Hi everyone, new here. After a GP blood test that was deemed 'normal' despite nearly 10 years of feeling awful with all the classic hypo symptoms (fatigue, weight gain, hair loss, freezing all the time, heart rate of a slug etc.), I asked for the actual results and a previous test from 4 years ago (also 'normal'). TSH was increasing (never picked up on) and T4 at the bottom, so I got a private test that showed antibodies suggesting Hashimoto's, but normal T3, and T4 had gone up in the space of a few weeks.
I'm booked in to see a private thyroid-specialising GP but not til next month, so not on any treatment yet. Just curious about why T4 might have fluctuated so much in a short space of time? I did take the most recent bloods earlier, which I know tends to give higher TSH, but is it the same for T4? I wasn't taking any B supplements yet. Results below. I'll be taking another full private test with vitamin profile before I see the private GP because folate and Ferritin are low (3.6 and 25) and trying to get them up.
Oct 2018 (taken at 10am)
TSH 2.29 (0.35-5)
Free T4 12.2 (9-21)
early March 2023 (taken at 10am)
TSH 4.24 (0.35-5)
Free T4 11.9 (9-21)
late March 2023 (taken at 8am)
TSH 6.1 (0.27-4.2)
Free T4 17.3 (12-22)
Free T3 4.7 (3.1-6.8)
TgA 203.9 (0-115)
TPOAb 227.1 (0-34)
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seveneleven
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Just curious about why T4 might have fluctuated so much in a short space of time?
Probably because you have Hashi's. With Hashi's the immune system attacks the thyroid, and the dying cells deposit their store of hormone into the blood, causing FT4 and/or FT3 to rise - sometimes just a little, sometimes a great deal. This excess hormone is used up or excreted, and the levels go down again.
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Were these tests all private bloods? The NHS will diagnose you with two consecutive TSH results above the reference range. Wherever possible I would recommend getting diagnosed via the NHS as in years to come your GP may refuse to take over your treatment and not prescribe for you. Seeing a private Endo that also works in the NHS may work though for the NHS to accept your diagnosis. Has your GP been alerted to your rising TSH which is now above range? Suggest you make an appintment with them in person.
GreyGoose has answered your FT4 question very well as always.
►If your Ferritin is 25, NICE guidance states it is deficient at less than 30. See GP who will want to run their own tests and hopefully prescribe.
►You have not given a range for folate but if it is below range then the same applies as ferritin. See GP, get NHS bloods run and they should prescribe folic acid. Although you say you have been trying to raise it so what have you been taking?
►Raised thyroid antibodies mean you do have Hashimoto's, autoimmune thyroid didease. Many with autoimmune thyroid disease aka Hashimoto's benefit from a gluten free diet. A smaller percentage of those also need to remove dairy from their diet to feel well.
A large part of being well with hypothyroidism is knowing how to use the system to your advantage and becoming your own health advocate. This takes a bit of knowledge which you are starting to pick up and a reasonable helping of confidence which will come with time. Doctors get limited training in the thyroid and oftentimes we need to lead them to do the right thing.
Thanks Jaydee. The first two tests were with the GP - I was just told everything was normal and nothing to do. The most recent one was private because I wanted more information. I'm aware that NHS tends to prefer waiting until TSH is quite high before actually prescribing, and I want to be able to try NDT, so I'm letting my GP know but am going private so I can have more options. The private doctor also works in the NHS though and communicates with NHS GP, so hopefully that will make things a bit easier.
Re my folate, the range was 3.0-20, so 3.6 technically in range for the lab but definitely not ideal. Same with Ferritin - bottom of their range is 15 (which seems bonkers). So everything marked off as normal, but I know I have symptoms of low levels. I also have gut problems and can't tolerate normal prescribed iron etc. so trying heme iron instead, which is proving much gentler. I'll see next month if it's working though.
Your antibodies are high this is Hashimoto's, (also known by medics here in UK more commonly as autoimmune thyroid disease).
About 90% of primary hypothyroidism is caused by autoimmune thyroid disease
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.
Low vitamin levels are extremely common when hypothyroid, especially with autoimmune thyroid disease (Hashimoto’s or Ord’s thyroiditis)
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 trying AFTER been tested for coeliac
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 or buy test online for under £20, just to rule it out first
Assuming test is negative you can immediately go on strictly gluten free diet
(If test is positive you will need to remain on high gluten diet until endoscopy, maximum 6 weeks wait officially)
Trying gluten free diet for 3-6 months. If no noticeable improvement then reintroduce gluten and see if symptoms get worse
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
NDT is a high cost option so long as you are aware of that. Also virtually impossible to get via the NHS. Do keep your GP in the loop so that the NHS will accept your diagnosis.
►Folate - aim for a level of 20. Recommend taking an active/methyl (should say on label) B complex which contains 400mcgs folate (also B12). Occasionally some people require a higher dose of folate, often due to having MTHFR genes in which case buy a separate 400mcgs methylfolate and slowly add to your dose over several weeks. This B complex has all the right vitamins at a not unreasonable cost for 90 days supply. amazon.co.uk/Liposomal-Soft...
For gut problems I would recommend looking into the low FODMAP diet. Also taking a good probiotic or eating foods such as saurkraut or kefir to repopulate the gut microbiome. monashfodmap.com/ibs-centra...
As thyroid patients we do need to become our own health advocates with GP’s and Endocrinologists. They get little training in how to make us feel well, instead relying on lab numbers on paper. Take some time to read up on your condition, learn and get your confidence up. This will stand you in good stead when discussing your condition and challenging things that medic say.
Thanks, yep I know it's more costly all round unfortunately, but should be able to manage it. I'm seeing the GP soon to update on everything so she's all aware. She's nice enough but just not that well versed in thyroid issues. I have Ehlers-Danlos syndrome as well, so I'm only too familiar with the extra labour you have to do just to get most doctors well informed. To be honest, I've mostly avoided doctors for several years because I was just getting dismissed for the thyroid-esque complaints and gave up.
For folate, I'm taking methyl B complex because B12 is in the lower half of the range and probably needs boosting as well. Have been relatively low FODMAP and gluten and dairy free for a long time and just starting S.Boulardii (have histamine intolerance as well just for fun). I had the misfortune of being prescribed Doxycycline for 4 years as a teenager for acne (I know). Oddly enough, gut was never really the same after that!
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