptoms.
Objective: The aim of the study was to determine the safety of patients having a low but not suppressed serum TSH when receiving long-term T4 replacement.
Design: We conducted an observational cohort study, using data linkage from regional datasets between 1993 and 2001.
Setting: A population-based study of all patients in Tayside, Scotland, was performed.
Patients: All patients taking T4 replacement therapy (n = 17,684) were included.
Main Outcome Measures: Fatal and nonfatal endpoints were considered for cardiovascular disease, dysrhythmias, and fractures. Patients were categorized as having a suppressed TSH (≤0.03 mU/liter), low TSH (0.04–0.4 mU/liter), normal TSH (0.4–4.0 mU/liter), or raised TSH (>4.0 mU/liter).
Results: Cardiovascular disease, dysrhythmias, and fractures were increased in patients with a high TSH: adjusted hazards ratio, 1.95 (1.73–2.21), 1.80 (1.33–2.44), and 1.83 (1.41–2.37), respectively; and patients with a suppressed TSH: 1.37 (1.17–1.60), 1.6 (1.10–2.33), and 2.02 (1.55–2.62), respectively, when compared to patients with a TSH in the laboratory reference range. Patients with a low TSH did not have an increased risk of any of these outcomes [hazards ratio: 1.1 (0.99–1.123), 1.13 (0.88–1.47), and 1.13 (0.92–1.39), respectively].
Conclusions: Patients with a high or suppressed TSH had an increased risk of cardiovascular disease, dysrhythmias, and fractures, but patients with a low but unsuppressed TSH did not. It may be safe for patients treated with T4 to have a low but not suppressed serum TSH concentration."
for links to other useful discussions on the subject of Low TSH/ Risk vs Quality of life .. see my reply to this post (3rd reply down) healthunlocked.com/thyroidu... (feeling-fine-but-tsh-is-low)
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.
Bloods should be retested 6-8 weeks after each dose change or brand change in levothyroxine
For full Thyroid evaluation you need TSH, FT4 and FT3 tested
plus both TPO and TG thyroid antibodies tested at least once
Very important to test vitamin D, folate, ferritin and B12 at least once year minimum
About 90% of primary hypothyroidism is autoimmune thyroid disease, usually diagnosed by high thyroid antibodies
Autoimmune thyroid disease with goitre is Hashimoto’s
Autoimmune thyroid disease without goitre is Ord’s thyroiditis.
Both are autoimmune and generally called Hashimoto’s.
Low vitamin levels are extremely common when hypothyroid, especially with autoimmune thyroid disease (Hashimoto’s or Ord’s thyroiditis)
20% of autoimmune thyroid patients never have high thyroid antibodies and ultrasound scan of thyroid can get diagnosis
In U.K. medics hardly ever refer to autoimmune thyroid disease as Hashimoto’s (or Ord’s thyroiditis)
Recommended on here that all thyroid blood tests early morning, ideally just before 9am and last dose levothyroxine 24 hours before test
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)
Private tests are available as NHS currently rarely tests Ft3 or all relevant vitamins
List of private testing options and money off codes
I have had TPO antibodies tested and positive but not TG antibodies.
I also have a goitre.
I have had vitamin levels checked and normal but my FBC , haematocrit, haemaglobin and red blood cell count all above range with cause unknown .It has been ongoing for 18 months & waiting neurology appt - a referral put through March 2022!
Will look into private blood testing as suggested.
So your TPO antibodies are high this confirms 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.
According to Izabella Wentz the Thyroid Pharmacist approx 5% with Hashimoto's test positive for coeliac, but a further 80% find 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 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.
I did this between 50 and 75 mcg but had to go back down to 50 feeling rubbish and test again to prove my point to GP. (We’ll string of locums to be precise, there is limited continuity of care). I’m now up to 125mcg and communicate mostly by web form message or via pharmacist@ email. Appointments are only for urgencies at our surgery.
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