Tips for tolerating thyroid medication - Thyroid UK

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Tips for tolerating thyroid medication

Relentlesssearch profile image

Please can everyone share with me all and any of the things that made you able to tolerate thyroid hormones (that's T4, T3, T4+T3, NDT, any combination of those).

I have tried every form & combination of thyroid hormone going, but I get suicidal levels of anxiety whenever I take anything. I am stuck hypothyroid (no period, dry skin, overweight, depressed etc.) and am not able to take any medication without suidical levels of anxiety.

I would specifically love to hear from anyone who was in my position, and what they did to finally be able to tolerate the medication. Any suggestions welcome, and thank you so much for your input.

(For background - Cortisol shows as normal, I take a bespoke supplement that covers all my deficiencies, I am negative across the board with Lyme & Mold)

69 Replies
SeasideSusie profile image
SeasideSusieAdministrator

That sounds really difficult for you.

Are you in the UK? What has your doctor or endo done to try and help?

I am in the UK. I am speaking to my functional endo this evening, but she has already told me in the past that beyond putting me on NDT (as I am now on) she doesn't know what she can do.

SeasideSusie profile image
SeasideSusieAdministrator in reply to Relentlesssearch

What about your GP or NHS endo? I know most aren't a lot of help but there is the odd gem out there.

No, GP is completely useless. Can't even get an appointment, let alone anything beyond Levothyroxine.

Just checking where you're at with diet? Have you tried dairy and gluten free? Some need to remove soy too and eat a whole food diet, nothing processed.

I've done everything from Paleo to AIP, Keto to carnivore. At the moment I follow a the Ray Peat diet. It is definitely the medication that is making me so feel so intolerable, what I eat seems to be irrelevant, it just lowers my inflammation a bit.

So long as particularly gluten isn;t an issue, I'd recommend a lactose free formula of the tablets or the liquid version which doesn't contain lactose.

I can really empathise with you trying all these different diets - I spent some time devoted to ray peat too and look back and realise for me there are some great ideas (no pufa) but also some ideas that are for me simply don’t work at all (fish is essential for

Me - but excluded by peat)- I have got there in the end using an exclusion approach but crikey it has taken ages

Yeah, I actually don't take the PUFA thing to heart if it's a natural food. I'm not pounding a tonne of nuts every day, but I do eat wild salmon about 3 times a week, and I'll also eat oily fish without any hesitation.

The diet thing was a massive distraction for me. I was convinced if I just got the diet right, I'd be cured. and I definitely got orthorexia, I was dangerously underweight when I did carnivore with no period and lightheadedness all the time, but I was being completely bombarded by my algorithm, I just thought I needed to restrict harder! I paid Paul Saladino $900 who told me to just eat meat and drink water. He himself then developed hypothyroid symptoms! So much corruption.

So now I don't hold anything too tightly when it comes to diet, for me it was probably never even about diet but I so so so badly wanted to get better and be a success story for my family and myself after 17 years of very bad health, I got stuck in this mindset that diet will fix me if only I find the right one. Only once I developed a fecal impaction on carnivore did I finally realise "Ok, enough is enough. I need to try something else" and I looked at historic blood work and it was staring me in the face this whole time - rock bottom T3 levels, never even considered by any practitioner (alternative or allopathic) I'd ever been to.

Now I am having problems tolerating the thyroid medications (no matter the form) but at least now I realise how wrong I've been going... And at least now I can eat a piece of fruit without worrying that it's going to kill me!

I am really interested in your comments about diet. I do think basically fish plus vegetables and fruit is pretty much the answer though as the dairy, grains , coffee and alcohol simply are not possible if I can be disciplined enough!

The one thing I got for doing the hay diet decades ago was to only have a liquid or fruit breakfast (ie fruit /veg smoothie) and I have kept to this now without exception I think to huge benefit - ie celery/spinach/strawberries/blueberries and a couple of bananas with oat milk - it has become a treat to be enjoyed

The worst thing with peat diet is his obsession over drinking a ton of milk which does not equate to someone who has dairy allergies. I realise late in the day that dairy rather than anything else if the danger for thyroid and conversion. Fish will provide the iodine if you don’t drink milk so this is pretty much essential and peat’s beef preference simply not equivalent imvho

Yeah, I am very wary about anything too extreme, so I don't take the Ray Peat tenets too seriously - I don't take loads of Vitamin e or progesterone, but I do think he's bang on about thyroid metabolism being at the heart of disease, but of course, it is the engine!

I used to avoid milk and all dairy like the plague (and ate tonnes of extremely expensive, gum-laiden Coconut yogurt) but I actually reintroduced it and none of my inflammatory markers have changed. It is a "complete" snack, in that it has fat, protein & sugars in it, so I personally find it very good for blood sugar control & used in conjunction with a bit of additional protein for a snack. I really enjoy a warmed mug of milk with some raw honey after my morning river swim to get my metabolism heating up again, and I genuinely believe it is nourishing me, I have no symptoms or signs of any reaction, but I know some do and a year ago dairy gave me dreadful eczema, but no more. Dairy has certainly never affected my T4 conversion - in fact the only thing that has ever impacted my conversion (outside of hashi's antibodies etc.) is restriction.

I think Peat argues that people's reactions to dairy is a symptom that the gut isn't functioning well, not a cause of its dysfunction. Of course, sourcing is the most important thing when it comes to any food, and I always have my milk & yogurt raw from my local farmer who I trust. Maybe if I drank processed milk I'd notice bad effects. I do think the B12 is useful in beef, but I eat fish, shellfish & beef just to cover all the bases!

Your morning smoothie sounds delicious! In TCM that is a really nice cooling way to begin the day, I used to eat a lot of porridge in the mornings but I'd have terrible blood sugar crashes not long after. If I had your smoothie I'd need to work out a way of having protein with it because my blood sugar crashes have always been such a problem for me. I actually studied the Hay diet on my course, which of course preaches the total opposite of what I'm doing, by pairing protein & carbs!

Luckily for me I've never been able to handle coffee - even dark chocolate can make me feel terrible from the caffeine, so I don't struggle avoiding that but I do enjoy a cup of black tea with milk a few times a day. I have come to believe that the joy I get out of my foods is as equal importance as the foods themselves. (when I say food I mean ACTUAL food, not junk that isn't really food) and so I take it quite seriously when equating what to eat is whether my soul (so to speak) will be nourished by it as well as my body. I think it is good for adrenal & HPA axis in general to eat things that bring joy!

Hey there :

Have you tried liquid T4 ?

I haven't, no, but I'm not sure how that will help me tolerate the medication better - how would it be able to make me not react if it was liquid? :)

Well I read it's better absorb - but surely it's worth a try :

I don’t think absorption is my issue as my blood work demonstrates that I am up taking the medication, but thank you for the suggestion.

Liquid T4 doesn't have the fillers that the pills have. It could be the fillers that you're reacting to.

I’ll give it a go. Where can I get that from?

Your doctor would have to prescribe it. I don't know anywhere you can buy it without a prescription. And, as it's very expensive, they are very reluctant to prescribe it. But, if you never ask, you'll never get. :)

I started levo on 12.5mcg (split a 25mcg table - not Northstar 25mcg as these contain mannitol as a filler).Then when ok with that added in a second 12.5mcg levo as a second dose.

Eventually worked my way up to 100mcg total daily levo taken in 3 doses.

Did you ever have any issues tolerating your medication?

Yes thats why I started slowly and split it into several doses as I worked my way up.Then when I got to 100mcg and had been on it for a while I started blaming the levo again for symptoms so reduced to 25mcg daily again which made me very hypo.

Now I am on 100mcg levo and 7.5 mcg lio taken in 2 doses the symptoms have gone.

That gives me hope. I have been raising by a 1/4 of a grain (9.5mcg T4 + 2.25mch T3) every 2 weeks. I'm not sure if I can go much slower :/ but I am heartened to hear that intolerance symptoms can sometimes subside as in your case.

The strange thing is that all my other hypothyroid issues are improving - I am losing weight, skin softening, hair not falling out etc. But the anxiety and agitation is through the roof! It's very odd.

Anxiety and panic attacks were my daily life. They've gone now I am properly medicated.Your body is designed to keep going. When it lacks enough thyroid hormones to function it produces adrenaline to keep you going. This meant for me that even the fun family events were filled with adrenaline fuelled anxiety.

Now I have adequate levels of thyroid hormones the adrenaline is no longer there.

Yes but what I am saying is that I get more anxious, the more medication I take even though I am hypothyroid

Tsh: 8

T4: 11

T3: 4.5

Yes thats what it can be like when you are not on an adequate dose. And when you increase it gets worse and you feel like giving up the increase because things are truly awful but if you manage to hang on for 8 weeks things may improve - for some folks they don't see the improvement till 12 weeks after an increase.

OK, thank you. I will persevere. Thanks for you insight 😊

helvella profile image
helvellaAdministrator

Low iron levels seem to be associated with difficulty in tolerating thyroid hormones.

Yes I thought that but I eat red meat most days as I used to be carnivore so I’m not sure my iron would be a problem. I do have low Vit D though? Would that affect it?

helvella profile image
helvellaAdministrator in reply to Relentlesssearch

I don't think we can rely on looking at our diets and, implicitly, assuming if there is plenty of iron we won't be deficient. All the issues surrounding absorption and unrecognised (occult) blood loss can affect our iron levels.

It would be appropriate to have a full set of iron blood tests and check.

I find vitamin D a difficult one. It's probably better that we are more aware than once we were, but I'm still not entirely convinced about some of the claims and suggested requirements.

I take a bespoke supplement that covers all my deficiencies,

I take it that a taylor-made multi-vit. What is in it? Because there are things that should not be taken together if you want maximum absorption and efficiency.

It was created by my functional endo so I believe that she will hopefully have thought about that but I’ll show you a picture

Reading the label as best I can, I spot two problems with this:

* There is vit C and vit B12. The two should not be taken together as vit C blocks the action of B12 in the body.

* There is both copper and zinc. Whereas the two have to be kept balanced, hypos are usually high in one - usually copper - and low in the other. Did she test both before prescribin them for you?

Are your vit D and ferritin both optimal?

My Vit d isn’t but my ferritin is

Really? I can't see iron listed in the ingredients. But, if it is, you won't absorb anything else. Iron should be taken at least 2 hours away from everything except vit C.

Vitamins

Vitamins

Vitamins

Vitamins
SlowDragon profile image
SlowDragonAdministrator

Please add most recent vitamin D, folate, ferritin and B12 results

What were your thyroid levels BEFORE starting on replacement thyroid hormones

Presumably you have autoimmune thyroid disease also called Hashimoto’s, usually diagnosed by high thyroid antibodies?

Are you on gluten free or dairy free diet

Starting low and slow…..usually levothyroxine is easier to tolerate

Which brand of levothyroxine have you tried

Wockhardt is often well tolerated

Wockhardt only make 25mcg tablets……we have quite a few members who only take Wockhardt (using as many per day as necessary)

Starting on 25mcg ….or splitting as 12.5mcg twice day = 25mcg in total

Waiting 6-8 weeks

Then ideally increase again to 25mcg twice day

Wait 6-8 weeks

Retest

Etc

Very common to only tolerate one or two brands of levothyroxine

If tried all brands of tablets

Next step is to try liquid levothyroxine…..often gives remarkable improvement and is usually 2 doses per day

I couldn’t tolerate increasing dose levothyroxine high enough until prescribed propranolol (beta blocker)

Adrenals can get exhausted trying to compensate for lack of thyroid hormones. Propranolol slows uptake and conversion of levothyroxine (Ft4) to active hormone (Ft3) ……in effect ….it makes an inadequate levothyroxine dose go further. Also adrenals can rest and recover. More on my profile

Thanks for your reply :)

It's complicated for me - here is my story broken down as much as possible, with as little waffle as possible.

I was symptomatic from age 13 (extreme fatigue, anxiety & depression) only discovered it was Hashi's by the time I was 21 through ultrasound although I have always showed low/normal antibodies (highest ever has been about 110 but usually they are in range, I believe the majority of the damage by the antibodies was done during the years I went undiagnosed) and a creeping TSH of 5.8.

I was put on levothyroxine, which did nothing to change any of my symptoms, it just gave me acne (at this point I had no idea how my thyroid was likely the cause of my severe mental health issues, and I was told that as long as my labs looked good that meant I was treated). I tolerated the levo fine, aside from the acne (as I mentioned.)

After many years of psychiatric treatment that included lithium, I discovered the carnivore diet. After 2 years of dedicated restriction the carnivore diet led me to a fecal impaction with overt (and never before experienced) symptoms of hypothyroidism (hair loss, dry skin, massive fat ring around my lower middle, no period, bowel impaction, air hunger, POTs-like symptoms, fluid retention in legs).

It was only at THAT time that I accidentally stumbled across STTM and I found out about levo being inadequate in many cases. Indeed, at this stage levo had become useless against the severe hypothyroidism symptoms I was displaying. I found a functional endo who prescribed 50mcg T4, 50mcg T3 - this quickly led to intolerable suicidal anxiety which subsided with cessation of the T3.

I then tried T3 only under the guidance of Paul Robinson and (had to stop all my T4 in order to do that) I fell deeper still into a state of hypothyroidism and the T3 only did absolutely nothing to improve any of my symptoms, but T3 only never made me anxious. I asked Paul how I might stop the T3 and safely get back to T4 only, and he told me to stop the T3 dead without a taper. I fell into a psychiatric state of crisis, had to be hospitalised because I didn't taper the T3.

Now, I find myself trialling NDT. I am up to 1.25grains and am experiencing significant, suicidal anxiety unless I take valium, in which case I am OK. The interesting thing is that unlike the T3 & T4, I am recovering from peripheral hypothyroidism (my hair isn't falling out, my weight is slowly dropping back off, my skin is softening again etc.) but the anxiety is unbearable.

Currently my dosage increase schedule is as follows:

Every 2 weeks increase NDT by 1/4 of as grain (2.25mcg T3 + 9.5mcg T4) I'm now up to 1.25 grains and it has taken me 10 weeks to get to this point. 1.25grains is the same as taking 11.25mcg T3 + 47.5mcg T4 (the dose I take today).

I believe that I must surely have an adrenal issue. It has been argued in the Keto community that those who don't thrive long term on Keto are either a. nutritional deficiencies, and/or b. reliance on the adrenals for too long can burn them out. I also have symptoms associated with cortisol problems such as anxiety & visceral fat (that I didn't have before the Keto failure) But when I test me adrenals, it comes up as low-normal. I have also experimented with ACE and it made me feel anxious and strange.

Now. In answer to your queries -

I had an OAT with my current functional endo (who just today told me she doesn't know how to help me anymore because she can't work out why I am not tolerating any thyroid medications, but I dont think she is well versed in adrenals) the OAT shows up any deficiencies and this is what my bespoke nutritional mix is made from. I can take a test to see if I am truly absorbing these things, but I'd assume I am as they are medical grade supplements.

I don't believe Propanalol would help me, I don't experience heart palpitations anymore since they began after carnivore diet (NDT has gotten rid of that) my only complaint is UNBEARABLE anxiety that is completely intolerable to live with. I also don't think that it is a question of taking a different form of T4/T3 etc. Because I have the same reaction no matter what I am taking - very bad anxiety. Which leads me back to my adrenal conclusion yet again.

As for my diet now - I have tried Paleo, AIP, Keto & Carnivore. So I have cut out gluten & dairy many times over the years with no real obvious improvement/problem when I reinclude them. If anything, chronic restriction has lead me into big problems.

You're a superstar if you got this far!

Any thoughts would be so Kindly received, but I realise you have your own life to get on with

😂

SlowDragon profile image
SlowDragonAdministrator in reply to Relentlesssearch

Propranolol is frequently prescribed for anxiety…..rather than palpitations

I had the reverse of palpitations….very slow heart rate and low blood pressure (both hypothyroid symptoms) ….this was because I was only on 50mcg or 75mcg levothyroxine and under medicated

But I had crippling anxiety and total exhaustion…..by then in wheelchair or bedbound… meant I couldn’t tolerate increasing dose levothyroxine

I had by then (28 years ago …pre internet) worked out different brands of levothyroxine were not interchangeable. I made sure to always get same brand levothyroxine from then on….Eltroxin …until discontinued, then Mercury Pharma.

Once I got settled on 4 x 10mg propranolol (spread through the day) over next two years I was able to slowly increase levothyroxine up to 125mcg.

I was diagnosed with Hashimoto’s age 34…..but had been affected ever since tonsillectomy age 5. Increasingly unwell from puberty onwards….adrenals had been working overtime for decades

Suggest you test vitamin levels

Also have you tested for Dio2 gene

thyroiduk.org/deiodinase-2-...

regeneruslabs.com/products/...

Or done Regenerus adrenal cortisol and Dhea test

regeneruslabs.com/products/...

cdn.shopify.com/s/files/1/0...

I’ll get the regenerus cortisol, thank you. Have you had to support your adrenals?

SlowDragon profile image
SlowDragonAdministrator in reply to Relentlesssearch

No….only going gluten free (astonishing improvement) was then able to ween off and stop propranolol

Maintaining optimal vitamins essential

Addition of T3 prescribed on NHS (3 x 5mcg)

I find it better to split levothyroxine dose too

(2 x 62.5mcg)

Oh lucky you that gluten free was all you needed! Thanks for your insight, appreciate it

So do you think it’s a viable strategy to take Valium while I increase dose and while anxiety continues and then to hope I acclimatise and then wean off the Valium before then increasing again before getting to the right dose?

SlowDragon profile image
SlowDragonAdministrator in reply to Relentlesssearch

Don’t know.

Never taken Valium or antidepressants

That seems strange considering how badly you suffered with anxiety. But what I mean I guess is, do you think there is merit to pushing through uncomfortable anxious symptoms and is it reasonable to expect that they may subside?

SlowDragon profile image
SlowDragonAdministrator in reply to Relentlesssearch

Propranolol was brilliant….I went from being unable physically function to being able to function almost normally….walking, cycling etc …..

I would need to pace…. (A busy day would leave me wacked) but as dose levothyroxine was very very slowly increased from 75mcg to 125mcg over 2 years ….energy levels slowly improved.

But underlying anxiety only stopped with withdrawal of gluten. Then took 6-8 months weening off propranolol (after being on propranolol almost 20 years)

It was only joining this forum, seeing just how widespread gluten intolerance was with Hashimoto’s….and private testing revealed low vitamins…so poor gut function.

Like many, post menopause my situation was getting worse

Private endoscopy confirmed severe gluten intolerance

Took a year to improve low vitamin levels

Private Dio2 test confirmed positive Heterozygous Dio2

Prescribed T3 alongside levothyroxine on NHS

Hi💖

I'm having the same problems with thyroid meds, but mine involves gut/stomach problems,.. I've been on T4 which unfortunately had lactose in it ( lactose intolerant and have colitis) then T4 teva which was just as bad ( contains mannitol a filler) then put on T3 this restored my T3 level but put my TSH to 0.05 and gave me a bad metallic taste in my mouth, the gp had a fit and decrease me making me hypo😠 then back to T4 teva for a trial due to gp saying all my symptoms are due to t3( they are not diagnosed with primary hyperparathiyroidism in 2020 the symptoms are of this condition) so now endo as rolled the last dice and prescribed me liquid levoroxine 3rd of August 2022..im still waiting on the prescription from my surgery😠 I've been on this road since total thyroidectomy in 2019 was told by my surgeon I would go on T4 after the op and I'd never look back, as thousands of people take T4 it's a very safe drug, well not for me or many it seems😠

Geogeor profile image
Geogeor in reply to birkie

“You’ll never look back”😂

It’s a conspiracy of silence - we know this is not true and yet thyroid surgeons (OK, surgeons are not famed for their bedside manner / care for the finer points of symptoms, but they should still know this) think this passes for medical advice.

birkie profile image
birkie in reply to Geogeor

Hi Geogeor

Firstly it took my gp just over a year to diagnose me with hyperthyroidism later after uptake scan, which endo didn't want me to have 😠 I was diagnosed with graves thyrotoxic my T4 was 100 T3 39.6..suppressed TSH.. So after 6 weeks of oral iodine I had thyroidectomy, my surgeon assured me after this op and the T4 I'd be a new woman, never look back😏.. I really didn't know much about thyroid conditions and I got the feeling that surgeons /endos and gps liked it that way.

I think endo and GPS know very little about thyroid /parathyroid conditions so when you gather info on it gps/endos either play dumb.. Which appears not to be hard for them😊 or they just contradict you, like my gp saying I was over medicated with a tsh of 0.05..again I told her TSH is not a thyroid hormone it's just a signal, T3, T4 are the hormones, I was slapped down saying I was so wrong on that, and leave it to the doctor to decide that🤦‍♀️.. Anytime I see a gp or endo I feel its like going to have your appendix removed and your local butcher is performing the operation 😆 as you can tell I have absolutely no faith in these professional people 😠

Hi

In a post further Down you mentioned the more medication you take the worse you become, that's what I'm like, my gp recently decreased my T4 from 50mg to 25mg due to side effects ( gut/stomach) until I see the endo I'm slight better but won't truly feel right until I'm off the T4 totally, but I found in 2019 after my thyroidectomy I was on 125mg T4 I was OK for around 4/5 days then as I took more tablets I started with the gut/stomach issues this persisted, my bloods were awful, same with the teva the more tablets got in my system the worse I felt, I came to the conclusion it was the build up of the ingredients in the tablets because when I didn't take them my symptoms disappeared🤷‍♀️

Hi All - I spoke to my functional endo. She has said that I was increasing the medication too fast and that some people are extremely sensitive to thyroid hormone and I just need to increase at a slower rate.

Thanks for all advice!

Relentless search- what is a “functional endo”?And have you seen a regular endo, too?

And why- given that you were previously hospitalised when medication changes made you very unwell - are you not under the care of GP and hospital endo on an ongoing basis?

I would steer clear of keto diet, until the other major issues are more clear. Good for rapid weight loss but am not sure how else it would help you here. I know there are lots of people who swear by it elsewhere but as you found out with constipation it can create new problems.

A functional endocrinologist is an endocrinologist trained in functional medicine (basically it means they are willing to prescribe T3/NDT and understand the importance it can play in a lot of people's treatment - NHS endos are rarely understanding of this)

I have washed my hands of the GP & NHS, they have perpetuated my cycle of ill-health by failing to recognise hypothyroidism, then treating me with T4-only and refusing to support me in my attempts to find out why I feel so unwell and how I might get better, even refusing to do something as basic as a blood test that includes FT4, let alone FT3. The NHS is now under so much pressure from COVID and mental health crisis that I can't even get an appointment, let alone a GP that's thyroid-literate.

Clearly from my experience outlines above you don't need to tell me to steer clear of Keto 😂 I'll definitely never be doing anything of that nature ever again! I think the drop in glucose availability inhibits the T4-> T3 conversion, and in someone already hypothyroid it is a recipe for disaster, as it was for me.

Sorry - I only just saw this. I think because you didn’t “reply” it didn’t show up in my feed.

Interesting about the keto aspect. I hadn’t picked up from your message that you’d moved away from it. What kind of diet / nutrition have you come to instead?

I wonder whether the (paid for by my insurance as NHS would not refer me to an endocrinologist no matter how unwell I felt) endo I saw qualifies as “functional”. Are all those on the thyroid U.K. list functional, since they are open to treating by symptoms and not merely by numbers?

Agree agree agree with you.

Oh sorry about that! I am new to this forum - I think I pressed reply this time.

Yes, I will never go back to keto, it lead me to a fecal impaction and severely tanked thyroid numbers but I don't deny that many with thyroid conditions do well on it.

Now I follow a Ray Peat style diet, which is largely made up by: Meat, organ meat, fish, shellfish, root vegetables, fruit, raw dairy, fresh juice. I am happy with this diet, I have good blood sugar control from it and I don't feel the need to binge because my sweet tooth is being satisfied by the starches and fructose, but I always pair it with protein to ensure steady energy release, I eat saturated fats (no PUFAs) but a minimal amount (I let the cream from my raw milk rise to the top for instance to avoid the fat). I don't skip breakfast ever anymore and I pack my breakfast in a bag, climb a small mountain local to where I live and eat watching the sunrise so as to set my circadian rhythm (apparently this helps cortisol which should help me tolerate my NDT). It is the first time in 4 years that I have felt I have a healthy relationship with food that isn't driven by fear or panic or health-related anxiety.

A functional practitioner is someone who works with your lifestyle & diet, as well as your blood results and existing diagnoses. All of them are different and sit along the allopathy/naturopathy scale in slightly different places. I'm not allowed to mention names I don't think, but my functional endo is an MD and endocrinologist, but she is also nutritionally trained & functionally trained, which means that she understands that T3 is important, and that root cause is worth trying to find. She also uses tests like OAT (organic acids test) and DUTCH (hormone panel) testing that are not available in NHS but give more information about overall imbalances and deficiencies, they're done using urine & spit. I'm not sure if the thyroid UK list are all functional, but I doubt that they are. There is a big difference between an endo who will let you have a bit of T3 in your treatment, and a functional endo who will try to assess why you got sick in the first place and how to support the entire system to make its way back to homeostasis. As with all these practices, there is room for snake oil, but hey - if the NHS and allopathic route were so great and alternative/functional practices were so bad, then they wouldn't exist. I am currently training myself to become a functional practitioner, as a naturopathic nutritionist so that I can support people with thyroid conditions... I just need to work out my own issues first, which is proving harder than anticipated!

I like the sound of your diet. And your daily morning walk.

That kind of diet works well for a lot of people for a lot of reasons, and is not so far from what our early twentieth century ancestors (who could afford this variety) ate, before convenience foods, freezers and large numbers of women going out to work in a workplace (and yes, women have always worked!) etc meant that people lost the time / need / wish to cook from scratch. And before we decided to eat pizza and pasta and breakfast cereals all in the same day, some days, leaving much less room in our routines for the non-wheat food groups.

I have a friend who is seeing the worst of all the alternative medicine routes as she spends thousands and thousands of pounds in an effort to make herself feel better, and each one tells her something totally different. She can only just afford it, but boy do they take advantage. I am glad you have found a good one.

Yeah, the diet is great - I wish I'd done it as soon as I started down this searching route, I've wasted time and damaged my body on other restrictive diets. It's terrible the state of the standard person's diet these days, I worry a lot for the future - they're now making synthetic meat in a lab! Yeeeruck!

I really take issue with the functional/alternative practitioners who do that, they're just as bad as the negligent NHS GPs/Endos. I think they're well-intentioned, but as I mentioned on this thread to someone just now, I have been done badly by it. A doctor called Paul Saladino charged me $900 and told me to eat meat, drink water (this was during my carnivore phase) and I developed a fecal impaction with horrendous hypothyroidism. He himself then want on to get hypothyroidism from the diet! Did I get a refund? Of course not, even though the advice was incredibly basic, and incredibly harmful. But live and learn. I like my current functional endo, but she is eye-waveringly expensive. I keep a close eye on forums, thyroid books & general community say-so because I want to be aware of what our community (that is to say the hypothyroid community) are saying, as our shared wisdom is a good way of measuring how much snake oil I might be being sold. I do trust my current endo, and I think she really wants the best for me, but I could just be being naive!

B12 injections. I got worse & worse and progressively tolerated less and less thyroid meds. In my case it was a physical reaction. I tried every combination of NDT, T4, T3 possible. My b12 levels were fine due to supplementing with tablets. One morning I woke and everything was burning & parts of my body had gone numb. Going on injections + high doses folic acid finally solved it, but it's taken years. My iron was also pitifully low despite eating (craving!!) massive amounts of red meat.

So yes, as the admins say, start with testing B12, folate, iron, and Vit D and start with fixing any deficiency.

You might also want to get a full blood count, homocysteine, and active b12.

Note your multivitamin has too much B6. It's suggested that more than 10mg can be harmful. B6 is the one B vitamin that can build up in the body and become neurotoxic! I would also get B6 tested.

Don't rely on vitamins/minerals being optimal even if you're supplementing. It's very easy to go over/under without realizing. Do post any recent labs.

Thank you

One other thing I noticed looking at the pics. Methyls are known to react badly in some people, causing anxiety, irritability, etc. Your multivit has both methylfolate & methylb12.

Long time ago, I tried them and felt absolutely horrid mentally, even though i have some of the so-called mthfr mutations. FWIW.

Yes I have read about that. I am in the lucky minority and don't have MTHFR or associated methylation issues. I am hoping that by slowing down my titration I will be able to tolerate NDT in time :) Thanks so much for your considerations, I'll look into the B6 for sure!

Hi, I'm at the beginning with NDT -Erfa too, slowly titration up to 2 grains now but I feel there is still room to increase the dose. I was on 125 levo and 15T3. Anxiety was on the roof but as I build up I feel better. If you do not want to take SSRI -Lexapro(antidepressant), for anxiety it works well and really helps veggie plant caps like 5HTP and CamZ(with Zembrin-natural antidepressant) and Natural Factors, Stress-Relax, Adrenal Serenity, 60 Vegetarian Capsules. I used it and really helps.

Hi, thanks for your reply 😊 did you have anxiety as you increased ndt? Sorry I wasn’t quite clear on that in your reply

When I have anxiety I know I have to take the midday or evening dose. I take three times/day. It's like I'm running out of fuel, my vision is drifting away and I can't make coherent judgments.I have anxiety because my t3 decreases from ndt in the afternoon and in the evening and the body demands a constant level of t3 after about 8 hours.I have a different kind of anxiety when the dose is too high, then it's a kind of nervousness, agitation about 4 hours after ingestion. Then t3 is at its maximum level, after then it starts to decrease from the blood and after about 8 hours it is at half and after 12 hours it reaches the base level.

Thanks interesting thanks for your reply! Did you get anxiety when you initially began and raised NDT?

I never became suicidal as a result of taking thyroid medication, but it did make me feel very unwell and I struggled to tolerate thyroid meds of all kinds when I first started. I found that the least bad option for me was taking T3 only.

What has caused me to feel suicidally depressed is melatonin and, many years ago, starflower oil that was supposed to help with periods and period pain. It has been easy enough to avoid starflower oil, but I really wanted to take melatonin if possible, because I've suffered from lifelong insomnia. But one tablet of melatonin taken two nights on the trot was enough to make me feel severely suicidal.

With regard to my thyroid what I really had to do to tolerate thyroid hormones in any form was to improve my nutrient levels i.e. vitamins and minerals. And having done so I can now tolerate melatonin as well.

I also had to lower my cortisol (which was very high in a 4-part saliva cortisol test - actually over the range in three pout of the four samples). I know that many people struggle with thyroid hormones when their cortisol is very low.

I now take Levo and T3.

Do you have any results for any nutrients at all? And any results for cortisol?

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humanbean in reply to humanbean

I've just thought of something else that has helped me generally...

I spent decades being severely depressed, often feeling suicidal and hopeless. I was prescribed valium in the 70s (it achieved nothing apart from making me lose control of my sleep - I was sleeping for 18 hours at a time a few nights a week, but in between these long sleeping times I would not sleep for a couple of days). In the 1990s and into the early 2000s my doctors kept on prescribing SSRIs. I tried four or five different ones and I hated them all - and they didn't help either.

What worked for me was 5-HTP. I describe it here :

healthunlocked.com/thyroidu...

Yes unfortunately 5htp never did anything for me, I believe my thyroid is the root of my mental health issues

For me, my mental health issues were caused by a combination of low iron and thyroid.

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