I am wondering if I can get some advice on NDT medication. I finally found a private Endo Consultant at Spire Healthcare and had 1 consultation so far with my next appointment in a couple of weeks. He actually listens to me and treated me like a human being, which felt so nice after dealing with NHS Doctor's that treated me like a burden and said it was all in my head.
Anyway, I have raised TPO levels and he prescribed me NDT Erfa at 1/4 grain twice a day for 4 weeks then 1/2 grain twice a day for 4 weeks. I felt good for the first few days of taking it and felt like I had woken up and my hands and feet warmed up and I felt an overwhelming calmness. My cravings for caffeine and sugar just went away! Then that all disappeared and my symptoms came flooding back after a few days. Same thing happened when I increased the dose to 1/2 grain twice a day but the good feeling only lasted 1-2 days.
Does anyone know if this is normal and why it happens? I desperately want that feeling back
I had a hair appointment yesterday and it tired me out so much I felt like I wanted to throw up and felt panicked with feeling that level of tiredness. I have to rely on my partner to do everything, which he says he likes to do it and look after me but I just want my independence back and not be this burden. I know everyone else here feels or has felt similar so I apologise for moaning. I am fortunate in so many ways but just not so with my health and I get so frustrated with myself over it all.
Also, I keep reading about saliva cortisol tests but I haven't taken one and only had a blood test that showed normal. Is it helpful to take the test even when on thyroid meds? I have had bouts of extreme stress over the last 20years so it may show my adrenals are shot to bits 😂
Thank you x
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Singinginthewind
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Yes, it is sort of normal - as far as anything is where thyroid is concerned! Trouble is, there are so many variables that affect all things thyroid, and everybody's reactions are personal and unique. But, as to why it happens, it happens because you're not on a high enough dose yet. You are only taking 1 grain, which equals just 38 mcg T4 and 9 mcg T3, which is really not enough to make most hypos well. But, we have to start low and increase slowly to give your bodies time to adjust.
That said, your endo's way of doing things is not how I would have done it. I would have started on 1/4 grain for two weeks, then increased by 1/4 every two weeks until I got to 2 grains, then held for six weeks and retested. Could be that your body just doesn't like that protocol: increases too large and staying on them for too long.
But, things will improve as you continue to increase your dose, I'm sure. What is supposed to happen next? After the eight weeks are up?
As to the saliva test... What do you mean by 'normal'? Do you have the actual result and the range? Could be that it's in-range but too low in range. However, that too should improve as you increase your dose of thyroid hormone.
What about nutrients: vit D, vit B12, folate and ferritin? Have you had those tested? They all need to be optimal to get the best out of NDT.
Do you think it is rude if I ask my endo consultant to increase it for me every 2 weeks instead of 4? It has been 6 weeks now - 4weeks on 1/4grain twice a day and 2weeks on 1/2 grain twice a day. I have my appointment in 2 weeks and he said it it to see how I have got on with the NDT and if it hasn't improved my symptoms then he will make sure he finds the right solution for me. So, I have to wait to see if he decides to increase or maybe add t3? I am not sure yet. He has very good reviews so I hope something good comes from it.
I should have asked him for my results at the time. He said they showed normal but that doesn't mean anything if I feel as bad as I do and will treat me on how I feel and not to worry as he will help me.
Before that, I had some blood tests done in November last year with blue horizon and they showed:
Ferritin 68.59 (13 - 150 μg/L)
Total Vitamin D ▼ 51 (76 - 250 nmol/L)
Serum Folate ▼ 3.26 (3.89 - 26.80 ng/ml)
Vitamin B12 605.5 (197 - 771 pg/ml)
The rest of the results:
TSH 3.170 (0.27 - 4.20 mIU/L)
Free T4 16.29 (12 - 22 pmol/L)
Iron 8.1 5.83 (34.5 μmol/L)
UIBC 38.2 (24.2 - 70.1 μmol/L)
TIBC 46.3 (40.8 - 76.6 μmol/L)
Transferrin Saturation 17.5 (15 - 45 %)
Free T3 5.2 (3.1 - 6.8 pmol/L)
rT3 (by LS/MS/MS) 20 (10 - 24 ng/dL)
Thyroid Peroxidase
antibody
▲ 264 (0 - 24 IU/mL)
Zinc 13.20 (9.6 - 20.5 μmol/L)
Selenium 1.05 (0.75 - 1.46 μmol/L)
I take:
- Thorne Folate 5-MTHF 5mg
- BetterYou D3000+K2 (3sprays for 3000)
- Thorne Adrenal Cortex x 2 tabs (50mg each)
I have actually been wondering if there are certain times of the day I should take these vitamins for better results? and if they interfere with each other if taken all at the same time?
I did to take some b-vitamins a few months ago that gave me a huge surge of energy for a few days (felt like I could run a marathon!) but that disappeared so I just stopped taking them as I couldn't feel anything from them after that. I didn't want to OD on them as the bottle said they were 500% or something of daily allowance, I wondered why so much?
That's on the low side, so it would be a good idea to get your serum iron tested to see if that is also low.
Total Vitamin D ▼ 51 (76 - 250 nmol/L)
That's under-range!
Serum Folate ▼ 3.26 (3.89 - 26.80 ng/ml)
Under-range again.
Vitamin B12 605.5 (197 - 771 pg/ml)
That's not too bad. BUT was that test done whilst you were supplementing B12?
The rest of the results:
TSH 3.170 (0.27 - 4.20 mIU/L)
That is in-range, but too high. A euthyroid (no thyroid problems) TSH would be around 1, never over 2, and you are technically hypo when your TSH reaches 3.
Free T4 16.29 (12 - 22 pmol/L)
Free T3 5.2 (3.1 - 6.8 pmol/L)
They're not too bad, but it is taking too much TSH to get them to that level. That's the level they should be with a TSH of just 1.
Iron 8.1 5.83 (34.5 μmol/L)
Ah, so you have had serum iron done, and it is much too low. You should query this with your doctor, you need supplementary iron.
UIBC 38.2 (24.2 - 70.1 μmol/L)
TIBC 46.3 (40.8 - 76.6 μmol/L)
Transferrin Saturation 17.5 (15 - 45 %)
I don't know much about iron panels, but I can see the results are all pretty low.
rT3 (by LS/MS/MS) 20 (10 - 24 ng/dL)
Pointless test, doesn't give you any useful information.
Thyroid Peroxidase
antibody
▲ 264 (0 - 24 IU/mL)
You have Autoimmune Thyroiditis - aka Hashi's. So, blood test results are just a rough guide at best because levels will fluctuate. How you feel is far more important, so let's hope your endo really does go by that.
Zinc 13.20 (9.6 - 20.5 μmol/L)
A bit low. Check on symptoms of low zinc to see if you need to supplement.
Selenium 1.05 (0.75 - 1.46 μmol/L)
Also on the low side. So, you do have absorption problems - probably low stomach acid. Which will also affect absorption of your thyroid hormone replacement.
I take:
- Thorne Folate 5-MTHF 5mg
Your folate is low, so you do need to supplement folate BUT the B vits all work together, so need to be kept balanced. You would probably be better off taking a B complex - e.g. Thorne Basic B. You might not feel instantly better doing that - it all takes time - but neither will you if just continue just taking folate.
- BetterYou D3000+K2 (3sprays for 3000)
If you are taking vit D, you also need to take magnesium because they work together. If you take vit D without magnesium, it will deplete your stocks of magnesium.
- Thorne Adrenal Cortex x 2 tabs (50mg each)
I really don't know how useful this is. I think it helps some people, but not others.
I have actually been wondering if there are certain times of the day I should take these vitamins for better results? and if they interfere with each other if taken all at the same time?
I'm not sure there are times when the majority of supplements work better. But, the adrenal cortex probably needs to be taken early morning. When do you take your NDT? The Adrenal Cortex should be taken at least two hours away from it.
B vits are said to be better taken in the morning - at least two hours away from thyroid hormone - because they are supposed to have an energising effect. Can't say I've ever noticed it myself, but it's probably an individual thing.
Vit D, in pill form, should be taken at least four hours away from thyroid hormone, but as yours is a spray, it doesn't matter when you take it because it doesn't go into the gut. Magnesium, however, should also be taken four hours away from thyroid hormone (unless it's a spray) but is said to be best taken before bed because it can make you sleepy.
Iron - if/when - you start taking that, should be four hours away from thyroid hormone, and two hours away from everything else. Except for vit C. And it's vital to take vit C with it to help with absorption.
Do you think it is rude if I ask my endo consultant to increase it for me every 2 weeks instead of 4?
I don't think it would be rude, if you ask him politely, but if he has his fixed way of doing things, he probably won't agree. If you do increase every two weeks it should be 1/4 grain at a time, not 1/2.
Grey goose, thank you so much for taking the time to analyse my results like you have. It is extremely helpful as you answered all the things that I was worrying about and have taken that stress away. I feel like I should be laying you for this 🙂
I bought some Thorne Basic B supplements straight away and started 1 yesterday. I am also going to ask my consultant about the Iron.
I bought some zinc and selenium months ago and had a bad reaction to them - very irritable and terrible acid reflux.
I am looking at possibly taking some Ayurvedic supplements from an Ayurvedic practitioner to help with my gut health to help absorption. I also read about Buteyko breathing and a Frovlov apparatus to get more oxygen in my body to help with gut health and absorption. Will try anything 😄
I take my NDT 7.30am and then 12.30pm. both equal dose - half grain at a time at the moment.
What you probably need for your gut health is higher levels of stomach acid. Hypos tend to have low stomach acid, which makes digesting food and absorbing nutrients difficult. Increase the stomach acid and you increase the absorption.
That explains why I live on beige foods 🙃as I struggle to digest most things. Do you know of anyone that has had any success with supplements or a procedure to increase the stomach acid? I will give anything a try.
I would say the Feeling better, feeling worse <increase> feeling better, feeling worse <increase> feeling better is pretty normal when you are still at low doses of NDT.
Because you don't have enough hormone you seem to advance momentarily, then start to feel rough again. But the fact you feel good on increasing means the meds are actually working.
I would say it's way too premature for your endo to be thinking of adding t3. I think the average dose for people on NDT is 3 grains. Some people end up on as much as 5 or rarely 6. You need time to see how it works.
Sometimes adrenal problems prevent getting the full benefit from the meds. So your doctor might want to investigate that with a saliva test, but usually two are needed, one at the beginning of trying ndt/t3 and then another after a few months to see if the t3 has brought up your cortisol levels.
If you reach around 3 - 3 1/2 grains and still don't feel right then that is the time to consider adding supplementary t3/t4.
Thank you, Alanna 🙂 This is really helpful. I have read too many overnight success stories and wondered why the same wasn't happening to me so I'm relieved that it's normal to be up and down initially.
I have actually just received a response from my endo to say that doing a saliva test is a good idea. Do you know the best one to take? I'll have a search through the forum too.
I felt beyond exhausted when I started NDT and literally fell asleep if I sat down and had bouts of feeling energetic, warmth etc. It did settle when I got to the right level and I feel so much better on it. Hang in there and keep an eye on your vitamins etc. I have found out myself how bad you can feel with a vitamin deficiency and conversely, how much better you feel when at optimum levels. You have a helpful consultant and that’s fantastic.
Yes I feel much better than when I was in levo. I do have a severe vit b12 deficiency that started after thyroid issues and that affects me more. I’d keep an eye on your b12 and folate and read up about it if you have problems after sorting your thyroid levels. It took me a lot of research to persuade GP’s how much treatment I needed. One step at a time though.
The complete exhaustion was only for a few weeks, after that only a bit tired, then when I was on correct dose I had more energy than when on Levi.
It is usually recommended to start low and go slow, raising NDT by 30 mg (1/2 grain) daily no sooner than every other week to allow your body to adjust to the T3 in NDT.But it is also not recommended to stay too long on too low a dose for you as that will cause hypo symptoms to return. An average maintenance dose is said to be 2-3.5 grains daily, with some needing less and some more. My own personal experience is that people who required higher doses of levo might need higher doses of NDT as well. So, as pointed out by others, you need to go by symptom-relief rather than lab results.
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x
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