Awful reaction to Levothyroxine: Hi, After having... - Thyroid UK

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Awful reaction to Levothyroxine

edd11ee
edd11ee
85 Replies

Hi,

After having most of the symptoms of an underactive thyroid I was diagnosed with Hypothyroidism by my GP back in May and started on a dose of 25mcg of Levo, rising to 50mcg from week 2.

Feeling normal that morning, I took the first 25mcg tablet with water on an empty stomach and without taking any other tablets. 3-4 hours later my head felt like it was stuck in a vice, my arms and legs had turned to lead and the constant tiredness had turned to fatigue so extreme that I couldn’t even stand up. I had a high temperature, my chest was tight and I was short of breath. As an asthmatic with a lung function of only 80% this was scary to say the least and I immediately phoned the surgery and insisted that the GP speak to me. He told me under no circumstances to take any more Levo and saw me later that day where he said that there were no other treatments that he could prescribe and he’d refer me to an endocrinologist.

Fast forward to August and I arrive for my appointment with an endocrinologist only to be told that it had been cancelled as he didn’t understand why he needed to see me and referred me back to the GP! The GP duly wrote another referral letter and I have an appointment on Wednesday (hopefully!).

I now feel like my symptoms have gotten worse since my diagnosis. Has anybody else suffered side effects similar to this when taking Levo? Can I expect to get any help on Wednesday? What are people’s thoughts?

Many thanks 😊

85 Replies
oldestnewest
Nanaedake

What type of levothyroxine did you take? What was the packet called? You might be allergic to something in that particular type. Not all levothyroxine suits everyone.

You also need FT3, FT4 along with TSH, vitamin D, folate, ferritin, B12, TPO and TgAb antibodies testing for full thyroid evaluation.

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edd11ee
edd11ee
in reply to Nanaedake

Thanks for replying, it was Teva. I did suggest to the GP that maybe I’m allergic to it and he said that’s the one that all the pharmacies will stock so that’s all you’ll be able to get. Very frustrating.

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helvella
helvellaAdministrator
in reply to edd11ee

Afraid you might have to go round every pharmacy to get Mercury Pharma (Advanz), Wockhardt, or Actavis (Accord) also packaged as Almus for Boots and Northstar for Lloyds.

I still get my green NHS prescription so I have the choice of going to any pharmacy.

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cazmania7
cazmania7
in reply to edd11ee

I’m sure others will tell you, there are several brands actually and some get along with some and not others!

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Nanaedake
Nanaedake
in reply to edd11ee

Doctor is not telling you all the facts. Many, many people have reacted to TEVA and other formulations are available. Actavis and Wockhardt are other types that are taken by many members here. Actavis is stocked by Boots under their own suppliers brand name, Accord or Almus. To check the type of levo, you need to read the side of the box or leaflet to find out who holds the marketing authorisation.

You can ring around pharmacies to find out who stocks which type.

Refer you GP to the MHRA 2013 review of levothyroxine for their further information on the drug.

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edd11ee
edd11ee
in reply to Nanaedake

Thanks everyone for your replies. I will see what the endocrinologist says on Wednesday and then get one of the brands mentioned. Thanks again for your help.

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mcooper
mcooper
in reply to edd11ee

Sorry to hear you’ve had such a horrible reaction , not tried teva but had problems with actavis, now I take wockhardt and to my knowledge it has the least amount of fillers. It comes in 25mcg tablets. Good luck

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edd11ee
edd11ee
in reply to mcooper

That’s very helpful. Many thanks.

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Gingernut44
Gingernut44
in reply to edd11ee

The same with me, I've never tried Teva (and don't intend to) but Mercury Pharma gave me headaches/stomachache and Actavis (Northstar Lloyds) gave me severe bloating/, constipation and headaches. I have settled on Wockhardt as they have fewer fillers although still not "perfect". The only problem is they only come in 25 mcg but they are very small and you can bung them all in your mouth at once (I'm taking 125 mcg).

Once you find a brand that suits you, make sure your Doc states this on your script. You may have to find a helpful independent Pharmacist to make sure that's what you get on each renewal.

Best of luck with your Endo appointment

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edd11ee
edd11ee
in reply to Gingernut44

Thank you

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jellydo
jellydo
in reply to Nanaedake

try Naturethroid or Armorthroid. These are all natural so you may need to find a different dr. to prescribe them.

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edd11ee
edd11ee
in reply to jellydo

I did ask the GP about NDT and he said he can’t prescribe it, it has to come from the endo. I asked if this was due to its cost and he smiled and nodded his head so I doubt my GP practice would be willing to continue with my prescription even if I did manage to get it.

Did you find it easy to be prescribed it? Did you have a battle with your GP to then continue it?

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jellydo
jellydo
in reply to edd11ee

I had to go with a homeopathic dr to get it. A lot of endocrinologists will prescribe it. My insurance covers it also.

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edd11ee
edd11ee
in reply to jellydo

Thanks, I’ll look into that if I don’t get any help tomorrow.

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Mamapea1
Mamapea1
in reply to edd11ee

Teva was the worst for me too. I'm sure I saw a page somewhere on the Thyroid UK main site a while ago, entitled 'Medications for Hypothyroidism' which listed them all, that would be useful, if it's still there. Good luck with finding something suitable...we've all been through some sort of nonsense, unfortunately.

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filenada
filenada
in reply to edd11ee

Teva!!!!!! I also had terrible reaction. Felt like my insides were being squeezed and shrivelled, I could barely stand upright. My skin also had a yellow tinge to it.

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Nessy50
Nessy50
in reply to edd11ee

That’s rubbish for a start a lot of people don’t get on with Teva & I’ve yellow carded it. The pharmacy can order other brands in they try & give you the cheap one I think! I’m not sure if Levo is making me worse but thought I’d give it a go.

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Francis1957
Francis1957
in reply to Nessy50

How do you yellow card a drug ? but I had Teva in T3 which caused my Coeliac to flare up dreadfully so told my Pharmacy no Teva, but now they are giving it to me for another drug I take, Baclofen for Stiff Persons Syndrome and have given me T3 made by Sigma Pharm which has sent my blood sugars off the scale ( Diabetic 50yrs) they told me there was no other make of T3 in 5mcg as I now take 15mcg T3 and 100mcg of Levo I was diagnosed with Thyroid problems by a Diabetologist in the early 90s on a usual Diabetes appointment he asked me how long I'd had shopping bags under my eyes and asked me for an extra blood test as I left and then wrote to me to say I had a problem with my Thyroid and needed Levo and was happily on 175mcg of Mercury Pharma for years and then my symptoms came back and I had read on this website I maybe wasn't converting when I next went to my Endo I told him I was existing not living and I was suicidal he tried me on T3 and the difference it made was amazing but, I was on 20mcg and he suggested dropping it to 15mcg due to my blood results (since I've been on T3 my Endo all the Thyroid tests) but I rang his secretary today and he called me back as soon as and told me the solution is to go back on T3 20mcg and reduce my T4 to 75mcg, my Neurologist who diagnosed my Coeliac although he had been blood testing me for it for 5yrs and Biopsies eventually it showed a positive result in my blood and I have been totally gluten free for 2yrs and he checks my anti-bodies so I'm hoping the Teva hasn't put me back as since I've been gluten free I have lost roughly 1 and a 1/2 stone in weight and feel better in myself if it wasn't for this website I would not have understood anything

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edd11ee
edd11ee
in reply to Francis1957

You can yellow card here: yellowcard.mhra.gov.uk

Sounds like this Teva is awful stuff.

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Nessy50
Nessy50
in reply to Francis1957

Hi I’m Coeliac too for 9 years & often we don’t absorb vitamins so I’m B12 deficient on regular injections. If you are or were on metformin you could be deficient too, it’s stops you absorbing but best to be checked anyway. I was low in zinc but best to test first & also Vit D, so I take that, K2 & magnesium. If kidney probs you can’t take K2. I never show positive on bloods for coeliac but my villi was a mess down to no B12 luckily I’ve sorted it. Now working on thyroid & don’t think I convert. Another thing to check is ferritin, mines gone up now I take iron on & off. Hope you get some answers, well done on weight loss, I’m always under. X

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Francis1957
Francis1957
in reply to Nessy50

I'm lucky to have a Neurologist/Immunologist that checks my all my levels as he also does seminars for Coeliac UK so he is well up on what it does to your body although I had tests which came back negative he knew something was attacking my brain and spine it was Gluten ataxia although SPS attacks the nervous system he had an inkling it was coeliac and didn't give up, I thought he had a fetish for coeliac tests lol

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margritte
margritte
in reply to edd11ee

Yes Teva doesn't suit everyone .

I cant take it either, They had a problem a while back with the formula its not the same as Pharma I have always taken Eltroxin which is now made by Mercury Pharma and never had a problem.

Hope you get it right

Margaret

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Arpeggio
Arpeggio
in reply to edd11ee

I found on other groups that others also have an issue with Teva brand, and found from their experience that Teva has mannitol in it which causes problems, and caused my heartburn. I now ask the pharmacist for Actavis brand as that seems to suit me. I always check my meds at the pharmacy counter as he sometimes forgets and they won't take it back after you leave the counter.

The other thing is, some people need adrenal support before starting thyroid meds as their body can't cope with the increased metabolism. I was told to do adrenal support by a private doctor, I used Dr Wilson's adrenal support and Nutri Adrenal Extra at different times. Do your own research on this though.

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Runner95
Runner95
in reply to Arpeggio

I have Adrenal Insufficiency and Hypothyroidism. I was diagnosed with Adrenal insufficiency first. Taking a small dose of Levo put me into an adrenal crisis on two separate occasions with 2 different thyroid medicines ( synthroid and tirosint). I had to stop taking Levo and eventually changed to a natural thyroid Armour and slowly raised the dose due to my adrenal glands which has helped.

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thyroidquestions

After poor energy and headaches with Teva and another brand, my endo specifified for me to have Wockhardt. No more headaches (not that im near perfect). So the argument can be won in some curcumstances.

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Benos123

I had a fairly similar experience with an "endo" about 15 years ago and who after I had been "laid out" naked on a medical type bench for him, breezed into the room, laid his cold hands on my stomach, asked me why I was here and then he was gone. This led me to thinking that the difference between God and an "endo" is that God doesn't make out to be an "endo"!

BTW I've been "sick"and searching for a cure on and off for the last 32 years and I'm off to London Town tomorrow to see a Toxicologist! Actavis is good!

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Cica77

I got really ill on Teva too. Activis makes me feel suicidally low for 3-7 days then it passes but I have nausea on and off every day with it. Only Mercury has been ok for me. I've only tried those 3 though. I had GP say there's no difference between them but luckily my pharmacist knew that's not true.

Your GP saying no others are available is bs. Unfortunately, knowledge about thyroid issues with GPS etc seems to be very low.

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Fot_25

I can feel you I have been through hell since I put that medication in my mouth if I was you I will never took it at the first place but since you did it please insist when you gone see your endocrinologist to do a full thyroid panel not just tsh gp they don’t have an idea they just like to give medication because the tsh is high bullshit so please be very careful and as I told you ask them to run a full thyroid panel best luck to you

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Calends

I had terrible side effects with Levothryroxine. Took from February of this year til about May. I felt like I was being poisoned. I gained a pound a week for 10 or 11 weeks. I had every side effect. Disturbingly, every side effect is also the symptoms of Hypothyroidism so it is through the looking glass for sure. In the States, Levo is the generic and Synthroid is the name brand. Endocrin put me on Synthroid and back I went through the side effects. But they were beginning to disappear. Joint pain went away, headaches begin to lesson, the whole drill. But then the one of my T's begin to go back up so now we are going to add cytomel. to help me convert the Synthroid...freaking crazy land. So now I am off the cytomel an taking the Synthroid at 50 but....I live on a roller coaster.

I truly hope you begin to feel better. I have given up ever feeling like myself again. I just take the stinking stuff and try to get through the day without snapping peoples heads off.

All the best.

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765nottyash

Mine is a very similar story, I told my Dr I felt terrible on Levo, I even suggested that I was allergic to it in some way, he said I had no choice, I could either take it or watch my hair fall out. Thankfully I didn't listen. I got struck off from his practice for lack of faith in him, I guess he thought he was some sort of god.

After lot's of research I went on Nature and with in a couple of weeks started to feel better, that was over 10 years ago.

Over the years I've found changing my diet to be the most helpful, giving up gluten, soy and dairy (except butter which is a fat and good for you, I won't eat margarine).

It's been a lot of trial and error and I've not really found any of the so called specialists to be helpful, endocrinologists are by far the worst, a total waste of time in my opinion.

It really is a case for DIY and finding your own route cause, take care and don't give up the answer is out there, it's just we're all different, listen to your body it knows best!!!

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edd11ee

Thanks for all the replies everyone.

I won’t ever be taking Teva again! Sounds like it’s going to be trial and error to find a brand that agrees with me. I will insist that they do a full thyroid panel but as they refused to see me initially I don’t hold out much hope!

The lack of support from the NHS with thyroid issues is staggering. I see an NHS consultant every 6 weeks or so for my asthma and he couldn’t be more helpful- he’s even written to the endo in question on my behalf insisting that I’m seen as he tells me there is some research to suggest that when the thyroid isn’t functioning properly it can interfere with the diaphragm and cause shortness of breath.

I know it will be expensive but has anyone had any success seeing an endo privately?

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littlemo76
littlemo76
in reply to edd11ee

I too had bad reaction to teva. Made my levels go crazy. They have found that the lactose has been replaced with manitol in Teva. Look up manitol side effects n you will probably relate. Please report it with a yellow card too. Iv never found a GP or endo who understands or believed me. Im on T3 Liothyronine so there are other treatments. There is also NDT.

I wish you luck

This place n thyroid uk helped me a great deal to understand it all. Wish it had been on the go 25yr ago.

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edd11ee
edd11ee
in reply to littlemo76

I have reported it. Thanks

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littlemo76
littlemo76
in reply to edd11ee

I also was diagnosed with asthma, Chronic fatigue, fibromyalgia, Afib ,depression. Though they were making me depressed n anxious. T3 cured my asthma fatigue and fibro. Iv never had a painkiller betablocker or inhaler since switching to T3 only.

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edd11ee
edd11ee
in reply to littlemo76

Thanks for your reply. Very helpful to hear that T3 cured your asthma fatigue. I will ask about this tomorrow!

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Moominmumma

I’m suffering with fatigue and fibro after 20 years on levothyroxine also regular nausea and digestion problems - now wondering if it relates to the tablet I’m taking.

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Nessy50
Nessy50
in reply to Moominmumma

Could be or maybe you don’t convert would need to test free T3 & free T4

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th2304
th2304
in reply to edd11ee

My GP referred me to NHS endo a couple of years ago, the request was rejected as inappropriate. My GP said in our health region Portsmouth, the endo will not see anyone with under active thyroid because there is a defined treatment protocol, which basically seems to be TSH blood test and prescription for Levothyroxine. My current GP told me that he can request T4 test but may be rejected and only TSH test done. It would seems that it is all about cost and the NHS only want to provide the simplest and cheapest treatment for thyroid problems, often leaving patients with totally inadequate treatment and I suspect leading to other medical problems years later. My wife and I both have under active thyroid and switched from Teva a couple of years ago. We get Almus from boots and either Wockhardt or Mercury for 25mcg tablets, I do prefer Wockhardt, but all seem to suit us better than Teva. Maybe one day the NHS (NICE) will wake up and realise that by inadequately treating thyroid problems it is costing the NHS more money because it is leading to other medical conditions. Nether my wife or I have had any investigation to try to determine the cause of our under active thyroid.

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SlowDragon
SlowDragonAdministrator
in reply to th2304

th2304

Suggest you get full thyroid and vitamin testing privately via Medichecks or Blue Horizon

Come back with new post once you get results

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th2304
th2304
in reply to SlowDragon

Thanks for your reply. Am looking into private blood tests, ideally to get a proper blood draw as wouldn’t think finger prick would draw enough blood for all the required tests. Will have a look at Medichecks and Blue Horizon.

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Nanaedake
Nanaedake
in reply to edd11ee

You will probably find the administrators' experience and advice on this forum more helpful than any Endo, private or NHS. Private Endos can charge a lot for little help but if you get a list of helpful Endos from Thyroid UK you might have better luck.

Most Endos are diabetic specialists. If you do choose one then make sure they are a thyroid specialist, not someone who has an 'interest' in thyroid care. I think that means they've had their arm twisted to see thyroid patients because there's no one else in the hospital who does it. And yes, I agree that Thyroid care is Very poorly served in the NHS compared with other chronic conditions. Unfortunately, I think it's because it takes a long time for us to die from untreated, under treated or mismanaged thyroid care so we are not urgent as far as NHS is concerned and can go to the back of the queue.

It's very short sighted because ill health leads to many return visits to GP with unresolved symptoms. Considering every 10 min GP visit costs over £50 it's false economy. It really does seem like no health care provider actually is bothered unfortunately.

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SlowDragon
SlowDragonAdministrator

Your FIRST step is to get FULL Thyroid and vitamin testing

The endocrinologist may do all these.....but they may not. You can get any not tested by endocrinologist, done privately.

You are legally entitled to printed copies of your blood test

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

Low vitamin levels are extremely common, especially if Thyroid antibodies are raised

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 . This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)

when/if you start on Levothyroxine........Last Levothyroxine dose should be 24 hours prior to test, (taking delayed dose immediately after blood draw).

Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies or all vitamins

thyroiduk.org.uk/tuk/testin...

Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have special offers, Medichecks usually have offers on Thursdays, Blue Horizon its more random

If antibodies are high this is Hashimoto's, (also known by medics here in UK more commonly as autoimmune thyroid disease).

About 90% of all primary hypothyroidism in Uk is due to Hashimoto's.

Low vitamins are especially common with Hashimoto's. Food intolerances are very common too, especially gluten.

So it's important to get TPO and TG thyroid antibodies tested at least once .

Link about thyroid blood tests

thyroiduk.org/tuk/testing/t...

Link about antibodies and Hashimoto's

thyroiduk.org.uk/tuk/about_...

thyroiduk.org.uk/tuk/about_...

List of hypothyroid symptoms

thyroiduk.org.uk/tuk/about_...

As other replies have said, many, many people react very badly to Teva

List of different brands available here in UK

thyroiduk.org.uk/tuk/treatm...

The aim of Levothyroxine is to increase the dose slowly in 25mcg steps upwards until TSH is under 2 (many need TSH significantly under one) and most important is that FT4 in top third of range and FT3 at least half way in range

All four vitamins need to be regularly tested and frequently need supplementing to maintain optimal levels

NHS guidelines on Levothyroxine including that most patients eventually need somewhere between 100mcg and 200mcg Levothyroxine.

nhs.uk/medicines/levothyrox...

Also what foods to avoid (eg recommended to avoid calcium rich foods at least four hours from taking Levo)

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edd11ee
edd11ee
in reply to SlowDragon

Very helpful, thank you for your reply. When I was tested in May my TPO antibodies were 658 with a normal range of 0-59. My T4 was 9.5, within the normal range of 9-19. I questioned the abnormal reading with the GP but was told that was nothing to worry about!

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SlowDragon
SlowDragonAdministrator
in reply to edd11ee

So ask endocrinologist to test vitamins and to do coeliac blood test too

Your high antibodies confirms cause as autoimmune thyroid disease (Hashimoto’s)

Keep reading posts on here

You will learn a lot

Most medics ignore the autoimmune aspects and only treat the subsequent hypothyroidism

But looking at improving vitamin levels and addressing common good intolerances (usually gluten) can give significant benefits

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edd11ee
edd11ee
in reply to SlowDragon

Will do. Thanks for the excellent advice, much appreciated.

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SlowDragon
SlowDragonAdministrator
in reply to edd11ee

Hashimoto's frequently affects the gut and often leads to low stomach acid and then low vitamin levels

Low vitamin levels affect Thyroid and frequently need improving by supplementing

Vitamin D

ncbi.nlm.nih.gov/pubmed/286...

Vitamin D deficiency is frequent in Hashimoto's thyroiditis and treatment of patients with this condition with Vitamin D may slow down the course of development of hypothyroidism and also decrease cardiovascular risks in these patients. Vitamin D measurement and replacement may be critical in these patients.

endocrine-abstracts.org/ea/...

Evidence of a link between increased level of antithyroid antibodies in hypothyroid patients with HT and 25OHD3 deficiency may suggest that this group is particularly prone to the vitamin D deficiency and can benefit from its alignment.

Testing B12 important

ncbi.nlm.nih.gov/pubmed/186...

There is a high (approx 40%) prevalence of B12 deficiency in hypothyroid patients. Traditional symptoms are not a good guide to determining presence of B12 deficiency. Screening for vitamin B12 levels should be undertaken in all hypothyroid patients, irrespective of their thyroid antibody status. Replacement of B12 leads to improvement in symptoms,

Folate supplements can help lower homocysteine

ncbi.nlm.nih.gov/pmc/articl...

Levothyroxine can decrease serum homocysteine level partly; still its combination with folic acid empowers the effect. Combination therapy declines serum homocysteine level more successfully.

Hashimoto's is as much a disease of the gut as the thyroid

Poor gut function can lead leaky gut (literally holes in gut wall) this can cause food intolerances. Most common by far is gluten. Dairy is second most common.

According to Izabella Wentz the Thyroid Pharmacist approx 5% with Hashimoto's are coeliac, but over 80% find gluten free diet helps, sometimes significantly. Either due to direct gluten intolerance (no test available) or due to leaky gut and gluten causing molecular mimicry (see Amy Myers link)

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 or endo for coeliac blood test first or buy test online for under £20, just to rule it out first

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...

scdlifestyle.com/2014/08/th...

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

restartmed.com/hashimotos-g...

Adrenal insufficiency can be a factor. Adrenals have to work much harder to compensate for being hypothyroid. Endocrinologist may run adrenal test. If adrenal insufficiency is a factor it's often necessary to increase Levothyroxine very very slowly.

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th2304
th2304
in reply to SlowDragon

I think some results get ignored because of the complexity of the problem, it would seem there is not enough expertise in the NHS regarding thyroid problems and from my experiences GP’s hands are tied when it comes to available treatment, they seem to have to follow NICE guidelines.

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Gcart
Gcart
in reply to edd11ee

Can’t make it up can you 😩

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BarbaraG70

By trial and error I found that Wockhardt Levothyroxine doesn’t upset my tummy. I put it under or on my tongue first thing in the morning. I keep it by my bed and do it when I wake up, which is any time from 5am, go to toilet and then go back to bed. This works for me. I have also found I am lactose intolerant and sensitive to wheat. Here in Bristol the chemists mostly stock the MercuryPharma brand, which does not agree with me, but I found that my local Boots will Order it in for me-still on the NHS. I hope you get some answers tomorrow but I found this website invaluable as the replies are from people who have Thyroid problems. One thing I did find out through this website was to leave 4 hours after taking Thyroxine before you take Magnesium, as it interferes with it. I now take all my medicines this way. Good luck in your journey.

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edd11ee
edd11ee
in reply to BarbaraG70

Thank you. Will update tomorrow after my appointment.

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Tutorista55

Very helpful thank you. I have just restarted on Wockhardt and take magnesium for night time leg cramps.

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BarbaraG70

Gosh yes. Forgot about the night time leg cramps. Recommended Magnesium to a friend of mine who doesn’t suffer with Thyroid but was in despair about cramps and almost went to the Dr! She was delighted it worked and has given her her nights sleep back.

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Tutorista55

Actually it was when I went to the dr with leg cramps that a blood test revealed I had v high TSH and hypothyroidism. I didn't notice any other symptoms at that point. I had always been tired allthe time in astressful job and overweight and cold all the time that was my 'normal'. He gave me Vit D and suggested I take magnesium before the test results came through. Unfortunately he left!

Cramps went away. Hypo not so much.

This blog has been a real eyeopener and help, much more than GP since. Short version: I was put on 50mg levothyroxine and after about 3 months had such joint pain that I could hardly lift a cup of tea or walk upstairs, so I stopped.

Now am back on because hypothyroid symptoms came back. Asked for a different brand after reading on here and, so far much better: less tired and cold and lifted mood.

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simone2887

yes that happened to me a few weeks ago i knew it was the levo so stoppped it and starting from scratch very very slowly breaking tablets in half....as tiredness and breathing problems come back in a week if dont return to it....am asmatic too. like the way you descripe "head in vice" exactly that.go 12.5 one week if ok on that then go 25 etc then not good on that maybe after another couple of weeks 37.5....had been on same dose dose for 2 years when that happened to me i guess body changes gets better , gets worse. very much trial and error nightmare life though. good luck

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edd11ee
edd11ee
in reply to simone2887

Thank you, can I ask which brand of levo you take? The GP did say that normally he’d suggest trying half a tablet but in my case not to because of being so short of breath after taking it.

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simone2887
simone2887
in reply to edd11ee

atavis..think it called. stopped it all for a week then started again at 25mg for a week started to feel a little breathless so increased by 12.5{half a tablet}and going to stay at that for a week. the min those suicidal thoughts and stiff /twitchy joints with the head in vice comes back i ll know im over dosing no matter the results...my advice again is slowly as you prob need them but getting the dose right or try the nature thyroid but still have the t4 which you have to increase slowly if sensitive to it which some people are but not all peeps. good luck

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hemp66

I had same reaction quite a few years after starting on Levo.extreme tired Ness feeling unwell .my Endocrinologist said the same have had many scans and x.rays ,Ent ,etc . Then started to chat with Thyroid UK . they looked at blood results medication , Hence have changed when I take my levo. found that I take my levo. Last thing at night stop eating and drinking except for water at 20.30 go to bed take levo around 22.00 hence nothing to interfere with my levo. Within 3days I have my life back unbelievable but wow its great 🤔😀😃 Text ThyroidUK wish you well

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edd11ee
edd11ee
in reply to hemp66

Thanks for your reply, I will do.

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photocopier

My suggestion is that you contact a Homeopath. The earlier you can get to see a Homeopath for a wholistic consultation and to help your thyroid and the possible residual symptoms you describe might be a good idea. Homeopathy can work as an adjunct to Conventional Medicine.

findahomeopath.org

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SlowDragon
SlowDragonAdministrator
in reply to photocopier

If you're hypothyroid no amount of homeopathy will replace misssing Thyroid hormones

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cgauthie

I couldn’t take it either. I had never felt worse in my life. I stopped after two days and my bloods we high through the roof after being low. I changed my diet to exclude dairy and gluten. Originally I was hyperthyroid and it went to hypo.

Make sure they test you for Graves‘ disease antibodies. I had low tsh and hypo symptoms. I went off all meds and things slowly improved. I take high does of cut c and bit d3, zinc and multi b. I also get b12 injections.

Now I am on no meds and have no antibodies and feel good. I continue to not eat gluten or dairy.

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edd11ee
edd11ee
in reply to cgauthie

My diet is good, and I don’t eat a lot of foods that contain these however I will look into excluding dairy and gluten completely and ask to be tested for Graves’ disease. Thank you.

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barneton

I changed chemists who gave me Teva which I had a bad reaction to. There is a lot on the internet about an ingredient of this make (mannitol)and problems people have had - also see story about France and thousands of women there complaining about this ingredient so government eventually did something. . Chemist said he could not change so went back to my original chemist who gave me Mercury Pharma without the additive in the Teva. So its not true that all chemists do Teva. I get my levo (Mercury Pharma) from Boots.

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Tutorista55

My chemist suggested that I shop around to ensure I get the brand I want. She said that the Wockhardt were more expensive than the other brands they stocked but still available on NHS and other branches of Boots. And if I needed s higher dose in future to take multiple tablets of that brand.

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WendyOSullivan

Hi - A few years ago I was diagnosed as hypothyroid too through a routine blood test. The doctor decided to treat me with Levothyroxine even though I felt fine but he insisted I take it. I consequently suffered terribly for a year and a half with awful side effects such as throat swelling, glands under ears swelling, fluid in ears, choking, fever and severe shortness of breath. I went from being really fit to feeling like a 90 year old who couldn't even walk up the stairs. I went on and off the levothyroxine and every time I went off it I recovered completely and as soon as I went back on it within a few hours I had all the bad symptoms again. The doctors said I was allergic to the fillers in levothyroxine and tried me on all different types, even a liquid one with no fillers, but I still had the same bad symptoms. They sent me to an endocrinologist and ear, nose and throat specialist too. I had every test and even an endoscopy as they refused to believe I could be allergic to levothyroxine. In the end the ENT doctor put me on a course of prednisolone (oral steroids) and, guess what, I recovered, and I now take levothyroxine brand Eltroxin with no problems. I have Hashimotos which means my immune system is attacking and trying to destroy my thyroid gland so by giving me extra thyroxine in the form of levothyroxine the problem was that my immune system went haywire and started attacking my throat etc, but calmed down completely after a course of steroids. You could tell your doctor this story and see what they say - good luck!

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edd11ee

That sounds very similar to me, my GP completely dismissed the idea that I could be allergic to the Levo, said there was nothing else he could do and he’d refer me to the endo. I have prednisolone in case of an emergency when my chest is bad, I didn’t take them when I suffered the reaction to the levo as after a few hours I started to feel normal again (well as normal as I ever feel). I will recount your story to the endo tomorrow and maybe he’ll agree to try Eltroxin. Thanks 😊

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birkie

Hi edd11ee

Quick run down.. I had overactive thiyroid diagnosed with graves had to have total thyroid removal may this year rendering me underactive.. I started on 125gm of levo 2 different types activis/workhart.. I was so ill I was put down to 100gm still felt very unwell I'm now on 50gm..one kind mercurypharma.. I feel hyper then totally lethargic fatiqued no energy I feel like I'm drugged my head is spaced out I also have a server headache can't sleep then sleep for hours it's so sporadic I'm unable to have any sort of life.., 😔😔😔

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edd11ee
edd11ee
in reply to birkie

You have my sympathy. It really is astonishing that the NHS don’t seem to be interested in helping people with thyroid issues when it’s an issue that affects us day to day in so many different ways. I hope you get your condition managed better soon.

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BBBOA

Hi. I had symptoms of thyroid toxicity when I tried Levo. Having to go without for now. TSH is 4. 5. Have hashimito thyroiditis. Been fobbed off as not needing it as under 10!!

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silverfox7

I u derstood that the TEVA brand was formulated for lactose intolerant patients so if that’s the case and that the pharmacist orders in these then they should be aware that they don’t suit the majority and should also be more sympathic when patients have problems wherethis could be the problem. No one seems brave enough these days to say-sorry, made a mistake as the fear of being sued could be the problem. I’m sure most of us with similar issues should be happy to try another brand and hopefully move on.

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Olsbird

Hi. I reacted very badly also to 50 mcg - boiling alive, heavy arms, aching neck, chest pains. The list was long. When I dropped the dose the side effects eased off. Although you are on a very low dose by others standards it maybe high for you. I found I felt better when gluten free (my neck wasn’t swollen and my guts felt better). I tried t3 and ndt but I could only tolerate very low doses of either. I’m now back where I started trying to find a Levo dose that doesn’t make me ill. I’ve seen 3 endos and lost count the number of gp’s. they all scratch their heads and say I’m unusual. I’ve also given gallons of blood over the years to be tested for seemingly everything known to mankind and they can’t find anything wrong. It may be that another brand of Levo could suit you so I wouldn’t discount that ( and you can get other brands) but you may just be one of the ‘unusual’ people. I’d also try going gf and see if that helps but you must be 100% gf for at least a month before you can really assess if abstaining is helping you. I also btw tested negative for coeliac disease and addisons which are sometimes the reason people don’t tolerate Levo. Good luck.

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edd11ee

*Update*

Saw the endo today and it was pretty useless as expected. I’d made a lot of notes and raised everything with him but just got dismissive answers on everything.

After going through my symptoms, he started by telling me my TSH level of 5.61 is borderline and they class 2 or below as optimal (hardly borderline then). He flatly refused to do a full panel of bloods saying it wasn’t necessary. He also denied that NDT is even a thing but did say that there are other brands of levo available.

He dismissed Hashimoto’s as anything to worry about and even though he actually thinks I have it he won’t diagnose it as he won’t treat it, just treat the hypothyroidism instead. When I pointed out that I have an awful immune system and could this be linked he did eventually concede that it could but again there was nothing that he’d do about it!

He did agree that an incorrectly functioning thyroid gland can cause issues with the diaphragm and lead to shortness of breath but I couldn’t possibly have that because I would have enlarged nerves in my legs first which would cause cramps.. Which I do suffer from! I’d dismissed this over the last few months as nothing but sciatica. When I told him, he just shrugged his shoulders at me! I will discuss this further with my respiratory consultant and see if he can push the endo on this!

I went and had some bloods taken but it was only the basic TSH and T4 etc. I asked whether if these come back showing high antibodies is this a definitive sign of Hashimoto’s and was told it could be but it’s irrelevant.

We finished the appointment with him saying that he’ll review the bloods and if he decides I need Levo (bear in mind I should have been taking the stuff for the past 6 months), he’ll write to the Gp telling them to prescribe a different brand other than Teva. I’m hoping that I can persuade the Gp to give me Wockhardt. We will then look at increasing the dosage when I go back in 4 months.

His parting line was ‘I can assure you you will feel normal again in 3-4 months’. We live in hope!

Thanks everyone for your helpful and informative replies. I will wait and see what his opinion is on my bloods and then have some done privately myself.

Does anyone know how I’d go about getting a copy of the results of the bloods taken today at the hospital, I’m pretty sure they won’t be sent to my Gp and don’t want to have to wait 4 months?

Thanks again 😊

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Francis1957

If you were referred by your GP your test results and a letter of what the Endo has said should be sent to yourself and a cc. sent to your GP that's what happens with my Endo and if not ask your GP for a copy of your test results they have to give you one its your business as well

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Ladybex

I had a bad reaction at first taking levothyroxine 25meg but changed to another brand and have been ok ... hope you get this resolved ASAP

Take care and update when poss 👍

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edd11ee
edd11ee
in reply to Ladybex

Thank you. I went in and spoke with the pharmacist this morning who made some phone calls to their suppliers whilst I was there and confirmed they can get Eltroxin and Wockhardt and are happy to do so for me even if my script only states Levo. I’ve had more help from the pharmacist than the endo!

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Ladybex
Ladybex
in reply to edd11ee

They re the different brands of levothyroxine ... I changed mine to WOCKHARDT and have been fine with that one.

Trial and error which is a pain but you need to get one that suits you

Best wishes

Ann

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caledoniancat

I agree with some of the other responders here. You may need to be tested for adrenal issues. My daughter had an Addisonian crisis after being on levo 25 for a month and then upped to 50. We didn't know she had Addison's until that happened. Levo speeds up the clearance of cortisol, so if you have an adrenal disease like Addison's you will become very unwell, very quickly. The National Institute for Clinical Excellence very clearly indicates that if you are prescribed something like levo the doctors should be mindful of possible Addison's, this may be why your GP referred you to the endocrinologist.

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Ladybex

That’s interesting ... I’m being tested for Addison’s next week ... thank you 😊

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Myro

Wow! how much knowledge and experiences. Wort to read. Starting with T4 is like being on drops of thyroid substances and suddenly being under waterfall. T4 is normally started with 25 mcg. My opinion is that it should be started with 5 or less mcg. Incresed every few days. Many people have trouble and can be diagnosed allergy or intolerance to something in tablet. They change few brands and in that time body adopted to T4. Not everybody has this troubles. But findings with that ones who has trouble when fillers change are golden.

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Hashimotosucks

I just took Levo for the first time in 10 years. Long story although I used to take eltroxin for many years which was rubbish. This new levo made me feel nauseous on the first day but on the second day I couldn't function. Terrible body aches, fatigue i just cancelled the whole day and went to bed. I went back to my Dr and now she's prescribed a liquid form. I tried it for the first time today so we'll see.

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edd11ee

That’s exactly like I was. What’s the liquid called? I hope it works for you.

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Hashimotosucks

This is exactly what's on the box

Levothyroxine

100 micrograms/5 ml

Oral solution

Levothyroxine sodium

Oral use by TEVA

It contains glycerol, sodium methylparahyroxyvenoate

Comes with a syringe

On studying the box it seems that although it's a 6 months supply it states that I need to discard it after 8 weeks! Back to the pharmacy I go, it's never easy.....

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edd11ee

Thanks but I think I’ll avoid anything with ‘Teva’ in the name!

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edd11ee

*Update*

I’ve just received a letter from the endo to say my bloods were marginal and I don’t need levo at the moment. We will however take more bloods and review these when I go back in 4 months.

My results were:

T3- 5.7 (2.6-5.7) (marginal, yet at the app he said we would get this down to 2 or below)

T4- 10.2 (9.0-19.0)

TSH- 7.0 (0.4-4.9)

He refused to test my antibodies as this wouldn’t tell him anything.

I have an appointment with my GP next week, what should I ask him? I no longer have levo on a repeat script otherwise I would have gone to the pharmacy and got a different brand.

I will get my bloods done privately in the meantime but I don’t think the endo will be interested in the results.

Many thanks.

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