I was diagnosed with hypothyroidism and diabetes 10 years ago. I’ve been on 125g thyroxine and metformin for my diabetes. This time last year I the most awful itching rash (urticaria) . After taking high doses of steroids drugs and anti histamines I finally saw a dermatologist who recommended that I have my ferritin and vitamin D levels checked as research showed that low levels can lead to chronic urticaria. I had always assumed but these were checked as part of my full blood count which I have tested every year as my long-term review with the GP. I found out that the GP doesn’t test for these as both tests are quite expensive (!). My ferritin and vitamin D levels were very low. I subsequently started a course of high dose ferritin with the GP and the rash subsided. I then had an endoscopy and colonoscopy to see if they could find out the reason why I wasn’t absorbing iron. These tests were fairly unpleasant but didn’t reveal anything. The high dose ferritin through the GP stopped three months ago and I’ve recently had a blood test but it shows that my ferritin level is still only at the lowest end of the normal range, which is:
Serum ferritin level (XE24r) 30 ng/ml [30 - 337]
I wondered if anybody had had experience of this previously and whether my low ferritin levels are specific to my thyroid condition which the GP assures me they’re not but I’m beginning to wonder whether I can trust their judgement.
I was also concerned that my TSH levels are on the low side Serum TSH level (XaELV) 0.72 miu/L [0.2 - 4.3]
Any help or advice would be appreciated
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Oatlove
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Low ferritin levels are extremely common in the general female population and even more common when hypo. Your GP has no training in nutrition.
Are you eating much red meat and offal in your diet?
Many members do well with this iron product. Take 4 hours away from Levo & with vit C or orange juice to help absorption. It can take over a year to raise ferritin.
Do you also take vit K2 to help it go to your bones? Most people need 3,000iu+ vit D per day.
What were B12 & folate levels? Metformin lowers B12 level.
Most people need TSH at the very lowest end of the range so yours might even be slightly high with room for an increase.
GP testing just TSH is inadequate. For full assessment we need TSH, FT4 &FT3, often only available with a private blood test. Suggest you buy one to see where your elvels are.
see link for companies offering private blood tests & discount codes, some offer a blood draw service at an extra cost. thyroiduk.org/testing/priva...
There is also a new company offering walk in& mail order blood tests in London, Kent, Sussex & Surrey areas. Check to see if there is a blood test company near you. onedaytests.com/products/ul...
Only do private tests on a Monday or Tuesday to avoid postal delays.
Do you do tests as per the protocol recommended here?
Recommended blood test protocol: Test at 9am (or as close as possible), fasting, last levo dose 24hrs before the blood draw & no biotin containing supplements for 3-7 days (Biotin can interfere with thyroid blood results as it is used in the testing process).
Testing like this gives consistency in your results and will show stable blood levels of hormone and highest TSH which varies throughout the day. Taking Levo/T3 just prior to blood draw can show a falsely elevated result and your GP/Endo might change your dose incorrectly as a result.
Hi Jaydee1507. Thanks so much for your detailed response. It’s so depressing that the GP doesn’t bother testing for T4/3 and outrageous that we have to work out for ourselves what’s going on. I imagine the only reason they do a diabetes health review is because it makes money for the practice. I’ll get a private test done asap. My B12 looks ok (I think!) Serum vitamin B12 level (XE2pf) 489 ng/L [110 - 900] - about midway in the range. Thanks also for the test protocol and the recommended for iron.
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
Low vitamin levels are extremely common when hypothyroid, especially with autoimmune thyroid disease
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
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)
What is reason for your hypothyroidism
Autoimmune?
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
thank you, much appreciated. Yes my hypo is autoimmune, I was tested for the antibody 9 years ago but only told about the antibody when I asked the GP earlier this year. The GP seems to have very little knowledge about or support for my condition, which is worrying. I’ll arrange private blood tests asap thanks
The GP seems to have very little knowledge about or support for my condition, which is worrying
Sadly typical
You need coeliac blood test too if not already on gluten free diet
Poor gut 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.
A trial of strictly gluten free diet is always worth doing
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 and may slowly lower TPO antibodies
While still eating high gluten diet ask GP for coeliac blood test first as per NICE Guidelines
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
Such great support. I’ve been tested for coeliac and had endoscopy/ colonoscopy but they found nothing. I’ll go gluten free and see if it improves things. I was starting to suspect dairy intolerance so will try that as well. Thank you!
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