My recent blood tests read: TSH 36.7 , freeT3 3.3 and T4 13.7. I was alarmed when I saw my TSH.
My GP would recommend increasing the T4 , but it seems ok to me. And when it goes up anywhere past 15, I start to get horrible symptoms. E.G. fast heartrate.
I have been seeing a private endo. as I was not getting anywhere with my GP. My levels have been all over the place for over a year. I have been on Levo for ten years and although my numbers have usually been within 'the range' I've never felt good. I've never had a proper diagnosis, but the endo. has recently told me I have Thyroiditis and not Hypothyroidism as I have always been treated for.
Has anyone every experienced normal T4 but abnormal TSH.
Any comment welcomed.
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kalsang
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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)
Which brand of levothyroxine are you taking
Are you taking levothyroxine waking or bedtime
Always on an empty stomach and then nothing apart from water for at least an hour after
No supplements or other medications within 2 hours of levothyroxine
Some like iron, magnesium, HRT, PPI or vitamin D tablets at least 4 hours away from levothyroxine
Many thanks for your response. I am currently taking 50mg a day which I take first thing in the morning at the same time with water and then wait an hour before breakfast. As you mention, I have been taking VIT D around 2 hours after. Otherwise nothing else for a few hours. My test was at 9.30, I had took my thyroxine at 7am . Brand is Mercury Pharma.
Never supplement iron without doing full iron panel test for anaemia first and retest 3-4 times a year if self supplementing. It’s possible to have low ferritin but high iron
Test early morning, only water to drink between waking and test. Avoid high iron rich dinner night before test
Levo doesn’t “top up” failing thyroid, it replaces it
guidelines on dose levothyroxine by weight
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 near full replacement dose
In the majority of patients 50-100 μg thyroxine can be used as the starting dose. Alterations in dose are achieved by using 25-50 μg increments and adequacy of the new dose can be confirmed by repeat measurement of TSH after 2-3 months.
The majority of patients will be clinically euthyroid with a ‘normal’ TSH and having thyroxine replacement in the range 75-150 μg/day (1.6ug/Kg on average).
The recommended approach is to titrate thyroxine therapy against the TSH concentration whilst assessing clinical well-being. The target is a serum TSH within the reference range.
……The primary target of thyroxine replacement therapy is to make the patient feel well and to achieve a serum TSH that is within the reference range. The corresponding FT4 will be within or slightly above its reference range.
The minimum period to achieve stable concentrations after a change in dose of thyroxine is two months and thyroid function tests should not normally be requested before this period has elapsed.
the endo. has recently told me I have Thyroiditis and not Hypothyroidism as I have always been treated for.
Presumably you mean you have autoimmune thyroid disease
Have you had TPO and TG thyroid antibodies tested at least once
About 90% of primary hypothyroidism is autoimmune thyroid disease, usually diagnosed by high 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.
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)
Many hashimoto’s patients only feel well on high enough dose Levo to suppress/shut down their own thyroid to stop levels hopping up and down
Poor gut function with Hashimoto’s 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
or buy test online for under £20, just to rule it out first
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
I'm going to do what you suggest. I need to start eliminating possible issues. This is the most information I have ever received since being on Levo. for ten years. No one has ever discussed my condition with me. I've been completely in the dark and I need to start understanding my condition better, rather than just focussing on my symptoms and remaining anxious. Many thanks.
I don't know why I didn't find this site before, instead of like you say wasting time when you want to get on with your life. I'm very grateful for all the information I have got on my post.
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