hi - i was diagnosed with Hashimotos 21 years ago - i had a heart rate skipping between 245 and 42 plus 28 nodules when they operated and almost died - never really been ok since and spent the last 19 years on levo and have kept having my dose reduced by GP from 150 down to 75 and they wont budge - last year i felt almost as bad as when first diagnosed so i researched on here and tried NDT alone and saw an improvement then added 25 of T3 alone and 12 months ago i felt lots better lost around 3 stones and hair started growing again etc, supplier stopped so i carried on with levo and T3 - gone down hill ever since am literally living on 900 calories a day and exercising and continuing to gain weight which seems unbelievable spoke to GP as i am starting to get things stuck in my throat again plus hair falling out, cant stop sleeping, muscle cramps, numb fingers - all the usual symptoms - i am due to see consultant next week after 3 years ( i have had 4 appointments cancelled) so don't want to waste opportunity recent tests are no help really as i have been self medicating TSH (1.3)/ FT4 (15)/ FT(3 ( 3) - i just want to feel well and stop looking like a oompa lumpa - what do i want consultant to do ?
sorry i am just at a loss
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Bloods should be retested 6-8 weeks after any dose change or brand change in levothyroxine
How much levothyroxine are you currently taking. How much T3
Are you taking T3 as single dose or as 2 or 3 smaller doses per day
For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also EXTREMELY important to test vitamin D, folate, ferritin and B12
Low vitamin levels are extremely common, especially as you have autoimmune thyroid disease (Hashimoto's) diagnosed by raised Thyroid antibodies
Ask GP to test vitamin levels or get tested privately BEFORE appointment (if possible)
Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .
Last dose of Levothyroxine 24 hours prior to blood test. (taking delayed dose immediately after blood draw).
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)
If/when also on T3, make sure to take last third or quarter of daily dose 8-12 hours prior to test, even if this means adjusting time or splitting of dose day before test
Is this how you do your tests?
Please add ranges on these results
What vitamin supplements are you currently taking?
Private tests are available as NHS currently rarely tests Ft3 or thyroid antibodies or all relevant vitamins
crikey that is so useful - my GP is clearly useless as they only test me about once a year (if i ask) and then only TSH until i queried it - then under protest did additional FT4/3 so that's all i have i will get one privately thank you so much for this information feel like i have been fighting a losing battle for years
Hashimoto's frequently affects the gut and leads to low stomach acid and then low vitamin levels
Low vitamin levels affect Thyroid hormone working
So regularly retesting vitamins is essential
Poor gut with Hashimoto’s 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 are coeliac, but over 80% find gluten free diet helps, sometimes significantly. Either due to direct 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
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.
guidelines on dose levothyroxine by weight. (Only applies if on Levothyroxine ALONE)
Even if we 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 on 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.
Traditionally we have tended to start patients on a low dose of levothyroxine and titrate it up over a period of months.
RCT evidence suggests that for the majority of patients this is not necessary and may waste resources.
For patients aged >60y or with ischaemic heart disease, start levothyroxine at 25–50μg daily and titrate up every 3 to 6 weeks as tolerated.
For ALL other patients start at full replacement dose. For most this will equate to 1.6 μg/kg/day (approximately 100μg for a 60kg woman and 125μg for a 75kg man).
If you are starting treatment for subclinical hypothyroidism, this article advises starting at a dose close to the full treatment dose on the basis that it is difficult to assess symptom response unless a therapeutic dose has been trialled.
A small Dutch double-blind cross-over study (ArchIntMed 2010;170:1996) demonstrated that night time rather than morning dosing improved TSH suppression and free T4 measurements, but made no difference to subjective wellbeing. It is reasonable to take levothyroxine at night rather than in the morning, especially for individuals who do not eat late at night.
'since am literally living on 900 calories a day and exercising and continuing to gain weight'
This is adding to your problem. We need calories to convert t4 to t3. If we don't eat enough our bodies run less efficiently, our Ft3 is reduced.
Also exercising either strenuously or a lot when you are already symptomatic and lacking thyroid hormones will make the situation worse.
Your weight is likely to be fluid as you are hypo. Getting your thyroid hormones optimal for you is going to help.
You haven't put the ranges for your blood results. Some folks on levo and t3 need ft4 and Ft3 well over halfway through their ranges. I think that you need consider dose increases.
You are undermedicated with your results in those ranges. You need an increase in hormones.
NHS Grampian Endo recommends that both FT4 and Ft3 are at least 50% through their ranges and I know that some on here need them at 60 or 70% through range so you would be looking at FT3 being over 5 and Ft4 being over 17.5.
This is just general guidance and you would need to work by trial and error to find your own optimal levels after increases.
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spoke to GP as i am starting to get things stuck in my throat again plus hair falling out, cant stop sleeping, muscle cramps, numb fingers - all the usual symptoms - i am due to see consultant next week after 3 years ( i have had 4 appointments cancelled) so don't want to waste opportunity recent tests are no help really as i have been self medicating TSH (1.3)/ FT4 (15)/ FT(3 ( 3) - i just want to feel well and stop looking like a oompa lumpa - what do i want consultant to do ? 
Blood test results and insomnia - help needed for GP appointment please!
Consultant appointment today
Help...not sure what to do next!
metavive 111.. need help understanding my results and what to do next 
Finally got Levo and T3 from consultant
