As the title says, over the last 6 months or so my thyroid blood results have been all over the place.
Back in July, I was borderline hypothyroid and lost a bunch of weight.
I got tested again in August and I was severely hypothyroid and was continuously gaining weight and I was struggling with all of those awful hypo symptoms.
Dr put me on Synthroid (lowest dose).
I have had 2 tests since then. First one my TSH was 2.01.
I saw the Dr after this and she said she wondered if my thyroid problems were caused by a virus rather than being hypo.
Had another test and TSH has come back at 2.34.
My results are normal but my thyroid has been acting up for years (I also have TPO antibodies).
While I no longer have the extreme depression and fatigue that came with the hypo episode, ever since then, I just cannot shift any weight and although I am no longer as tired as I was, I am still struggling with pretty debilitating fatigue.
I am not particularly overweight but I am much larger than I used to be and this extra weight is making me antsy.
I have never really struggled with my weight before and even though my thyroid is ostensibly normal I just know that my weight is not coming off the way that it should.
Sorry for the long rant...does anyone have any thoughts as to what is going on?
I still feel like my thyroid is to blame but I can't get the doctor to do any further investigations when the results are coming back as normal.
If you have high antibodies, then you have Hashi's, and that explains why your levels fluctuate.
A TSH of over 2 is not 'normal'. It may be in the so-called 'normal' range, but that doesn't make it 'normal' for you. Once on thyroid hormone replacement, the TSH should come down to 1 or under, and after that, the TSH level can no-longer be used on its own for anything, because it rarely reflects thyroid status. If your doctor is dosing by the TSH, you will never manage to stabilise your levels. The most important number is the FT3, but she should at least be doing an FT4.
How much Synthroid are you taking now? Because it sounds as if you are under-medicated. Just putting someone on 25 mcg and leaving them on it, is not going to do them any good. You should have a blood test every six weeks and an increase of 25 mcg until all your symptoms are gone. You probably don't need any further investigations, just a few increases in dose.
Well firstly, the TSH isn't a "thyroid blood", it's a hormone of the pituitary gland and cannot be used in isolation, to judge what is happening to your thyroid, nor to dose your replacement hormones. If your thyroid was beginning to fail, you would expect your TSH to be rising; and if you then took exogenous hormones, you would expect it to reduce - why is your Dr surprised that's what happened? However, when you add in too low a dose and remain on that low dose too long, after an initial improvement you can then experience a deterioration - the low dose interrupts what residual endogenous hormone production is taking place but isn't enough to make up for the shortage. Hence the need to start on the correct dose, and adjust upwards according to test results and symptoms, in a timely way, until you are euthyroid/symptom-free. However that can only be done effectively by measuring your FT3 & FT4 levels, TSH is not enough. However, an added factor is autoimmunity, and if you have Hashimoto's rather than non-autoimmune hypothyroidism, you might expect hormone and antibody levels to vary as the disease attacks your thyroid. You say you "have TPO antibodies", but were they above the reference range? (Even healthy euthyroid people can have a certain level in their blood). Another factor is that our thyroid function is not taking place in isolation; and will be affected by our other hormones, by our nutrition, by other drugs being taken, by other disorders (if we have one autoimmune disorder we are at greater risk of developing another), by conditions associated with autoimmunity such as gut & absorption problems, sensitivity to gluten and dairy, even by how we take our thyroid meds (with water only, in the absence of food, and away from other meds & supplements) etc etc. And our test results may differ if we don't have bloods drawn consistently each time - before 9am, having fasted, and without having taken our levothyroxine in the previous 24 hrs. Only a full panel of tests, including vitamins and minerals, will identify what might be going on. As for "normal", the only normal is what is normal for you; results within the reference range may have only a little relevance to you, and being just somewhere within the range is not necessarily optimal for you and sufficient to address your symptoms. It's not possible to be more specific in the absence of your thyroid hormone and antibody results, and your actual dose, but it sounds like you have an inexpert Dr who is keeping you deliberately under-medicated.
Hi thanks for replying.
Thank you for explaining what may be going on.
I am just getting so frustrated with my doctor.
I last had my TPO antibodies tested in February 2018 and they were at 144.
I don't know if that is high or not but I know it is well above the 'normal' range. Not been diagnosed with Hashi's. All I have been told is that they increase my likelihood of having thyroid problems in the future.
I just can't get the doctor to test them again. I have asked with each round of tests to have the antibodies checked and she just said that they were irrelevant as they would eventually just result in my thyroid going underactive anyway.
During this period I have constantly complained to my Dr about fatigue. I went in once because my blood pressure had tanked to 80/50 with a pulse of 53 and I was told that was normal for a young woman. But I felt dreadful!
Sorry, ranting again... I know there is something wrong with my body as I have persistent symptoms that are massively affecting my quality of life. I am just struggling to get the doctor to perform any tests beyond the TSH and a FBC.
Do you have any tips on how to speak to the doctor to finally start getting to the bottom of this. I find it unacceptable now that I am complaining of a complete inability to lose weight, fatigue, skin problems, hair loss, body aches etc.. and I continually get told that I am fine. I am really not fine.
Your main issue seems to be getting the doctor to take you seriously. If despite your best efforts you are left unsatisfied, say so and ask for a second opinion. Check the TUK list of suitable endocrinologists and specify one of those.
Your antibodies are high this is Hashimoto's, (also known by medics here in UK more commonly as autoimmune thyroid disease).
About 90% of all primary hypothyroidism in Uk is due to Hashimoto's
Essential to test vitamin D, folate, ferritin and B12.
Always get actual results and ranges. Post results when you have them, members can advise
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.
According to Izabella Wentz the Thyroid Pharmacist approx 5% with Hashimoto's are coeliac, but over 80% find gluten free diet helps, sometimes significantly. Either due to direct 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 slowly lower TPO antibodies
Ideally ask GP for coeliac blood test first, just to rule it out (you need to be eating high levels of gluten for test)
For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also extremely important to test vitamin D, folate, ferritin and B12
Low vitamin levels are extremely common, especially if Thyroid antibodies are raised
All thyroid blood tests should ideally be done as early as possible in morning and fasting. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)
Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies or vitamins
Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have special offers, Medichecks usually have offers on Thursdays, Blue Horizon its more random
Come back with new post once you have results and ranges for advice on what vitamins need supplementing
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