New member with lots of questions about levo an... - Thyroid UK

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New member with lots of questions about levo and NDT

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Hi everyone,

I just joined. My name is Anna and I am from Denmark.

I was diagnosed with Hashimoto´s disease in December 2002, based on a high TSH, low FT4, and high anti-TPO and anti-TG levels. I was told it was very easy to manage, and that all I needed to do was to take levothyroxine until my TSH was normal.

Twenty years later, I am still struggling. Even on high doses of levothyroxine, with high FT4 and a low TSH, my FT3 remained low. I have worked on my own on optimising vitamin and mineral levels as privately ordered labs in 2015 showed several deficiencies (no doctor ever mentioned this to me). This has led to some improvement, but I remained symptomatic.

Last summer, I went to a private clinic where they prescribe NDT (Erfa) and other hormones. Taking NDT has not led to the huge improvement I expected, and I am currently at my wits´end. While some symptoms have improved on Erfa compared to levo, others have emerged. It´s like I am hypo and hyper at different times during the day. I have tried taking NDT in one dose, two doses and three doses, and honestly it does not seem to make much of a difference.

Even good, open-minded doctors sometimes seem clueless about thyroid disease, so I was hoping members here could shed some light on this.

Just some background information:

On 200 mcg of levothyroxine (June 2021):

TSH 1.3 (0.2-4.2)

FT4 16.9 (9.3-17.0)

FT3 2.1 (2.0-4.4)

anti-TPO 216 (<8)

anti-TG 98 (<4)

My doctor at the time considered me "slightly hyperthyroid" because my TSH was close to 1 and my free T4 at the top of range. So he wanted me to decrease levo to 150 mcg. But I still had all the hypo symptoms: feeling cold, brittle nails, dry, itchy skin, weight gain, puffy face, bags under my eyes, fluid retention, hair loss...I could go on for ever.

Based on those labs, the clinic I went to diagnosed me with hypothyroidism as my FT3 levels were at the bottom of range. I was put on 30 mg of Erfa and worked my way up to 3 grains by raising it by 15 mg (half a pill) every six weeks. Although I immediately felt more energetic once on Erfa, I would feel overstimulated in the morning, and then better in the afternoon. Splitting Erfa does not seem to make a difference to how I react to it.

Latest lab results (from last week); on that day, I split Erfa in two doses and took 1.5 grains at 8 am at 1.5 at 8 pm, then had blood drawn at 8 am the next morning:

TSH 0.01 (suppressed)

FT4 8.4 (9.3-17.0)

FT3 3.5 (2.0-4.4)

My new doctor (which I skyped with recently) wants me to add another 30 mg of Erfa. I, however, wonder if adding a little levo would be a better idea since my FT4 is below range?

vit D 86 ug/L (30-60; it came back 50 six months ago and my doctor recommended I increase it from 5.000IU daily to 10.000IU daily...not sure if I should go back to 5.000IU?)

vit B12 689 ng/L (197-771)

ferritin 172 ug/L (15-150) this worries me as I don´t take iron and have no idea what could be causing this

HDL 0.40 g/L (>0.45) this is also worrying

total cholesterol 3.91 mmol/L (<5.18)

Triglycerides 1.09 g/L (<1.50)

No anti-TPO or anti-TG tested as my new doctor does not find them useful once diagnosed with Hashimoto´s.

I am still waiting for vit A and E, zinc, and selenium results.

Sometimes, I feel so overwhelmed on Erfa that I stop it for a few days, and I always feel better within 24 hours. This would not affect FT4 levels I think but only FT3 levels. Which could mean I am on too much T3 or don´t need it at all. On the other hand, the thyroid specialist I saw last year said that most people with Hashimoto´s end up with a destroyed thyroid glands and need T3 in addition to T4. But I know many people without a thyroid gland take levo only and feel fine.

Sometimes, I wonder if trying to improve T4 to T3 conversion would be better than taking T3?

Has anyone experienced the same thing after switching to NDT? If so, did you find a solution?

Many thanks in advance!

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30 Replies

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adin3 years ago

Hi Anna, I had the same problem too, ndt is good for me but only if I add levo.

I did experiments and reached the dose of 1,5 Erfa and 62,5 of levo.Initially I was on 2.5 Erfa and 25 Levo but I was always anxious, dizzy, with high blood pressure & pulse, I didn't recall/remember things, etc . You have to find your optimal dose.

• in reply toadin3 years ago

Thank you, Adin!

Yes, that is turning out more difficult than I realised...doctors tend to either work with levo only or NDT only, and rarely do they seem to consider combining meds.

adin• in reply to3 years ago

It seems that for me it doesn't suit the ratio of ndt (4:1 T4/T3), I need more T4 and less T3. I one I have no problem mixing them. I make my doses according to how I feel and not depending on what the doctors say.

You didn't try Levo and T3(synthetic)?

jrbarnes3 years ago

Your story is very much like my story. I always had high T4 levels, TSH around 1.3- 2.0, and a FT3 at the bottom. I tried NDT but did not feel better. NDT will keep your FT4 levels too low. If you increase the NDT then you will have a lot of T3. The ratio of T4 to T3 in NDT does not work for eveyone. It did not work for me. I did not need that much T3. I needed more Levothyroxine. I weigh 59 kg and currently take 112mcg of Levothyroxine and 10mcg of Liothyronine. This puts my FT4 levels around 60% to 70% on the lab reference range and my FT3 is probably more than 50% on the lab reference range. It is still too low but I am increasing my Levothyroxine slowly. It has made me feel more normal and stronger. I now sleep better.

First I would suggest that you take an amount of Levothyroxine that is enough for your body weight which is 1.6 mcg per kg of body weight. Levothyroxine is not 100% absorbed so you may have to take a higher amount to compensate. Then you can start to add 5mcg of Liothyronine and if needed another 5mcg. If you cannot get Liothyronine then you can start with 1 grain or 1.5 grain of NDT and add Levothyroxine to it until you feel more normal. Not everyone will need such a high amount of T3. My doctor says she has many people who take NDT with their Levothyroxine and do well.

It is true many people with surgery of the thyroid or destroyed thyroid glands do need to add T3. I cannot do well without adding T3 to my Levothyroxine.

Eating enough foods and carbohydrates and taking iron and B12 supplements (due to an iron deficiency caused by the hypothyroidism) has helped to convert more T4 to T3. I would suggest that you do not leave several hours between eating meals(fasting) as this will lower levels of T3. My appetite was severely low from the hypothyroidism and I would wait several hours between eating and only eating around 850-1000 calories per day. These are the ways that I improved my conversion of thyroid hormone but still I must add T3.

It sounds like you should start over again but with a lower amount of T3 and then add onto that with Levothyroxine. Take care

• in reply tojrbarnes3 years ago

Thank you a lot! Yes, it´s true that low FT4 levels are problematic for me. Some say T4 does not matter when you take T3, but I do notice a big difference when my FT4 levels are at the bottom of range compared to when they are above midrange - even on NDT. So I realise now I will have to find a combination of T3 and T4 that works for me.

pennyannie3 years ago

Hello Mirabelle and welcome to the forum :

Once diagnosed Hashimoto's auto immune thyroid disease there is no need to run the antibodies again.

With Hashimoto's irrespective of which ever thyroid hormone replacement you take you are liable to ' swings ' in symptoms, from hyper through to hypothyroidism.

Your thyroid gland is liable to attacks from your immune system causing erratic own thyroid hormone production until such time as the gland become totally disabled.

You then likely will need full spectrum thyroid hormone replacement in the form of a T3/T4 mix or Natural Desiccated Thyroid though read some Hashimoto's sufferers do better on synthetics rather than a glandular which seems to trigger their immune system response.

The blood test is just a snapshot in time and likely not a true reflection of how you feel and it must be very difficult finding any dose of any thyroid hormone replacement that sits well with you when your own gland is becoming disabled and with no consistency of output.

I read some people sensing a ' swing in their symptoms ' reduce down or even stop their medication for a few days to try and offset the severity of the symptoms experienced only to find when the AI attack is over that they need to increase their medication as the gland has become further disabled.

With Natural Desiccated Thyroid you dose to the relief of symptoms and not a blood test that was introduced to be used with Big Pharma's T3 and T4 thyroid hormone replacement options.

On NDT we tend to track on the T3 reading and your results above show your T3 at around 65% through the range - and your TSH will be low suppressed and your T4 lower than when on T4 monotherapy BUT with your T3 proportionately higher than when on T4 monotherapy.

I had RAI thyroid ablation for Graves back in 2005 ( a treatment I deeply regret ) and have been able to restore my health better with NDT :

A lot of the symptoms you describe are typical of Hashimoto's AI disease and read that many patients need to first consider ' healing their gut ' and testing for celiac disease.

Then look to food intolerances such as gluten, dairy, wheat and many recommend reading around this auto immune disease from Dr Izabella Wentz's research and findings

thyroidpharmacist.com

P.S. Do you have an inflammation result and range - as a high ferritin can be because of inflammation which is very common with AI disease and shows the body is under stress.

• in reply topennyannie3 years ago

The tests I think are related to inflammatory markers are:

CRP <3 mg/L (ref <3)

CEA 1.8 ug/L (<5)

However, I did have my fourth Covid19 booster jab a week before the blood draw; not sure this can affect ferritin levels...?

pennyannie• in reply to3 years ago

Yes, CRP is inflammation so presume with that range - it's just tipping over the range ?

I think the CEA is cancer related so under range :

I don't know about the Covid boosters but would imagine they would have some bearing :

• in reply topennyannie3 years ago

The problem with test results that only say they should be above or below a certain level is that you don´t know if they are borderline high or low...so not sure.

terebol• in reply topennyannie3 years ago

I follow Dr. Wentz and between her research & a plethora of other studies hailing selenium successful in lowering TPO/TPg antibodies, I decided to use myself as a study subject. Hashimotos for ~25yrs. 2 mos. ago, I tested to get my baseline & have been taking 200mg selenium daily. Looking to retest before the end of the year to see if they stabilized, went down/up. Many of the studies had the success in selenium therapy in patients who had subclinical hypothyroidsm. Anyone experimented w/long-term selenium supplementation?

pennyannie• in reply toterebol3 years ago

Hey there -

I can't help you with this - might be better to start a new question yourself asking exactly what you have written here and open a conversation out to all forum members rather than the few who maybe here reading down this one post.

PixieElv3 years ago

Hi Anna

I feel very similar to you. I am on NDT and felt initially much better but then some of my symptoms returned, just like you. I still feel better though than I did on Levo alone. I did not get on with T3 alone.

I tried splitting the dose twice or three times a day, but after initially feeling better, my symptoms always returned.

My T4 was midrange, with my T3 higher in the range

I tried adding 25mcg of Levo, but ended up with a massive constant headache and fatigue. So I’ve stopped it again before I could take bloods.

I am now not sure what to do? Sorry, that doesn’t help you, other than to know that you are not alone.

Best wishes

3 years ago

Thank you to everyone who replied! I really appreciate your input and suggestions.

It would seem this disease is much more complicated than most doctors realise. Every time I think I have it figured out, something else happens. I guess that as Hashimoto´s will destroy the thyroid gland over many years, it´s difficult to maintain optimal hormone levels as your own hormone production is not constant. The doctor who put me on NDT said it´s easier to optimise patients who have had RAI or a total thyroidectomy because their own thyroid glands don´t interfere with treatment. I wouldn´t know as I have not been in that situation. But my own experience is that most doctors don´t take Hashimoto´s seriously; the doctor who diagnosed me 20 years ago said that Hashimoto´s is not really considered a disease so those patients are not referred to an endocrinologist; only Graves´and cancer patients are. Today, I know that most endos only look at the TSH and prescribe levo, but the doctor´s comment is quite telling...Hashimoto´s is not considered serious enough to send you to a specialist. Meaning: any GP can manage it. It feels like all symptoms that you have to deal with are dismissed as not thyroid-related. Over the years, I have seen doctors who had no idea that there is a connection between thyroid, cholesterol and high blood pressure...they think that your BP is high because your cholesterol is high meaning you eat too much fat and don´t exercise enough, and that is the reason you´ve gained weight...it´s really a vicious circle. I am so grateful there are forums such as this one where you can meet patients who experience the same thing and know it´s not all in your head.

pennyannie• in reply to3 years ago

Yes, start reading up as it seems we all need to become our own best advocates.

Whether with or without a thyroid the lack of knowledge and understanding within the medical profession is astounding considering it's considered a common health issue ??

Your Thyroid and How To Keep I Healthy is a very easy read book, ( I'm dyslexic ) written by a doctor Barry Durrant-Peatfield - especially for patients to equip and enable themselves better in getting better thyroid health.

You might like to dip into Thyroid UK the charity who support this forum where you will find a Library section detailing books that you might like to read as well as a website covering all aspects of everything thyroid - thyroiduk.org

• in reply topennyannie3 years ago

Thanks a lot for the suggestion, great idea! I have read some articles by Dr. Peatfield and he seems like a great doctor...the kind that hardly exists anymore. I think he was even around when doctors had to go by symptoms and symptom-relief rather than relying on lab results...?

pennyannie• in reply to3 years ago

Yes, I believe he also suffered with hypothyroidism and eventually felt forced to resign as a doctor as he wasn't prepared to change his beliefs and follow blindly guidelines that were, and still not, fit for purpose.

shaws• in reply topennyannie2 years ago

Dr Peatfield withdrew his Licence as he was being pursued for not following the 'guidelines' and was threatened - so rather than lose his Licence and so that he could still treat/advise patients how 'to restore their health and relieve all symptoms' he resigned his Licence.

I was one who was fortunate to consult with him and he was picture/perfect of a doctor who listened to patient, reassured patient and restore patient's health.

• in reply topennyannie3 years ago

I read this book a few years ago by Dr. Kenneth Blanchard, a former endocrionologist in the US who treated patients with mostly levo and small doses of slow-release T3. He recommended low doses of T3 (ca 5 mcg daily in split doses of 1.5 mcg to mimic normal thyroid secretion). Dr. B claims that NDT contains far too much T3 for humans. He says that when people who have taken levo only for years start taking NDT they feel fabulous at first because they were T3 deficient, but after a while they become symptomatic again due to T3/T4 imbalance at cellular level. This imbalance is caused by the T3/T4 ratio in pigs which is not the same as in humans. I know pigs´thyroid glands produce more T3 than human glands, but I wonder if the hormone ratio on cellular level is the same in humans as the thyroid output (ca 98% 2% T3)? I have been wondering if the hormone ratio on cellular level is not closer to the 80%-20% ratio found in pigs´thyroids, which could explain why many people feel great on NDT even after several years? Dr. Blanchard makes it sound as if everyone will crash on NDT sooner or later. Also, his theories do not explain why some people feel best on T3 only. I assume that, if you use his method, you need optimal conversion or you will end up T3 deficient anyway? Since there is no way of measuring hormone content at cellular level, and thyroid hormones seem to exert their metabolic activity on cellular level and not in blood, I am not sure why blood tests matter so much? After all, a person can have high FT4 levels which cause the TSH to drop, but if not enough T4 is converted to T3 on cellular level the person will remain hypo anyway?

One theory that Dr. B has (that has been taken over by UK doctor Sarah Myhill) is that thyroid hormone should be taken after breakfast and dinner. He claims that when it comes into contact with the stomach lining (which happens when you take it on an empty stomach), it increases blood sugar production which in turn leads to insulin and leptin resistance. Many Hashimoto´s patients have those conditions, but I always thought they were caused by living with thyroid hormone deficiency for years and then being inadequately treated with T4 only drugs. Dr. Myhill also recommends taking thyroid hormone with food on her website. I have considered giving it a try, but hesitate as it goes against everything I´ve been told for the past 20 years.

pennyannie• in reply to3 years ago

Well I guess if what you try doesn't work well you try something else :

I found NDT almost 5 years ago now and have been on the same dose all this time and I take this at 3.00am in the morning so I should think on an empty stomach even allowing for a much slower digestive system as primary hypothyroid and wake up at around 6.00 am feeling relaxed, calm and most days symptom free.

I have no desire to try anything else, as compared to how I had been left by mainstream medical I am much improved.

I can't change the fact I ingested Radio Active Iodine thyroid ablation back in 2005 for Graves Disease which I deeply regret - but all things being equal - I think this is as good as it's likely to get for me.

I am 75 - so in unchartered territory is some ways as I don't know what 75 is meant to be like but I have my independence back, mow my own lawns and apart from feeling better with a short PM nap - I can last out til 10.pm when I literally ' konk out ' !!

• in reply topennyannie3 years ago

Wow, it sounds like you´ve made impressive progress so far😊. It´s very inspiring to read.

Do you wake up at 3 am by yourself, or do you set your alarm? I know some doctors say thyroid hormone should be taken at bedtime or in the middle of the night as that is when the body naturally releases most of the thyroid hormone so that the adrenal glands can start producing cortisol in the early morning hours.

pennyannie• in reply to3 years ago

I think at the beginning I was waking myself up naturally, definitely didn't use an alarm - and now it seems I need to use the bathroom anyway.

I do take adrenal glandular first in the morning at around 6/6.30 as I believe they too are damaged as a consequence of having had RAI thyroid ablation and felt a difference after a couple of months of supplementing as my achey achey lower back that felt very bruised seemed less sore.

• in reply topennyannie3 years ago

Interesting that you notice an improvement with adrenal glandulars!

Noelnoel• in reply to2 years ago

Hi Hidden

One theory that Dr. B has (that has been taken over by UK doctor Sarah Myhill) is that thyroid hormone should be taken after breakfast and dinner

Interesting . Is there a book or a link on Sarah Myhill’s explanation

helvella• in reply toNoelnoel2 years ago

Possibly not worth responding to someone who has left the forum!

The original poster won't see your reply.

As it is about 5 months old and probably most of the replies are from the original poster (quite reasonably) who has left, I'll close it to further replies.

Probably a better idea to make a new post if you wish to discuss the issue?

Litatamon3 years ago

Just wanted to thank you for your post Anna. It has been helpful for me.

Besides that I wish you all the best.

BlueKeith3 years ago

I am only on 75mcg of levothyroxine and had asked for more to relieve the typical symptoms but the doctor refused. I have tried to maximize the effects of the levothyroxine like taking it very early in the morning hours before and after food. I religiously eat a few brazil nuts every day. Try to eat liver once a week. Get plenty of sunshine in summer and vit d November to march. I am fingers crossed feeling good at the moment (apart from some issues with the teva brand of levothyroxine) . Hope you find your way of dealing with it . Sounds like you are quite knowledgeable about your condition more so than me .

• in reply toBlueKeith3 years ago

Thank you! Yes, I have read a lot about this disease, visited many forums and looked into various alternative treatment methods. I realised early on that doctors know so little about this disease that patients need to take control of their treatment. A few patients seem to feel fine on doses of levo that keep their TSH in range, but many don´t and doctors seem unable to help them. One problem is that even so called knowledgeable doctors contradict each other - one says take iodine, another says don´t take it, one says NDT is the best treatment, another that it contains too much T3 for humans, one says the TSH is not important once on treatment, someone else says it should always remain in range because it´s needed for T4 to T3 conversion...so not easy to know what to believe. I have given up on many so called thyroid experts over the years.

Many patient forums are not very helpful either. Some get angry with people who do fine on levo only as they claim everyone needs T3, whereas others call doctors who prescribe T3/NDT dangerous charlatans. Some recommend treating adrenal fatigue and some claim it´s a myth. Sometimes, I find it difficult to stay sane trying to navigate between so many contradictory opinions...!

helvella• in reply to3 years ago

The complexity is such that even the brightest and most able cannot predict the outcome of a particular approach in a single individual.

The finest doctor could have a patient who they treated successfully. But their next patient, despite appearing to have an almost identical collection of symptoms, medical background, etc., ends up doing very poorly when treated similarly.

• in reply tohelvella3 years ago

True! Many thyroid patient advocates and doctors seem to think that what works for one person works for everyone.

BlueKeith3 years ago

I agree completely. I just take all advice with a pinch of salt.