Having read so much on here about Hashimotos and bearing in mind I'm not getting better on levothyroxine, a friend asked me if I had Hashimotos and I was unsure. I've checked all my recent blood results which indicate I have no thyroid antibodies, ie. IMM Thyroid Peroxidise and IMM Thyroglobin AB are negative. Is it possible to be misdiagnosed with hypothyroidism?
I ask because I'm just not getting better on levothyroxine, still have tremors, joint swelling, burning, aching muscles and headaches. When I was diagnosed I had a slightly raised TSH (6.0) and mainly joint problems and tremors , anxiety and hairloss but no fatigue. I was very stressed at the time looking after an ill parent/job loss etc and tests for cortisol where extremely high. Should be asking the question-what caused my hypothyroidism as might this affect treatment options? If not hashimoto's what are the other causes of Hypothyroidism?
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Sammy0
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Thyroid levels 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 plus both TPO and TG thyroid antibodies tested. Also EXTREMELY important to test vitamin D, folate, ferritin and B12
Ask GP to test vitamin levels
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)
Is this how you do your tests?
Private tests are available as NHS currently rarely tests Ft3 or thyroid antibodies or all relevant vitamins
The aim of levothyroxine is to increase dose upwards in 25mcg steps until TSH is ALWAYS under 2
When adequately treated, TSH will often be well under one.
Most important results are ALWAYS Ft3 followed by Ft4. When adequately treated Ft4 is usually in top third of range and Ft3 at least 60% through range (regardless of how low TSH is)
Extremely important to have optimal vitamin levels too as this helps reduce symptoms and improve how levothyroxine works
An ultrasound scan of thyroid can be helpful
20% of Hashimoto's patients never have raised antibodies
How long have you been left on 75mcg levothyroxine
Which brand of levothyroxine
What vitamin supplements are you currently taking
When were vitamin D, folate, ferritin and B12 last tested
Assuming test was done as early as possible in morning before eating or drinking anything other than water and last dose levothyroxine 24 hours before test
So Ft4 is 56% through range Ft3 44% through range
Helpful calculator for working out percentage through range
Most people on just levothyroxine need Ft4 and Ft3 at least 60% through range
So you add likely under medicated
Levothyroxine doesn’t top up failing thyroid it replaces it
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.
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.
Hi slow dragon, I was on 50mg of levothyroxine for a year then on 75 mg and 50 mixed. I have been on Levo 75mg for about a year now. The endocrinologist said I was adequately medicated so neither he or my GP will raise my dose. My TSH AB result was normal I believe 0.3 (IU/L 0.0-0.9). He signed me off into the care of my GP. As my TSH is normal they are reluctant to raise my dose again even though I still have muscle aches and burning symptoms
My vitamin levels were 'normal' apparently-a full blood panel tested last year in May though my ferritin levels were right at the bottom end but they didn't really say very much about this. My creatinine is high but I've had kidney function tests and an ultrasound on my kidneys and all ok.
So get prescription changed to higher number of 50mcg tablets and cut in half to make 75mcg
Accord don’t make 25mcg tablets
Obviously all four vitamins need to be OPTIMAL
2)Get all four vitamins tested and improve to optimal levels
Come back with new post once you get results
Optimal vitamin levels are
Vitamin D at least around 80nmol and around 100nmol maybe better
Folate and ferritin at least half way through range
Serum B12 at least over 500:
3) get ultrasound scan of thyroid
4) do coeliac blood test and trial strictly gluten free diet
Get full thyroid and retested once vitamins are optimal
5) see different endocrinologist
Fibromyalgia is frequently inadequately treated hypothyroidism, due to low ft3
Your Ft3 is currently low
Email Thyroid UK for list of recommend thyroid specialist endocrinologists who will prescribe T3 if need...NHS and Private
tukadmin@thyroiduk.org
The aim of levothyroxine is to increase dose upwards in 25mcg steps until TSH is under 2
When adequately treated, TSH will often be well under one.
Most important results are ALWAYS Ft3 followed by Ft4. When adequately treated Ft4 is usually in top third of range and Ft3 at least 60% through range (regardless of how low TSH is)
Extremely important to have optimal vitamin levels too as this helps reduce symptoms and improve how levothyroxine works
Vitamins need to be OPTIMAL before considering adding T3
I have no reason for my thyroid problems either. There are several on here who do not have hashimotos or graves and no family history of thyroid trouble. Sometimes it just happens.To be able to comment on your circumstances we would need to know your thyroid blood results and the ranges as well as your dose of levo.
Treatment doesn't differ between hypothyroid conditions (but for hashimotos folks it is handy to know as this condition can lead to fluctuations in levels).
as far as i understand it ... there are a small % of people who do have autoimmune thyroid disease , but don't test positive for thyroid antibodies, but the classic autoimmune damage can be seen on a thyroid scan ...not sure what sort of scan though.So 'no antibodies' does not rule out autoimmune thyroid disease.
Thank you tattybogle, I've read that somewhere. Is it possible to order private thyroid scan tests? I have an unbelievably unhelpful GP who said it was levothyroxine or nothing, then after pestering sent me to a further useless endocrinologist who said my symptoms were nothing to do with my thyroid and sent me to a neurologist
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