Shall I pursue T3 medication or even NDT? - Thyroid UK

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Shall I pursue T3 medication or even NDT?

Bari77
Bari77

Hi all, I am a newbie here although I have been hypothyroid for nearly 20 years, taking Levothyroxine. I am currently on 100 mcg Levothyroxine/day taken first thing in the morning.

I have received my Thriva blood test results today:

TSH 2.19 (range 0.27 - 4.20) My GP blood test result a month ago was 0.94 (0.35-4.78)

T4 total 82.9 (66-181)

FT4 14.4 (12-22)

FT3 3.62 (3.1-6.8)

Ferritin 139 (13-150)

Active B12 88.9

Folate 25.6 (8.83-60.8)

D 88 (50-175)

How do these look to you?

The reason why I am asking for T3 is that I have been having symptoms of fatigue, brain fog, irritability, join and muscle aches, which I realise may be due to something else than thyroid. What would be the reason for going down T3 or even NDT route to try the effect? I have a phone consultation with NHS endocrinologist on Thursday morning. Anything I can point out or ask? Although from my previous experience, any mention of FT3 measuring and T3 medication or NDT received a smirk and a dismissal right away. I just find it hard to fight my corner when it comes to medical professionals. Any insight or suggestions will be greatly received. Thank you.

78 Replies
oldestnewest

Those results suggest that you are undermedicated and need an increase in levothyroxine. I would try an increase first.

Bari77
Bari77
in reply to Lalatoot

Thank you. The endo suggested increase last time but I wanted to stay on 100 - in my mind increase may lead to more increase - I know this is silly but I thought I can support my thyroid another ways than increasing meds. May need to consider it though.

greygoose
greygoose
in reply to Bari77

In what way can you support your thyroid other than increasing 'meds'? There is no other way. Your thyroid is failing and can no-longer make enough hormone to keep you well. You can only replace a hormone with a hormone. And, it's not 'support' that your thyroid needs, anyway. Once you get to this stage, there's nothing that can be done to 'support' your thyroid - and probably never was. This idea of 'supporting' thyroids was invented by supplement manufacturers, to sell supplements, based on the fact that iodine is necessary for making thyroid hormone. From there they went on to iodine 'supporting' the thyroid, and improving it's function. Which is rot. You don't see things like kidney 'support' supplements, or brain 'support', do you? That's because there's no one nutrient that they can pinpoint a particular need for. But, in reality, the worst thing you can do for your thyroid is give it iodine, if it doesn't need it.

So, forget the thyroid, its day is done. Increase your levo in order to keep the rest of your body healthy. That's the best 'support' you can give yourself. :)

janeroar
janeroar
in reply to greygoose

Greygoose hello. I normally agree with everything you say and you’re an absolute star on here but I have read research to suggest hypo people taking selenium had reduced need for T4 and some didn’t need it at all. Pls correct me if that’s wrong 🤗

greygoose
greygoose
in reply to janeroar

I cannot say that is wrong, because I have never read that. But, I somehow doubt it. And, I'm pretty sure that it would depend on why you were hypo - there are all sorts of causes. And, I believe low selenium is one of them. Do you know why you are hypo? Have you actually tried taking selenium to reverse your hypothyroidism? You can read such a lot of contradictory things about thyroid, and some of them are way off the mark. But, the proof of the pudding is in the eating, I always say. :)

Ladybex
Ladybex
in reply to greygoose

Definitely agree with the proof is in the foods we eat 👍

greygoose
greygoose
in reply to Ladybex

Ummm… I'm not quite sure that's what I meant. :D

Jeppy
Jeppy
in reply to greygoose

😁proof of pud is what we actually absorb

greygoose
greygoose
in reply to Jeppy

That's not really what we were talking about. We were talking about reversing hypothyroidism with nutritional supplements. The proof would actually be that the person ends up with a TSH of around 1, Frees around mid-range, no symptoms, and able to maintain that well-being without taking thyroid hormone.

Jeppy
Jeppy
in reply to greygoose

Yes of course.

Bari77
Bari77
in reply to greygoose

I hear what you are saying and take it on board. Iodine is definitely a supplement, like most of them, that people need to know that they are lacking before taking it. Any supplement can be dangerous and people do not realise this, unfortunately. Thank you for sharing your view and experience. It is greatly appreciated.

greygoose
greygoose
in reply to Bari77

You're welcome. :)

Ladybex
Ladybex
in reply to Bari77

I use iodine salt for seasoning ...

SlowDragon
SlowDragonAdministrator
in reply to Ladybex

No one on levothyroxine should take extra iodine, especially with Hashimoto’s

Levothyroxine already contains iodine

greygoose
greygoose
in reply to Ladybex

Not a good idea.

Hidden
Hidden
in reply to Bari77

Greygoose is right. Unfortunately, there are some "functional" or "natural" practitioners who claim you can support and nourish your thyroid back to health, or rebalance your whole endocrine system (and of course they sell their own supplements to achieve this). My own experience tells me they are wrong; if you have Hashimoto´s, your hormone needs are likely to increase as your thyroid gland is slowly destroyed. Please don´t be afraid of taking more levothyroxine if you don´t feel well; if you feel unwell, it´s because your body is telling you it needs an increase.

kikiweight
kikiweight
in reply to Hidden

Chiming in here. I recently fell for this and bought a bunch of pricey ‘thyroid support’ supplements. All did nothing.

Ladybex
Ladybex
in reply to Bari77

You can look into eating different foods .... alternative medicines ...

I have and I haven’t had to increase my dosage of Levo

Best wishes and take care 👍

Bari77
Bari77
in reply to Ladybex

Thanks for your message. It is encouraging to hear you have been able to help yourself. We are all so different and it is difficult to say what will. I guess it is trial and error. Hence the increase in meds is simpler and faster acting. I would like to find out about your journey. Is it allowed on here? Or would we need to private message? Sorry I am new here so not sure what is OK and what is not. Of course I respect the rules and people's privacy.

SeasideSusie
SeasideSusieAdministrator

Bari77

TSH 2.19 (range 0.27 - 4.20) My GP blood test result a month ago was 0.94 (0.35-4.78)

That's quite a difference in your TSH level. Did you do both tests under exactly the same conditions? We always advise thyroid tests should be done nolater than 9am, nothing to eat or drink except water before the test, and last dose of Levo 24 hours before test.

Have you had thyroid antibodies tested?

T4 total 82.9 (66-181)

FT4 14.4 (12-22)

FT3 3.62 (3.1-6.8)

The aim of a treated Hypo patient on Levo, generally, is for TSH to be 1 or below with FT4 and FT3 in the upper part of their ranges. Your results show that you are undermedicated and you should ask for an increase in your Levo of 25mcg now, retest in 6 weeks, repeat if necessary until your levels are where they need to be for you to feel well.

Your vitamin levels aren't too bad although Vit D is recommended to be 100-150nmol/L by the Vit D Council/Vit D Society and I would want my Active B12 level over 100.

Once your TSH is down to 1 or below that will give you the highest possible FT4. If your FT3 remains low with a high FT4 then that shows poor conversion and that's when to consider adding T3. There is no indication for it at the moment, but there is a need for an increase in Levo.

Bari77
Bari77
in reply to SeasideSusie

Thank you for your message.

That's quite a difference in your TSH level. Did you do both tests under exactly the same conditions? It was in the morning, fasting but I took TSH the morning of GP test not Thriva - it may explain the difference?

Antibodies results:

Ati TPO - <9 (<37.5)

Anti Thyroglobulin 11 (<115)

Thank you for explaining about T3 .

Although I am somewhat reluctant to increase dose, I understand that it may be necessary for me to see if symptoms improve.

Do you know of any resource I could look at regarding switching from Levothyroxine to NDT? I would like to see pros and cons and possibly try it.

Thanks.

SeasideSusie
SeasideSusieAdministrator
in reply to Bari77

Bari77

but I took TSH the morning of GP test not Thriva - it may explain the difference?

?? Do you mean you took levo on the morning of the GP test?

Although I am somewhat reluctant to increase dose, I understand that it may be necessary for me to see if symptoms improve.

Why are you reluctant to increase dose?

Do you know of any resource I could look at regarding switching from Levothyroxine to NDT? I would like to see pros and cons and possibly try it.

Your results show you need more T4 at this stage (Levo), not a combination of T4 and T3 (NDT). Unless you have a prescription NDT is very difficult to source at the moment, the Thai NDT (only one brand available) seems to be out of stock at virtually every supplier known.

Bari77
Bari77
in reply to SeasideSusie

Thanks again!

Yes I did take the Levo on the morning of GP test as I read the conditions here afterwards.

My reluctance is just that I don't want to keep increasing (in my mind if you increase, it will lead to more sluggish thyroid and increase again). I know silly but that is how I feel - I generally don't take any kind of medications and try to work on things natural way. But I understand that if needs must, I may have no other option or else my symptoms may not go away. I also know that sluggish adrenals may be problematic and want to do a saliva cortisol test to see if I need to support adrenals. I have also read about mercury's effect on thyroid but that is another ballgame entirely. At the end of the day, I just want to feel well and live my life without symptoms like all the people on this forum that I am glad I have become member of and I appreciate all the help and experience you share with others.

SeasideSusie
SeasideSusieAdministrator
in reply to Bari77

Bari77

My reluctance is just that I don't want to keep increasing (in my mind if you increase, it will lead to more sluggish thyroid and increase again).

When you are hypothyroid and your thyroid is no longer producing the right amount of thyroid hormone to keep you well, you replace that hormone. You find the right dose that keeps your levels stable. Increasing isn't going make you thyroid more sluggish, you just need to find the right dose.

SlowDragon
SlowDragonAdministrator
in reply to Bari77

If you were to try adding any T3 or NDt it will switch your own thyroid output right down as TSH will become very low (suppressed)

Almost any dose of T3 or NDT will suppress TSH

At the moment you need next 25mcg dose increase in levothyroxine

Essential to regularly retest vitamin D, folate, ferritin and B12

Bari77
Bari77
in reply to SlowDragon

Thank you.

Hidden
Hidden
in reply to Bari77

If you take T3/NDT, your own TSH will most likely drop below 0, at which point your thyroid gland will not be producing any hormones at all on its own.

Even though I take NDT myself, and feel best that way, I´d advise you NOT to go down that road until you´ve reached a dose of levo that keeps your FTs optimal (upper part of range). Only then do you know if you convert T4 to T3 well enough. As long as your FT4 levels are suboptimal, you cannot know this.

The reason I am telling you not to consider NDT or T3 at this point is because it´s not without complications...availability of Thai NDT is one problem at the moment. Cost is another (goes for prescription NDT as well as synthetic T3 in the UK). Plus, the fact that your labs will most likely look different (very low or suppressed TSH) can make doctors panic and try to force you off those meds. I have been on NDT for five years now (prescribed by doctor, not in the UK), feel much better on it than I ever did on levo, but sometimes wish I had done well on levo only so that I did not have to fight doctors all the time, Because, unfortunately, most doctors only care about the TSH...which is likely to be very low on T3. And, despite the fact that one doctor put me on NDT, other doctors are trying all the time to force me off it and back on levo (I just posted about this problem yesterday).

Just to give you a comparison: I worked my way up to 200 mcg of levo daily, stayed on that dose for a couple of years, had FT4 levels at the top of range, but my FT3 levels were not even halfway through range. So I am a poor converter. However, many people are able to convert enough T4 to T3 once they are on the right dose of levo for their needs. If you belong to that category, why take another drug that is both harder to get and more expensive...?

Bari77
Bari77
in reply to Hidden

Thank you so much for sharing your experience and your advice. It clarifies things a lot in terms of individual hormones and how they affect each other. I can see that without going through the process and jumping onto T3 or NDT quickly I could make things more difficult and definitely more expensive as you rightly point out. Tomorrow, I will ask the endocrinologist to increase dose by 25 mcg and retest in 8 weeks to see results. Thank you again. I am much grateful.

Hidden
Hidden
in reply to Bari77

Best of luck! Doctors can be difficult to deal with, but I hope your endo will listen to you!

Gem5987
Gem5987
in reply to Bari77

Hi! I switched from 100 mcg. Levothyroxine to Armour thyroid (NDT) and I feel better on it. You might need a higher dosage. 1 grain which is what I am on, is equivalent to 74 - 100 mcg. of levothyroxine. The conversation chart is a bit conservative because some people are sensitive to T3. Not everyone does well on it. One grain contains 38 mcg of T4 and 9 mcg. Your test results show room for an increase. Since you are already on levo, perhaps try a small increase first and see if you feel better. Most people feel best with a TSH of 1 or slightly below. Hope this helps.

Bari77
Bari77
in reply to Gem5987

It helps a lot. Thank you. It is good to hear of somebody's experience with NDT. I know it may not work for everyone but until one tries, one doesn't know. I am glad it has helped you. Stay well.

Gem5987
Gem5987
in reply to Bari77

I also wanted to mention that I had been on every dose of levothyroxine as low as 25 mcg. and as high as 125 mcg. I never felt well, and went hyper on the higher doses. My doctor mentioned that some people feel better on a combination of T4/T3. Worth looking into if you continue feeling badly even with an increase. Stay safe and well!

I doubt in today's climate that you will find many endos who will prescribe T3.

They don't understand T3!

The endo I saw briefly was clueless....he was a diabetes specialist!

However at this stage you do not need need T3.

You are undermedicated ...based on both your results and your symptoms.

You need to raise your FT4 first by increasing your levo dose

Providing your conversion is good that should raise your FT3

FT4 is only 24% through the reference range

FT3 is even worse at 14.05%....

Both should be around 75% through their respective ref ranges

Medics frequently treat by TSH, this is nonsense as this paper points out

bmcendocrdisord.biomedcentr...

The numbers speak for themselves!

With these results you should have had levo increased some time ago, followed by another test after 6-8 weeks and further increases if necessary until your symptoms are relieved

I'm not a medic just another member like you who has had to read a lot and learn enough to improve my long-time (lifetime) wrongly diagnosed and wrongly medicated thyroid problem. The support and direction of TUK members have been life savers

Don't be put off by a rude, smirking endo, it probably hides the fact he is not confident in his work!

Point out your labs above to him and ask for a levo increase to be re-tested after 6 weeks with a further review.

I suggest you write down what you want to say....I always found that helpful it stopped me twittering my way through the consultation and forgetting half of what I had intended to say!

Good luck

DD

Bari77
Bari77
in reply to DippyDame

Thank you so much for your extensive message and words of support. It is much appreciated.

I will get prepared and will ask for increase of 25mcg and re-testing in 8 weeks on Thursday at the appointment.

I have read that T4 only doesn't relieve symptoms, hence my question about T3 and NDT. Also, do you have the source for the 75% of the reference range ? And how do you calculate it?

Thank you!

DippyDame
DippyDame
in reply to Bari77

"I have read that T4 only doesn't relieve symptoms, hence my question about T3 "

The great majority of hypothyroid patients do well on LT4 there is a misconception that T3 is the panacea of all ills. For people like me who do not respond to LT4 it is essential. But not something you need worry about now....or most likely never!

The 75% through range for the Frees is, as I said, approx , but a good figure to aim for I expect there is a scientific ref somewhere but I don't have one.

This is the calculator used to find % s through ref ranges

chorobytarczycy.eu/kalkulator

Add FT results the in first boxes and ranges in the other two

Bari77
Bari77
in reply to DippyDame

Thank you!

Please don't worry if your levo increases or decreases from time to time - as SeasideSusie says, the important thing is to be in the "right" dose for you at any particular time.

And if an increase in levo brings your free T4 and free T3 to the right place for you and makes you feel tip-top - well shout Hurrah from the rooftops! Getting T3 on the NHS is tricky; getting NDT or lio privately is expensive, with ongoing uncertainties over supply - so getting the right meds for you for free and easily via the NHS is a real result :)

Bari77
Bari77
in reply to fuchsia-pink

Thank you for your message and words of encouragement and support. I really appreciate it.

Just to reassure you. I've never taken anything except levothyroxine. I've found I stay well if I keep vitamin levels good, eat carefully, (I'm gluten free and lowish carb) , exercise sensibly and take levothyroxine, (well away from supplements etc). I always stay on the same type of levothyroxine that suits me and ensure I store it away from heat. It did take me a while to figure it all out.

Bari77
Bari77
in reply to Nanaedake

Thank you for your message. It is reassuring to know that one can be and feel well on Levothyroxine alone, together with dietary and lifestyle habits. You say you stay on levo that suits you. How did you find out? I always take what I am prescribed and have not really thought of what additives are in the pill and whether they can worsen my symptoms. Did you have to try few ?

Nanaedake
Nanaedake
in reply to Bari77

I had a lot of trouble with TEVA and some problems with MercuryPharma but I'm good on Actavis. And yes, it was trial and error but complicated by the fact there were problems with levothyroxine in the UK prior to 2013. However, people still find that switching brands can have an adverse effect and some brands don't suit them.

Bari77
Bari77
in reply to Nanaedake

Thanks, I need to look into this and start paying more attention to my reactions.

Nanaedake
Nanaedake
in reply to Bari77

Most important thing is don't let pharmacy switch your brand. Stick to one type. Lots of people on this forum have had trouble with TEVA. The problem is that it can take a while for symptoms or a reaction to meds to show. You may absorb levothyroxines differently due to the tablet fillers changing gut flora so it may be necessary to adjust dose even if the tablets don't have a direct affect. As it takes 6 to 8 weeks for levothyroxine to saturate all cells, identifying the problem could take time and if the pharmacy then switches brand again you're back to square one.

SlowDragon
SlowDragonAdministrator
in reply to Bari77

Many people find Levothyroxine brands are not interchangeable.

Once you find a brand that suits you, best to make sure to only get that one at each prescription.

Watch out for brand change when dose is increased or at repeat prescription.

Many patients do NOT get on well with Teva brand of Levothyroxine. Teva contains mannitol as a filler, which seems to be possible cause of problems. Teva is the only brand that makes 75mcg tablet. So if avoiding Teva for 75mcg dose ask for 25mcg to add to 50mcg or just extra 50mcg tablets to cut in half

Teva and Aristo are the only lactose free tablets

healthunlocked.com/thyroidu...

Teva poll

healthunlocked.com/thyroidu...

No other medication or supplements at same as Levothyroxine, leave at least 2 hour gap.

Some like iron, calcium, magnesium, HRT, omeprazole or vitamin D should be four hours away

(Time gap doesn't apply to Vitamin D mouth spray)

academic.oup.com/jcem/artic...

Physicians should: 1) alert patients that preparations may be switched at the pharmacy; 2) encourage patients to ask to remain on the same preparation at every pharmacy refill; and 3) make sure patients understand the need to have their TSH retested and the potential for dosing readjusted every time their LT4 preparation is switched (18).

SlowDragon
SlowDragonAdministrator

Even if we don’t start on full replacement dose, most people need to increase dose slowly upwards in 25mcg steps (retesting 6-8 weeks after each increase) until on full replacement dose

NICE guidelines on full replacement dose

nice.org.uk/guidance/ng145/...

1.3.6

Consider starting levothyroxine at a dosage of 1.6 micrograms per kilogram of body weight per day (rounded to the nearest 25 micrograms) for adults under 65 with primary hypothyroidism and no history of cardiovascular disease.

gp-update.co.uk/Latest-Upda...

Traditionally we have tended to start patients on a low dose of levothyroxine and titrate it up over a period of months.

RCT evidence suggests that for the majority of patients this is not necessary and may waste resources.

For patients aged >60y or with ischaemic heart disease, start levothyroxine at 25–50μg daily and titrate up every 3 to 6 weeks as tolerated.

For ALL other patients start at full replacement dose. For most this will equate to 1.6 μg/kg/day (approximately 100μg for a 60kg woman and 125μg for a 75kg man).

If you are starting treatment for subclinical hypothyroidism, this article advises starting at a dose close to the full treatment dose on the basis that it is difficult to assess symptom response unless a therapeutic dose has been trialled.

A small Dutch double-blind cross-over study (ArchIntMed 2010;170:1996) demonstrated that night time rather than morning dosing improved TSH suppression and free T4 measurements, but made no difference to subjective wellbeing. It is reasonable to take levothyroxine at night rather than in the morning, especially for individuals who do not eat late at night.

BMJ also clear on dose required

bmj.com/content/368/bmj.m41

bestpractice.bmj.com/topics...

Bari77
Bari77
in reply to SlowDragon

Thank you!

Hi

I have no advice sorry. But want to follow your thread.

Thanks

Sarah Vine who is married to the MP Michael Gove is prescribed NDT. I have asked my local MP about this and she put the question to Matt Hancock you can see the reply I got on my profile page if you scroll down. I find it so unfair that I had to buy NDT from Thailand when someone who is married to a powerful rich man can get NDT. I actually tweeted to Sarah twice about this and she ignored my question. I think it should be available to all thyroid patients but this is never going to happen because big Pharma is very powerful.

healthunlocked.com/thyroidu...

Hidden
Hidden
in reply to Lora7again

"natural desiccated thyroid (NDT), which has not been issued with a license from the Medicines and Healthcare products Regulatory Agency, nor has it been approved by the National Institute for Health and Care Excellence (NICE)."

This sounds like a poor excuse to me.

In Belgium, where NDT is legal and prescribed by some functional doctors (often referred to as Hertoghe doctors), you get a medical declaration along with the prescription and you send both to the pharmacy. The medical declaration states that NDT has not received a marketing authorisation in Belgium, but that you have been prescribed it as you cannot be adequately treated with the standard treatment (levothyroxine). That medical declaration is some sort of disclaimer, meaning you as a patient accept full responsibility for any problems arising from your use of NDT. Once you have that document in your possession, nobody needs to approve anything. It´s valid for one year, just like the prescription.

Bari77
Bari77
in reply to Hidden

I wish it was this simple here in the UK. Do any NHS Endos actually prescribe NDT? Or is it just private endos or functional doctors?

Hidden
Hidden
in reply to Bari77

Members in the UK will know the answer to that. However, I understand from reading posts here it´s very difficult to get NDT in the UK, and that the few docs who do prescribe it are in private practice. It´s time same in Belgium, BTW, doctors in the public healthcare sector will only prescribe levo and only test the TSH, so if you want something unconventional and a full thyroid/hormonal panel you have to see a doctor in private practice.

Bari77
Bari77
in reply to Lora7again

Thank you for sharing this. It is a real shame like you say and frustrating that only some people can get it prescribed. Is it because of the cost or political because the pharmaceutical companies enjoy the profits from synthetic meds? Obviously it helps people and I agree should be an option if needed. Do you take NDT and did it help you?

Lora7again
Lora7again
in reply to Bari77

Yes it did help me go into remission. NDT was used before the artificial Levothyroxine existed and patients did very well on it. Of course there wasn't any blood tests so people went by how they felt and that is what I did when I took it.

Bari77
Bari77
in reply to Lora7again

Thank you. It's good to know that NDT works for some people. I am glad that it helped you. Stay well.

I’m so glad you have found this group but I’m also cross that your GP isn’t helpful though we see this a lot. Treating a thyroid issue is possible but not helpful when your doctor isn’t supportive but follow what has been said and you should make good progress. Nothing works quickly in our thyroid world so it can take time so patience is often needed. As your dose improved then you will start to feel more positive but keep asking questions and many can help you make good progress. I was started off on NDT but my doctor left the surgery so I then went over to Levo but was well with that as well. I’ve only recently gone back to NDT as I feel overall I’ve been more stable on it. I think consistency is the key to success so get into a routine with medication and make sure you take it daily, easy to forget, but you need the same amount once settled on adose that suits you until bloods tell you otherwise but again ask if unsure. If I wasstarting out again I would keep a diary to jot down dose changes and amounts, how you are feeling physically and mentally as it helps to know how changes in dose affect you so basically get to know your body and it’s needs. Sounds a bit daunting at first but it’s not but good to have things written down so you can refer if need be at another time. Many doctors tend to keep levels low as they worry they might do harm but all you need to do is get bloods tested and then post for advice if needed. Always remember if posting to include the ranges as they differ from lab to lab so we would need to know the ranges that go with your results otherwise we should be guessing. It takes a full 6 weeks to get each new dose fully into your body so remember to retest 6-8 weeks later to see if bloods suggest an increase. Hopefully your doctor will be knowledgeable but many aren’t so that is also a possibility.

If you look on the Thyroid Uk site who run this forum there’s plenty of info with do’s and don’t’s and many other things of note so well worth a read.

Bari77
Bari77
in reply to silverfox7

Thank you for your support and encouragement. It is crazy to think that I have been on the Levo for nearly 20 years and never actually really paid attention to all these things like different meds, blood work - I just took my prescribed pills and went along. I am also glad you mention that you had tried different forms. I have in my head that NDT may be worth a try but firstly, I am a bit chicken to try it on my own and also, it is expensive. How easy was it for you to swap synthetic and NDT? I think I will go with increase of 25mcg and re-test in 8 weeks and see. Thank you for suggesting to keep a diary, which I shall. It feels a bit overwhelming.

silverfox7
silverfox7
in reply to Bari77

The NHS started me on NDT, must be around early 80’s. My GP also started himself on it a few weeks earlier. I did come off it when my GP left the practice but thankfully I wasfine on Levo aswell which rather points to the skill and help from my GP more than anything else. I went back on NDT about 5 years ago now and been good since but I don’t have a huge dose so if I was needing more I suppose it’s more lightly that I wasn’t taking enough or worse. Taking two much. Changing over then you need to acknowledge you start low as if previously on Levo you will already have a stock in your body as it’s a storage hormone and then I gradually increased when My body was telling me my levels were too low, I followed this up with a blood test when things had settled down again. But yes, NDT was used to treat thyroid patients from 1892! Before that they would have eventually died. But always remember if you change to increase very slowly-it’s a lot easier to do that then over dose and then not be sure whether you need to take more or less!

Bari77
Bari77
in reply to silverfox7

Thank you for this! I have just changed brands, so will see what effect if any it will have, than have blood test in few months and see if I need to increase Levo, try T3 or change to NDT. It is a slow process!

Hello Bari

Your thyroid hormone replacement is just that - a hormone replacement, not a drug that you might become addicted to , but a " simple " hormone and if your thyroid is not producing enough hormone for you to be well and happy on, the answer is to first try the easiest method of all the treatment options, which is to take the hormone in pill form - T4 , marketed as Levothyroxine.

Your T4 measure is well in range, and you have plenty of room to increase the Levothyroxine, and as you slowly increase this hormone you should see those symptoms reduce and your hormones become more balanced within the ranges.

Most of us need our T4 to be in the top quadrant of the range so you may be looking at a couple of increases over the next few months to fully recover your wellness.

If when your T4 is at the top or slightly over the top of the range, if you still do not feel any better this is when you might consider looking for alternatives, but its not necessary yet., and very many people are well on Levothyroxine, once they find the right dose for them.

It's also important to maintain your vitamins and minerals at optimal levels as these support your core strength and assist your body in converting the T4 into T3 which is the hormone that the body runs on, and it's low T3 that gives you those debilitating symptoms.

As your T4 increases, so will your T3 and your TSH will come down - and that's just how it works - and it's important that you are dosed and monitored on TSH, T3 and T4 blood tests.

You will be on thyroid hormone replacement for the rest of your life, as the thyroid doesn't get better, and if anything reduces its natural production over time, and that's why we get picked up in primary care for a yearly MOT and have a thyroid function blood test.

Bari77
Bari77
in reply to pennyannie

Thank you for your message. It explains things very clearly and makes sense. I will try an increase and see what the effect will be. The problem with primary MOT is that thyroid blood test mostly consists of TSH only (I have never had FT3 tested on NHS) and the private labs cost extra.

pennyannie
pennyannie
in reply to Bari77

Yes I know, I like very many of here have to pay for both T3 and T4 blood tests but if you want optimal health, it's imperative that you do right by yourself, if you feel your surgery falls short :

It does seem the MOT is now just a TSH blood test : though this test was originally intended as a diagnostic tool to identify and diagnose hypothyroidism, and it was never intended to be used in isolation when a patient was on any form of thyroid hormone replacement.

When I paid my hospital independently for testing T3 and T4 through my surgery I was charged just over £34 and then read on here that the cost is around £1 per analysis.

Bari77
Bari77
in reply to pennyannie

I will check with the endocrinologist if I am able to pay for the extras through NHS test - I didn't know you were able to. I guess that is why companies like Thriva and Medichecks are doing well as their blood test are not too expensive. But I wonder also if finger pinprick is as reliable as blood draw. I did my Thriva test on Monday this week and last week I had my GP blood test that endo ordered (TSH, FT4 only) but it will be interesting to see tomorrow when I get results if there is marked difference.

pennyannie
pennyannie
in reply to Bari77

Finger prick is used by very many on here -

I refused to leave my doctor's room when I was told my TSH was fine and I was good to go : too long a story to into on here :

Bari77
Bari77
in reply to pennyannie

Shame my appointment is telephone call tomorrow. I will probably get the phone put down on me lol

pennyannie
pennyannie
in reply to Bari77

Just be polite, and smiley if that's possible on the telephone, just explain how you now feel and what has caused you to think you need an increase in your medication.

Please stop thinking that you can somehow hold your dose of meds low and get better another way. You can't. You will just stay sick and longer term that will do untold damage to your body.

Push for all the dose increases you can get until you feel well. You are nowhere near done with Levothyroxine yet. Nothing like needing to switch to NDT or T3 etc. Your free T numbers are horribly low.

Personally I have issues. I can't convert T4 into T3 very well and as a result I can't just keep increasing my Levo to get right, it makes me feel worse after about 66% through the range, but even with FT4 being 64% through the range last time my FT3 was less than 10% through it's own range. Terrible. I do need to look elsewhere and it's a nightmare. I long to just be able to take the Levo and feel better, but I can't. You will be able to do so. Your numbers are OK, just way too low.

Stop thinking that you can somehow cheat your way around this with diet and exercise and other stuff. You need that hormone. T4 is a hormone. Not a med. Your body needs it.

Bari77
Bari77
in reply to FancyPants54

Thank you for your message and advice. It makes perfect sense what you are saying and I know you are talking from a wealth of experience. Hopefully the increase will be my answer. Please don't laugh but when you read stories of people who were able to stop thyroid meds, you hope it may be you too. I do realise that this is probably just a dream and I need to stick with reality and treat my thyroid the way it needs.

FancyPants54
FancyPants54
in reply to Bari77

Yes it is a dream and it doesn't happen to many and will have a specific cause. It's either a remission of hashimoto's disease or a temporary illness that affected the thyroid.

Almost all of us are suffering from a thyroid gland that isn't functioning well and it will only get worse over time.

Bari77
Bari77
in reply to FancyPants54

I understand, yet still think that everyone has their own journey. We all have the ultimate goal of being well and happy but the path to get to that goal is different for each of us and we need to try to do the best we can.

DippyDame
DippyDame
in reply to Bari77

Sorry I hit like instead of reply!

You have been given the "how" and "why" of replacing thyroid hormones.

You cannot safely avoid the facts!

I was wrongly/undermedicated by medics for decades and now, despite taking the right amount of the replacement hormone I need to stay alive I'm finding it very difficult to "repair" the damage done by decades without it

If you think you can do this without the correct dose of levo then I'm afraid your grasp on reality needs to be tightened

Blunt, yes....but for your own good Without the expertise and guidance of members I would not be writing this now,

The choice is of course yours!

Bari77
Bari77
in reply to DippyDame

I am grateful and appreciate your advise and sharing your experience. I am sorry it hasn't been a good one and I hope you will be able to help yourself with the correct dose and medication. I wanted to hear other people's opinion and experiences and hence I posted my question so I can try to make an informed decision. Thank you again.

I moved from Levi to NDT and I’ve never felt better. Synthetic hormones have never helped me... to stop falling pregnant to increase fertility and since menopause to help my thyroid function! Always did the exact opposite 😢

Bari77
Bari77
in reply to Hypohappy

Oh, that is so good to hear it has helped you. I just wonder whether it would help me but until I try I will not know. Do you have it prescribed or buy your own?

SlowDragon
SlowDragonAdministrator

Were thyroid antibodies tested?

Please add results

Bari77
Bari77
in reply to SlowDragon

Yes: Antibodies results:

Ati TPO - <9 (<37.5)

Anti Thyroglobulin 11 (<115)

All looks fine I think.

SlowDragon
SlowDragonAdministrator
in reply to Bari77

Ever had these tested before?

Ever been high in past?

Ever had ultrasound scan of thyroid?

20% of Hashimoto's patients never have raised antibodies

healthunlocked.com/thyroidu...

Paul Robson on atrophied thyroid - especially if no TPO antibodies

paulrobinsonthyroid.com/cou...

Bari77
Bari77
in reply to SlowDragon

I had ultrasound done a year ago and it was fine. I had antibodies tested years back with negative result. But this is definitely interesting to know that 20% of patients don't have raised antibodies.

In these uncertain times I would keep it simple and just increase meds. It’s not the right time to try something new when you don’t know how you are going to react or at be not see you doctor face to face. Neither are we in the position to move around easily to source new meds.

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