I was diagnosed with Hasimoto about two years ago. (I have a major health issue which is well controlled with strong medication that effects absorption of things like vitamins). I am on 75mcg Levothyroxine (accord brand). Had a resent blood test at GP's and he said my vit D was low (so prescribed vit D) I also have B12 injections. However I still have all the Hypothyroidism symptoms (hair loss, awful nails and weight gain etc in the last six months) but was told thyroid results all in range.
my latest results are TSH level 0.46 (0.3-5.5), Free T4 15.7 (10.0-22.00).
Advice please - do I get private blood tests? if so what do I do with them when I get them back, would my GP take notice of them? or do I find a private endocrinologist to do tests etc and hopefully get some relief from how I'm feeling.
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Izzys-Mum
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Yes first step get FULL thyroid and vitamin testing
How long have you been on 75mcg
Is your hypothyroidism autoimmune
How low was vitamin D really only
What dose has GP prescribed
Vitamin D tablets should be taken with food (ideally high fat meal) at least 4 hours away from Levo
How frequently do you get B12 injections
For full Thyroid evaluation you need TSH, FT4 and FT3 tested
Also both TPO and TG thyroid antibodies tested at least once to see if your hypothyroidism is autoimmune
Very important to test vitamin D, folate, ferritin and B12 at least once year minimum
Low vitamin levels are extremely common when hypothyroid, especially with autoimmune thyroid disease
About 90% of primary hypothyroidism is autoimmune thyroid disease, usually diagnosed by high TPO and/or high TG 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.
Significant minority of Hashimoto’s patients only have high TG antibodies (thyroglobulin)
NHS only tests TG antibodies if TPO are high
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)
Essential to test vitamin D, folate, ferritin and B12
Lower vitamin levels more common as we get older
For good conversion of Ft4 (levothyroxine) to Ft3 (active hormone) we must maintain GOOD vitamin levels
Recommended that all thyroid blood tests early morning, ideally just before 9am, only drink water between waking and test 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
If you normally take levothyroxine at bedtime/in night ...adjust timings as follows prior to blood test
If testing Monday morning, delay Saturday evening dose levothyroxine until Sunday morning. Delay Sunday evening dose levothyroxine until after blood test on Monday morning. Take Monday evening dose levothyroxine as per normal
IMPORTANT......If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 3-5 days before ALL BLOOD TESTS , as biotin can falsely affect test results
In days before blood test, when you stop vitamin B complex, you might want to consider taking a separate folate supplement (eg Jarrow methyl folate 400mcg)
Advice please - do I get private blood tests? if so what do I do with them when I get them back, would my GP take notice of them? or do I find a private endocrinologist to do tests etc and hopefully get some relief from how I'm feeling.
Bring results back here on a new post
Members can advise on next steps
Eg As you have B12 injections it’s recommended also to supplement a good quality daily vitamin B complex, one with folate in (not folic acid) may be beneficial.
This can help keep all B vitamins in balance and may help maintain B12 levels between injections
suggest if not taking Vitamin B complex yet you perhaps test first before starting
Approx how much do you weigh in kilo
Even if we frequently start on only 50mcg, most people need to increase levothyroxine dose slowly upwards in 25mcg steps (retesting 6-8 weeks after each increase) until eventually on, or somewhere near full replacement dose (typically 1.6mcg levothyroxine per kilo of your weight per day)
Adults usually start with a dose between 50 micrograms and 100 micrograms taken once a day. This may be increased gradually over a few weeks to between 100 micrograms and 200 micrograms taken once a day.
Some people need a bit less than guidelines, some a bit more
If symptoms of hypothyroidism persist despite normalisation of TSH, the dose of levothyroxine can be titrated further to place the TSH in the lower part of the reference range or even slightly below (i.e., TSH: 0.1–2.0 mU/L), but avoiding TSH < 0.1 mU/L. Use of alternate day dosing of different levothyroxine strengths may be needed to achieve this (e.g., 100 mcg for 4 days; 125 mcg for 3 days weekly).
I also have hashimoto's and continued to have quite bad symptoms until I changed my diet. Many hashimoto's patients have food intolerances, especially to gluten (but not all). As mentioned above in the UK doctors treat this as a thyroid disease rather than an autoimmune disease which is an issue. This means there is no talk or support around trying to stop the flare up (which causes the symptoms such as fatigue). With autoimmune disease it is a good idea to try to identify what causes flare ups for you - everyone has their own triggers. You could try doing an an elimination diet to find out if you have intolerances making your symptoms worse. In my case I just gave going gluten free a go first and saw a huge change in symptoms. Later on I went to a version of the autoimmune protocol diet that I find works for me. When I am really strict with my diet I am generally healthy and symptom free.
Are you on gluten free, if not get coeliac blood test via GP BEFORE cutting gluten out
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
And few months later consider trialing dairy free diet
Approx 50-60% find dairy free beneficial
With loads of vegan dairy alternatives these days it’s not as difficult as in the past
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