Dear all, apologies if there is a post already on the theme, but I have a diagnosed Hashimoto's for over 10 years, suffering from all the classic symptoms of severe hypothyroidism. Sadly levothyroxine never really worked for me (got up to 200mg until the GP 'accepted' it was not working).
Had good experience with armour, but i truly wasnt able to find anyone to proper prescribe it or even wanting to monitor it for me (let alone help me have access to it).
I have been following a very strict diet for years (mostly raw/vegetables) which helps, and doing acupuncture, but i 'navigate' these waters completely alone, as my GP and the NHS in general completely discredited my efforts in this direction. I feel tired and alone in this journey, but sadly conventional levothyroxine never worked for me, on the contrary, makes me worse.
I would travel ANYWHERE in the UK or Europe to see a doctor that would have a more open, holistic approach to helping people like me, other than shoving levothyroxine down my throat and saying 'get on with it, there is nothing else to do."
If anyone could be so kind to share recommendations, I would appreciate very much.
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frasernina
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Thank you kindly, i really appreciate all the information given, which to be honest, is 1000x more detail and information i ever had form my GP or the (several) Endos i have seen in the past 7 years. I am still very much on the search for a holistic, open minded private Endo in the UK or Europe that would NOT simply say to me is levothyroxin or nothing. Any recommendations, much appreciated.
I’ve been in the same boat as you and totally disregarded by the nhs despite clear thyroid issues (hashimotos) very high antibody levels, recurrent shingles and many other associated symptoms and a partial thyroidectomy. I recommend you speak with The Thyroid Clinic based in Bristol/Bath. Georgina is a private GP who suffers with thyroid issues herself and I have been blown away by her knowledge and care. I’ve tried t3/levothyroxine and now NDT. I have routine 6 weekly bloods and a zoom appointment every 8 weeks. She also happens to be an expert on menopause so I now have all bases covered! Good luck!
If your diet is mostly raw and mostly vegetables I would suspect you are extremely deficient in protein. Also you are likely to be low in omega 3 fatty acids and fats generally, vitamin B12, vitamin A, D, E, and K (all the fat soluble vitamins). You might be low in calcium, iron and zinc too, and possibly iodine.
I would also expect to see poor conversion from T4 to T3.
Since you are hypothyroid your thyroid isn't producing enough T4 and T3 for your needs and your thyroid is unhealthy. Once the thyroid has been damaged by the immune system it can't be regenerated.
The best thing that might happen is that certain diets might reduce inflammation, and slow down the deterioration in your thyroid.
There is no replacement for either T4 or T3 in vegetables.
My diet is mostly a consequence of my very underactive thyroid, which lead to a severe IBS, low metabolism, bloating and all that jazz most of you know. Keepint the diet simple helps me cope with being functional during day hours, but it isant a choice really.
please ignor that first post I sent it by accident 😔 brain not working
although I can't help with your situation I can sympathize as I'm going through the same problem, I now know t4 is not good for me , I have stomach and bowl issues and find t4 really upsets them causing the meds not to work due to absorbtion issues.
i have fought with my endo and GP on this matter over the last 3 years, my endo recently tried me on liquid levo which unfortunately is giving me the same stomach and bowl issues, I'm dreading relaying this back to my GP/endo because I know I won't get much help from them. It's discussing how we are treated 😠 we should never be put into a position where we are either being given the wrong treatment or frightened to go to see our GP/endo on the matter, this is what I'm now going to have to do again..go back into the boxing ring with these so called professional people,who don't understand we are already feeling ill and sometimes don't have the strength to fight like this😔 I do hope the advice from our members have helped you to seek more information on your plight,best of luck🍀
There are a few podcasts you could check out, most of the experts do a consultation package, some will try to sell you their branded supplements. Here are a few.
Let’s Talk Thyroid - she also does consults
The thyroid debacle
Thyroid answers
Thursday thyroid talks
Other websites / experts who do consulting.
Thyroid Clinic - Bristol
Thyroidpharmacist - US but works online.
There are more.
So far I haven’t come across any that would advocate going without treatment. But perhaps they can help you source the appropriate meds and dose for you.
Yes, until recently. The prescription of levo is the only 'treatment' option ever given me. Raised from 25mg to 200mg in less than 3 years with ZERO effect, or rather, just made me worse and worse, including terrible IBS, headaches, allergies, bloating, depression. I stopped levo a few months ago as i simply could not take this anymore, and felt instantly better from the headache/allergy/ibs, but this is not sustainable, my metabolic rate is close to zero nowadays lol
So exactly how long have you been without any replacement thyroid hormone, and have you had your thyroid hormone blood levels tested since you stopped taking it?
aprox 6 months. Had blood tests done 3 months ago (3 months after stopping the levo), no changes. My GP couldnt explain why my T3/TSH and T4 kept getting worse but the minute i stopped taking levothyroxine instead of getting MUCH worse, they just remained at the same (poor) level. Diet, vitamin supplementation, folate, never mentioned, nor considered by my GP or the specialist I have been seeing (scotland) since 2019. at the same time I felt renewed hope when finding this group, my heart is sinking thinking the amount of time I lost with the wrong/uninterested doctors.
I've been reading the forum for a little while now but have only recently been prescribed Levothyroxine.
But I realise the importance of staying with the one brand. So when you were taking levo did you chop and change between different brands or did you settle on one?
I'm asking as some on the forum have problems with the excipients in some of the brand's; lactose, mannitol and acacia can cause digestive upset for some. Is it possible that some of your issues could have been caused by excipients?
is a very good point. Prescriptions are free in scotland, so I just took what i was given, and never had a particular brand to stick with. This is definitely something to discuss in my next appointment, thank you x
Come back with new post once you get vitamin D, folate, ferritin and B12 levels tested…..via GP or privately
Please add most recent thyroid results
If not tested since three months ago, get new test done
ALWAYS test thyroid levels early morning (and last dose levothyroxine 24 hours before test )
Many people find Levothyroxine brands are not interchangeable.
Many patients do NOT get on well with Teva brand of Levothyroxine.
Teva contains mannitol as a filler, which seems to be possible cause of problems. Teva is the only brand that makes 75mcg tablet. So if avoiding Teva for 75mcg dose ask for 25mcg to add to 50mcg or just extra 50mcg tablets to cut in half
But for some people (usually if lactose intolerant, Teva is by far the best option)
Glenmark or Aristo (100mcg only) are lactose free and mannitol free. May be difficult to track down Glenmark, not been available very long
Most easily available (and often most easily tolerated) are Mercury Pharma or Accord
Mercury Pharma make 25mcg, 50mcg and 100mcg tablets
Accord only make 50mcg and 100mcg tablets
Accord is also boxed as Almus via Boots, and Northstar 50mcg and 100mcg via Lloyds ....but Accord doesn’t make 25mcg tablets
If a patient reports persistent symptoms when switching between different levothyroxine tablet formulations, consider consistently prescribing a specific product known to be well tolerated by the patient. If symptoms or poor control of thyroid function persist (despite adhering to a specific product), consider prescribing levothyroxine in an oral solution formulation.
Physicians should: 1) alert patients that preparations may be switched at the pharmacy; 2) encourage patients to ask to remain on the same preparation at every pharmacy refill; and 3) make sure patients understand the need to have their TSH retested and the potential for dosing readjusted every time their LT4 preparation is switched (18).
Levothyroxine is an extremely fussy hormone and should always be taken on an empty stomach and then nothing apart from water for at least an hour after
Many people take Levothyroxine soon after waking, but it may be more convenient and perhaps more effective taken at bedtime
No other medication or supplements at same as Levothyroxine, leave at least 2 hour gap.
Some like iron, calcium, magnesium, HRT, omeprazole or vitamin D should be four hours away
(Time gap doesn't apply to Vitamin D mouth spray)
If you normally take levothyroxine at bedtime/in night ...adjust timings as follows prior to blood test
Similarly if normally splitting your levothyroxine, take whole daily dose 24 hours before test
If testing Monday morning, delay Saturday evening dose levothyroxine until Sunday morning. Delay Sunday evening dose levothyroxine until after blood test on Monday morning. Take Monday evening dose levothyroxine as per normal
NDT - usually Armour or Erfa doesn’t suit everyone
Adding SMALL dose T3 alongside levothyroxine is often more flexible and certainly more likely on NHS
All but impossible to get NDT on NHS
Increasingly likely to be prescribed T3 ……once optimal vitamin levels and levothyroxine dose fine tuned…..if Ft3 levels remain low
hi frasernina. The current position in Scotland in relation to unresolved symptoms on monotherapy is that the patient is entitled to a referral to endocrinology for a trial of t3/combination therapy. Endocrinology might knock back the referral but you can raise the issue with either your gp practice or with the health board. You have the option of going private. I can pm you if you want. Your gp may or not take over prescribing from a private endo. I raised complaint with my health board and I was subsequently referred and have begun a trial with t3. If you do a search on the Internet you'll find a document from a wee while ago that shows freedom of information request which shows a letter that went out to health boards with the advice re t3 trial. I can pm you the Dr I saw privately if you want. Good luck.
It's very easy to feel alone in this journey but I can assure you you're not. Both GP's and Endo's really are clueless as to help those of us that struggle on Levo. You've come to the right place though.
Armour is tricky here as has had such a bad press with doctors, it's also very expensive these days. I've gone for the option of Levo and adding some T3 which is only marginally more acceptable. Also I've been optimising my vitamin levels for a while before that. If key vitamin levels aren't optimal then you can't use your thyroid hormones properly.
People here get well if they do as recommended. I wish you luck.
Someone will correct me if I’ve got this wrong but I think I have read here about similar experiences where going from 200mcg Levo to zero is likely to bring on a thyroid crisis after a few months or so. This will make you very unwell. As I understand it there is a window when you feel great and then things go rapidly downhill.
As others have mentioned brand can make a difference, eg. I don’t get on with Accord but I can tolerate Teva. Lots of people can’t tolerate Teva, others have liquid Levo to avoid excipients. There are other options NDT and T3 depending on test results, endo, private, self sourced etc.
Splitting your dose can really help,E. g I take half in the morning half at night.
Optimising nutrition was a game changer for me, many of my symptoms were actually lactose and gluten intolerance and I had no idea.
Blood tests helped me discover my ferritin was low (started eating liver- not as bad as it seemed) my vitamin D was very low, supplements recommended here at doses 4x the GP recommendation have doubled my levels in 12 weeks, my hair is growing back.
These are common issues with Hashi’s, I highly recommend reading Izabella Wentz the thyroid pharmacist. Her 3 books and the advice her enabled me to have agency over my health, advocate for myself with NHS treatment with confidence.
But most of all invest in a full thyroid and vitamins blood test so you know where you are right now and can make a start on getting back on top of your condition. Everyone here is so friendly and kind and helpful, post your results, your worries and your questions, you will be amazed by how much knowledge there is to share 🦋💚🦋
Every post I read fills me up with hope. What you described is very similar to my journey, removing gluten, lactose and most refined sugars was crucial to my health, but the goitre an Hashimoto's are still, very much there. I was never given an option of 'brand' on levo, much the contrary, every time i brought up the subject that it was making me unwell, I was met with indifference, or worse, a silent attitude of 'you should be lucky to be getting it in the first place'. Maybe NHS england is different, as some people seem to have to pay for prescriptions, but NHS Scotland you get prescription free, and you get what you are given, and not a word. On the vitamin side, I always supplemented vitamin D, B12 and zinc for immune system reasons, didnt know (until today, thank you everyone) that those were crucial for the thyroid too. I may do another post - so more people can search for it - but one thing that helped me too (for a while only, then stopped) was putting a few drops of iodine on my throat, near the thyroid - something recommended by one of the nurses that regularly took my blood. Anyone tried this before?
the goitre an Hashimoto's are still, very much there.
And, the Hashi's always will be there. It's never going to go away no matter what you take, until your thyroid is completely destroyed. That's the way the disease works and there is no treatment for it. All one can do is replace the missing hormones that the thyroid would normally make.
I always supplemented vitamin D, B12 and zinc for immune system reasons
Doubtful any of those are going to do anything for your immune system. But, if taken correctly, could very well improve the way your body handles exogenous hormone.
Vitamin D should be taken with its cofactors: magnesium and vit K2-MK7. Vit D and magnesium - which is also important for the body's use of thyroid hormones - work together. So, if you don't take them together, the vit D will completely deplete your magnesium - which is probably low, anyway - most people are low in magnesium.
Taking vit d increases your absorption of calcium from food. The vit K2-MK7 makes sure this calcium goes into the teeth and bones, and doesn't build up in the soft tissues, causing problems.
B12 is just one of 8 B vitamins that all work together. So, just taking 1 isn't going to be very useful. They need to be kept balanced. Therefore, we always recommend a good B complex rather than just taking one isolated B vitamin.
However, it's important that B12 and folate are tested BEFORE starting supplementing, to see if you have Pernicious Anemia. That is especially important given that you have Hashi's, as they are both autoimmune diseases. So, if you could bear to, it would be a good idea to stop the B12 for several months and get tested before starting a B complex.
Zinc and copper need to be balanced. Excess zinc will reduce copper, and vice versa. The problem is that hypos usually have one deficient and the other too high. Both need testing before supplementing either, to see which one needs supplementing, if either of them do.
When you are hypo - especially with Hashi's - iodine is a very bad idea! It's true that iodine deficiency can cause hypothyroidism but it isn't the cause of Hashi's - quite the opposite, in fact, excess iodine can trigger Hashi's. Iodine is not something to play around with - it can cause thyroid cancer in excess - and you have already been getting extra iodine with the levo you've been taking. 100 mcg levo contains approx 65 mcg iodine.
It helped you for a while because in the beginning it can stimulate the thyroid to make more hormone. But after a while it becomes anti-thyroid, and will reduce the amount of hormone your thyroid makes. Iodine used to be used to treat Graves' before anti-thyroid drugs were invented.
So, all in all, not a good idea. Unfortunately, there is wide-spread belief, even in the medical community who should know better, that all you have to do with a thyroid problem is throw iodine at it. This is far from the truth.
thanks so much for your message. Yes for me 30 years on Levo - eventually on 300 mg.and still did nothing - I will give armour a try but just so worried about the cost .. thanks for letting me know your experience. I am working a lot in Greece so maybe I will be able to find armour there ? All the best Dee
Armour is NDT that contains all the thyroid hormones, they are synthetic hormones like levothyroxine which is T4, they are synthetic T3. If you are a poor converter then it's an option.
With you eating a mostly raw diet are you a vegan? I'm asking this as I've been plant based and eaten a vegan diet for many years. My attempts at trying to get a diagnosis have been a challenge despite being symptomatic for a long time.
I am now prescribed Levothyroxine but very recently after a partial thyroidectomy. I also have a multinodular goitre which unfortunately could have been caused by my diet being low in iodine as when I did an iodine test I was severely deficient. The endo I'm seeing hasn't been much help and I've been unable to get any guidance regarding supplementing iodine but was told it is not a good idea as it could complicate my situation further.
If you search on the forum for iodine you'll find lots of informative posts that strongly advise against taking iodine especially with a thyroid condition. So best avoided!
hi, did you never try just liothyronine? First off, I would follow the advice on here and get a full set of tests. Medichecks Advsnced a thyroid or Well woman are good. Knowing exactly where you tsh t4 and t3 levels are plus key vits and minerals will help you get the best advice from this lovely site.
You mentioned iodine, which is controversial in the area of thyroid treatment. However, as you describe your diet as mainly plant-based, I would definitely get your iodine levels checked, as it has recently been shown that iodine deficiency is increasing due to large numbers of people following a vegan/vegetarian diet, and this can have an adverse effect on those with Hashimoto's.
I have an underactive thyroid which GPs do not seem to know how to treat other than prescribing Levothyroxine, increasing and decreasing my dose following each blood test result. I am currently waiting for an appointment with an Endocrinologist. A few years ago I had a Nutritionist who prescribed GTA Forte for me, at that time I was on 125mg Levothyroxine, within weeks my medication was reduced to 25mg and I stayed with that dose for many years. I probably could have stopped the Levothyroxine but didn’t take the risk. Sadly, I moved to another county and no longer have that Nutritionist. The supplements were bought via a company called Nutrilink, you have to be referred to them by a medical professional to be able to order any of their supplements. Following Brexit, there were delays in stocks of these supplements and I wasn’t able to get them for a few months, now I am back up to 125mg Levothyroxine. I wasn’t sure whether to start taking them again due to the big gap, but aim to find another Nutritionist who will hopefully advise me. It worked for me. Might be worth you researching it too. Sue x
Not sure where you are currently based, but GTA Forte supplements are readily available otc from many sources in the UK. There is no need for a medical referral as they are purely nutritional supplements, with no prescription-based ingredients such as thyroxine. If these have helped you in the past, you can probably work out or preferably be tested for those elements in which you were deficient, and supplement those on an individual basis to improve your thyroid function as before. Many people take selenium, for instance, which is one of the ingredients, as it is generally recommended for thyroid support, but at advised dosages only, as too much can be toxic.
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