My daughter has been hypothyroid for about 10 years and is on 100mcg levothyroxine and supposedly managed by her Gp. She has been trying to get referred to an endocrinologist as she hasn’t felt well for a while. Tiredness, low mood continues to get sore throats and ear infections, very bad periods and more besides. She has been put on iron tablets which haven’t helped much. Her Gp has referred her for CBT because of her anxiety and stress. She is anxious and stressed because of not being listened too. Considering she is hypothyroid she cannot put weight on which I thought was strange. Saying that I rather she was thin and not the weight that I am.
she had a blood test last week her TSH was 1.2 miu/L (0.35-4.94) they also tested for antibodies which were abnormal but expected. I don’t understand what they mean?
Her Gp has reluctantly referred her but she said she doesn’t hold out much hope.
Why can’t you get referred to an endocrinologist if you are hypothyroid it makes no sense to me especially if you don’t think you are being looked after by your Gp.
hope someone can help me get an answer. Thanks in advance
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She needs to get FULL thyroid and vitamin testing done
Just testing TSH is completely inadequate
How long has she been taking iron supplements
Remember it’s essential to take iron at least 4 hours away from levothyroxine and at least 2 hours away from other supplements
Which brand
Bloods should be retested 6-8 weeks after each dose change or brand change in levothyroxine
For full Thyroid evaluation she needs TSH, FT4 and FT3 tested
Very important to test vitamin D, folate, ferritin and B12 at least once year minimum
Her high thyroid antibodies confirms autoimmune thyroid disease also called Hashimoto’s
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.
In U.K. medics hardly ever refer to autoimmune thyroid disease as Hashimoto’s (or Ord’s thyroiditis)
Low vitamin levels are extremely common when hypothyroid, especially with autoimmune thyroid disease
What other vitamin supplements is she taking
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
List of private testing options and money off codes
Her Gp had put a referral in for an endocrinologist so we will see if she gets accepted for that.
She would do a private blood test but with the cost of living crisis they struggle to put food on the table and can’t afford much else. Same goes for buying the supplements she needs to take. She does take selenium at the moment. I help out when I can but it is difficult as I hope you will understand.
The brand of Levothyroxine she takes at the moment is called Accord. It does change now and again but that’s because what the pharmacy has at the time.
She has been taking iron for 2 months. Yes she makes sure they are taken at a distance from other tablets.
She has never had her neck examined or scanned. Just gone on blood tests which have been within range of TSH. Never had an investigation as to what type of thyroid disease she had. Only just found out that it could be Hashimoto’s.
Drs never tell you to stop taking your medication before blood tests.
Why can’t you get referred to an endocrinologist if you are hypothyroid it makes no sense to me especially if you don’t think you are being looked after by your Gp.
Vast majority of endocrinologists are diabetes specialists and useless for thyroid
There’s almost 2 million people in uk on replacement thyroid hormones
Typically it’s over a year wait to see endocrinologist on NHS when hypothyroid and if blood tests are “normal” they frequently refuse the referral
Just TSH is useless…..she may simply be not on high enough dose levothyroxine
Get full testing done see where Ft4 and Ft3 are
How much does she weigh in kilo Approx
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
Consider starting levothyroxine at a dosage of 1.6 micrograms per kilogram of body weight per day (rounded to the nearest 25 micrograms) for adults under 65 with primary hypothyroidism and no history of cardiovascular disease.
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.
There are different criteria’s for referral in different parts of the country, and even if your GP referred the referral could be rejected by endocrinology this is as it is expected that GPs take care of hypothyroid patients. Of course, consultants can choose to take on a patient should they wish irregardless. I think often the quickest solution is to ask GP to talk to Endocrinology for input.
As others have mentioned, many appear to be useless in thyroid disorders, even private consultants. Though I have no experience of this.
Considering she is hypothyroid she cannot put weight on which I thought was strange. Saying that I rather she was thin and not the weight that I am.
Significant minority of Hashimoto’s patients struggle to maintain weight
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
or buy test online for under £20, just to rule it out first
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
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