Help please: Hi everyone. I have literally just... - Thyroid UK

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Help please

L154oh
L154oh

Hi everyone. I have literally just joined. Iv been going out of my mind. Iv been diagnosed with hypothyroidism, and on 100mg levo. However I seem to be getting worse. I bought Rachel Hill's book, be your own thyroid advocate and in it she recommends NDT. However I cannot seem to find it online. Does anyone know where to source this? I'm soo so sick of laying in my bed all day everyday while my partner looks after me, our child and our dog. I feel so helpless, I just want my life back

34 Replies
oldestnewest

Hi L154oh, welcome to the forum.

I think you're far more likely to get helpful answers if you tell us a bit about yourself. For example:

* How long since you were diagnosed?

* How long have you been on 100 mcg levo?

* When did you last have labs done?

* Can you post the results and ranges?

* Have you had your nutrients tested: vit D, vit B12, folate, ferritin?

* Do you have Hashi's?

It could be that you don't need NDT at all - it's not that easy to come by, these days - but just an increase in levo. People aren't going to share their trusted sources with someone they don't even know. :)

And, replies must be by PM only, as we mustn't post sources on the open forum.

L154oh
L154oh in reply to greygoose

Hi greygoose thank you for replying. I had my last bloods done in August. T3 is 3.9. T4 is 15. Iv been on levo since Feb. So far I find it horrendous. I take a bundle of supplements every single day, including magnesium, zinc, apple cider vinegar, turmeric, selenium, vitamin d, k, vitamin b complex along with a separate b12 and a whole host of others.

greygoose
greygoose in reply to L154oh

Um... I did say we needed the ranges for those results. They are meaningless without ranges because ranges vary from lab to lab. You didn't give a TSH result, do you have one?

Did you get your nutrients tested before starting the supplements? It's really important that you do. You need a base-line, for one thing, and you also need to know if you really need to take them. Taking supplements you don't need won't help and could be dangerous. And you need to know your levels to know how much to take.

So, I think it might be a could idea to give us the complete list so we can see if you're taking something that is making you worse. If you're taking iodine or copper, for example, they could make you feel worse. Supplementing is a whole science on its own. :)

Iv been on levo since Feb

Have you been on 100 mcg levo since February? Did you start straight onto 100 mcg, or has it been slowly increased to 100?

How do you take your levo? Do you take it on an empty stomach and leave at least one hour before eating or drinking anything other than water? And, leave at least two hours before taking any other medication or supplements? Four hours for iron, magnesium, vit D and calcium?

And how do you do your tests? Do you have the blood draw early morning - before 9 am - after fasting over-night? Do you leave a 24 hour gap between your last dose of levo and the blood draw?

L154oh
L154oh in reply to greygoose

Sorry. Yes my TSH is 4.42 (range. 27-4.2)

T3 3.9 (range 3.1-6.8

T4 15 (range 12-22)

No I started on 25mg levo, increased to 50 then 100mg which I'm on right now. I take it as soon as I wake and leave 1 hour before food and I actually take my supplements 2 and a half hours later but the magnesium, zinc, d and calcium I take 4 and a half hours after the levo.

My supplements I have been taking for 3.5years, before any notion of hypothyroidism, I haven't had a vitamin or nutrient test, its tough to get a full thyroid panel done in itself from my go.

I take vitamin c, b12, b complex, d, e, k, magnesium, zinc, multivitamin, l-tryptophan, l-thyanine, ashwaghanda, cod liver oil, krill oil, apple cider vinegar, bladderack, iodine, sea kelp, circummin/turmeric, iron, collagen, probiotics, garlic, folic acid, folinic acid, triphala plus, calcium and selenium.

My blood tests I book the earliest app. Which can sometimes be 10am I don't have anything from dinner the night before, I don't take my levo before having my blood taken as I know this can give a false reading.

SlowDragon
SlowDragonAdministrator in reply to L154oh

You need to stop taking iodine and sea kelp ...both are highly likely to be making your Hashimoto’s worse

Also ashwaghanda not recommended unless you have done cortisol saliva testing

We only recommend supplementing vitamins that have been tested and found to be low

Very unlikely to need calcium

Have you had iron levels tested. Iron is toxic in excess.

When were vitamin D, folate, ferritin and B12 last tested?

Suggest you get full thyroid and vitamin testing 6-8 weeks after stopping iodine, kelp and ashwaghanda

For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also important to REGULARLY test vitamin D, folate, ferritin and B12 - at least annually

Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .

Last dose of Levothyroxine 24 hours prior to blood test. (taking delayed dose immediately after blood draw).

This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)

Is this how you do your tests?

Private tests are available as NHS currently rarely tests Ft3 or thyroid antibodies or all relevant vitamins

List of private testing options

thyroiduk.org/getting-a-dia...

Medichecks Thyroid plus vitamins including folate (private blood draw required)

medichecks.com/products/thy...

Thriva Thyroid plus antibodies and vitamins By DIY fingerpick test

thriva.co/tests/thyroid-test

Thriva also offer just vitamin testing

Blue Horizon Thyroid Premium Gold includes antibodies, cortisol and vitamins by DIY fingerprick test

bluehorizonbloodtests.co.uk...

If you can get GP to test vitamins and antibodies then cheapest option for just TSH, FT4 and FT3

£29 (via NHS private service ) and 10% off if go on thyroid uk for code

thyroiduk.org/getting-a-dia...

monitormyhealth.org.uk/thyr...

SlowDragon
SlowDragonAdministrator in reply to L154oh

You don’t need to skip dinner before blood test. Just get bloods done before breakfast, or any drink apart from water

Make sure to be well hydrated the day before testing

Multivitamins are not ever recommended on here .......and certainly never as well as individual supplements.

Suggest you reduce supplements to just vitamin D mouth spray, magnesium, vitamin B complex

Are you aware that any supplements that contain biotin (multivitamins and vitamin B complex) Should be stopped a week before ALL blood tests

endo.confex.com/endo/2016en...

endocrinenews.endocrine.org...

Iron supplements should never be taken unless you have had full iron panel test for anaemia?

Have you had full iron panel test?

SlowDragon
SlowDragonAdministrator in reply to L154oh

Bladderwrack also very likely not helping at all as also has high iodine content

On levothyroxine we do not need any extra iodine (levothyroxine is made of iodine )

Excess iodine is used to treat hyperthyroidism

Likely your multivitamins have iodine in too

healthunlocked.com/thyroidu...

L154oh
L154oh in reply to SlowDragon

I appreciate all ur replies. My test was with medichecks. The thyroglobulin antibodies was 82.1 range <115 and thyroid peroxidase antibodies <9 range <34.

Regards the supplements I have never had an issue. My issue is the levo is making me feel worse not better and so I want to start NDT. I know what I'm meant to do before blood tests, sometimes I like to be extra cautious so the gp can't fob me off with false highs.

Its so hard to actually find help with hypothyroidism.

L154oh
L154oh in reply to L154oh

I take so many supplements because I'm such a fussy eater. As I child I never had a want to eat. My parents had doctors involved to find out why I just wouldn't eat. As a 30yo adult I still only eat certain things which is really frustrating as I'd love to live a healthy life but I just can't eat the same as my partner who eats literally all fruit and veg and meat. So I don't take my supplements as a substitute for food but more so as an add on to my very limited diet. My doc has actually told me to continue to take all my supplements.

SlowDragon
SlowDragonAdministrator in reply to L154oh

Your current results show you are under medicated and in need of 25mcg dose increase in levothyroxine

However when you stop all that excess iodine the thyroid results are likely to change ....perhaps by quite a lot

L154oh
L154oh in reply to SlowDragon

Do any of you guys take NDT?

SlowDragon
SlowDragonAdministrator in reply to L154oh

Before considering adding T3 or trialing NDT, both of which are extremely difficult to get , especially during pandemic

You need to get FULL Thyroid And vitamin testing

Come back with new post once you get results

L154oh
L154oh in reply to SlowDragon

Iv just given u my full thyroid results. Haven't had a vitamin test. I came here hoping to source NDT but u seem as unwilling as my go to help with regards to T3. Seems like a waste of time even asking, seems like your just fobbing me off, exactly how my gp does

greygoose
greygoose in reply to L154oh

That is a very unfair thing to say to people who are giving up their time to answer your post. We are not trying to fob you off, we are trying to help you. If you're going to self-treat, you have to know what you're doing, and I for one, don't believe that you do. Sorry, if that sounds harsh, but I can assure you we are a lot more caring - and a lot better informed - than your go. :)

SlowDragon
SlowDragonAdministrator in reply to L154oh

I am sorry you feel that way

Years ago, like you I thought NDT was the answer...long story short ...definitely made situation worse

We have to approach thyroid issues methodically

Getting vitamins regularly tested. Only supplementing what’s required. Every person is different. Many hypothyroid patients have very low iron, some have very high ferritin and low iron, a significant minority have high iron due to hemochromatosis

First step is to get dose levothyroxine increased as per NHS guidelines

Drop all that excess iodine and get vitamins tested

Great that you are on gluten free diet. This is often helpful

Email Dionne at Thyroid U.K. for list of recommend thyroid specialist endocrinologists who will prescribe T3 or NDT ......if you eventually need it once levothyroxine is increased to 175mcg

tukadmin@thyroiduk.org

geworgie3008
geworgie3008 in reply to L154oh

I think what you're not hearing here is that NDT isn't a magic bullet. You won't switch to NDT and suddenly be full of the joys of spring. It would be a process to find your balance, and even then it's not guaranteed to work for you.

Your recovery will take time, and I know how hard that is to hear, but in the first instance SlowDragon has offered you some excellent advice and the first thing to do is drop any supplements containing iodine as these are likely to be making you worse.

Then choose your next step. :)

greygoose
greygoose in reply to L154oh

I have taken it. It made me extremely ill.

greygoose
greygoose in reply to L154oh

Regards the supplements I have never had an issue.

Wel, what sort of an issue would you expect? You don't know what's going on inside. The calsium, for example, building up in your arteries because it's difficult to absorb. And, the issue will be when you have a heart attack. A lot of these things take time to build up, they don't show an instant problem.

And all that iodine!!! That is probably causing the issues you're blaming the levo for. Iodine, in excess, is antithyroid, it used to be used to treat Grave's patients. And, you are most certainly taking it in excess - did you know that you will be getting 68 mcg iodine just from your levo every day, which is recycled in the body. And, even if it weren't dangerous - which it is - it won't be doing you any good. It won't make your thyroid work any better.

I understand about being a fussy eater - I'm one myself. But, just throwing supplements at it willy-nilly is not the right way to go about it. The multi-vitamin, for a start, is a very bad thing to take - and will probably contain more iodine. And, if it contains iron, it will block absorption of everything else. Iron should be taken at least two hours away from everything else. There's a whole science to supplementing, and - to be brutally honest - you don't sound as if you know that much about it. And, changing from levo to NDT isn't going to countre-act the damage you're doing with all your supplements.

As to the levo...

TSH is 4.42 (range. 27-4.2)

T3 3.9 (range 3.1-6.8

T4 15 (range 12-22)

you are actually very under-medicated. When taking thyroid hormone replacement, the TSH should come down to 1 or under. Yours is over-range! You should have had another 25 mcg increase in dose six weeks after starting the 100 mcg. Your FT4/3 are both very low in range, so harely surprising you're not getting any better. You have been badly served by your doctors, but you're also mistreating yourself with all those supplements. Not that I'm against supplements, I hasten to add, but I'm for taking the right ones in the right doses.

NDT is not a universal cure-all. It doesn't suit everyone. I would strongly suggest you get optimally medicated on levo, get your nutrients tested, and sort out your supplements before you even consider trying NDT.

SlowDragon
SlowDragonAdministrator

Have you had coeliac blood test done

Are you on strictly gluten free diet

Frequently essential BEFORE considering adding T3

Changing to a strictly gluten free diet may help reduce symptoms, help gut heal and slowly lower TPO antibodies

While still eating high gluten diet ask GP for coeliac blood test first or buy test online for under £20, just to rule it out first

healthcheckshop.co.uk/store...?

Assuming test is negative you can immediately go on strictly gluten free diet

(If test is positive you will need to remain on high gluten diet until endoscopy, maximum 6 weeks wait officially)

Trying gluten free diet for 3-6 months. If no noticeable improvement then reintroduce gluten and see if symptoms get worse

chriskresser.com/the-gluten...

amymyersmd.com/2018/04/3-re...

thyroidpharmacist.com/artic...

drknews.com/changing-your-d...

restartmed.com/hashimotos-g...

Non Coeliac Gluten sensitivity (NCGS) and autoimmune disease

ncbi.nlm.nih.gov/pubmed/296...

The predominance of Hashimoto thyroiditis represents an interesting finding, since it has been indirectly confirmed by an Italian study, showing that autoimmune thyroid disease is a risk factor for the evolution towards NCGS in a group of patients with minimal duodenal inflammation. On these bases, an autoimmune stigma in NCGS is strongly supported

ncbi.nlm.nih.gov/pubmed/300...

The obtained results suggest that the gluten-free diet may bring clinical benefits to women with autoimmune thyroid disease

nuclmed.gr/wp/wp-content/up...

In summary, whereas it is not yet clear whether a gluten free diet can prevent autoimmune diseases, it is worth mentioning that HT patients with or without CD benefit from a diet low in gluten as far as the progression and the potential disease complications are concerned

restartmed.com/hashimotos-g...

Despite the fact that 5-10% of patients have Celiac disease, in my experience and in the experience of many other physicians, at least 80% + of patients with Hashimoto's who go gluten-free notice a reduction in their symptoms almost immediately.

L154oh
L154oh in reply to SlowDragon

I don't have coeliac disease. That causes weight loss and I am over 17 stone. I started gluten free about a month ago. Tbh I don't want to be on levo. My issue isn't with the T4. My issue is that my T3 clearly isn't high enuff. Hence why I want NDT. No I haven't had any of the other checks u mention. I have always been under the impression that the T3 is the biggest issue. 99percent of gps in the UK push levo on patients despite it not working for most because its cheaper than T3

SlowDragon
SlowDragonAdministrator in reply to L154oh

Nether levothyroxine or T3 or NDT work well unless Vitamin levels are optimal

Strictly gluten free diet and/or dairy free diet often essential

greygoose
greygoose in reply to L154oh

You're right in just about everything you say, there. BUT, when on levo only, to get your FT3 high enough, you have to have your FT4 high enough. T4 converts to T3 - if you have enough of it. You are under-medicated, and that's why your FT3 is too low. Your FT4 should be at least in the top third of the range, up around 20/21. Then your FT3 would rise to a decent level. :)

SlowDragon
SlowDragonAdministrator in reply to L154oh

Guidelines on dose levothyroxine by weight

Even if we don’t start on full replacement dose, most people need to increase levothyroxine 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...

So if you weight 17 stone approx that’s approx 107kilo

107 x 1.6 = 171

Likely to need 175mcg levothyroxine per day

Dose levothyroxine should be increased up in 25mcg steps, retesting 6-8 weeks after each dose increase

Once levothyroxine dose is high enough, all four vitamins optimal, if Ft3 remains too low....then is time to consider if you need addition of small doses of T3 alongside levothyroxine or to trial NDT

See GP for next 25mcg dose increase in levothyroxine

Always make sure to get same brand of levothyroxine at each prescription

Gingernut44
Gingernut44 in reply to L154oh

Please don't take umbrage, you have been given really good advice. Your TSH is far too high. You will only know how well you convert T4 into T3 when your TSH is down to 1 or below. Believe me, you won't find it easy to get NDT or T3 without a prescription and with a TSH of 4.42 you don't even know yet if you actually need either of them. Even I was astounded at all the supplements you are taking which contain iodine - you may think there are no issues with these and your Doctor, unfortunately, doesn't have a clue if he suggests you carry on taking them. You need to ask for an increase in Levo and also ask for Vit D, Ferritin, B12 and Folate to be tested.

Hello L154oh and welcome to the forum :

Your TSH needs to be much lower at around 1 or even lower and your T3 is currently at around 22% through its range whilst your T4 is at around 33% through its range.

Your TSH needs to go down and your T3 and T4 need to go up and into the upper quadrant of the ranges all of which will happen with an increase or two in Levothyroxine.

You will still have hypothyroidism symptoms and feel as though the Levothyroxine isn't working because you are not on a high enough dose yet to relieve your symptoms.

I can't comment on all the supplements you are taking - but by following the advice offered on this website I have been enabled to turn things around for myself and now in much better health.

SlowDragon
SlowDragonAdministrator

Links re iodine

thyroidpharmacist.com/artic...

Taking a high dose of iodine can exacerbate Hashimoto’s and accelerate thyroid cell destruction. The American Thyroid Association cautions against using doses of more than 500 mcg per day in the general public and noted that doses above 1100 mcg may cause thyroid dysfunction. These warnings are for the general population, but studies have found that people with Hashimoto’s may be sensitive to even smaller doses.

drknews.com/iodine-and-hash...

nhs.uk/medicines/levothyrox...

Is there any food or drink I need to avoid?

There are some foods and drinks that don't mix well with levothyroxine.

Drinks containing caffeine, like coffee, tea and some fizzy drinks, can reduce the amount of levothyroxine your body takes in. Leave at least 30 minutes after taking levothyroxine before you drink them.

Calcium-rich foods, such as milk, cheese, yoghurt and broccoli, can reduce the amount of levothyroxine your body takes in. Leave at least 4 hours between taking levothyroxine and eating calcium-rich foods.

Soya in food and supplements may stop levothyroxine working properly. If you regularly eat soya or take soya supplements your doctor might need to do extra blood tests to make sure you're getting enough levothyroxine.

Kelp (a type of seaweed) can contain high levels of iodine, which sometimes makes an underactive thyroid worse. Do not take supplements containing kelp if you're taking levothyroxine.

There’s obviously a question over wether your hypothyroidism is autoimmune

Both antibodies are within range, though TG antibodies are fairly high

20% of Hashimoto's patients never have raised antibodies

Have you had ultrasound scan of thyroid ?

healthunlocked.com/thyroidu...

Paul Robson on atrophied thyroid - especially if no TPO antibodies

paulrobinsonthyroid.com/cou...

Hi everyone. Wow that's alot of info, I have written it all down, the does and donts, thank you. I apologise for my sharp reply earlier, I have clearly been totally misled. I researched hypothyroidism and read online that iodine helps, but you guys clearly know what ur talking about so I will cut out everything, get a vitamin test, and take it from there. Regards the under medicated, I have a blood test on weds at 11.05 (earliest one available and not even my closest practice as my closest practice wasn't free until next Tues) so will have fresh figures regarding hormone levels by end of week.

I am gutted to learn about the milk, even soya milk. Which leaves me with one question. What am I going to do about breakfast? Lately iv been having bacon sandwiches (not too healthy I know) but I can't live on bacon. Does this mean I can't have cereal in the mornings? Or could I get around this by taking my levo last thing at night?

Since last April I feel like iv been glued to my bed, I'm just so desparate for this nightmare to end, I wake up every morning with nerves that make me freeze to the spot for no reason hence the ashwaghanda as I was led to believe it helps anxiety. I can't continue like this much longer im itching to get out to fresh air but I just can't drag myself up and out the door right now.

geworgie3008
geworgie3008 in reply to L154oh

The first time I posted on this board I was so overwhelmed by all the information that I didn't come back for a year! 😂

Keep coming back to this post and digest it as you can. Reading this forum every day will also really help.

I think everyone on this forum absolutely knows what you're feeling. It's awful to feel like your life is just slipping away. I think it's important to feel sorry for yourself about it occasionally because it's a dreadful thing to happen to you.

In regard to breakfast, so long as you wait an hour after taking your levo you can eat as you please.

I take my levo before bed because I absolutely can't be without a cup of tea in the morning!

You're in good hands here. There's always someone to answer your questions. :)

greygoose
greygoose in reply to L154oh

I apologise for my sharp reply earlier, I have clearly been totally misled.

That's OK, don't worry about it. It's hard living with hypothyroidism and it's bound to affect our moods. Yes, you have been misled, I'm afraid. There's an awful lot of loonies and charlatans out there, giving crazy advice - most of them don't even have the disease themselves! It's hard to sort the wheat from the chaff when you're just starting out. But, you get used to it. And, now you've got us to double check with. :)

I am gutted to learn about the milk, even soya milk. Which leaves me with one question. What am I going to do about breakfast?

I would say that soya milk was even more problematic than cows milk! My advice would be not to over-think it. After all, how much milk are you going to put on your cereal? Probably not enough to make that much difference. And, as long as you leave an hour between your levo and breakfast, it should be ok. The main thing is contenuity. If you always do the same thing, have the same thing for breakfast, your dose can be adjusted to compensate for any lack of absorption.

But, as you say, taking it at night would get around that problem nicely. As long as it's 2 to 3 hours after your last meal/snack/hot drink.

Take care. :)

I think you should try taking your Levo at bedtime then you can enjoy what you like for breakfast, provided that you haven’t eaten a large meal before hand, or you could do what lots of us do and take it in the early hours if you need to “spend a penny “ 😊

L154oh
L154oh in reply to Gingernut44

Thank you. Would almond milk be OK to use if taking levo in the early hours isn't available?

Sorry, I don’t know ☹️

Thank you everyone. I have noted all your important points. I can sense a disagreement brewing between my gp and I 😂

SlowDragon
SlowDragonAdministrator in reply to L154oh

First step is to get 25mcg dose increase in levothyroxine

Plus vitamins tested

Print Out guidelines on dose by weight to back up your request....but with such high TSH your GP should be contacting you to insist on dose increase

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