I started in 1 grain NDT a year ago plus 50mg thyroxine. Felt amazing. All my hypothyroid symptoms went away. Best I have felt for 20 years. GP took TSH bloods recently (nothing else) said my levels were too low and reduced my thyroxine to 25mg 3 months ago. I feel miserable and my hypothyroid symptoms are all back. My heart rate has fallen to 56 beats per min resting and I have no energy to exercise! What to do now?!
Thanks
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Rokko
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You have mixed up some of your results there. This is what they should be:
TSH - 0.20 mIU/L (Range: 0.27 - 4.2)
FT3- 4.6 pmol/L (Range: 3.1 - 6.8)
FT4 - 10.4 pmol/l (Range: 12 - 22)
CRP - 0.7 mg/l (Range: 0 - 5)
Ferritin - 91 ug/L (Range: 13 - 150)
Folate - 5.3 ug/L (Range: > 2.9)
Active B12 - 49 pmol/L (Range: 25.1 - 165)
Vit D - 64 nmol/L (Range: 50 - 200)
TG antobidy - 20.2 IU/mL (Range: 0 - 115)
TP antibody - 110.0 IU/mL (Range: 0 - 34)
GP took TSH bloods recently (nothing else) said my levels were too low and reduced my thyroxine to 25mg 3 months ago.
Do you mean that you are on 25mcg Levo only, or 25mcg Levo plus 1 grain NDT?
If you can please clarify that I can then comment on your thyroid results.
Can you also confirm whether you did your test as we always advise here:
* Blood draw no later than 9am. This is because TSH is highest early morning and lowers throughout the day. If looking for a diagnosis of hypothyroidism, an increase in dose of Levo or to avoid a reduction then we need the highest possible TSH
* Nothing to eat or drink except water before the blood draw. This is because eating can lower TSH and coffee can affect TSH.
* If taking thyroid hormone replacement, last dose of Levo should be 24 hours before blood draw, if taking NDT or T3 then last dose should be 8-12 hours before blood draw. Adjust timing the day before if necessary. This avoids measuring hormone levels at their peak after ingestion of hormone replacement. Take your thyroid meds after the blood draw. Taking your dose too close to the blood draw will give false high results, leaving any longer gap will give false low results.
* If you take Biotin or a B Complex containing Biotin (B7), leave this off for 7 days before any blood test. This is because if Biotin is used in the testing procedure it can give false results (most labs use biotin).
These are patient to patient tips which we don't discuss with phlebotomists or doctors.
I can say that your raised antibodies suggest autoimmune thyroid disease, known to patients as Hashimoto's. Did you already know this?
As for your nutrients:
Ferritin is good, this is recommended to be half way through range.
Folate is quite low. The range is 2.9-14.5 and folate should be at least half way through range. Eating folate rich foods can help, as can a good quality, bioavailable B Complex such as Thorne Basic B but see below**
Active B12 is low. According to Viapath at St Thomas' Hospital Active B12 below 70 should be tested for B12 deficiency:
If you do 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.
Vit D is on the low side. The Vit D Society and Grassroots Health recommend a level of 100-150nmol/L.
To reach the recommended level from your current level, you could supplement with 3,000-4,000iu 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.
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. 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.
Don't start all supplements at once. Start with one, give it a week or two and if no adverse reaction then add the next one. Again, wait a week or two and if no adverse reaction add the next one. Continue like this. If you do have any adverse reaction then you will know what caused it.
Yes thank you SeasideSusie. I was copying and pasting on my phone and it got muddled.To answer your questions:
-I was on 50mg levo and 1 grain NDT but recently GP reduced it to 25mg levo and 1 grain NDT.
-I did my test at 910am. I took my levo 8am the day before and my last dose NDT fell at 3pm the day before. I had cornflakes and goats milk for breakfast with chai tea (unsweetened). I do not drink coffee. I have never been told to not eat beforehand. I did not know that.
-I stopped my methylated B12, methyl folate and vit D for 3 weeks before the test so as to see where I am without them. I do need more vitamin D in winter. I take all my vitamins with dinner as this is furthest from my NDT and levo doses.
-I do have Hashimotos. Yes.
-I do not take magnesium. But will look into this.
Thank you for all your input. You are a font of knowledge!
-I did my test at 910am. I took my levo 8am the day before and my last dose NDT fell at 3pm the day before
TSH - 0.20 mIU/L (Range: 0.27 - 4.2)
FT3- 4.6 pmol/L (Range: 3.1 - 6.8)
FT4 - 10.4 pmol/l (Range: 12 - 22)
Last dose should be 8-12 hours and we split the dose into 2 or 3 the day before and adjust time, if necessary. Because you took your NDT at 3pm the day before your test the time gap was approx 18 hours and you have a false low FT3 result. You would have a more accurate measure of your normal circulating hormone if you'd taken your last portion of T3 between 9pm and 1am.
Your TSH is where we'd expect to see it when on NDT, the T3 in it lowers, and can suppress, TSH.
It's difficult to interpret your FT3 result because it will be higher, as explained you have a false low, but I'm pretty confident it will be well within range.
As you can see your FT4 is below range and as you take Levo plus the T4 in the NDT one would expect to see this in range.
GP took TSH bloods recently (nothing else) said my levels were too low and reduced my thyroxine to 25mg 3 months ago
Do you have the results of that test (if not ring the surgery and ask the receptionist for a print out, in the UK we are legally entitled to our results without charge or question).
I'm guessing the reduction in your Levo dose was due to a low TSH?? It certainly wouldn't have been due to a high FT4, if 25mcg gives you an FT4 of 10.4 then 50mcg will give a higher one but certainly not high enough to be over range and prompt a reduction.
Is your NDT prescribed? Does your GP know anything about how to interpret test results when the patient takes NDT (I'm assuming your GP knows you take NDT if it's not prescribed?).
When we take combination thyroid hormone replacement, be it NDT, Levo and T3 or any combination of them, as mentioned the T3 lowers TSH. Where we need our FT4 and FT3 levels varies with the individual. Some people are fine with a low FT4 as long as FT3 is in the upper part of it's range. Some people need both FT4 and FT3 in the upper part of it's range. We have to find this sweet spot ourselves and it seems that 50mcg Levo plus 1 grain NDT was good for you. Now your GP has reduced the Levo, your FT4 has plummeted and obviously that's not a good place for you and you need to get it back up.
I would list all the symptoms you have started to experience, discuss with your GP how this reduction in Levo has dramatically brought on these symptoms, point out the difference in your FT4 level (I'm assuming there is one) and that it's obvious you need the extra Levo to feel well, and ask for it to be reinstated. As long as FT3 doesn't go over range you are not overmedicated. TSH is useful for diagnosis but once on thyroid hormone replacement it ceases to be important and should not be used to adjust dose of thyroid meds. TSH is not a thyroid hormone, it's a pituitary hormone, FT4 and FT3 are the thyroid hormones and tell us what we need to know.
- I do have Hashimotos. Yes.
You may already know that this can cause fluctuations in symptoms and test results, which is generally temporary during the Hashi's activity. Dose adjustment can be helpful at these times, readjusting dose again when things settle down again.
Some people have found that a gluten free diet can help but it's not guaranteed.
Hashi's can cause gut/absorption problems resulting in low nutrient levels or deficiencies, this could very well be why yours are low.
-I do not take magnesium. But will look into this.
Don't forget the K2-MK7 as well. They're both important.
Thank you for letting me know. I will adjust my timings of NDT for the next test.
My results of the April 2020 test the GP took was TST only and was 0.002 I think but cannot remember completely. She did not to any other tests. Just TSH.
My NDT is not prescribed but I had a frank conversation with the GP about taking it and spoke about my T3 being in range on my last private blood test (which I showed her) and blabbed on a bit about heart and bone health being ok as long as FT3 is in range. She listened but did not comment. She said it was great that I had found something that was working for me. I was prepared for a fight and she was very blaze about it all. She was only interested in the TSH result she saw on her sheet.
I have taken two outcome measures before and after starting NDT and have redone them recently (thyroid symptom questionnaire and another I forgot the name of) so will use those as evidence too. They cover all my symptoms.
Last results before these from August 2020 when I felt great and 5 months after starting on NDT/levo combination:
Free T4 - 14.5pmol/L
Free T3 - 4.97pmol/L
reverse T3 - 19ng/dL - still high - cannot get this test currently in the UK
TSH serum - 0.008mIU/L
FT3:rT3 ratio - 17.03 (first time the ratio had ever been over 15)
Thyroid peroxidase (TPO) - 140kIU/L
Thyroglobulin Ab 21.3kIU/L
Yes I know Hashi's causes fluctuations depending on the thyroid output and autoimmunity battle. I tend to modify the amount of NDT I take depending on how I feel so might miss the odd dose or add another quarter tablet on other days. Generally I am quite stable though.
I have been gluten free and dairy free for several years. It made a definite difference to me.
i'm assuming you are now taking 1 grain NDT + 25ncg Levo ?
TSH can take a very long time to come back up if it has been supressed. my guess is that your TSH is still showing low due to being on the NDT (the T3 in it may have a greater lowering effect on TSH than T4 does) and that even though levo was reduced 3 months ago , that is why TSH has not risen even though fT4 result is now clearly far too low.
Is GP aware you are taking NDT ?.. and do they understand that anything with T3 in will often lower TSH more than Levo alone does.
It looks like you need to get the levo dose reinstated to the 50 you previously felt good on.
First step would be to show GP that under range fT4 result. and see if they will put it back up based on fT4 being under range and fT3 being nowhere near top .. as there is no indication of overmedication despite what your TSH says.
Yes I am on 1 grain NDT and 25 levo and have been since April 2021. I was on 1 grain NDT and 50 levo previously (March 2020-April 2021) before the GP reduced my levo.
Sadly before the GP reduced me by results were the best ever - these were taken August 2020:
Free T4 - 14.5pmol/L
Free T3 - 4.97pmol/L
reverse T3 - 19ng/dL - still high - cannot get this test currently in the UK
TSH serum - 0.008mIU/L
FT3:rT3 ratio - 17.03 (first time the ratio has ever been over 15)
Thyroid peroxidase (TPO) - 140kIU/L
Thyroglobulin Ab 21.3kIU/L
My GP is aware I am taking NDT but to be honest despite her saying she felt it was great that I had found something that was working for me, I am not really sure she knows what is was. I was prepared for a fight and she was very blaze about it all. I talked through a lot of stuff with her though re bone density and heart health explaining that my T3 is in good ranges and she seemed to take it all on board. She was only interested in the TSH result she saw on her sheet though after my yearly blood test result came back to the GP. All my other bloods are done privately.
You might find these posts useful in the next round of 'low TSH' conversations with GP. They contain some interesting discussions and also links to evidence from a large long term study which found risks of TSH between 0.04 and 0.4 are no greater than risks of 0.4 to 4
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