I haven't been here for a few years but I am in need of some help again.
I have been having symptoms related to Hypothyroidism for years and I have a large family history of it (mum, maternal grandparent, maternal aunts and my sister all have it).
My test results always come back with my FT4 not low enough or my TSH not high enough to be treated by NHS standards. I was seen by an Endocrinologist who discharged me as they did not believe I had a thyroid problem.
I did go private for a year and was on 50mg Levothyroxine and I felt a lot better, but I can no longer afford the cost of the meds etc.
My most recent blood results were:
TSH: 3.15 mu/L (reference range 0.27 - 4.2 mu/L)
Free T4: 10.4 pmol/L (reference range 12 - 22 pmol/L)
Free T3: 4.3 pmol/L (reference range 3.1 - 6.8 pmol/L)
Previous to that my TSH would go between 1 - 2 mu/L, my T4 would be around 9-11 pmol/L and my T3 would go between 4 and 5 pmol/L.
Since stopping the Levothyroxine in September my nails have gone back to being flaky and ridged, my hair is falling out a lot more, my sex drive has completely tanked, I have gained around half a stone without my diet changing, my energy levels have dropped and a few other things.
I wanted to know if anyone had any success in convincing their doctor to prescribe Levothyroxine with these sorts of results? I am considering writing a letter outlining my concerns to see if that helps.
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saltylu
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Free T4: 10.4 pmol/L (reference range 12 - 22 pmol/L)
Free T3: 4.3 pmol/L (reference range 3.1 - 6.8 pmol/L)
Presumably off Levo, please confirm, we know you stopped Levo in September but we don't know when this test was done. If off Levo, how long since last took it?
Previous to that my TSH would go between 1 - 2 mu/L, my T4 would be around 9-11 pmol/L and my T3 would go between 4 and 5 pmol/L.
Those results are from last Friday. I stopped taking the Levo at the end of September.
OK, thanks so plenty of time for your levels to have settled.
TSH: 3.15 mu/L (reference range 0.27 - 4.2 mu/L)
Free T4: 10.4 pmol/L (reference range 12 - 22 pmol/L)
Free T3: 4.3 pmol/L (reference range 3.1 - 6.8 pmol/L)
So these results do suggest Central Hypothyroidism which is diagnosed (by doctors in the know) when TSH is normal, low or minimally elevated with a below range FT4.
For whatever reason it seems as though your thyroid is not being stimulated to produce thyroxine. Even if nothing was found with the scan a couple of years ago, something is causing this. But the treatment is the same anyway - levothyroxine.
When I was taking Levo my TSH was between 0.9 and 1.2 mU/L, my FT4 was sitting at around 17-18 pmol/L and my FT3 was at around 5 pmol/L.
So assuming that the ranges are the same, then this shows that levothyroxine was working to bring your TSH down to what is normal for someone taking synthetic thyroid hormone replacement, and it brought your FT4 up to between 50-60% through range - still room for improvement if you felt the need but fine if you felt well.
Since stopping the Levothyroxine in September my nails have gone back to being flaky and ridged, my hair is falling out a lot more, my sex drive has completely tanked, I have gained around half a stone without my diet changing, my energy levels have dropped and a few other things.
In my opinion it's pretty clear cut that you need to be on Levo, taking into account your test results when on Levo and now off it your test results plus your symptoms.
I wanted to know if anyone had any success in convincing their doctor to prescribe Levothyroxine with these sorts of results? I am considering writing a letter outlining my concerns to see if that helps.
If your doctor/endo can't see that you need Levo then if this was me I'd make it quite clear that if they can't follow the evidence then I'd be self medicating.
I currently take 2000iu of Vitamin D every day and when my other vitamins were last tested they were all normal levels (that was done as part of my private treatment).
I would be inclined to retest all key nutrients, forget "normal" levels and aim for optimal levels which are:
Vit D - 100-125nmol/L according to the Vit D Society and Grassroots Health, with Grassroots Health's recent blog post recommending at least 125nmol/L.
B12 - top of range for Total B12, and for Active B12 aim for over 100.
Folate - at least half way through range.
Ferritin - half way through range although some experts say that the optimal level for thyroid function is 90-110ug/L.
When taking Vit D we should test twice a year to check levels, and also take D3's important cofactors - magnesium and Vit K20-MK7. Do you take these?
When I last had vitamins checked in February of this year:
Active B12 was over 150pmol/L
Folate was 18.35ug/L (range 3.46 - 19.5ug/L)
Ferritin was 47.9 ug/L (range 13 - 150ug/L)
Vitamin D was 45.9 so that's when I started taking 2000iu of Vitamin D.
I take an Immunace Immune System multivitamin which includes Vitamin K, Selenium, Zinc and Magnesium, as well as the Vitamin D supplements. I cannot afford to privately do Vitamin D blood tests twice a year but I can probably get that done at the GP.
Rather old results now but interpretation of them at the time of testing:
Active B12 and Folate are both very good, in fact your B12 is higher than they can measure which, if not taking a separate B12 supplement, is puzzling.
Ferritin is too low, it should ideally be 82 with that range. You can help raise your level by eating liver regularly, maximum 200g per week due to it's high Vit A content, also liver pate, black pudding, and including lots of iron rich foods in your diet
Don't consider taking an iron supplement unless you do an iron panel, if you already have a decent level of serum iron and a good saturation percentage then taking iron tablets can push your iron level even higher, too much iron is as bad as too little.
With a Vit D level of 45.9nmol/L, to reach the recommended level you'd be looking at supplementing with 5,000iu D3 daily along with cofactors magnesium and Vit K2-MK7.
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. 90-100mcg K2-MK7 is enough for up to 10,000iu D3.
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.
If looking for a combined D3/K2 supplement, this one has 3,000iu D3 and 50mcg K2-MK7. The company has told me the K2-MK7 is the Trans form
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.
Once you've reached the recommended level for Vit D 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 for £29:
I take an Immunace Immune System multivitamin which includes Vitamin K, Selenium, Zinc and Magnesium, as well as the Vitamin D supplements.
Multivitamins aren't recommended here for many reasons and this one is as bad as all of them.
They tend to provide too little of anything to help low levels or deficiencies, usually use the cheapest, wrong form and least absorbable of active ingredients and include things we should test for and only supplement if found to be deficient.
This one contains:
Vit A at 100% of RDA. Vit A is fat soluble and any excess is stored and can lead to toxicity. Taking 100% of RDA on top of whatever our diet provides isn't a good idea.
Vit D at 10ug is 400iu and wouldn't raise the level of a sunburnt flea.
Vit K is the K1 form and this is the blood clotting form, anyone taking a blood thinner such as warfarin should not take K1. It's K2 that is needed for bone health and when taking Vit D.
Folic acid is not recommended, the recommended form is methylfolate.
B12 is cyanocobalamin and again not recommended, the better form is methylcobalamin.
Magnesium is the hydroxide form which is poorly absorbed and used as a laxative.
Iron is included and this affects the absorption of everything else, iron should be taken 2 hours away from other supplements.
Zinc and copper - you don't know if you need them.
Selenium is the selenate form which is not recommended, selenium l-selenomethionine is the recommended form.
Iodine is included at 200mcg. The RDA of iodine is 150mcg and we can easily get this from a normal diet which includes milk, yogurt, cod, haddock, etc. When taking Levothyroxine this contains iodine at 65mcg per 100mcg Levo. We should not take iodine unless tested and found to be deficient. Iodine in solution used to be used to treat overactive thyroid so can make hypothyroidism worse or even bring it on.
All in all the best place for this, and all multivitamin supplements, is the dustbin.
Thank you so much for all of the information. I'm struggling with brain fog at the moment so it's going to take me a bit to go through it all but I will get there!
I had an MRI of my head a couple of years ago and everything was fine then, I also had adrenal tests done and they came back normal too. I currently take 2000iu of Vitamin D every day and when my other vitamins were last tested they were all normal levels (that was done as part of my private treatment).
Yes I managed to get a prescription for thyroxine on the NHS based on all of my symptoms and a TSH of 2.65
Thankfully I managed to speak to a doctor who sensibly listened and agreed that I was very symptomatic. I mentioned that I’d also had a period of improvement on natural thyroid product called Metavive (until they reformulated it).
If I were you I’d probably get the medical records from the private doctor and write a letter with all this info, including blood test results, to explain that this was helping you to feel better.
I will most probably do that, the GP is going to refer me to a different hospital to see their Endocrinology team but he's still refusing to medicate me. He's not my usual GP though so I'm going to address the letter to my normal one and go from there.
Thank you for the idea of getting the information from the private doctor, I didn't think of adding that in!
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so plenty of time for your levels to have settled.
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