I am due to go for monitoring blood tests next week and would like some advice on what tests to ask for. Based on my last tests I feel my GP will only want to test TSH.
Initially my GP did a thyroid function test which tested TSH and FT4 (Early July):
TSH 52.6 (0.27-4.2), FT4 3 (11-22)
I was placed in 75mcg of levothyroxine and told I’d feel much better in 3-4 weeks.
Then 6 weeks later at request of endo, GP tested TSH and TPO only:
TSH 21.4 (0.27-4.2), TPO 600 (no range given)
I was diagnosed the Hashimoto’s at a hospital appt based on above test results and a USS which showed my thyroid was severely inflamed. I was given a week of steroids to reduce inflammation and my Levo dose increased to 100 mcg.
I am just beginning to feel a little better. I am
Swelling of neck is reduced so I can now sleep and swallow without extreme discomfort but I am still exhausted and unable to work full time or do very much. When I go to get essential shopping in the car, I plan it for first thing in the day when my energy is highest. I get two bags maximum and need to go to bed when I get home. So I do feel my levels are not yet anywhere near stable.
I was dairy free prior to this diagnosis but have gone gluten free also which has improved stomach pain and bloating. I avoid soya and take a Vit D, selenium and turmeric supplement each evening (I also have inflammatory arthritis). I also try to have a daily cool shower to reduce inflammation but can only do this on good days when I have the energy to shower.
I have read other posts and advice so will be going for TSH test when the centre opens at 8am following your suggestions.
What I would like to know is what other tests can I reasonably ask for from my GP under the NHS. I have not had T3 tested at any point.
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ZoMa
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Just testing TSH on it's own is totally inadequate, it's not an indicator of thyroid status. It's fine for diagnosing thyroid disease, but once on Levothyroxine it's pretty useless, it's not a thyroid hormone, it's a pituitary hormone which tells the thyroid what to do. The thyroid hormones are FT4 and FT3 and it's these tests which give us the information that we need.
So really you need the following tests:
TSH
FT4
FT3
although you may or may not get FT4 done, and unlikely to get FT3 done (which is why hundreds of us here do private tests with our recommended labs).
You don't need thyroid antibodies testing again, you know you have Hashi's and even though antibody levels fluctuate, even if they are low you will still have Hashi's.
Hashi's can cause low nutrient levels and deficiencies so it's important to test these, so you can ask for
Vit
D
B12
Folate
Ferritin
again, your GP may or may not be willing to do them all.
I avoid soya and take a Vit D
Did you test before starting Vit D? If not then you should have. We test our level and if it's necessary to supplement then the dose is based on that level in order to reach the level recommended by the Vit D Council and Vit D Society (which is 100-150nmol/L). Then we retest 3 months after starting the supplement. Once we reach the recommended level we reduce to a maintenance dose because excess Vit D gets stored and can lead to toxicity. Also, there are important cofactors needed when taking Vit D - are you taking these? They are magnesium which helps the body convert D3 into it's usable form, and Vit K2-MK7 which directs the extra calcium (that is absorbed from food when taking Vit D) to bones and teeth where it is needed and away from arteries and soft tissues where it can cause problems.
So you can see that it's essential to test before supplementing so that we know we need the supplement and can work out the correct dose.
It can take many months after starting Levo to find our optimal dose and feel well. Unfortunately, Hashi's can complicate things because fluctuations in symptoms and results can occur with Hashi's.
Some Hashi's information:
Most doctors dismiss antibodies as being of no importance and know little or nothing about Hashi's and how it affects the patient, test results and symptoms. You need to read, learn, understand and help yourself where Hashi's is concerned.
Some members have found that adopting a strict gluten free diet can help, although there is no guarantee.
Gluten contains gliadin (a protein) which is thought to trigger autoimmune attacks so eliminating gluten can help reduce these attacks.
You don't need to be gluten sensitive or have Coeliac disease for a gluten free diet to help.
Supplementing with selenium l-selenomethionine 200mcg daily is said to help reduce the antibodies, as can keeping TSH suppressed.
I was given a week of steroids to reduce inflammation and my Levo dose increased to 100 mcg.
Retesting should take place 6-8 weeks after every dose change to check your levels. I expect you have a fair way to go considering your last TSH was 21.4 (0.27-4.2). So ask for a print out of all your results each time you are tested (and post them on the forum for comment ifyou wish).
Your new test should show a reduction in TSH but I expect it will still be over range. If so you will need to continue increasing Levo, 25mcg at a time and retesting every 6-8 weeks. The aim of a treated Hypo patient on Levo, generally, is for TSH to be 1 or below with FT4 and FT3 in the upper part of their reference ranges.
Thank you. This really helps. I will ask my GP first then test privately if I am unable to get these tests.
I didn’t test vit D levels so will do that. I just restarted the maintenance winter dose I had been taking before the summer.
Also I have read about B12. My dad and I have same blood group. He is deficient in B12 and has B12 injections - well he did until the pandemic. Currently he is on tablet supplements until they can resume. Before being diagnosed with Hashimoto’s I had wondered if my fatigue and brain fog was a B12 deficiency.
He is deficient in B12 and has B12 injections - well he did until the pandemic.
I don't understand why they are doing this. Presumably they have said to not go to the surgery for the injections so they just write a prescription instead.
I have to have regular monitoring liver function tests every 3 months. Nobody seemed to know what's going on at our surgery other than they do a lot of telephone appointments rather than face to face. So I rang last week as it's now been 6 months since my last test. I asked what is happening about regular monitoring tests and was told that if I am happy to go to the surgery then it's fine and they booked me an appointment for Tuesday.
There must be many people in the position of needing regular monitoring checks of one sort of another, are these being denied?
As your dad has B12 deficiency, it's not beyond the realms of possibility that you might have it too, so it's important for the GP to test this, use the "family connection" as a lever for the importance of this test to be done. Also, because B12 and folate work together, ask for folate to also be tested.
Vitamin D deficiency is frequent in Hashimoto's thyroiditis and treatment of patients with this condition with Vitamin D may slow down the course of development of hypothyroidism and also decrease cardiovascular risks in these patients. Vitamin D measurement and replacement may be critical in these patients.
Evidence of a link between increased level of antithyroid antibodies in hypothyroid patients with HT and 25OHD3 deficiency may suggest that this group is particularly prone to the vitamin D deficiency and can benefit from its alignment.
Same applies to low B12 - extremely common in hypothyroid patients
All patients who are hypothyroid should have B12 tested
There is a high (approx 40%) prevalence of B12 deficiency in hypothyroid patients. Traditional symptoms are not a good guide to determining presence of B12 deficiency. Screening for vitamin B12 levels should be undertaken in all hypothyroid patients, irrespective of their thyroid antibody status. Replacement of B12 leads to improvement in symptoms,
Patients with AITD have a high prevalence of B12 deficiency and particularly of pernicious anemia. The evaluation of B12 deficiency can be simplified by measuring fasting serum gastrin and, if elevated, referring the patient for gastroscopy.
Levothyroxine can decrease serum homocysteine level partly; still its combination with folic acid empowers the effect. Combination therapy declines serum homocysteine level more successfully.
You could be sensitive to the proteins of milk - or the lactose.
Typically, but not universally, lactose intolerance is due to inability to make the enzyme lactase which is required to break down lactose.
But real milk would present both lactose and proteins.
There are two/three products which are lactose-free.
UK Levothyroxine Tablets
➖➖➖➖➖➖➖➖➖➖➖➖➖➖
Last updated 13/09/2020.
This is a list of currently marketed levothyroxine tablets in the UK.
Please note that re-branding (whether by a manufacturer or as an ‘own label supplier’) – which has happened with several products – does not mean any change to formulation.
❗ – Take particular note of the actual product which varies by dosage.
🟢 PIL – Patient Information Leaflet
🟣 SPC – Summary of Product Characteristics document
🟢🟣 Single document combining typical PIL and SPC information
—————————————————————
Only products which definitely contain lactose are identified (🥛 contains lactose). Please always check other products. Where products are ‘own label supplier’, check the marketing authorisation holder for the specific product.
There are links to product information on the MHRA (Medicines and Healthcare products Regulatory Agency) website. products.mhra.gov.uk/ These are the latest versions known.
If there is anything inaccurate in this information, please let me know by Private Message, or on the forum:
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Vast majority of Hashimoto’s patients are gluten intolerant not coeliac....but obviously many medics only recognise coeliac as “real disease” and dismiss gluten intolerance as some airy fairy affectation
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.
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