Background: hypothyroid on 25mcg thyroxine for past 15 years. Also take setraline and b12 injections (6 monthly). It was noticed on routine bloods that my cholesterol was high so saw a lipid doctor, had an artery ultrasound on neck and lots of thyroid nodules found by chance. Had several FNA and last one I’m waiting on results but the guy noted the thyroid was ‘flooded with white cells’ not sure what that means????
I have received an appointment with endocrine in a months time but on reading around symptoms I suspect I will be given a Hashimotos diagnosis?
Question/advice is should I act now to make lifestyle changes like remove foods from my diet or should I hold off until Iv seen the endocrine team incase it masks the symptoms?
Thanks
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Suggest your first step is to get FULL thyroid including BOTH thyroid antibodies tested plus vitamin D, folate, ferritin and B12
25mcg is an EXTREMELY SMALL dose of levothyroxine
Standard starter dose is 50mcg
which brand of levothyroxine are you currently taking
Please add most recent results and ranges
Exactly what other vitamin supplements are you taking apart from B12 injections (usually given every 3 months….not 6)
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
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 and especially if left on too low a dose of levothyroxine
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)
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
VERY important to test TSH, Ft4 and Ft3 together
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
Much better to go to any consultation having got all bloods tested FIRST
Even if we frequently start on only 50mcg, (or 25mcg if over 65 years old) 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 was originally started on thyroxine due to lack of menstrual cycle my blood and I was getting pregnant. My TSH has always been in range even when the thyroxine was started. So I was started on 25mcg I quickly got pregnant then during my delivery I ended up having a Caesarean hysterectomy (whole other story!) since then despite other symptoms TSH remained in range and Gp always had rational for symptoms therefore no increase on my dose.
Levothyroxine brand: I seem to get a different brand every prescription! And very rarely have bloods (annual/as a Reaction to symptoms or illness).
Blood tests for T3/T4 have not been done for 10+ years.
I’m happy I have been finally referred to the endocrine as retrospectively clearly my thyroid condition has not been managed at all well!
As SlowDragon suggests, I would get full thyroid, antibody and vitamin tests prior to your endo appointment. This way, you will have all relevant info to hand before your endo appointment & can discuss results/ any medication changes needed.
If you do not have Pernicious Anaemia, then few would receive more than one injection if they were seriously low. Then manage on oral B12 (whether prescribed or bought for yourself). Indeed, few would get even one injection.
If you do have Pernicious Anaemia, then it is nowhere near frequent enough. And you need the sort of advice that is available elsewhere.
I urge you to look at the Pernicious Anaemia Society forum:
25mcg for 15 years? That's the starter dose or child's dose. You haven't had appropriate treatment for your hypothyroidism.
Get them to explain their thinking to you and ask why your dose wasn't increased long ago. High cholesterol is one of the many symptoms linked to untreated and undertreated hypothyroidism.
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