I have been feeling dreadful for the past few years and have been on a journey to find out what is wrong with me. Last year medichecks test showed elevated thyroid antibodies and doctor finally started me on levothyroxine after TSH went up to 19 at one stage (my total cholesterol was also 9.9!) I have been taking 50mg of Levothyroxine since early September 2024.
Blood test on 15th October 2024 - TSH 2.9 ml/UL (0.3 - 5.5)
- GP said this is now in normal range (cholesterol also down to 6.9) and did not want to up my dosage even though I said I'd read TSH should be closer to 1 whilst on levo - she brushed over this and said the levothyroxine might not have taken full effect yet.
Incidentally, due to a swelling above my collarbone on one side I was referred for a neck ultrasound (turned out to be fat!) but in the report I noticed the radiologist had noted 'The thyroid gland is small and has lost its usual reflectivity in keeping with thyroxine replacement therapy'.
I was wondering if this finding really is normal for someone with both positive antibodies and on a relatively small dose of Levothyroxine for relatively short period of time? Ultrasound was labelled 'satisfactory' rather than 'normal'.
The reason I ask is that I don't have much faith in the system at the moment, and on Paloma Health website I read about the little mentioned 'atrophic' thyroid, where it said this is usually found in elderly Hashimotos patients on therapy for years. I am only 58 and as I say, only started levothyroxine in September. So is a 'small' thyroid really normal for somebody in my circumstances?
I would really appreciate it if anyone had any input on this. Thank you!
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louisa10
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Once we are on Levo just testing TSH is completely inadequate
50mcg is only standard STARTER dose levothyroxine
TSH over 2 suggests you are on too low a dose
Levothyroxine doesn’t “top up “ your own thyroid output, it replaces it
See/contact GP
Request a new test including Free T4 and FreeT3 and thyroid antibodies and vitamin D, folate, ferritin and B12
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)
T3 ….day before test split T3 as 2 or 3 smaller doses spread through the day, with last dose approximately 8-12 hours before test
Private tests are available as NHS currently rarely tests Ft3 or all relevant vitamins
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. Thyroid shrinks and shrivels up
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
What vitamin supplements are you taking
When were vitamin levels last tested
Guidelines of dose Levo by weight
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).
Thanks so much for the comprehensive answers..... Over the past 5 years I have gained so much weight without any changes in diet/lifestyle... I am currently 100kg and 17kg of that since September alone - so I can see that 50mg of levothyroxine is barely touching the sides!
I supplement with Magnesium Glycinate and D3/K2 consistently - these were last tested in May '24 with Blue Horizon - D was 100 (lowest I've seen it is 60 thanks to supplementation).
I do have consistently high ferritin although normal iron. my last test for this was 272 ug/L (13.0 - 150) and my ESR was 19 - every joint in body aches! I don't know if you think these are relevant?
So it seems if my thyroid is small on ultrasound and high antibodies, I likely have the Ord's thyroiditis? Does this usually have a different outcome or treatment plan?
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
A 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
Or buy a test online, about £20
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.
Similarly few months later consider trying dairy free too. Approx 50-60% find dairy free beneficial
With loads of vegan dairy alternatives these days it’s not as difficult as in the past
Igennus B complex popular option. Nice small tablets. Most people only find they need one per day. But some people find it’s not high enough dose and may need separate methyl folate couple times a week
Thorne Basic B recommended vitamin B complex that contains folate, but they are large capsules. (You can tip powder out if can’t swallow capsule) Thorne can be difficult to find at reasonable price, should be around £20-£25. iherb.com often have in stock. Or try ebay
IMPORTANT......If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 5-7 days before ALL BLOOD TESTS , as biotin can falsely affect test results
In week before blood test, when you stop vitamin B complex, you might want to consider taking a separate folate supplement (eg Jarrow methyl folate 400mcg)
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