I started getting these symptoms about 2 weeks ago and they have gradually got worse and peaked today: nausea, night waking esp around 3-4am, weak legs, feeling of being hypoglycemic, needing to eat all the time including getting up to eat in the night, diarrhoea, brain fog, lack of concentration. I struggle most of the day and then feel more alive from 6pm - 9pm.
Before this current period I was constipated.
I take 1 gr NDT morning and 1/2 grain afternoon. My last labs were on 04/11/24 :
TSH 0.04 ui/ml (range 0.35-4.94)
FT4 12.61 pmol/l (range 9.01 - 19.04)
FT3 4.38 pmol/l (range 2.43 - 6.01)
Vit B12 344 pmol/l (range 138 - 652) Vit D 165 nmol/L (no range given)
Ferritin 87 ng/ml (range 10 - 204)
I've been on a gradually increasing dose of NDT (Thyreogland from Germany) since 22.03.23
I also did a cortisol saliva test in 2022 which showed very slight HPA axis dysregulation but nothing that could be medicated. I have just ordered another one to complete.
I also have a lot of gut issues going on that I am trying to resolve (h.pylori and sibo).
I am confused, am I over medicated? My endo assures me that TSH can go very low when taking NDT and this is nothing to be concerned about as long as FT3 not too high. Or is this a cortisol issue? Or even a malabsorption issue given my digestive problems which may include leaky gut - I'm trying to find this out
I went to GP today and they don't understand NDT dosing and effects and he just said he thought I was overmedicated purely on symptoms. I'm in provincial France and its extremely traditional here from a medical standpoint. NDT is not sold in France, only levo. I will try to get a distance rdv with my UK endo this week but he always says I can carry on until the FT3 is optimal (which it isn't yet). I am taking NDT because of a T4-T3 conversion issue apparently, so its not classic hypothyroid. I wonder if what I actually have is adrenal fatigue and that is what is interfering with the thyroid function. Perhaps I only need T3? Running out of ideas. I've had nightwaking ever since being post menopausal but mostly now I can't get back to sleep. Thanks very much
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Crankyoldbag
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How long before test did you stop vitamin B complex
With serum B12 result below 500, (Or active B12 below 70) recommended to be taking a separate B12 supplement….Plus your separate vitamin B Complex
Then once your serum B12 is over 500 (or Active B12 level has reached 70), you may be able to reduce then stop the B12 and just carry on with the B Complex.
If Vegetarian or vegan likely to need ongoing separate B12 few times a week
IMPORTANT......If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 5-6 days before ALL BLOOD TESTS , as biotin can falsely affect test results
In week before blood test, when you stop vitamin B complex, you might want to consider taking a separate folate supplement (eg Jarrow methyl folate 400mcg) and continue separate B12 if last test result serum B12 was below 500 or active B12 (private test) under 70
Not only is NDT not sold in France, it's illegal! But, we do have levo and T3, and it's easier to get T3 here than it is in the UK. So, maybe you could try combination therapy, which would be more flexible.
An awful lot of hypos have a conversion problem. So, I don't see why you say it's not 'classic' hypo. What do you think 'classic' hypo is? And you probably do have adrenal fatigue because when the thyroid starts to fail, the adrenals take up the slack by producing more cortisol. But they can't keep that up forever. Sooner or later, cortisol levels are going to drop. But that is caused by being hypo, not the other way round.
Sorry for my ignorance but could it be that i have an adrenal fatigue problem rather than a thyroid problem. Maybe i shouldn’t even be on thyroid meds but just fixing my adrenals?
Goodness! I see what you mean. I'm amazed they diagnosed you on the basis of this test - this was before you started NDT, wasn't it? And this was in France? Do you remember what time of day the blood was taken?
Your FT3 was low-ish but not catastrophic. Your FT4 was euthyroid. All your nutrients were good. Did you have antibodies tested?
And how many similar tests did you have before they started you on NDT?
Just this blood test then i started 1/4 gr NDT morning and afternoon. So these past 2 years i shouldn’t really have been taking anything for my thyroid?
How can i come off my current dosage safely? 1 grain morning and 1/2 grain afternoon.
This was a morning blood test fasting. The anti bodies were fine
No, I'm not saying that. It's possible that your thyroid was failing anyway and you would have eventually ended up on thyroid hormone replacement, anyway. But we can't know, because they jumped the gun and had a knee-jerk reaction to a low-ish FT3. They should have at least waited three months and retested to see how things were working out. Especially as antibodies were negative. There were so many possibilities and now we shall never know what was really going on.
I hesitate to suggest that you come off NDT, because I'm not qualified to do that. I just know that if it were me, I would want to come off it and see what happens and if I really do need it. But, it would take time. And during that time, if you really do need it, it could make you very ill.
Coming off the NDT is not a matter of safety, it's a matter of being as kind as possible to your body, because it's going to be a shock. I'm not saying this to encourage you in any way, but when I was in somewhat the same situation, doubting my diagnosis (which was stupid of me because in my case it was pretty clear) I just stopped cold turkey. But I'm a cold-turkey sort of person. It's not something I would recommend to others. But I didn't suffer any ill effects. What's normally recommended is coming down the way you went up: very slowly so the body has time to adjust. Just be very aware of your body and how it is reacting. It will tell you all you need to know if you listen carefully.
i’m to A+E in my nearest town tomorrow and apparently you can consult with endo’s there. At least they might provide some guidance on how to come off it carefully without messing up my thyroid and also do something about the high night time cortisol feeling
Whatever you do, you're not going to mess up your thyroid. Either it's already messed up or it will be ok.
So, your cortisol is high in the evening? What's it like early morning? If it's low then the thing to do is concentrate on raising it in the morning, not reducing it at night - that would just make things worse. The adrenals have a daily quota and the just keep on trying to meet it through the day. If they don't succeed until the evening then that's just tough luck. But, if you manage to raise it early morning, then the evening level will sort itself out.
I know how you feel. I have similiar issues on a fluctuating basis. I am also in the menopause which can mimic similiar symptoms to thyroid issues. Unfortunately, symptoms can be due to under medication and over medication. I get the same symptoms for both. Your T3 is too low on the NDT. Ideally, you need your T3 in the very upper range. Some folk like myself need it to be border line over range to feel anything decent. The T4 is better if it is mid range. Everyone is different, but if I am correct, a lot of NDT users do better on those ranges. Perhaps consider trying small increases to see how you feel. It's all trial and error in my experience.
The thing is don’t feel i can increase with all these overmedicated symptoms. I’m climbing the walls with insomnia already. It almost feels like an adrenal rush at night time
I take melatonin and Pure Encapsulations Magnesium Glycinate at bedtime, as well as, use a YogaSleep White Noise Sound Machine.
One thing I've noticed is that when my mental health is in good shape I sleep better. This past month I've been totally engaged in a creative project with the Februllage collage project; create a collage a day for 28 days based on a theme prompt. I'm not only sleeping better but I'm dreaming regularly.
It is listed in my World Desiccated Thyroid document as a compounded form requiring a prescription.
helvella's medicines documents (Rest of the World) can be found here:
helvella - World Desiccated Thyroid
Contains details of all known desiccated thyroid products including information about several products not considered to be Natural Desiccated Thyroid (NDT/Desiccated Thyroid Extract/DTE).
It was prescribed to me by a private endo in Ipswich who is listed on Thyroid UK. I have to get it from Germany because i can’t get Armour sent from the UK. Its an NDt not a glandular. Mix of T3 and T4
I see it's an NDT but in a capsule form so it's harder for you to get half I suppose.
I use Thyroid s but have it sent to the UK, then it's posted to me here, also Armour when I ran out of Thyroid s during Covid.
I get prescribed T3 here by my GP Cynomel T3 have you tried that. Mine is free but you only pay around 6 euros for 30 tablet 25mcg. Have you got a French Doctor.
Something is badly affecting you it's hard trying to find out, what! I still think that your levels are too low, Mine need to be higher to feel well.
I experience those symptoms when my levels are too low. I have taken NDT for 13 years. Years ago I saw a Dr called Dr Skinner - some may remember him, & he said I was getting a cortisol release in the night because levels dip then. He advised me to raise my dose by ¼ grain & take it in the evening. I take ¼ grain at 5pm & found that solved the problem.
Yes though I have always often woken up at that time. I read Paul Robinsons recovering with T3 which suggests taking T3 around thst time. Seems to suit me.
Hi C.O.B. Just drop a day or two and see if you feel better, you have 5-7 days T4 on board in your cells. You will feel a little odd as you aren't getting your daily dose of T3.
You may also be low thyroid, but it's much safer to go down rather than up. Either way the the only way to get optimal is experiment on your self.
i dont think you are over medicated and your dr is right anytime you take meds w t3 in them it will naturally suppress the tsh therefore you look at the free t3 and free t4 levels. What you are describing at your age can be from other hormones changing due to age w peri menopause or menopause. High cortisol also makes you hungry alot and cant sleep but the hormones changing really do a number on sleep and eating as well. Menopause can really drive you nuts w the sleeping/eating/weight issues alone and I am going through it too.
I have tried several times to get B12, Folate tested in France but failed also tried to get a four point cortisol Saliva test too but not available here. Nearest one is Belgium.
Not available where I lived in France before either. I had to return to the UK for these.
Brexit is a pain, not enough plane trips and only an 8 hour ferry journey.
I’ve had no trouble getting B12, Folate, CRP, ferritin, iron and Vit D tested alongside the full thyroid panel. I just asked my GP for a prescription and said i needed it for my private endo in the UK.
Just ordered a saliva test from Proteomis in Brussels.
Read Dr Peatfields book "Your Thyroid and How To Keep It Healthy' to gain an understanding of how the adrenals must be treated first or alongside thyroid meds.
If adrenals aren't functioning well, the metabolism increase created by thyroid meds exceeds what the adrenals can keep up with. It is likely your adrenals started suffering as your thyroid hormone reduced, and having gut issues will be creating further stresses. Might be worth checking sugar issues also if you are waking up nightly. Many members use the 'adrenal-cocktail' successfully.
I definitely wouldn't be increasing NDT dose until your body is more tolerant.
It depends what you are hoping to achieve from your test.
Saliva tests will measure how your circadian pattern is performing, as this can become quite skewed with long term un/mis-managed thyroid issues. Saliva tests can be found within the 'private testing' page on the ThyroidUK website. I know Blue Horizon, Genova and Regenerus do them but don't know which is the cheapest or most common. You could write your own post asking for members suggestions and experiences regarding a saliva stress test. thyroiduk.org/testing/priva...
Alternatively the medical profession will look at blood serum levels before 9am which is when cortisol levels should be highest, to ensure the adrenals are capable of secreting enough.
It's a drink we make that basically consists of electrolytes sodium, potassium, magnesium, together with Vit C and other depending on which recipe you use that offers the adrenals the minerals they need to best recover.
Years ago it focussed on orange juice (Vit C), a banana or cream of tartar (potassium) and salt blended together. Nowadays people use coconut water but I don’t like coconut water much so use Dr Myhills Sunshine Salt in plain warm water, although there are also plenty of hydration drinks on the market that incorporate these minerals. I also use a Vit C powder and sometimes protein powder or collagen if I use orange juice to balance out the sugar content.
I found it very useful after being first diagnosed with hashi-hypo but still use it sometimes now ten years later. If you google it you will fond lots more info and recipes
it's unusual to be prescribed thyroid hormones with these results ... so i'm assuming you were prescribed NDT based largely on symptoms of hypothyroidism ?
T4 /T3 levels like that are common in healthy people , 'T4 a little higher than T3' is common.... (and so is 'T3 a little higher than T4' ) so it doesn't necessarily indicate a thyroid problem , and having levels below 50% does not necessarily indicate a problem either (see the graph of ankrah-tetteh et al. 2008 , a study of 10 individuals on this page thyroidpatients.ca/2019/09/... )
4th Oct '24 ~ were you on 1+ 1/2grains NDT for this test, or have you increased since then ?
FT4: 12.61 (9.01 - 19.04) 35%
FT3: 4.38 (2.43 - 6.01) 54%
so taking NDT has basically reversed your T4:T3 levels .... your T3 is now a bit higher than your T4 (and consequently , your TSH has fallen).
but perhaps your body prefers T4 higher than T3 ?
perhaps T3 at 54 % is too high for your body to be comfortable .....the symptoms of diarrhoea /eating constantly/ weak legs would make me consider overmedication too .
it's hard to say much without knowing why your private endo decided to give you NDT , or what your original symptoms were compared to how you feel on NDT , but with no clear diagnosis , no obvious reason to be taking them , i would be nervous about taking higher doses , and with those symptoms, if it was me i would be considering going back to a lower dose. or trying something else like Levo + smaller amount of T3
And i already did an adrenal saliva test with my private endo in 2022 but he still felt it was a good idea to be on low dose NDT 1/4 gr morning and afternoon at the beginning. The result of the saliva test was very slight HPA dysregulation.
The last bloods i did in November i was taking 1gr NDT morning and 1/2 gr afternoon and have been taking that since November. So i must be horribly horribly overmedicated by now. I feel terrible. I was prescribed NDT initially because he felt my FT 3 was too low and should be optimal.
so perhaps what has happened now is the thyroid overmedication has forced the adrenals to go nuts. Thats certainly what it feels like.
i'd want to do some more bloods now to see what's what, Nov is a long time ago , things have probably changed .
but with those symptoms , personally i would try reducing dose a little bit for a couple of months and see how that feels . When in doubt , sometimes you just have to trust your gut instinct ~ if it feels like your adrenals have gone nuts , and you feel overmedicated , then try taking a bit less.
honestly , i've no idea what justification there is for him, or anyone, to so confidently say your T3 was not 'optimal' at 35%.... as far as i can see healthy people have T3 levels that sit at various points within the range (while staying within their own personal narrow bands, if you see what i mean ) ... some people will be optimal at 75% certainly , but 75% would presumably be a bit too much for those whose personal set point was eg around 30%....
i realise we can't directly compare levels of 'healthy/ unmedicated' to 'taking thyroid hormone replacement' , cos taking thyroid hormones changes so many variables...but i just can't see any logic in believing that everyone needs 'x' % to be optimal.
and i'm not saying these levels are definitely too much for you , they may not be ...you may be someone whose healthy/ optimal is higher, we just don't know ..... presumably you didn't feel healthy or optimal when you saw him.......just saying that the easiest way to see if it's overmedication is to try a lower dose for a while and just observe what changes.
I just did some more bloods this morning. I am just feeling so awful though. I think i really need professional advice for this. I haven’t been able to test the cortisol levels yet but i can feel how high they are at night, they stop me from sleeping. Am very slow to get going in the morning but thats partly because am only sleeping 3 hours a night
hopefully bloods might make it easier to decide what to do.... but don't underestimate your gut instinct. humans have successfully relied on it for millenia (and it's free).
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