Hello, I would like some help as I am new to all of this and feeling a little overwhelmed.
I am a 32 year old female (66kg) I have had high thyroid antibodies for years and had a baby 8 months ago which has tipped my body into being hypothyroid. So I assume I have hashimotos although this hasn’t been diagnosed?!
I didn’t have any symptoms but was started on 50mh Levothyroxine 7 weeks ago. I had no side effects initially but as of being on them for 6 weeks I have started with overwhelming physical anxiety (adrenaline rush, diarrhoea, no appetite, weight loss - I’ve lost a kg in a week). My doctor has suggested lowering my dose to 25mg to see if this reduces the symptoms.
my latest bloods were:
TSH 3.81 (0.27-4.2)
T4 16.4 (11-26)
T3 was not tested.
If I were hyperthyroid as the symptoms suggest wouldn’t my results be low TSH. Therefore is this the Levo causing these symptoms or my thyroid?
I also have high prolactin levels, high blood pressure and high aldosterone levels. I am also on a low dose of Venlafaxine which I’ve been on for years.
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If you were hyper, yes, your TSH would be suppressed, and your FT4 well over-range. But all your symptoms could very well be hypo symptoms, too. There is no rigid division between hypo and hyper symptoms, a lot of them cross over.
It is not at all unusualy for symptoms to arise out of the blue once you start thyroid hormone replacement. But that doesn't mean it's the levo causing them. It is just your body adjusting to suddenly having more hormone. Although you are still very hypo with a TSH that high, and an FT4 only 36% through the range. And with a low FT4 and a high TSH, your FT3 - the active hormone - is going to be pretty low, too. In fact, it could be lower now than it was before you started the levo. But, as they rarely test it, we can't know for sure.
50 mcg is only a starter dose. You should be retested about now, and your dose increased to 75 mcg. Which should help you feel better.
Levothyroxine doesn’t “top up” failing thyroid…..it replaces it
Standard STARTER dose is 50mcg
Your new blood test results show you are ready to increase dose Levo to 75mcg
Free T4 (fT4) 16.4 pmol/L (11 - 26)
Currently Ft4 only 36.0% through range
Most people when adequately treated on just levothyroxine they will have Ft4 (Levothyroxine) at least 70% through range
Which brand on Levo are you currently taking
Retest in another 6-8 weeks after each increase
GP’s are frequently clueless on how to test and manage Hashimoto’s
Anxiety is common HYPO symptom
Very important to test vitamin D, folate, ferritin and B12 at least once year minimum
Have these been tested
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.
In U.K. medics hardly ever refer to autoimmune thyroid disease as Hashimoto’s (or Ord’s thyroiditis)
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)
Is this how you did your test
Private tests are available as NHS currently rarely tests Ft3 or all relevant vitamins
Your antibodies are high this is Hashimoto's, (also known by medics here in UK more commonly as autoimmune thyroid disease).
Hashimoto's affects the gut and leads to low stomach acid and then low vitamin levels
Low vitamin levels affect Thyroid hormone working
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
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.
Some people need a bit less than guidelines, some a bit more
TSH should be under 2 as an absolute maximum when on levothyroxine
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).
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