I asked a question a couple of weeks ago and people told me to get my previous test results and come back. I've got the results! I've pasted my previous question below to save repeating it all.
So, basically, back in February 2020 I started noticing some of my underactive thyroid symptoms returning I had the following test results:
February 2020:
T3 3.3
T4 18.3
TSH 0.97
My next test, in May this year (when symptoms were much worse than in 2020).
May 2021: TSH 1.83
I've had no tests since May but my symptoms have been spiriling in the past 3 months.
For context, I kept a record of when I was symptom free and my TSH was 0.03 at that time. But apparently that's too low, so I'm expected to live with symptoms so that the numbers are right?
Anyhow. I'm not an expert but I think that probably my TSH going up is what could be causing my symptoms?
What tests should I ask my GP for, and what results do I want to see?
I'm at a bit of a loss, all I know is that I feel rubbish, I tick every one of the NHS hypothyroidism symptoms, and that I can't rely on my GP to necessarily do the right thing without prompting.
Previous post-
When I last had my thyroid levels checked my GP said they were 'fine', I have no idea what the numbers were but I know they only test one thing (maybe T3?).
I'm tired all the time, I'm sleeping 12 hours a night and am still tired. I'm miserable and irritable all the time. Despite very carefully watching what I eat I'm piling weight on. And my periods have become irregular.
I feel I need to tell my GP what to do rather than ask. I used to have an amazing GP who had a special interest in thyroid conditions but since she retired a few years ago my new GP seems very under educated on the matter. (He suggested I come off thyroxine completely because there is no evidence it does any good??!)
My question is, what do I want my GP to do? What tests do it want him to run? How do I interpret the results to ensure my dose is correct?
I currently take 100mcg of thyroxine for hypothyroidism. I've been on Thyroxine since 2010.
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Thank you for coming back with your results. However, to be able to interpret them we must have the reference ranges that come with them as ranges vary from lab to lab. Do you have online access to your results, if so you may find the ranges with the results there. If not, do you have a print out of your results, if so the ranges are usually on the print out next to the result.
You really need up to date tests but your surgery may only do them once a year. However, if you contact them and say you have symptoms and can they do a full thyroid function test they may be willing to do so. You need TSH, FT4 and FT3 tested. Most labs only do TSH and will only add the FT4 if TSH is out of range, possibly they may add FT3 then as well. If you can't get them done at your surgery consider doing a private test with one of the companies mentioned in reply to your previous post, following the advice about how to do the test. Also, it would be worth doing the full thyroid/vitamin panel because optimal nutrient levels are essential for thyroid hormone to work properly.
For accurate measure of thyroid hormones, we always advise the following:
* Blood draw no later than 9am. This is because TSH is highest early morning and lowers throughout the day. If looking for a diagnosis of hypothyroidism, an increase in dose of Levo or to avoid a reduction then we need the highest possible TSH
* Nothing to eat or drink except water before the blood draw. This is because eating can lower TSH and coffee can affect TSH.
* If taking thyroid hormone replacement, last dose of Levo should be 24 hours before blood draw, if taking NDT or T3 then last dose should be 8-12 hours before blood draw. Adjust timing the day before if necessary. This avoids measuring hormone levels at their peak after ingestion of hormone replacement. Take your thyroid meds after the blood draw. Taking your dose too close to the blood draw will give false high results, leaving any longer gap will give false low results.
* If you take Biotin or a B Complex containing Biotin (B7), leave this off for 7 days before any blood test. This is because if Biotin is used in the testing procedure it can give false results (most labs use biotin).
These are patient to patient tips which we don't discuss with phlebotomists or doctors.
Super. Thanks you. My test is at 9.25am, I can't do earlier than that as I need to drop the children at school first, hopefully it won't make a huge difference?
I'll stop taking all my vitamins a week before, and won't take my thyroxine on the day of the test.
No need to stop any other vitamins except biotin/B complex for 3-7 days before the test. Other vitamins just take after the test on the day, they wont make any difference to your thyroid tests at all, it's just the biotin if you take it that can affect test results when biotin is used in the testing procedure.
Well TSH is often “too low” in GP’s eyes when a thyroid patient is optimally treated
TSH is not a thyroid hormone…..it’s the message from pituitary telling thyroid to work….if you’re adequately treated it’s not a problem if TSH is low ….providing Ft3 is not over range
How much levothyroxine were you taking when TSH was 0.03?
Approx how much do you weigh in kilo
Do you always get same brand levothyroxine at each prescription
What vitamin supplements are you currently taking
Suggest you get FULL thyroid testing done…likely to need dose increase in levothyroxine
For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested.
Very important to test vitamin D, folate, ferritin and B12
Low vitamin levels are extremely common, especially with autoimmune thyroid disease (Hashimoto’s or Ord’s thyroiditis)
Low vitamin levels tend to lower TSH
Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water 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
I was on 100mcg when my levels were 0.03 and I'm still on 100mcg now. Though I was 30 then and I'm 40 now, so maybe that makes a difference?
I take a regular multivitamin (at night so as not to interfere with my thyroxine) and also take fish oil.
From the time I was stable on meds until recently (about 10 years) my weight has always been around 52kg. In the last 6 months, despite absolutely nothing changing in my diet or exercise I've put weight and am now 59kg. I've started calorie tracking so I know I'm not consuming hidden calories, but the weight keeps going on!
I don't always get the same brand. Last year, when my symptoms started I asked if my GP could prescribe a specific brand as I was getting something different every time. They said no, so I've switched pharmacies and it's generally the same brand now, with only occasional changes.
I've requested all the tests you listed so hopefully when I get tested next week they will do them all and then I will post my results here.
the best paper on this that I have seen indicates that a TSH of 0.03-0.5 is best on therapy. Above that is insufficient and below MAY or MAY NOT indicate slight overdosing
Interestingly, patients with a serum TSH below the reference range, but not suppressed (0.04–0.4 mU/liter), had no increased risk of cardiovascular disease, dysrhythmias, or fractures. It is unfortunate that we did not have access to serum free T4 concentrations in these patients to ascertain whether they were above or within the laboratory reference range. However, our data indicate that it may be safe for patients to be on a dose of T4 that results in a low serum TSH concentration, as long as it is not suppressed at less than 0.03 mU/liter. Many patients report that they prefer such T4 doses (9, 10). Figure 2 indicates that the best outcomes appear to be associated with having a TSH within the lower end of the reference range.
The accepted conversion ratio when on T4 - Levothyroxine only is said to be 1 - 3.50 - 4.50 T3/T4 with most people feeling at their best when they come in at around 4 or under.
So to find your conversion ratio on T4 only you simply divide your T3 into your T4 and I'm getting yours coming in at 5.55 showing you way out from the centre and your conversion of T4 which is a pro hormone into T3 the active hormone that runs the body, compromised.
Conversion of T4 into T3 can be compromised by low levels of vitamins and minerals, especially those of ferritin, folate, B12 and vitamin D plus any physiological stress ( emotional or physical ), dieting, depression, inflammation and ageing.
So whilst we can't control everything I'd suggest getting the vitamins and minerals checked out, and though you may find you are in the NHS ranges, we need optimal levels to assist the thyroid hormone replacement to work well, and you may need to self supplement these when we see your results and ranges.as many of us find ourselves having to do this to stay well
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