Hope you’re all doing well - this site has been a life saver so far and finally helped me get diagnosed with Hashimotos by a sympathetic endo after years of having symptoms and being told I was fine. Currently taking 75mcg levothyroxine in the morning as well as a better you b12 supplement spray, better you vitamin d 3000, selenium supplement and coenzyme q10 supplement (all taken in the evening). I also follow a GF diet which has definitely helped.
Basically the last time I saw my endo he wanted to increase my dose but my tsh was down at around 0.2 (same ranges) so technically out of range (and my job requires me to hold a medical - pushing myself further out of range would mean that being suspended). T4 and T3 were both in range but at the low end. I was feeling ok, not great and definitely not optimum but a huge improvement on how I had been feeling so we agreed to leave my dose as it was and reassess in 6 months. Gradually been feeling like I’ve got less and less energy, struggling with weight again, bloating and feeling uncomfortable after food and then a couple of weeks ago I lost quite a lot of my eyebrows again (this happened before I started to feel really awful last time) so I decided I’d run a medi checks test. Resting heart rate is still low (increased from the low 40s to around 55 average so better than it was!).
Anyway I’m hopeful that the endo will agree to an increase in levo considering he wanted to put it up last time anyway but I just wanted to see if anyone had any suggestions. I am still feeling much better than I was a year ago but I know I’m not optimum. I know I am very lucky to have a sympathetic doctor!
Thanks in advance for any advice - it is very much apprecited!
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Birdy123
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Your nutrient levels are mostly not at all good, which isn't surprising as Hashi's tends to cause gut and absorption problems which can lead to low levels. Did you test Vit D and B12 before supplementing? If so what were the results that you based your supplement dose on?
Active B12: 55.8 (37.5-188)
Considering you're taking a B12 spray, this is a very low level. Active B12 below 70 suggests testing for B12 deficiency/pernicious anaemia
If you have any then you should list them for your GP when you ask to be tested for B12 deficiency/pernicious anaemia because of your low Active B12 level.
Stop taking the B12 supplement as this will mask signs of B12 deficiency and skew any further results.
Folate is OK but when you supplement for your low B12 level - whether that is B12 injections or oral supplements, a good B Complex is needed to balance all of the B vitamins. Don't take a B Complex or supplement containing methylfolate (or folic acid) before further testing of B12. When buying a B Complex, look for one that contains methylfolate not folic acid, and methylcobalamin not cyanocobalamin (Thorne Basic B or Igennus Super B are good quality B Complex).
Vit D: 63.7nmol/L = 25.48ng/ml
This is low. The Vit D Council recommends a level of 125nmol/L (50ng/ml) and the Vit D Society recommends a level of 100-150nmol/L (40-60ng/ml).
To reach the recommended level from your current level, based on the Vit D Council's suggestions you could supplement with 3,700iu D3 daily . If you have the BetterYou 3000iu spray then I would increase your D3 spray
and take 6000iu one day, 3000iu the next for 6 days per week.
When you've reached the recommended level then you'll need a maintenance dose 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. You can do this with a private fingerprick blood spot test with an NHS lab which offers this test to the general public:
D3 aids absorption of calcium from food and 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 tablets/capsules/softgels, no necessity if using an oral spray
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 tablets/capsules, no necessity if using topical forms of magnesium.
Check out the other cofactors too (some of which can be obtained from food).
Ferritin: 46.7
It's said that for thyroid hormone to work properly (that's our own as well as replacement hormone) ferritin needs to be at least 70, preferably half way through 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 apjcn.nhri.org.tw/server/in...
When we are taking thyroid hormone replacement, it's not unusual for the TSH to be low or suppressed, this is because the pituitary is checking to see how much thyroid hormone there is, it detects there is enough because we're taking Levo, so it doesn't need to send the signal (TSH) to the thyroid to produce any, the feedback loop is satisfied, so TSH remains low. It's only the actual thyroid hormone levels - FT4 and FT3 - that matter and yours are way too low.
Your FT4 is 32% through range and your FT3 is 26% through range. The aim of a treated hypo patient generally is for TSH to be 1 or below or wherever it needs to be for FT4 and FT3 to be in the upper part of their reference ranges, if that is where you feel well.
Dr Toft, past president of the British Thyroid Association and leading endocrinologist, states in Pulse Magazine (the magazine for doctors):
"The appropriate dose of levothyroxine is that which restores euthyroidism and serum TSH to the lower part of the reference range - 0.2-0.5mU/l. In this case, free thyroxine is likely to be in the upper part of its reference range or even slightly elevated – 18-22pmol/l. Most patients will feel well in that circumstance. But some need a higher dose of levothyroxine to suppress serum TSH and then the serum-free T4 concentration will be elevated at around 24-28pmol/l. This 'exogenous subclinical hyperthyroidism' is not dangerous as long as serum T3 is unequivocally normal – that is, serum total around T3 1.7nmol/l (reference range 1.0-2.2nmol/l).*"
*He recently confirmed, during a public meeting, that this applies to Free T3 as well as Total T3.
You can obtain a copy of the article by emailing Dionne at
tukadmin@thyroiduk.org
my job requires me to hold a medical - pushing myself further out of range would mean that being suspended
First of all thank you so much for this information, I really do appreciate it. Lots to think about in there and I actually feel a huge relief in that it’s not me going crazy - I have been feeling really exhausted this week! I work odd hours but I used to be able to cope with it better than I have been recently.
My original (pre any treatment/supplement) results showed me as vitamin d deficient and b12 at 41.6.
I have emailed my endo and will ask about the b12 and stop supplementing that in the mean time. I will also look in to the other supplements you’ve mentioned above, I’m fed up of having no energy to do anything!
Re the medical if that gets suspended that would mean not being able to work and whilst temporarily that wouldn’t be an issue my bigger worry is if I end up with my tsh out of their limits long term and they don’t like it (nhs hasn’t got anything on these guys who can ground you for much less!) then I can’t do my job which obviously I can’t afford. That’s why I’m keen to explore anything I can to help my thyroid along!
Re the medical if that gets suspended that would mean not being able to work and whilst temporarily that wouldn’t be an issue my bigger worry is if I end up with my tsh out of their limits long term and they don’t like it (nhs hasn’t got anything on these guys who can ground you for much less!) then I can’t do my job which obviously I can’t afford.
Crikey. I can't get my head around that. Why should a largely irrelevant test result mean that you can't work? Surely it's how well you are that determines that you can work. If your TSH came into range - which would likely mean a reduction in Levo to achieve that - then your FT4 would reduce, most likely your FT3 as well, and then you'd be more unwell. Who is telling these people that you have to have your TSH in range!
I saw an NHS endo 20 years ago, he didn't like my suppressed TSH so he reduced my Levo until it scraped back into range at 0.4 (0.27-4.20) but by doing so my FT4 reduced from top of range to 15.6 (11.8-24.6) and FT3 was 2.8 (2.8-7.1).
With a bottom of range FT3 I was so very ill that I couldn't work for 2 years. Endo didn't give a fig, he achieved what he wanted - an in-range TSH regardless of how I felt. I was self employed in our own restaurant and my husband
had to take on the role of my job as well as his own and looking after me as well. I never went back to the endo after that, told my GP I'd no intention of doing so and she agreed with me and promptly increased my Levo again and my TSH has been suppressed every since.
Yeah it’s tricky, it’s super regulated and it needs to be given the role I’m in but it does encourage box ticking by the doctors. Whilst I don’t feel awful I know I’d feel better on a higher dose with everything bar tsh in limits. I’m going to speak to my medical issuer and see what they say l and just hope they can be realistic about it!
It is crazy seeing so many stories where people are struggling to get themselves well because of doctors misunderstanding the condition. Huge respect to you for getting yourself to where you are know - there’s obviously been lots of learning along the way and I can’t thank you enough for sharing that. I’ve just ordered the supplements you talked about online so I’m hoping that will help a little bit too - I will keep you updated with how it all goes!
Don't start all supplements at the same time, start with one, after 2 weeks if no adverse reaction then add in the second one, continue this way. If you do have any reaction then you'll ow what caused it. Do let us know how you get on
Can you get your endo to write a letter for you to your employer explaining the situation and your bloods vs being well? That with the article from Dr Toft? Would that make any difference?
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.
Our results indicated that patients with hypothyroidism suffered from hypovitaminosis D with hypocalcaemia that is significantly associated with the degree and severity of the hypothyroidism. That encourages the advisability of vit D supplementation and recommends the screening for Vitamin D deficiency and serum calcium levels for all hypothyroid patients.
Same applies to low B12 - extremely common in hypothyroid patients
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.
Intrigued to know what the inflammation test is and how it was done.
My TSH is lower than yours (below range in fact) and I feel better than I have ever done (also now supplement with Vit D and am GF). The GP I now see at my practice is a bit more open minded than others there, though she too would like me to get the TSH a bit higher and has tweaked my levo dose a bit. When I first saw her, she showed me a list of all my blood tests since I was diagnosed hypothyroid 11 years ago and my TSH has varied hugely! I am Hashimoto's so that is to be expected. However, they didn't seem to mind when the TSH was higher even when I felt unwell as a result! They are very bound by their ranges.
Not sure about the inflammation test, it was just part of the thyroid bundle I ordered! Yeah the tsh number game is so frustrating especially when you know you can feel so much better. Great your GP has been helpful with it, although I hope the tweaking doesn’t effect you negatively. I’m going to speak to my endo and my work doctor this week and see where I get with it. Fingers crossed!
Your T4 and T3 levels look low and your TSH is quite low too. Tbh I don’t fully understand that. Normally if levels are low then TSH would be calling for more and but yours isn’t.
Have you checked on your conversion from T4 to T3.
It looks like from your T4 level that you could do with more T4. Have you considered T3 medication.
Hi McPammy, yeah this is what is really frustrating me as if I look at my pre treatment results the only thing that has really changed is my TSH. T3 and T4 are slightly higher but only marginally. I did feel great when I first started taking levo but it’s gradually getting back to where I was before. I would be open to t3 if I can get the ok from my work dr!
When I first met my present GP she said she didn't know much about the thyroid and added further into our chat that to stop taking extra vits as I don't need then. I muttered ok but I didn't stop!
She had been learning a lot more and last year out of the blue asked me what I wanted testing! After I'd figuratively picked myself up off the floor I suggested we did the recommended 4 every year. This time around I was thinking my thyroid meds abit low so suggested we tested my vits etc early so if ..... and she carraied on saying it makes sense to do that so I can increase if necessary before I get my thyroid tested. So I then said that's what I was thinking aszstill have time to make changes to be in place and worked in before my next thyroid test. So we are working and thinking from the same hymn sheet as the saying goes!
Ah that’s great you’ve got a GP who will let you be so involved in your own treatment. It makes such a difference having a good dr behind you! I definitely felt like my levels are too low again which is why I did the test - you do know yourself don’t you!
Well I think it's more likely that she is in agreement with me and I suspect that she knows an Endo from what she has said plus she seems to check out what I'm saying so all well and I feel she is really wanting to get her head around it so well done to her! Plus I boost her confidence a bit so a good patient/doctor relationship!
I have been suffering with Hashimoto’s/hypo for decades (I am 68) and was only diagnosed with Hashis a few years ago after finding a nodule and having it biopsied. My antibodies were at 1500. Started doing lots of research and taking matters in my hands, so to speak. Fast forward three years. I am now experiencing more energy, drive and focus then the years past. My nodules have shrunk and my antibodies are down 50%. I attribute this to taking iodine. After reading the book The Iodine Crisis by Lynne Farrow, I was convinced that I needed to take it. I was taking 50mg a day for several months and am now taking 25 mg/ day. My doctor told me that it could make things worse. The thing is, you have to take enough of it to keep that from happening.
I also take 30000 iu of Vit D3 daily. Read the book The Optimum Dose written by a doctor who has been using it in his practice for years. Also I take a good iron supplement since my ferritin was mid range and iron is needed to make T3.
I also take a lot of other vitamins and minerals but am not gluten free. I tried it once but never felt different.
Hi Terri, oh that is interesting, thank you! I’m going to start introducing the supplements I think I need one by one and my endo has agreed to let me increase my levo too. I will have a look at the iodine as well. Hopefully getting somewhere!
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