Hi I had been on 50mcg of levothyroxine for about 6 weeks approx because I bought them online since my doctor wouldn't prescribe them at the time, as I have a pending hospital appointment with an endocrinologist at the end of this year and he wanted to wait until I'd see him/her first. I told the doctor afterwards that I'd put myself on the levothyroxine. Last week I went back to the doctor for some blood tests to see how I'm getting on with the tablets, I also requested a ferritin test as I am almost intolerant to exercise, always out of breath and always sleepy. The next day I had a call off the doctor telling me that I'm anemic and to go down to the surgery for my iron tablets.
Fast forward to Monday I went back to the doctors and asked for my thryroid test results. She said my thyroid is normal, and applauded me for getting the levothyroxine. She has put it on prescription for me now so I don't have to pay. I asked her for the values of the test and she just told me that my TSH has improved and that they didn't test my T4 levels as they stop testing that when you go on levothyroxine.. So I showed her my big stomach and said I can't go on living with a huge stomach and all she said was that I look like an apple and (typically) put it down to getting older. I dont know where to go from here. She said my thyroid is normal now yet it doesn't feel like it. I am still experiencing rapid weight gain, despite dieting and doing what exercise I can and I still have the goitre. I have to nap at about 3/4pm too. Anyone able to answer this please. T.i.a
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Foxxyyh
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Shockingly bad treatment! The best I can suggest is getting yourself another private test so you actually know what is going on and then you might need to enlighten your GP that you need an increase as unless you weigh around 30 kilos you are underdosed... looks like you are going to have to train this one up!
I'd also recommend getting online access to your records so that you can view your NHS results
You are legally entitled to printed copies of your blood test results and ranges.
The best way to get access to current and historic blood test results is to register for online access to your medical record and blood test results
UK GP practices are supposed to offer everyone online access for blood test results. Ring and ask if this is available and apply to do so if possible, if it is you may need "enhanced access" to see blood results.
In reality some GP surgeries still do not have blood test results online yet
Alternatively ring receptionist and request printed copies of results. Allow couple of days and then go and pick up.
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
Very important to test vitamin D, folate, ferritin and B12 at least once year minimum
Get FULL thyroid and vitamin testing privately if necessary
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)
Low vitamin levels are extremely common when hypothyroid, especially with autoimmune thyroid disease
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)
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
Testing options and includes money off codes for private testing
Are you familiar with the theory that they do not check T4 levels once you're on medication? I thought it was a bit odd since my T4 level was a bit on the low side before I started medication, now I have no idea how it is because the doc said they don't test for that. I find this bizarre. How can she know that it's ok to keep me on 50mcg if she hasn't tested my T4. I thought that checking my T4 was the whole of having my bloods done. How do I proceed to finding out full thyroid values and whether I'm on the right dosage? The doctor is adamant that I'm ok now. When I told her I fall asleep in the afternoon, can't lose weight, exercise is out of the question etc she chuckled and told me I'm a woman of a certain age (that old chestnut again) and told me to switch my diet up. I'm always hungry as it is, I'm living on salad and veg and skinless chicken and I've cut carbs. She still said "take it up a notch." Well I'm not living like this for the rest of my life, the ice cream van has just started coming up again. And I LOVE ice cream. Is there any way you think I can get a higher dose of levothyroxine or am I doomed to be tired and fat for the rest of my life?
Are you familiar with the theory that they do not check T4 levels once you're on medication?
Yes and it’s completely INCORRECT
I thought that checking my T4 was the whole of having my bloods done. How do I proceed to finding out full thyroid values and whether I'm on the right dosage?
Yes you are correct….not only is it essential to test Ft4 and Ft3 you must also test vitamin D, folate, B12 and ferritin too
One of the reasons this is by far the busiest forum’s on Healthunlocked
Is there any way you think I can get a higher dose of levothyroxine or am I doomed to be tired and fat for the rest of my life?
Yes …get FULL thyroid and vitamin testing done yourself
You might try to persuade GP to test vitamin D, folate, ferritin and B12
If not ….test these too
Thousands upon thousands of U.K. thyroid patients forced to test privately to make progress
I suggested the ferritin test, as had I not suggested it then the doctor wouldn't have thought about it. So I'm on tablets for the low ferritin. Where can I get a full thyroid testing done?
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)
Testing options and includes money off codes for private testing
Many of us have had to find our own way forward, so congratulations on your first step. As others have said, get your results and post them here and we can help you with the next step. Saying your bloods are normal is an excuse to not look further. I can bet you are underdosed. Good luck and sending a hug.
I bet that cost a small fortune, and I don't think you get much food choices. What happens when you go out for dinner. It must be hard work. I'm not working at the moment due to all my ailments (I do not get sick pay) so it's probably not for me. Well done on your weight loss. 👍
It can be daunting initially…..but actually it’s easy once you get use to it
If your hypothyroidism is autoimmune as confirmed by high TPO or high TG antibodies or ultrasound gluten free diet is often extremely beneficial or essential
Assuming you have high thyroid antibodies 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 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
Your GP needs to read the guidelines for managing a patient once they are on Levothyroxine:
pathlabs.rlbuht.nhs.uk/tft_...
Guiding Treatment with Thyroxine:
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.
You obviously have a critically thinking logic brain - yay! Your doctor sadly doesn’t (sigh)
Are you familiar with the theory that they do not check T4 levels once you're on medication? I thought it was a bit odd since my T4 level was a bit on the low side before I started medication, now I have no idea how it is because the doc said they don't test for that. I find this bizarre.
Yes, so do we 😱😱😱😱
I studied science and it would seem some areas of medical research have departed from scientific rigour and spawned the nonsense so many of us are being subjected to.
Treating TSH rather than patient- wrong wrong wrong
Doctors frequently under medicate as they have been given poor guidelines and if a patient’s TSH and thyroid hormones are not ‘aligned’ the thyroid hormone replacement is WRONGLY sacrificed to keep the TSH - a pituitary hormone in range.
And what is TSH? It’s a pituitary hormone that’s produced to stimulate the thyroid to produce thyroid hormones. So it is one of those eternal conundrums as to why so many so called intelligent people follow these guidelines without question.
That said, there is latitude written into the guidelines but it is subtle and more in the form of general waffle at the start about applying guidelines but if that doesn’t work treat the patient and the guideline dosing of Levothyroxine is frequently at odds with TSH. Doctors prioritise TSH. Unequivocally, patient’s symptoms and thyroid hormone levels should be the priority.
Pinned posts
There’s one on it’s ok to have a low TSH with lots of references and mine on NHS and NICE guidelines- the useful bits. 😊👍
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