Switching from Thyronorm 88mcg (levothyroxine) ... - Thyroid UK

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Switching from Thyronorm 88mcg (levothyroxine) to Thiroyd(NDT)

arpan13 profile image
18 Replies

Hi all,

My wife has been on levo since past 5 years. She is 32 yrs. We have acquired Thiroyd from Thailand. I was wondering whether she should start with 1/2 or 1 grain. Does she need to swallow or chew the pill ? I have also ordered a heart rate monitor and a digital thermometer to keep the heart rate and temps in check. She has gained a lot of weight due to hypothyroidism. Current weight is 75 kgs. She has had three miscarriages and hysteroscopy laproscopy was done on Nov 2015 for removal of adhesions.

Latest Thyroid reports:

FT3: 2.93 pg/ml

FT4: 1.55ng/dl

TSH: 0.59 uiu/ml

Regards,

Arpan.

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arpan13
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18 Replies
fibrolinda profile image
fibrolinda

1 grain NDT is equivalent to 75-100 Levi so should be okay starting with 1 grain then slowly increasing by 1/4 -1/2 grain every 2 weeks till symptoms reduce, watching blood pressure, heart rate and body temp. Hold at 2 grains for six weeks and get blood tests. This is advise found on this forum via 'related posts' on the right side of this page :) Has your wife had B12, vitamin D, Folate and FERRITIN levels checked? These need to be optimum not just 'in range'.

I'm just someone on the journey to be as well as I can too. I will say from personal experience it is easy to overshoot your sweet spot, the right dose for you. I found a quarter dose increase at a time best for me :)

Good luck and read as much as you can on the forum, so much to learn and I seem to learn something new every week :O

Linda x

arpan13 profile image
arpan13 in reply tofibrolinda

Hi fibrolinda,

Thanks for the prompt response and valuable information. Well we had done Vit D and B12 reports in Feb 2017:

As on 26-Feb-2017:

Vit D : 19 ng/ml

Vit B12 : 389.7 pg/ml

Should we get the reports done again? We will surely get the folate and ferritin reports done.

And whats the best way to consume the pills, Chew them or just swallow ?

I also read about splitting the dosage ( morning/ afternoon ). So i am a little confused to as to how to do it the right way.

Will be starting with NDT dosage tomorrow.

Regards,

Arpan.

Clarebear profile image
Clarebear in reply toarpan13

I do split my dose of 2.25 grains into 1.25 in the morning and 1 in the evening. I used to take it all on one go but noticed in my Fitbit that my pulse went quite high a few hours after taking the dose. Splitting it seems to have helped.

I had to go really slowly with increasing NDT. I started on half a grain and it took me a year to get to 2.25 grains as every time I increased I had some horrible side effects. It was well worth persisting though as I usually feel well now (had recent blip when I forgot a couple of doses) but fine again now back to my usual dose.

I wrote a blog about my experiences of starting NDT adjusting the dosage - you should be able to see it I think if you click my name.

Hope your wife feels better soon.

arpan13 profile image
arpan13 in reply toClarebear

Great info. thanks :) Will mostly start off with 1/2 grain tomorrow onwards as i dont want her to overdose and check for symptoms. Hope every thing goes well. This forum rocks :)

fibrolinda profile image
fibrolinda in reply toarpan13

Some split dose some like me don't. Some take first thing in the morning some like me at bedtime. Some even take during the night, I'm afraid it really is trial and error to find what works best for your wife. Don't chew swallow whole with half to full glass of water. No food or other drink or supplements for an hour before and two hours after.

What is she taking for her awful vitamin d level?

B12 is best nearer the top of the range or even over 900 plus, below 500 can cause permanent neurological damage according to the Pernicious anaemia society. What is she taking for this?

Are you in the uk? Thyroid uk website is a great source of info... and education :) plus if needed to get tests done private then links through there to Blue Horizon and Medichecks, both similar costs but do special offers so best to check both.

Ft3

Ft4

TSH

FERRITIN

FOLATE

B12

VITAMIN D

and antibodies for less than £100 and imho well worth doing to see exactly where you are. If you do a search for vitamin and minerals on the forum you will see how important to get them optimal to help the Thyroid. Some on here like SeasideSusie are very very knowledgeable on this.

Sorry I am a mite foggy so bound to have forgotten loads.

Your wife is very lucky to have your support :)

Linda x

arpan13 profile image
arpan13 in reply tofibrolinda

I really appreciate the support from experienced people like you :)

We are from India. As you mentioned will ask her to swallow the pill and will definately look into optimizing Vit D and B12 levels. When should i get the reports done for FT3,FT4 ,TSH ,FERRITIN ,FOLATE ,B12 ,VITAMIN D and antibodies?

She has taken 2 sachets of Cholecalciferol for Vit D after feb reports were done.

Nothing has been done for B12.

Will consult a doctor soon for the same.

She also has a lot of swellings in the feet especially in the ankles. Seems like water retention. Could it be due to hypothyroidism? Just praying that NDT works for us..

Phoenix605 profile image
Phoenix605

Hi Arpan and welcome! Yes your wifes ankle swelling could well be linked to being hypo. once i finally got on the right dose I saw my ankle bones for the first time in years and went down a shoe size.

Definately get the vitamin tests recommended above, I dont think she had nearly enough cholecalciferol to correct her deficiency. I would get the tests done now before suplementing etc so you know where you stand before you start tinkering. You cant do any harm with folate and b12 as your body just pees out any excess but vit d and iron can reach toxic levels and cause all sorts of nasty problems.

I was given the following advice for levels on here

Vit d - over 80

b12 - above 500 and up towards 1000 is better

folate - middle of its range

ferritin - above 80 and better around 100 for menstruating females

Are you aware of good testing protocols? Over night fast and get tests done early, generally earliest available appt recommended and by 9am. I would pose another question re how long to leave off NDT before testing as I only know the recommendations for levo (24 hours) or T3 (12 hours) If she takes any supplement containing biotin stop for a few days before the test as it can skew the test results. Take all supplements well away from the NDT as some like calcium, iron and vit d can stop absorption of the thyroid hormone (natural or synthetic). Usually recommended to wait 1 hour after taking the hormones before eating or drinking anything other than water and 2 hours til taking any supplements. If splitting dose dont take hormones until 4 hours after a heavy protein meal, anything containing calcium or supplements.

It may be worth trying single dose initially as it is easier to manage, she can always change to split dose if it doesnt suit, it is harder to put doses together than split them. She may need to play around with when she takes it to find what suits her best and is easiest to manage. I take mine a midday which is very unusual but I do odd shifts and it works for me.

Once you have test results post them including the ranges and you will get plenty of good advice on supplements or hormone dose increases. Ranges are usually in brackets eg TSH 1.3 (0.27-4.2) and are essential as different labs use different ranges so what looks like a good reading can be anything but if an unfamiliar range is used.

As this is a UK forum you may need to remind people you are in India so they dont point you at sources that are not relevant eg tell you to print out your local NHS guidelines for vit d supplementation to take to a GP appt 🤔

arpan13 profile image
arpan13 in reply toPhoenix605

Hi Phoenix605 , glad to hear that your ankle swelling got resolved :) We plan to get all the above reports done this Sunday and will post the readings with ranges.We are making sure not to eat anything for two hours after taking NDT. Will follow the test protocol mentioned by you.

Its been two days since we started Thiroyd 1/2 grain in the morning. Swellings on face, fingers and feet have increased and I am a little worried. Should I increment the dosage to 1 grain ?

Phoenix605 profile image
Phoenix605 in reply toarpan13

Hi Arphan, I am afraid My knowledge of NDT is only from reading on the forum as I take levo only at the moment but am considering the switch also.

I do know that levo has a long half life so your wifes body will not have noticed that she stopped taking it yet. It may be just adjusting to the addition of T3, T2 and T1 it hasnt had before. From the calculation Fibrolinda gave I believe she suggested 1 grain would be a safe starting dose ompared to her current levo dose, so you could give it a try. Whilst slow and steady is the golden rule with adjusting hormones you dont want to start too low or she will have not just adjusting to cope with but low levels also. Levo is only increased by 25 mcg every 6 weeks but NDT is by quarter grains every Couple of weeks. Her body will soon tell her if you are going too fast as she will most likely react to a sudden influx of too much T3 with feeling jittery or palpitations at which point cut back to previous dose for a few days and try again.

You are monitoring pulse and body temp so if either jump or she starts having palpitations you can cut back (T3 has a short half life). It is adjusting to the new hormones that some find difficulty with so I lot will be down to how your wife feels. It may just be transition and the fluid will drop once she has stabilised on the right dose of the new meds. My heart rate has dropped slightly and the fluid in my ankles is building up, I know from experience I need an increase in levo again so just waiting for bloods to come back and confirm, for me fluid is a good barometer.

Not all NDT is the same, like levo they can have different fillers and binders.If the swelling persists and everything else is ok she could try taking an antihisthamine an hour before the NDT, if it helps you may need to look at a different brand again it is just trial and error.

Do a search on the site for NDT and you should find a lot of threads - both advice on best way to transition and personal experiences of people who have changed which should give you a good idea of the types of issues that might arise or what might indicate it is not suiting.

If in doubt pose a new question there are always plenty of people happy to help, I think your initial post was a slow day or you got caught out by the time difference, some people only look at the 'latest' posts. 😁

arpan13 profile image
arpan13 in reply toPhoenix605

Hi all,

Phoenix605 , thanks for all the info :)

Today we have increased the dose to 1 grain. Yesterday she was having headache and was feeling very low on energy. Swelling in feet had increased marginally. Today morning after taking 1 grain she was feeling fresh and stated that she is feeling much better than yesterday. The swelling in her feet has not reduced yet :( . I guess we need to wait for few days. Heart rate and temperature seems to be normal. Will check again today in the evening.

I am really hoping that NDT works for us but in a worst case scenario if NDT does not work for us then can we safely switch back to levo and expect this feet swelling to subside?

Phoenix605 profile image
Phoenix605 in reply toarpan13

you can certainly switch back if necessary but it sounds like she is tolerating the change well. hopefully when she is optimal the swelling will go down and stay down. If you do decide to swap back, you will need to get more advice as I believe it is more complicated than just a straight swap due to the slower take up of levo.

Whilst the aim is symptom free many people find there are one or two which dont fully resolve which ever treatmen choice they make so she may have to choose which residual symptoms are least bothersome if they are different on levo or NDT. If its a choice between being tired all the time or swollen ankles I know which I would hate the least!

Unless she has an adverse reaction you need to give it time, keep doing the small raises until she feels well and accept it is sometimes 2 steps forward and one back. The world of hormones is slow it may be months before she feels the full benefit and is stable. She also may just be very fluid sensitive which can be useful for telling her when a review is needed.

PS I told GP today my ankles said I needed a raise, she said my blood agreed with them😂 😂

arpan13 profile image
arpan13 in reply toPhoenix605

Your GP seems to be a nice person :) Swelling has reduced slightly when i checked today morning. I just called her up and she seems to be doing fine :) Sticking to 1 grain for now. No adverse reactions so far, touch wood. Temperature yesterday was 97.7 degrees and heart beat was around 75.

arpan13 profile image
arpan13

Hi all,

Will be getting the tests done tomorrow morning around 9 am ( FT3,FT4 ,TSH ,FERRITIN ,FOLATE ,B12 ,VITAMIN D and antibodies) .Is Folate test the same as Folic acid test ? Planning to consume NDT after the tests are done. Please correct me if I am wrong. Headaches have reduced and less painful. Swelling in feet is stable, neither increasing nor decreasing. Energy level seems to have increased :)

arpan13 profile image
arpan13

Hi all,

Phoenix605

fibrolinda

Clarebear

We have received the test reports. We went for a complete package. Only Anti thyroid anti-bodies test is pending. ESR and C-reative protien is too high :( .

We have been taking 1 grain for now and its going to be 2 weeks this monday.

Shall I increase the dosage by 1/ 4 ?

And what should we do for Vit D and B12 ?

BLOOD ELEMENT ANALYSIS PROFILE,HEMOGRAM - 6 PART (DIFF),HBA :

MONOCYTES - ABSOLUTE COUNT : 0.18 , Unit:10^3 / μL

Range : 0.2 - 1

MEAN CORP.HEMO.CONC(MCHC) : 29.6 g/dL

Range : 31.5-34.5

BARIUM ICP-MS : 30.4 μg/l

Range < 30

HIGH SENSITIVITY C-REACTIVE PROTEIN (hs-CRP) NEPHELOMETRY :

>9.65 mg/L

Reference Range :-

Risk of coronary Heart Disease.

< 1.00 -- Low Risk

1.00 - 3.00 -- Average Risk

> 3.00 -- High Risk

IRON : 67.4 μg/dl

Reference Range :

Male : 70 - 180

Female : 60 - 180

TOTAL IRON BINDING CAPACITY (TIBC) : 353 μg/dl

Reference Range :

Male: 225 - 535 μg/dl Female: 215 - 535 μg/dl

% TRANSFERRIN SATURATION CALCULATED : 19.09 %

Reference Range :

13 - 45

FERRITIN C.L.I.A : 39.9 ng/ml

Reference Range :

Men: 22-322 ng/ml

Women: 10-291 ng/ml

TOTAL CHOLESTEROL : 201 mg/dl

Range :125-200

THYROID STIMULATING HORMONE (TSH) C.L.I.A : 0.95 μIU/ml

Range: 0.3-5.5

FREE TRIIODOTHYRONINE (FT3) C.L.I.A : 3 pg/ml

Range: 1.7-4.2

FREE THYROXINE (FT4) C.L.I.A: 0.89 ng/dl

Range: 0.7-1.8

25-OH VITAMIN D (TOTAL) C.L.I.A : 41.25 ng/ml

Reference Range :

DEFICIENCY : <20 ng/ml

INSUFFICIENCY : 20-30 ng/ml

SUFFICIENCY : 30-100 ng/ml

TOXICITY : >100 ng/ml

ERYTHROCYTE SEDIMENTATION RATE (ESR) WESTERGREN : 79

mm / hr

Reference Range :-

Male : 0-15

Female : 0-20

FOLATE C.L.I.A : 20.2 ng/ml

Reference Range :

> 5.38 ng/ml

VITAMIN B-12 C.L.I.A : 328

pg/ml

Reference Range :-

Normal : 211 - 911 pg/ml

fibrolinda profile image
fibrolinda in reply toarpan13

Only just got notified of your post sorry love.

My opinion only based on my experience and reading sooooooo much on here :)

B12 too low for thyroid better over 500, even nearer 900 (keep mine between 800-900) I started with 5000ug for a month then went on too 2000 for a few months. Now take 1500 which keeps me near 900.

Balance the b vitamins with a multi b

Ferritin is bit low, best mid range take ferrous FUMERATE 210 mg and vitamin c 1000 mg with each tab I started with 3 a day for a month, then two then one then down to every other day as I overshot.

Vitamin d best over 100 I took spray 3000 iu and am down to 800 iu for our British summer :)

With vitamin d its important to take vitamin k2 Mk 7 which sends calcium to bones not organs.

I would increase dosage of NDT by 1/2 if her heart rate goes up to much try just 1/4 for a couple of weeks then another 1/4, I could only increase 1/4 at a time or my heart rate shot up.

I heard about turmeric helping inflammation so tried it and so far CRP dropped from 11 to 5.5:) and for reasons to long to explain I hadn't taken any for two weeks before that blood test. Back on it now and knee caps appearing for first time in years, hurrah.

It can be best to do a new post if not posted for a while then less chance of being missed.

Give your wife a hug for me

Linda x

arpan13 profile image
arpan13 in reply tofibrolinda

Hi fibrolinda ,

She is on 1+1/2 grain for now. I have ordered supplements and started with the B12 supplement (Nuroday) already . Have also added turmeric in her diet for reduction of inflammation :)

My wife is so thankful to you and everyone who has been so helpful and supportive :)

Will make sure that the ferritin , vit d and B12 reach optimal levels.

**Have ordered online :

Solgar Gentle Iron 25 Mg (Iron Bisglycinate) 180 Vegetable Capsules

Jarrow Formulas, Methyl B-12, Cherry Flavor, 500 mcg, 100 Lozenges

**Purchased locally:

Vit C Limcee 500mcg Chewable Tablets

**My aunt is coming from UK to India on 1st of August, have asked her to get these:

(1) Vitamin K2 MK 7 200mcg – 365 Vegetarian and Vegan Tablets, One Year Supply of Vitamin K2 Menaquinon MK7 by Nu U Nutrition

(2)Sundown Naturals ,Iron, 65 mg 240 tablets

(3)Vitamin B12 Methylcobalamin 1000mcg 180 Tablets (6 Month Supply) by Nutribioticals

(4)Vitamin C 1000mg 250 Tablets with Rose Hips High Strength Supplement by Rite Flex

Phoenix605 profile image
Phoenix605 in reply toarpan13

Hi Arphan, sounds like she is tolerating the change to ndt well. I have read Fibrolindas advice and it looks spot on to me and is certainly very similar to what I was given. I would try supplementing as advised for three-four months then retest, especially the iron and vit d as the body cannot get rid of excess unlike the water soluble B's.

If you can get sublingual B12 as methocobalamin rather than cyanocobalamin it is better absorbed and utilised in this form. If you can get vit d in softgel oil capsules it is better than tablets as vit d is fat soluble. Alternatively take the vit d with the fattiest meal of the day or a couple of spoons of something like full fat yoghurt.

Take all supplements at least a couple of hours from the NDT so they dont interfere with its uptake. I take my levo first thing, my b's around lunch then vit d with cofactors at teatime to prevent issues. The biggie is iron it should be taken at least 2 hours after or at least 4 hours before NDT or it will stop absorption. Take each tablet with 1000mg vit c, everyone here recommends it to aid absorption and counteract the constipation it can cause. Alternatively, try adding a couple of 400g portions of liver to her diet, if she is not a fan (im not!!) it can be minced up in smaller portions and hidden in other stronger tasting meals like curries or bolognese quite successfully 😀. If in doubt search for user Seasidesusie and look at her comments, she gives excellent nutrition/supplement advice. Also look at the topics at the top of the homepage there are always lots to do with supplements and NDT.

Wishing you both well

Tracie

arpan13 profile image
arpan13 in reply toPhoenix605

Hi Phoenix605 ,

I have ordered Jarrow Formulas, Methyl B-12, Cherry Flavor, 500 mcg, 100 Lozenges. These are sublingual.

I have started giving B12 before going off to sleep. Other supplements are yet to be delivered.

Unfortunately i wont be able to ad Liver in her diet as she is a vegan :(

We get Cholecalciferol sachets of vit d here, 60000 ui. Will be taking one sachet every month.

I will definately search for Seasidesusie and read her posts.

Thank you for your lovely wishes :)

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