I feel awful, I have no quality of life and the past few months I am beyond exhausted.
For this reason I ordered private thyroid tests as my GP kept telling me my results were normal or borderline and just needed monitoring. Here are my past results, private test results and latest GP results. Can anyone shed any light please?
Since my latest results came in my GP has made me wait over a week for a “routine” telephone consultation to discuss the results, which isn’t happening until tomorrow. I had to do a written request for a print out as they were making me wait.
Any ideas or advice as to what I should be discussing/asking the GP tomorrow please.
I am very confused and feeling completely exhausted.
THANK YOU so much for reading.
Ally
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Allyfin1
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Can you please add the reference ranges for your thyroid tests so that we can interpret them.
Thyroglobulin antibodies = 157.1
TP antibodies = 230.7
Knowing what the different ranges are for these, they are both over range and confirm autoimmune thyroid disease, known to patients as Hashimoto's. This is where the immune system attacks and gradually destroys the thyroid resulting in hypothyroidism.
If you have an over range TSH with raised antibodies, an enlightened doctor will diagnose and start treatment rather than waiting for TSH to go over 10 which is normal for Primary Hypothyroidism.
OH Vit D = 52 (75-175)
The unit of measurement for this will be nmol/L (important to differentiate between nmol/L and ng/ml).
This result is low but unlikely to be prescribed D3 by your GP as it just scrapes into the "adequate" category.
The Vit D Society and Grassroots Health recommend a level of 100-150nmol/L, with a recent blog post on Grassroots Health mentioning a study which recommends over 125nmol/L.
To reach the recommended level from your current level, you could supplement with 4,000-5,000iu D3 daily.
Retest after 3 months.
Once you've reached the recommended level then a maintenance dose will be needed to keep it there, which may be 2000iu daily, maybe more or less, maybe less in summer than winter, it's trial and error so it's recommended to retest once or twice a year to keep within the recommended range. This can be done with a private fingerprick blood spot test with an NHS lab which offers this test to the general public:
Doctors don't know, because they're not taught much about nutrients, but there are important cofactors needed when taking D3. You will have to buy these yourself.
D3 aids absorption of calcium from food and Vit K2-MK7 directs the calcium to bones and teeth where it is needed and away from arteries and soft tissues where it can be deposited and cause problems such as hardening of the arteries, kidney stones, etc.
D3 and K2 are fat soluble so should be taken with the fattiest meal of the day, D3 four hours away from thyroid meds if taking D3 as tablets/capsules/softgels, no necessity if using an oral spray.
For D3 I like Doctor's Best D3 softgels, they are an oil based very small softgel which contains just two ingredients - D3 and extra virgin olive oil, a good quality, nice clean supplement which is budget friendly. Some people like BetterYou oral spray but this contains a lot of excipients and works out more expensive.
For Vit K2-MK7 I like Vitabay or Vegavero brands which contain the correct form of K2-MK7 - the "All Trans" form rather than the "Cis" form. The All Trans form is the bioactive form, a bit like methylfolate is the bioactive form of folic acid.
Magnesium helps D3 to work. We need magnesium so that the body utilises D3, it's required to convert Vit D into it's active form, and large doses of D3 can induce depletion of magnesium. So it's important we ensure we take magnesium when supplementing with D3.
Magnesium comes in different forms, check to see which would suit you best and as it's calming it's best taken in the evening, four hours away from thyroid meds if taking magnesium as tablets/capsules, no necessity if using topical forms of magnesium.
This is below range and suggests B12 deficiency and possibly Pernicious Anaemia (one cause of B12 deficiency) and you may very well require B12 injections.
If you do have any then list them to discuss with your GP and ask for testing for B12 deficiency and Pernicious Anaemia. Do not take any B12 supplements or folic acid/folate/B Complex supplements before further testing of B12 as this will mask signs of B12 deficiency and skew results.
Ferritin = 183 (13-150)
This may possibly be raised due to your Hashi's. Ferritin can be raised when there is inflammation and Hashi's can cause inflammation. Generally ferritin is recommended to be about half way through range.
July 2021- serum TSH = 9.16m/uL
This result is so close to the level where Primary Hypothyroidism is diagnosed (tht level being 10) that it's unfair of your GP to not consider diagnosing and treating.
Serum T4 = 11pmol/L
Can't comment without range but if below range GP should not have hesitated to diagnose and prescribe Levo.
Serum vitamin B12 = 204ng/L.
Need range. This is serum Total B12 as opposed to the Active B12 test above, and I suspect it is in range but close to the bottom. Active B12 is said to be the better test as it measures the amount of B12 available to be taken up by the cells but rarely done on the NHS. Follow suggestions above about getting further testing.
Serum folate = 5.4ug/L
Again, need range but it will be low but not deficient. Don't do anything about this until further testing of B12 has been carried out and B12 injections started (or supplements).
I meant reference ranges for the old results but no matter, they're irrelevant now anyway, it's only your recent results that count.
Looking at your previous post you made in June I gave you all the same information about your nutrient levels then as I have above. What has happened since, have you started supplementing as advised then? Have you asked your GP to test for B12 deficiency and pernicious anaemia as advised then?
Your folate is worse now than it was then.
It is absolutely essential that your nutrient levels are optimised.
I gave you information about Hashi's back then and suggested it may be worth trialling a gluten free diet. Have you started this?
"I don't understand what the differences in the results over the 3 months means either"
Your TSH has risen to almost 10 and it was just over range before. Although the reference ranges are slightly different between the two tests, hypothyroidism is diagnosed when TSH goes over 10. You are more hypothyroid now that you were last time as far as your TSH is concerned.
Your FT4 was below range last time and this time it is within range but very low at just 19% through it's range.
The fact that you have an over range TSH with a normal FT4 then this is classed as subclinical hypothyroidism, and as you've had two over range TSH results then you should be diagnosed with this and started on a trial of Levo, see:
If the TSH level is above the normal reference range, the free thyroxine (FT4) level should be measured in the same sample.
.....
Suspect a diagnosis of subclinical hypothyroidism if TSH levels are above the normal reference range and FT4 is within the normal reference range.
* In non-pregnant people, repeat TFTs 3–6 months after the initial result to exclude other causes of a transiently raised TSH and to confirm the diagnosis.
1.54 Consider a 6-month trial of levothyroxine for adults under 65 with subclinical hypothyroidism who have:
* a TSH above the reference range but lower than 10 mlU/litre on 2 separate occasions 3 months apart, and
* symptoms of hypothyroidism.
If symptoms do not improve after starting levothyroxine, re-measure TSH and if the level remains raised, adjust the dose. If symptoms persist when serum TSH is within the reference range, consider stopping levothyroxine and follow the recommendations on monitoring untreated subclinical hypothyroidism and monitoring after stopping treatment.
So there you have all the information needed to show your GP and get a diagnosis. You need to make an appointment with your GP, face to face if possible and take someone with you who will speak up on your behalf if necessary.
If you get nowhere with your current GP then you will need to see another one or change practices.
Yes, I completely took on board all of your help from my last post in June, but when I presented it all to my GP he was pretty unconcerned until he had done his own set of NHS tests.
I didn't supplement anything in the meantime as I wanted him to be able to get the full picture as he obviously wants to rely on the NHS ones. For this reason I also haven't gone gluten free either but I've been reading up on how beneficial this may be.
I have considerable mental health and anxiety issues and my GP practice is incredibly dismissive, very difficult to communicate with and almost impossible to get an appointment with especially face-to-face. It's even worse since the pandemic and it seems it's the same situation among all the GP practices in my community.
If you try to be your own advocate you get tarred as an awkward, troublemaking, neurotic, hyperchondriac. Its incredibly damaging to ones self esteem and mental welfare. Even more reason why the support and help of informed people like you are so important to those in my position.
So, once again, I am very grateful for all your input, time and effort replying to me. I will take it all forward with me, especially tomorrow during my GP appointment.
Bloods should be retested 6-8 weeks after each dose change or brand change in levothyroxine
B12 is EXTREMELY low. You need full testing for Pernicious Anaemia before starting on B12 injections or daily B12 supplements plus folate or vitamin B complex
So, I’ve just had the telephone consultation with GP. It had been made for me because they wanted to discuss my results but he didn’t even have that information and said he’d been asked to call me like I had made the appointment! Not a great start.He proceeded to tell me my vitamin b12 levels are normal. ?.? I tried to point out the results of my private test which was Active B12 levels but he had no idea what I was saying and said I was welcome to take an over the counter supplement but as far as they’re concerned my levels are normal.
He then told me my thyroid levels mean I am subclinical and we’ll check again in 3-4 months!
I had to really bolshy and tell him I had been doing my research and asking advice from here and Thyroid UK etc., that my quality of life is nonexistent, that I have so many symptoms. He clearly wanted to end the call then, got dismissive but eventually said he would consult a thyroid specialist because he “had no strong feeling either way” as to treating me for hypothyroidism and he told me my antibody levels are meaningless.
I feel a bit happier now he’s going to refer to a thyroid specialist, maybe they will be more informed and I can get the treatment I need. But I have at least another 2 weeks to wait again now. 😫
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