I'm SO confused, please help me! Updated with results and ranges

Hello everyone,

Fellow Hashimotos patient, diagnosed three years ago and was always on synthroid. 100mcg, stupid NHS would never test my free ts so don't know what they looked like but my tsh was down to 1.25. Was still feeling really rubbish on this medicine and decided beginning od December to switch to naturethyroid, started gradually and got to 2 grains and had my bloods tested after 4 weeks - feel AWFUL. I'm so confused about my results because my free ts are not optimal, my tsh has plummeted and I have both hyper and hypo symptoms now. Feel like my heart is about to jump out my chest and shaking hands but I've also got low temp, dry skin, swelling, puffy eyes and joint pain. These are my test results (I didn't take my ndt for 24 hours before test and I stopped my synthroid a few weeks before starting the ndt)

TSH 0.03

T4 total 71.9 (range 64.5-142)

Free T4 13.88 (range 12-22)

Free T3 5.82 (range 3.1-6.8)

Anti tpo 239.4 (range <34)

Do I need to decrease my dose? I was always on 50 of Synthroid and only needed an increase to 100 because I was pregnant and a few months after giving birth was decreused back to 50 then became major hypo and put back to 100 where my tsh settled to 1.25.

What should I do??? One person on another forum told me I need an increase?

Doctor will have no clue since agreed to prescribe it UT doesn't know much about it,

Thank you so much,

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35 Replies

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  • Also have low vitamin d for a long time and I take 5000iu everyday along with selenium, calcium, magnesium, zinc and a bcomplex and probiotics. Ferritin and B12 were fine

  • Why are you taking calcium? Did you test low? Even if you did, as has been mentioned above, taking vit D3 will increase your absorption of calcium from food, so it's very unlikely you actually need those calcium supplements, which are a very bad thing to take. But, you do need the vit K2-MK7, as HLAB35 said.

    It would be a good idea to post the actual results of your nutrient tests, with the ranges. 'Fine' is often meaningless. And, if your vit B12 is below 500, you risk neurological damage, and just a B complex will not help raise it.

    I also agree with startagaingirl, that 24 hours was too long a gap, and that you now have a false result for the FT3 - 12 hours would have been better. So, it's very unlikely that you need an increase in dose.

    You also tested a bit too soon. 6 weeks would have been better, because it takes that time for the T4 in NDT to be completely absorbed and converted. It's possible that at the end of six weeks, your FT3 might be even higher. So, if you do reduced your NDT a tad - say 1/4 tablet? - wait six weeks before testing again.

    It doesn't matter how low your TSH goes. When taking T3 in any form, you can expect it to be suppressed. Once you are on thyroid hormone replacement, the TSH is irrelevant, unless it goes high.

    And you can also expect your FT4 to be low, too. The body only hangs onto as much as it needs, because it doesn't like unconverted T4 hanging around. Trying to raise it, will just increase your risk of excessive rT3. The important reading is the FT3. :)

  • I totally agree as someone who used to take calcium and regrets it.

    1,000 iu of Vit D and 100 mcg of Vit K2-MK7 daily and haven't looked back :-)

  • Hey @HLAB35 my endo has put me on 3200 UI Vit D3 and 600mg Calcium daily - I don't trust his nutritional knowledge. I had to battle with GP to have my Vit B12, ferritin , folate and iron profile tested as Endo refused - bloods drawn today.

    Please can you tell me what the consequences of taking calcium supplement are and anything I could read about it?

    Also do you recommend a quality source for Vit K2-MK7?

    Thank you :-)

  • The best official information is found on the website

    vitamink2.org/k2-pedia/abou... - you could show this to your endo!

    There a multiple consequences of calcium depositing where it's not needed... it exacerbates prostate cancer, heart disease, it can accumulate in our livers, kidneys - even our brains and less gets into our bones.

    I have used several suppliers of vitamin k2 - I eventually decided to go for one made in the UK (worried about being charged extra for import): It depends what strength you're after and if you want some K1 thrown in the mix.

  • Thankyou @HLAB35 :-) I scrolled down and read your other post about Vit K and calcium paradox - so gonna get that book - I will look into Vitamin K1 as well as K2...you know this forum is saving me, thank you!

  • amasufindme You might be interested in this post I did a little while ago about K1 and K2

    healthunlocked.com/thyroidu...

    A couple of decent MK7 ones

    amazon.co.uk/Vitamin-MK-7-N...

    amazon.co.uk/Jarrow-MK-7-90...

  • Hello, thank you for all the great info. I take a calcium supplement because I'm at risk for osteoporosis and need to have bone density scans.

    I've forgotten to take the naturethroid the last two days and I actually feel so much better - does this mean this medicine doesn't work for me or that I need to cut back as you said by maybe 1/4 grain.

    I really appreciate the information and will be bringing up the calcium and vitamin d to my doctor. I didn't post the nutritional results as I don't have them, my gp ran them and I couldn't get a copy without paying a hefty charge, all they told me was that they were fine. I had my thyroid results done privately

  • Your doctor is breaking the law. He's not supposed to make money out of selling patients their results! They are YOUR results. He is only allowed to charge for paper and ink, and that would hardly be hefty. I think you should write a new question about this, and people will tell you how to get hold of your results.

    As for the calcium, doctors have this weird idea that bones are made of 100% calcium, so all you need to do to protect from osteoporosis, is to stuff the patient with calcium! That really is not true. Bones need many things to be strong. Firstly, they need good levels of thyroid hormone! But doctors never think about that.

    They also need vit D3, zinc, magnesium, vit A, and many other things. It's very unlikely that you will be calcium deficient in the western world. There are many food sources - not just dairy, but also many veggies contain decent levels of calcium. And, you do not need excess. That could lead to kidney stones, or even heart problems. However, doctors know nothing about nutrition - and I mean nothing! So, never take nutritional advice from a doctor, do your own research.

    In the meantime, get some vit K2-MK7 and start taking it, to make sure all that calcium goes to the right places. :)

  • my daughte's doctorscharge £10 a time for results :-(

  • whispers60,

    You can see the NHS statements about access here:

    nhs.uk/chq/pages/1309.aspx?...

    (and link from there to charges).

    Charging ten pounds for a sheet of paper (which is how I have read your response) is not right. The surgery is prohibited from using printing charges as an income stream. The charge should relate to their actual costs. So 10 or 20 pence a sheet.

  • this is how they get away with it i think, taken frm the link you kindly provided

    "£10 for records that are only held electronically"

    my docs have started charging a pound, which I don't mind but still think high lol

  • Yes - I agree that is what they are doing. The Information Commissioner's Office makes it quite clear that data protection act requests must never be used as an income stream.

  • There's a huge difference between your entire records, and the results from one blood draw! There must be somewhere you can report them for this, but I have no idea where...

  • Hi - I think you'll find there'll be people very willing to help but, as always, you'll need to post your ranges for T4 and T3 in particular.

  • Thank you, posted them now

  • The ranges would definitely help.

    Hope you're on a gluten free diet gluten and thyroid antibodies go hand in hand.

  • Hello yes i am on a gluten and dairy free diet but still high antibodies

  • Some people find that gf helps reduce ABs but it doesn't help everyone. Like you Swolleneyes, my ABs didn't really respond.

  • Things like optimal Vit D, B12 and folate and ferritin help a lot and optimal usually mean high in the range but can't make any further. I'm in without ranges for thyroid results. The ranges change from lab to lab so answering your query it's essential we know as if borderline it can be under for some of us and over for others. Plus as you say you are showing both symptoms. Have you every been checked for antibodies? .

  • Yes my antibodies are above - 239.4

  • Thank you for the advice, I've updated it with the ranges now

  • Hi - because NDT contains T3, 24hrs gap before test was probably too much and hence your FT3 has been understated. I would think that you probably don't need a higher dose at all, certainly for now, you are probably close to the top of FT3 range. As to what is causing ongoing symptoms - how quickly did you raise your dose? Also, since this is the first time you have taken T3 in any form, it could be that your adrenals are struggling, as T3 will show problems there. Also you say your nutrients are ok but don't give numbers. Again taking NDT will highlight any deficiencies as as we all know "normal" doesn't mean optimum.

    Others are more expert in NDT and will advise further, but I would say if anything you should drop down the dose slightly again to give your system a rest and then try raising it more slowly again.

    As for your anti-bodies, have you tried probiotics to help rebuild your gut lining? They have really helped me.

    Hope you feel better soon,

    Gillian xx

  • Hello thank you for your help! I raised my dose way too quickly :( - was desperate to feel better and needed to be on my feet as I've got a little one to look after and was just not functioning. Could that be a factor? My family has a history of adrenal issues as my sister has Addison's disease - how can I reboot my adrenals to cope with the t3? Its hard because I feel so hypithryoid and a lot of my symptoms that I get with a high tsh have came back but I also feel like my heart is beating a million beats a minute and got the shakes. Do you think I should go down a 1/4 grain?

  • If your heart is beating fast and you have the shakes, you likely are over medicated.

    Dropping your dose by 25-50% might help hyperthyroid symptoms. If you crash, then you have pulled back too far.

    Your idea about your adrenals is a good one. Thyroid is not going to be well managed if your adrenals aren't cooperating.

    If possible do a 24 hour saliva adrenal cortisol test. If you have a problem, it can help you know where to adjust.

    Is there anything stressing your adrenals? Lifestyle? Diet? Sleep? Physical exertion? Stress? Other illness? Food allergies?

    Addressing any of these can help. Helpful interventions might include adaptogenic herbs like ashwaganda, glandulars, a combo product, like Vital Nutrients Adrenal Support, Seriphos, or physiologic dosing of hydrocortisone.

    Supplementing with vitamin C and vitamin B5 help support adrenal function, goo.

    You may need to check pituitary function, too. Fatigue and weight gain or loss can help guide decision making, too.

  • Yes! You could be taking too much. And the calcium supplements need to be taken at a different time - re: my 20 years experience with Hashimotos10 + years with Armour / Naturethroid. Fast heart beat, shaking hands, etc. is a sign of too much thyroid hormone.

    Another thing that could be happening / that could be contributing to fluctuating TSH, is post-pregnancy. Here in the states, we receive lots of information of how some women do not even develop Hashimoto's until after a pregnancy. So, all kinds of things are changing post-pregnancy, reverting back to normal. The immune system is affected.

    Hashimoto's (remember) is a malfunction of the immune system / thyroid hormone. Your own thyroid is making the hormone, but your own immune system sees it as an invader and destroys your own hormone. What happens if the immune system gets distracted by something that is considered more of a threat? (It could be something as insignificant as a rhino virus / a cold) Answer: your own hormone gets through the malfunctioning immune "shield". We moms know well that pregnancy, and post pregnancy is a bit of a distraction to everything in our biological system. (ha!) If you are over-dosing - even on Naturethroid, then the overload, is overloaded even more when your own hormone gets through. My functional medicine Dr., here in the states, calls that a Thyroid Storm. It used to happen to me much more often on Synthroid / levothyroxine.

    Same Functional Medicine Dr. advised that I should take calcium, coffee, even food separate from Naturthroid. Calcium somehow can interfere (in some digestive systems) with the proper absorption of Naturethroid. (I have had what I thought were for sure heart attacks taking calcium with Armour - same with anything extremely salty!) Nothing to do at all with the dosage, just the manner / timing in which I was taking it. My Dr. recommends taking Naturethroid on an empty stomach - 30 minutes before food. I read somewhere that the parathyroid is really affected by calcium. (A whole 'nuther Ball O'Wax) When I do things in this manner, Thyroid Storms are a very rare occurrence.

    Another thing advised by the Dr. here: Digestive Enzymes. In his opinion, the whole controversy over Naturethroid and why it works well with some folks, and not all well with others, has to do with whether they have enough digestive enzymes. The above discussion about taking Naturethroid with food / with calcium / with coffee, could be covered by this same digestive enzyme question. I was actually able to test my digestive enzymes and know for sure I am low. (frequent bouts of indigestion could also be an indicator). Dr. says, this digestion issue is why regular Medical Doctors are so reluctant to get into the boat with a patient and Armour / Naturethroid - the constantly fluctuating TSH. They don't want to deal with it! They like to blame it on the Natural source of thyroid hormone being "inconsistent" when in reality it is the patient's individual digestive need(s). With just a little bit of education, the patient can learn to adjust the timing of the Naturethroid dosage / what is eaten and when / experiment with same.

    Last but not least, there is the very real possibility that you are doing something so right nutritionally, that your Hashimotos is healing. It is possible. I have done it. Adding Selenium was the first time I noticed that I did not need so much Armour thyroid. Another time was when I learned about leaky gut syndrome and modified my diet to be a bit kinder to the leaky gut. I am now on 1/4 of the amount of Naturethroid from where I started (3 months and counting). It is possible. I learned much of what has helped me right here, from all of you. My eyelashes are thick and long again, my middle is shrinking, energy is up, brain fog is greatly diminished. It is possible to beat this thing - with the help of the Functional Dr.s and many good people taking the time to share what has worked for them. Keep learning, and simply be firmly determined to find the cure for your own body. The "normal" regular Dr.s will not (in my experience) help you with a cure nor tell you that it is possible. It is.

    Latest thing that helped me (and I learned about it / was reminded of it right here): B12 Complex. (Liquid - 1000 mcg, held under the tongue) Unbelievable boost of energy, mood elevating, etc. - on this my 3rd day.

  • 5,000 iu of vit D every day is quite high (although probably necessarily so to help with your thyroid meds) but you could end up with lots of calcium floating about in your bloodstream which can give you symptoms - so in order to help to prevent calcium build up in the wrong places (arteries and soft tissues) it's now recommended to ensure you're getting enough vitamin k2 with your vitamin D3 as they'll work in tandem to (i) absorb calcium (vit D3's job) and (ii) then direct calcium to your bones (vit K2's job) where it's most needed.

    It's been very good for my teeth and I've not (touch wood) required any emergency trips to the dentist recently. N.B. My GP hadn't heard of it, but the legitimate research is out there and very convincing. I first read a book called Vitamin K and the Calcium Paradox which had me convinced (it was originally discovered by an American Dentist adventurer a century ago who couldn't figure out why so many of his patients with weak bones also had heart disease).

    vitamink2.org/k2-pedia/abou...

  • Some of us need 10,000 IUs it more of vitamin D. Tracking D levels and staying at tgechigh end-of-life the normal range us the best way to verify dosing. Low D levels correlate with many cancers.

  • I have no problem with taking D3 - just take K2 with it!

  • Anyone else?

  • Swolleneyes,

    You are probably a little over medicated as FT3 5.82 is likely to be slightly over range as you left 24 hours between last dose and blood draw. I would skip 2-3 doses and reduce by 1/2 grain and see whether symptoms improve.

  • Thank you so so much!! I haven't taken it the last two days and I feel so much better. Will decrease dose and retest in six weeks

  • Well guess what happened...had my follow up app with private GP who is the only one here that prescribes ndt and I told her I had felt quite hyper on it, hands shaking, heart pounding and sweating and I would like to decrease it by half a grain and she point blank refused to ever prescribe me thyroid medicine again after seeing my results. She claimed I was close to thyroid toxicity saying i had a suppressed tsh and elevated t3 and she didn't feel safe prescribing me it and said the GMC is down on them like a tonne if bricks and it'd be considered malpractice. I was like well what am I meant to do? She said ask your NHS gp for referral to endo, I said first of all my GP won't refer me and second of all no Endo in this country (Scotland) prescribes ndt. I begged her to let me stay on it and do regular bloodworm, decreas

  • Decrease the dose, whatever it takes and all she could say was try to buy it without prescription online yourself...right so apparently that's safer than her prescribing it?? All about covering her back, doesn't care about a patient. And she charged me for the app!!!

  • She also gave the worst advice ever and said because tsh so low don't take any thyroid medicine for a month even though I have an autoimmune disease

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