Only just joined and not sure where to begin as I feel as if I’m in shock a little and desperately trying to find out information. I had a phone call from the drs receptionist this afternoon to tell me I have hypothyroidism after some blood tests and needed to pick up a prescription which I would need to take long term! I was upset but managed to say that I felt I really needed to speak to a dr first to find out what exactly was wrong, what drug I was being asked to take and was that the best one for me. I’d been offered tablets by the dr according to receptionist which I can’t take so it has to be a liquid . I often have adverse reactions to simple drugs, I’m not on anything at all and try to avoid drugs unless absolutely necessary so am not happy about being asked to take anything long term. I don’t like additives and tend to eat largely organic. All I know is that I have an inflamed thyroid from a scan I had recently which was actually for something else that had since resolved! I don’t even know what blood tests I’ve had or what the results are ! I have long covid and wonder if this could be an issue and had covid again recently for the third time and wonder if this could cause thyroid issue , and maybe temporarily. I’ve not felt too brilliant recently. A couple of years ago my thyroid reading was out but resolved by six week check. These are all questions I need to ask a dr but with receptionist landing this on me unexpectedly I’ve not been able. I really wish it had been the dr that had imparted this info. Have arranged call tomorrow but ten minutes does not feel enough to settle my qualms. Therefore I am reaching out to you people’s please to help me understand what is happening? What should I do or take? Is there anything natural I can take instead? Sorry this is so long , but it all feels so deeply upsetting and I’d really appreciate some advice and perspective on this . Thank you 🙏
Phone-call from receptionist today: Only just... - Thyroid UK
Phone-call from receptionist today
Welcome to the group. If you could complete your profile it helps members understand your thyroid journey so far and be able to advise you better. Click on your image icon to start. Fill out the free text box at the top.
I'm sorry that you have found out this way about your hypothyroidism and hope your discussion with a GP tomorrow is informative enough. We are always here for odd questions that you might have.
You are legally entitled to a printed copy of your results, ask at GP reception. In England you can get the NHS app and ask for permission to see your blood results on that by asking at GP’s reception.
It sounds like you might have had failing thyroid output for quite a while if you had a raised TSH few years ago. This is what happens, your thyroid keeps trying harder and harder until it can no longer do so and you require treatment.
Levothyroxine isn't a drug as such, even though it is manufactured, it replaces your own thyroid hormone production. So its a hormone replacement and is identical to what your own body produces.
There is a 'natural' option although not available on the NHS and also quite expensive. That would be natural dessicated thyroid which is produced from the dried thyroid glands of pigs. It does also have some additives though and pigs have slightly different hormone requirements to humans so it doesn't suit everyone.
Its usual for people to begin treatment on Levothyroxine which is available in liquid form although that is very expensive and your GP might prefer you to try tablets initially.
Always take Levo on an empty stomach an hour away from food or caffeine containing drinks & other meds. Many people find taking it at bedtime works well for them.
When hypo we get low stomach acid which means we cannot absorb vitamins well from our food, regardless of a great diet. For thyroid hormone to work well we need OPTIMAL levels of vitamins. Have you recently or could you ask your GP to test levels of ferritin, folate, B12 & D3? Private tests are available, see link for companies offering private blood tests & discount codes, some offer a blood draw service at an extra cost.thyroiduk.org/testing/priva...
There is also a new company offering walk in (includes free blood draw) & mail order blood tests in London, Kent, Sussex & Surrey areas. Check to see if there is a blood test company near you. onedaytests.com/products/ul...
Only do private tests on a Monday or Tuesday to avoid postal delays.
Do you know if you had positive thyroid antibodies? Many with autoimmune thyroid disease aka Hashimoto's benefit from a gluten free diet. A smaller percentage of those also need to remove dairy from their diet to feel well. These are intolerances and will not show up on any blood test.
Thank you! Lots of useful information here. I have spoken with dr (at some length!) and I have rung back after considering what to do. He has agreed to do vitamin and mineral tests in four weeks and has left a printed copy of results at reception for me to collect. I do have antibodies therefore I understand this means I have Hashimoto’s, which currently I need to research as from your comments it appears diet can be helpful
Yes antibodies mean you have what the NHS call autoimmune hypothyroidism, otherwise known as hashimoto's. The NHS place zero importance on this but as you have gathered there are dietary changes that you can make that may well help you.
Try removing gluten first, then once you have the hang of that you can add in dairy free too nd see if it makes a differnce to how you feel.
Hopefully the chat with a GP has eased your mind somewhat. They really should do face to face with a GP to let someone know they have a lifelong condition!
Thank you. It is a little difficult trying to assimilate all this new information at once, a tad overwhelming to be honest , but also necessary and I’m sure it will settle some as I absorb it. I’ve always tried not to take anything and attempt to stay healthy and look at natural ways of dealing with any minor issues but it looks like I’ve met my nemesis here…however, I do believe there must be some things that can help so thanks for your advice. I shall research and try though I should imagine it’s not always easy to do.
The chat with GP did help , thanks , but did feel a little sorry for him as I was firing off many questions as I needed specific knowledge so as to understand and to feel comfortable with any next steps.
I did email the practice manager to suggest I would have had a more measured initial reaction with a GP appointment ! And hoping that no one else has to experience this in the future .
I have asked another admin the following question , and apologise as it’s not of vital importance, but am booked in for neck, shoulder and back massage. Is it ok to still have neck massage if thyroid issue please? I wouldn’t want to make anything worse
Keep reading around this group and you will soon learn a lot. Of course it will take time to understand everything.
Natural is always good but there are not always natural solutions that work. Diet can certainly benefit people with a thyroid condition though as can supplementing low/deficient vitamin levels.
I don't think your massage should cause any issues. Perhaps just ask them to avoid the thyroid area itself.
Thanks!
Hi Jaydee
Wondering what NDT additives you are speaking of? "It does also have some additives though"
I know there are excipients/fillers (as with any medication) but not aware of anything else. A bit worried, now.
That would depend which NDT brand you took. They are all slightly different and I was talking about excipients/fillers.
Standard compounded NDT simply has microcrystalline -as does every capsule medication.
Not quite clear what you are saying here:
What do you mean by "Standard compounded NDT"?
There are many capsule medicines which do not contain microcrystalline cellulose.
For example, Roma liothyronine capsules: mhraproducts4853.blob.core....
Please could you tell me if this is in liquid?
Microcrystalline cellulose is insoluble in water - so would not be used in liquid medicines.
You can find the details of all UK and many other medicines in my documents. You have to find the medicine then follow the links - they take you to the latest official versions of the Patient Information Leaflets which list ingredients section 6.1.
helvella's medicines documents (UK and Rest of the World) can be found here:
helvella - Thyroid Hormone Medicines
helvella has created, and tries to maintain, documents containing details of all thyroid hormone medicines in the UK and, in less detail, many others around the world.
This link takes you to a page which has direct links to the documents from Dropbox and Google Drive, and QR codes to make it easy to access from phones.
The UK document contains up-to-date versions of the Summary Matrix for tablets, oral solutions and liothyronine available in the UK.
The NDT prescribed by my doctor and made up in a compounding pharmacy is compounded with microcrystalline.
The link you provided is for T3.
Yes, it is liothyronine.
I was trying to understand what you meant by:
every capsule medication
And just offered one capsule medicine that does not contain microcrystalline cellulose.
When it was still legal for compounding pharmacies in the USA to make up capsules of desiccated thyroid, at least some offered a range of options such as calcium phosphate. But I don't know where you are or where you obtain your capsules from so cannot be more specific.
I was simply replying with my own experience to Jaydee1507's comment that NDT has additives.
As you've said, helvella, you've only taken levo.
Standard compounded NDT: parkcompounding.com/ndt/ Our Compounded Naturally Desiccated Thyroid
✓ No artificial colors or flavors
✓ No corn, peanut, soy, gluten, egg, fish/shellfish
✓ Gluten-free
✓ Contains Thyroid USP (desiccated porcine thyroid)
✓ Inactive ingredients: Microcrystalline cellulose (filler for capsules)
✓ Made by Park Compounding Pharmacy
Hi - you have come to the right place! But I'm sure the more experienced on the forum will want more info before being able to assist. As a start point you want to get hold of - and then post up here - your blood test result for the following TSH, FT4 and FT3 if they tested it. Also B12, ferritin , vit D and folate. If they tested antibodies post that result oo.Give a list of what symptoms you have- all this will help give a picture of how the forum can best assist you/point you in the right direction. Fill in as much as you can on your profile too. Once you post up this info someone will be along to give comment/advice. In the meantime use the search function to begin educating yourself- look for something like newly diagnosed or blood test results.
Thank you, I shall collect my print out of results tomorrow. I mentioned FT3 , which wasn’t tested this time (though someone has told me that as Hashimoto’s this won’t be necessary?) but Dr has said will test in four weeks along with vitamin and minerals.I shall do more research but exhausted myself yesterday trying to absorb everything all at once in my desperation to try and understand ! Am feeling a tad calmer and will now chip away more steadily (I hope!).
You did right joining the group. They all helped me and there are some very knowledgeable people who will help greatly. Its a long process getting to the right dose. I've been on levothyroxine for 2 years now and have just been upped to 125mcg. You may find you may have to be assertive with doctors which is hard at first when you don't know what you are on about . I've just recently had to demand another blood test which they were reluctant to do but it paid off as they found I needed an increase. Good luck . Hope you get sorted out.
Thank you! And to everyone that has responded , I have felt well supported and grateful that you all cared enough to respond in my hour of need . Sounds dramatic but is true. Also, the information I was given yesterday really helped me with my GP telephone consultation today. I did inform Dr that I had joined group and what suggestions had been made and he was happy to accommodate them which has helped make me feel part of the decision process and that anything else that may be out of kilter will be revealed.
Hi Benjipuss, welcome to the forum. 
Very tactless of them to pass on that information through a receptionist! You should have been told druing a consultation with your doctor. There are a lot of questions that need asking when first being confronted by this diagnosis, but there is rarely time. And doctors don't always have the answers, anyway.
So, what you are being prescribed - I imagine - is called Levothyroxine. It is not a drug - I must stress that. It is a hormone, the thyroid hormone T4, and we prefer to call it Thyroid Hormone Replacement, rather than a drug (although even some doctors, who should know better, call it a drug!).
Hypothyroidism means that your thyroid gland, for some reason (and there are many possible reasons) is no-longer able to make enough thyroid hormone to keep you well. Every single cell in your body needs thyroid hormone to function correctly. And, if there's not enough to go round, it can cause all sorts of problems and symptoms. So, we have to replace that hormone to be able to function.
Thyroids cannot regenerate, so if you have this diagnosis, there a 99.9% chance that it is for life. But, taking that little pill soon becomes a way of life. We do it automatically like we put the kettle on for a morning cup of tea. There are a few restrictions about how to take it, but we'll come to that later. Nothing to worry about. There are a hell of a lot of people out there with hypo, and you wouldn't even know it. They take their pills and get on with their lives.
You ask if it's the right one for you. Well, I'm afraid there's not much choice. No on the NHS, anyway. But, give it a try. It will more than likely work for you.
However, it's not right that you don't know which tests have been done. So, your next step - even before you see a doctor - is to get a print-out of those results. Ask the receptionist. It is your legal right to have one, she can't refuse. Ask firmly, but politely, when you go to pick up your prescription. Then, post the results and ranges on here, and we can explain them to you, and what they mean.
A couple of years ago my thyroid reading was out but resolved by six week check.
That sounds like you might have Autoimmune Thyroiditis, but impossible to say without seeing the numbers. Did you take anything for it?
I have long covid and wonder if this could be an issue and had covid again recently for the third time and wonder if this could cause thyroid issue , and maybe temporarily.
Any infection will have an effect on your thyroid. But, not enough to get you a diagnosis. It is very hard to get doctors to diagnose hypo, they don't like doing it. So, if you have been diagnosed then it will have nothing to do with covid or any other type of infection.
Is there anything natural I can take instead?
Depends on your definition of 'natural'. If you mean nutritional supplements, then no. You can only replace a hormone with a hormone. But levo is about as 'natural' as you can get. It may be synthetic but it is exactly the same chemical structure as the hormone made by your thyroid - it wouldn't work, otherwise.
I don't want to burden you with too much information in one go. It's a lot to take in, and you're still in shock. But, if you have any questions, please don't hesitate to ask them. There will always be someone here to answer. That's what we're here for. You are not alone, we are here.
Thank you! I do feel welcome with all the caring and informative responses . I did email the practice manager to inform them that I had been a tad traumatised in finding out the way I had . However, I had a long telephone consultation with my GP today and he could not have been more helpful with his explanations and further suggested tests mentioned on here . It is difficult initially to take in so much information at once whilst also accepting that I have something wrong that isn’t easily rectified in a week or so , so I exhausted myself yesterday trying to find solutions . I expect many others have felt the same and am grateful that yourself and others reached out to help. Dr has printed my results and will pick up tomorrow. He did say they were moderate rather than severe and had had advice from an endocrinologist. I didn’t take anything last time my thyroid did a dive as after six weeks it was ok again. I have been tempted to leave taking anything for four weeks which my GP was ok with , to see if anything settled as I do suffer from psoriasis and long covid. I had covid again in September and am recovering from an extremely unpleasant painful throat , which is unusual, and bad congestion so was concerned this may have aggravated my thyroid further. However, I do have antibodies so I understand this means my thyroid is not going to improve and will continue to get worse without treatment?
High antibodies means that the cause of your hypothyroidism is autoimmune thyroiditis - aka Hashi's.
With Hashi's, your immune system slowly destroys your thyroid, mistaking it for the enemy. Without thyroid hormone replacement, you will become more and more hypo and sick. But, taking thyroid hormone replacement is not going to stop the Hashi's, nor restore your thyroid. The disease has to run its course.
The thing with Hashi's is that after an attack, the dying thyroid cells will deposit their stock of hormone into the blood, causing levels to fluctuate. That is why you were hypo before, and then euthyroid again (I'm guessing here, because I haven't seen the numbers). And that pattern will repeat itself several times before the thyroid is finally destroyed. But, levels going back to normal does not mean that the Hashi's has been cured, or gone away, it's just a brief hiatus before you become hypo again.
Psoriasis is also an automune disease. The do tend to hunt in packs, I'm afraid. So, knowing you have psoriasis, it's not surprising to find out you also have Hashi's.
Thank you! Does this mean my thyroid is going to go totally kaput despite taking medication and trying to eat well? Is it only a matter of time? And what happens to the thyroid if it dies completely? Does it have to be surgically removed? Sorry about so many questions!
My psoriasis is relatively mild and I’ve never taken medication for it as on balance I decided it could cause more trouble than it was worth.
I'm afraid it does mean that, yes. The 'medication' in question - levo (the thyroid hormone T4) - is not medication in the normal sense of the word. It's not a drug. It doesn't cure anything. It just replaces the hormone your thyroid can no-longer make enough of to keep you alive. It is Thyroid Hormone Replacement, and, as I said it will not stop the Hashi's and it will not repair your damaged thyroid.
Whilst eating well is always a good idea for general health, it has little to no effect on thyroid status. Personally, I think too much emphesis is put on 'eating well', and I do not prescribe to the 'let food be your medicine' brigade. Many, many people have eaten very well, but died anyway. Sorry if that sounds a tad cynical but too many people are eating things they don't even like because they think it's 'healthy'. If you don't enjoy it, it's not 'healthy'. Besides, one man's healthy diet is another man's poison. The Israelies did experiments to discover that and concluded that we don't all need the same things, and a healthy died is a very personel affair.
But, I ramble on, sorry. Whilst you need all your nutrient levels to be optional for good thyroid function, and for your body to be able to efficiently use the hormone you're giving it, if your thyroid is being killed off by your immune system, nothing you can eat - or not eat - is going to stop it. Whilst, as some people think, some sort of nutrient - i.e. gluten or excess iodine - could be the trigger the Hashi's, once it has started it cannot be stopped.
Gluten-free diets can help symptoms because a lot of Hashi's people are gluten-sensitive, so stopping gluten relieves the symptoms. Same goes for dairy, and even sugar. But if you try these Free-from diets and they don't help, there's no point in insisting. Which brings me back to the point above: a healthy diet. I believe food should be enjoyed. A good meal boosts the moral, a strong moral boost the body's defense systems. A happier person is a healthier person. So don't eat stuff you don't like, not cut out stuff you do if it's not actively helping you feel better.
No, your thyroid doesn't have to be removed - not unless it swells up so much that it blocks your airways. And that's relatively rare. What happens to it depends on what type of Autoimmune Thyroiditis you have. There are two:
- with a goitre it's Hashi's
- without a goitre it's Ord's.
If it's Hashi's the thyroid just becomes a lump of scar tissue that can no-longer make hormone, so just sits there, doing nothing.
If it's Ord's, the thyroid is reduced to the size of a small pea, incapable of making hormone, and just sits there, doing nothing.
Never apologise for asking questions. That's what we're here for, to answer them.
I don't think there's much you can do about psorisis, anyway, is there? I have it - mildly, I suppose, and in places that don't show. So, when it itches I just scratch it or smear some cortisol cream on it and it calms down.
Thank you. And I accept that everyone responds differently to diet and try and eat well (mostly!) to feel healthy. So this is all a bit of a shock .
If Hashi’s is autoimmune does that mean antihistamine would help to dampen down the reaction? I have found this helpful when Long Covid has rarely been particularly troublesome .
Also, if my recent covid infection and also horrendous sore throat and congestion for a couple of weeks have aggravated my thyroid , and Long Covid, then there is a possibility it could settle again without the need for medication? So am I better waiting a few weeks to be tested again before taking anything just in case?
If you have a goitre, which I don’t quite know what it is (am trying not to research too much for a bit as don’t want to frighten myself) , does this go when the medication stabilises everything?
Lots of questions, sorry, but am grateful as this is helping me to understand and hopefully more comfortably accept .
There is a drug now for psoriasis that I’ve been told clears it, but you have to have liver and kidney function checked regularly . I’d personally rather have the psoriasis than risk damaging my organs. I used to find carbodome cream cleared it (coal tar) but it was discontinued , rather annoyingly!
If Hashi’s is autoimmune does that mean antihistamine would help to dampen down the reaction?
No, it's not an allergy.
Also, if my recent covid infection and also horrendous sore throat and congestion for a couple of weeks have aggravated my thyroid , and Long Covid, then there is a possibility it could settle again without the need for medication?
I'm afraid not, no. You have high antibodies, so that means that your thyroid has been partially destroyed by your immune system. Destroyed enough for you to need Thyroid Hormone Replacement - not medication - to be well. That has nothing to do with covid. Your thyroid was more than likely under-attack long before covid struck. But, as it happens slowly, and the adrenals take up the slack, we don't always notice straight away.
And, as I said, it's not 'medication' in the normal sense of that word. It doesn't cure of repair anything. It just replaces the hormone your thyroid can no-longer make enough of to keep you well.
So am I better waiting a few weeks to be tested again before taking anything just in case?
No. Testing again in a few weeks might give you different results, but that is because levels fluctuate with Hashi's. But the general trend is down - down to 100% hypo. And in the meantime, whilst waiting, your body is suffering from lack of thyroid hormones. Lack of T3 will affect your brain, heart, lungs, kidneys, liver, everything! Why take the risk of waiting?
If you have a goitre does this go when the medication stabilises everything?
A goitre is a swollen thyroid, a lump in front of your neck. It can be a small lump or it can fill the space between your chin and your collar-bone - in which case I think you'd know what it was! But a small lump is not always visible to the human eye.
I cannot say for certain if it will go down, because I've never had one - I have Ord's. But even if it does, eventually, it will take a long time.
There is a drug now for psoriasis that I’ve been told clears it
Thank you for that info, but to get a drug you have to see a doctor, and I don't 'do' doctors! 🤣🤣🤣
Thank you for all your info! I’m intrigued though by your last comment . How do you get your thyroid replacement without a dr or do you only see dr for that ?! One of my brood is a dr who has total faith in drugs . There are times when I’m super grateful for modern medicine but sometimes I have found natural remedies have worked , and I often have odd reactions and am quite sensitive to things .
I buy it on-line. As do an awful lot of people when doctors refuse to prescribe enough, or the right type of THR, to make them well.
Most doctors seem to have total faither in drugs but that's probably due to their education. But Thyroid Hormone Replacment is not 'drugs'. I cannot stress that enough It is hormones - thyroid hormone - not drugs.
As for 'natural remedies', depends which natural remedies you're referring too, and for which ailments. If your thyroid is failing, there is no 'natural remedy' on earth that will stop it, cure it, or regenerate a damamged thyroid. And, you can only replace a hormone with a hormone - not a vitamin or a herbal tincture or whatever - and you cannot live without hormones, they are the basis of all life.
thank you! What is the right type of THR? How can you be sure an online order is what it says it is? And why does a dr refuse to prescribe enough? I’m still waiting for my chemist to get back to me to say they’ve got my order! I’m still trying to digest what all this means so apologise I I’m appearing a bit reluctant to accept some bits
What is the right type of THR?
That varies from person to person, it's a very individual thing. The vast majority of people do very well on levo mono-therapy. I didn't. Nor did I do any better on NDT (Natural Dessicated Thyroid, made from pig thyroid). I'm can only tolerate T3 mono-therapy.
How can you be sure an online order is what it says it is?
Word is passed from hypo to hypo about where to buy these things. You won't find them just by googling. And you know it's what it says it is because it does what it's supposed to do.
And why does a dr refuse to prescribe enough?
For a multitude of reasons, which basically all come down to ignorance. Doctors are terrified of all hormones, but especially T3. They don't know what it is, what it does - and, more importantly, what it doesn't do. Mention DHEA (an adrenal hormone) to most doctors and they will practically cross themselves and get out the garlic! They have an illogical fear of it all, but that's because of their lack of education, not because there is anything intrinsically wrong with hormones. We need them to live.
They believe that a low TSH is going to cause heart failure and osteoporosis - or both at the same time! And taking any amount of T3 will suppress the TSH. (Sorry, it gets complicated!) So, they're always on at you to reduce your dose, and reduce your dose, and if you do as they say, you end up on a dose that's not worth taking! I need 75 mcg T3 a day. So, my TSH and FT4 are non-existant. And that really puts the fear of god into them! One endo even went so far as to say I must have a brain tumour! lol But, it's just ignorance.
The problem is not so bad with T4 (levo), but we have to be prepared to stand our ground and insist on the dose we know we need.
I’m still trying to digest what all this means so apologise I I’m appearing a bit reluctant to accept some bits
There's a lot to digest. Take it easy. One step at a time. Don't try and swallow it whole in one go! You wouldn't eat an apple like that, you'd take one bite, chew it and swallow. So, do the same with all this info you're being flooded with. One bite, digest it and then come back for more. You'll soon get through it and be an expert!
Thanks, again only just noted your message. On initial convo with dr I’d requested T3 testing on my next bloods and he’d said yes. However, when booking it wasn’t on the list in reception. I’ve requested again and had n call so assume is through this time.
Your doctor should speak to you and explain what is happening. The good news is that if you have problems taking tablets you can simply dissolve the tablets in some water, give them a stir and swallow, taking them with fruit juice is even better. There is liquid thyroxine but it is incredibly expensive and rarely needed, dissolving the tablets will get around most problems.
Hi Jim. My understanding is that levothyroxine should be taken on an empty tummy with water, nothing else. So surely no orange juice should be added? 😊
I take mine with the Volvic Summer Fruits water and that works fine.
I take it with breakfast and there's no problem. An empty stomach is recommended because some acidity is needed to break down the tablet and food will reduce acidity a little. Fruit juice is acidic and so helps with levothyroxine absorption. It was recommended by David Halsall, clinical scientist at Addenbrooke's in. presentation to the BTF.
Interesting Jim. Never heard of it before. But if you suffer with low stomach acid and orange juice gives the acidity you need what a great solution. 😊
Taking it with breakfast will slow uptake. But if you do the same thing every time....... The advice though is take with water on an empty tummy.
You’ve had lots of good advice and can I suggest that before you speak to your doctor work out in your head what you want to know and out a list of all the questions you want to ask, otherwise you are bound to forget something.
Thank you! Good advice and followed with a small list of questions , some of which were gleaned from this group as it is a little difficult to know what to ask initially whilst still trying to understand fully what is happening. I did feel listened to , understand a little more and am having the further tests that have been suggested. I also feel that I’m now part of the decision process rather than just a sheet of results to be fixed (although that is necessary too!)
That’s what I always say - ask questions and be part of your treatment - don’t just sit back and have things done to you - although I think some doctors would prefer it to be like that 😉
hi sorry this an nice thing it should be a g p if you have under active medication I s for life you can get thyroxine in liquid your prescription s are free you get a exemption form from g p good luck x
Just wanted to add that I've been taking levo for 4-5 years now. I have hashimotos which most people with an underactive thyroid have. I also found I was vitamin D deficient (even in Summer).
Hasis is this is why my thyroid is not producing enough hormones.
I found that alot of the niggling symptoms, I had, which I thought was the menopause (I'm in my 50s) but they were thyroid disease. The thyroid, pituitary etc are all part of your system that manages hormones.
Sometimes it takes a couple of tries to get the dose right. They should start you on 50 or 75, then 6 weekly blood tests until up to you optimal dose. I'm on 125 x 6 days, 100 x 1 day and am 72 kg. Make sure your blood tests are fasting, morning, before your dose.
I literally take the hormone dose and vitamin D (plus K), at separate times and go about my day.
This is something you must treat, don't be tempted to ignore it. Often hashis is genetic but I'm the first in my family to have it, so I'm proof that its not always.
When you go to the doctors, ask for a medical exemption certificate (so all your prescriptions are free).
This forum is amazing, get your test results and post them - and potentially invest in a full thyroid test from say, Medichecks to confirm your vitamins levels.
Thank you! I have been told I have Hashimoto’s today as I have antibodies. I do get and have had odd symptoms but it appears that long covid and H are similar so is a little bit difficult to untangle things currently . Dr has suggested to start on 50. I am also the first in my family to have this. My vitamin and minerals will be checked along with my next bloods. Please may I ask why it is important to be tested whilst fasting and before taking medicine?
Just because if you have your thyroid results later in the day or after your dose, the tsh will be higher and therefore it looks like you need less levo. Personally, I do better at well under 1.
The test ends up being fasting as you shouldn't have food or caffeine with your dose or until 40 mins after (This is what's on the packet), however some people on the thread appear to have fruit juice.
Thank you
because if you have your thyroid results later in the day or after your dose, the tsh will be higher and therefore it looks like you need less levo.
Not quite, no.
If you have your blood draw later in the day, the TSH will be lower.
Taking your levo before the blood draw will not affect TSH, it will only affect the FT4 - if that is even tested.
If your TSH is higher, you need more levo, not less.
As you have issues taking tablets you can request liquid levothyroxine. I get this not because I can’t take tablets but because I have ban absorption issue with levo tablets. So I’d request liquid form and it’s much better than tablet form I’ve been informed. It has less excipients in and you can tailor your dose much easier than with tablets. It was very poor of the GP to get a receptionist to call you with this information especially as they are not medically trained. The GP should inform you of your diagnosis, medication and treatment going forward. You’ll need to have frequent blood tests for the rest of your life to check your levels and medication levels too. You need a full thyroid test of TSH, T4 and importantly T3. TSH needs to be around 1.00 when medicated correctly and T4 and T3 optimal to reach a TSH of 1.00. Most GP’s know nothing about the thyroid in any depth they just follow NHS range figures which are set too wide. Also get your vitamins checked as these are important for good health B12, ferritin, folate and vit D. Get your cholesterol checked frequently too as thyroid can effect cholesterol if not medicated well. So many things to think about I know but you’ll learn a lot from this forum for sure. Keep an eye on those thyroid levels as if they go wrong you’ll get symptoms.
So I’d request liquid form and it’s much better than tablet form I’ve been informed. It has less excipients in and you can tailor your dose much easier than with tablets.
Just to clarify, levothyroxine oral solutions contain a much greater quantity of excipients than do tablets.
A standard medicine spoon of 5 millilitres will be slightly over 5 grams.
A tablet will be in the range 50 to 100 or so milligrams.
So the quantity in one dose of liquid is in the region of fifty times a single tablet.
One liquid (Advanz) says:
The other ingredients are glycerol, citric acid monohydrate, sodium methyl parahydroxybenzoate (E219), sodium hydroxide and purified water.
(One excipient alone dominates. Glycerol: 3,780mg per 5ml dose.)
One tablet (Vencamil) says:
The other ingredients are microcrystalline cellulose, maize starch, heavy magnesium oxide, sodium starch glycolate type A and magnesium stearate.
That is, both products contain five excipients! These numbers vary depending which products you look at. And you might argue that purified water should be crossed off the list.
I'm making this reply to try to get the message out that (in my opinion) this claim about excipients, while frequently repeated, doesn't really bear scrutiny.
I was going on what my private only professor had told me when he prescribed it. I find it much more tolerant than tablets for absorption and dosing too. I’m Mercury Pharma brand previously Wockhardt which is not bring manufactured anymore sadly.
I don't see where they are getting their ideas from!
It is as if they are thinking of these liquids as being the same as Tirosint. (Which are gelatin, glycerol and water only.) Even then, the absolute quantity is going to be greater than a tablet.
Am very happy that anyone gets what works best for them. Yes - there is quite a bit of research suggesting gels and liquids are better absorbed.
Thank you! I found some research last night (in my panic!) that suggested liquid is absorbed better than tablets and has less additives , though it appears it depends which one you choose. I can have odd reactions to normal medicine at the best of times (not that I ever have much previously) but GP is aware of this so am hoping I can have something as additive free as possible; particularly if taken for life (which I’m still struggling with a little). GP was marvellous today so receptionist blip is forgiven , though I made practice manager aware to try and prevent any other patient being forced in to an unnecessary tail spin. T3 and vitamins are being checked on next lot of tests. Forgot to mention cholesterol, but will do!
Forget cholesterol! It's the least of your worries. If your FT3 is low then your cholesterol is going to be high. But it doesn't matter because cholesterol is not the problem doctors make it out to be. It does not cause heart attacks or strokes or anything else nasty. It is a very important nutrient, and you can't live without it.
The problem is, if your cholesterol is tested and found to be high - as it probably will be - your doctor is going to want you to take statins because he is highly unlikely to know of the thyroid/cholesterol connection. Taking statins is not only a bad idea if you're hypo, because there will be more side-effects, but it is also likely to reduce your cholesterol by too much. As I said, you cannot live without cholesterol because your body is made of it, and you need it for regeneration and repairs. So, having a cholesterol level that is too low will put you in danger of a heart attack! Best to let sleeping dogs lie.
If you're looking at additives. Some one posted this. Unfortunately, I didn't keep the thread but did take a screen shot of the table.
I apologise that I'm not able to credit this but it is really useful. So if you want to try tablets, you might want to use this yo help you.
I don't care about credit! But I am concerned that matrix is out of date!
It is always best to go to my blog and download the latest version of the document(s). Check the date (on the front page) - I update these documents pretty regularly so if it is months old, it is probably out of date.
Also, let me know of anything out of date or wrong or missing. Please!
helvella's medicines documents (UK and Rest of the World) can be found here:
helvella - Thyroid Hormone Medicines
helvella has created, and tries to maintain, documents containing details of all thyroid hormone medicines in the UK and, in less detail, many others around the world.
This link takes you to a page which has direct links to the documents from Dropbox and Google Drive, and QR codes to make it easy to access from phones.
The UK document contains up-to-date versions of the Summary Matrix for tablets, oral solutions and liothyronine available in the UK.
helvella.blogspot.com/p/hel...
Thank you so much for posting this. I'm glad you replied as this is really useful.
Thank you. It’s the liquid medication I am looking at . I notice you are an admin and this is rather a more trivial query but is worrying me a little. I’m booked in for a neck, shoulder and back massage tomorrow (I know, but it is Christmas! And I need it after the events of this week!) Is it ok for me still to have the neck massage or is that unwise with an inflamed thyroid?
Thank you. I’m hoping to be prescribed a liquid
Hi Benjipuss, two comments that might be of interest to you. When first diagnosed as hypothyroid (Hashimoto's) my GP was very supportive of me trying 'natural' methods but they didn't help. I would avoid iodine which is touted as fantastic and natural but for some of us makes us worse. The second comment is that having covid worsens my thyroid symptoms for months so I think this is likely to be having an effect in your case too. Good luck on your journey.
Thank you, this is worth knowing! I’m sure having long covid and catching covid for the third time (from daughter and family) has aggravated me hugely. Before this I was in fine fettle and best I’d been for ages . I do wonder if I might be better avoiding medication for a while to see if things settle again or do I begin medication for a lifetime? It’s also confusing because many of the symptoms are so similar and no longer know which symptom is attributable to which condition!
Just because you start taking the 'medication' - thyroid hormone replacement - doesn't mean you have to take it for life. You take it for life because you have need of it for life. You have Hashi's, so things are going to get worse, not better. Avoiding THR for the present is not going to help in the future. The Hashi's will still be there.
You probably didn't have any symptoms because the adrenals were taking up the slack. But the adrenals can't do that forever. There's going to come a time when they can no-longer cope, and then you will crash.
There's really no need to be afraid of levo. It's not a drug. It's not going to harm you. It's going to help.
Thank you! Does taking levo slow the process of the thyroid decaying ?
Not as far as I know, no. There is a theory - but it's only a theory, no proof - that taking enough thyroid hormone replacement to suppress the TSH will slow down the process/reduce the number of attacks. But finding a doctor that will allow you to do that is not easy, because they are terrified of a suppressed TSH!
Thank you! Why are drs terrified of a suppressed TSH?! And what is TSH? This is beginning to make me feel a little apprehensive to say the least
Yes, I was afraid of that. But, forewarned is forearmed, as they say.
OK, so the first thing you have to know is that doctors get an absolutely terrible education on all things hormonal. The endocrine system (hormones etc.) is vast, with many glands and many, many hormones. The thyroid is just one of these hormone-producing glands. But, in all the time they spend in med school, they only spend one afternoon on the whole endocrine system - or something rediculous like that - opinions vary. In any case, it's not enough time to go into all the details of the thyroid, its failings and its treatments, let alone all the other glands. So, they get a reducted version...
TSH - Thyroid Stimulating Hormone. This is a pituitary hormone. The pituitary controls the thyroid, and tells it when to make more thyroid hormone by increasing production of TSH. Which is why, when you are hypo, and your thyroid hormones - T4 and T3 - are low, the TSH is high.
TSH has only two jobs: To stimulate the thyroid to make more hormone, and to stimulate the conversion of T4 to T3. That's all.
But, due to a lot of confusion and misunderstandings, in med school they teach doctors that TSH is necessary for healthy bones and hearts. So, doctors believe that if TSH is suppressed, it's going to cause heart faillure and osteoporosis. It isn't. But, because they 'learnt' it in med school, that's what they believe. And no proof to the contrary will convince them otherwise. So, if your labs come back with a low TSH, they are terrified that you're going to drop dead in front of them from a heart attack and your bones are going to crumble in front of their eyes! I'm sure you can see how illogical that is. lol
By the way, when I talk about doctors, I generalise. The are not all the same, of course. There are some good, knowledgeable and intelligents ones. But they're just few and far between!
By the way again, one very important tip: when you have a blood test, always, always get a print-out of the results. It is very important that you know exactly what was tested and what the results were. We can teach you to understand them all. And, keep your own records, noting on the back of each page what you were taking at that time, and how you felt. This will be invaluble in time to come.
Some surgeries do have on-line results that you can consult, but it's not the same. They can change them - or delete them - at any time, and you might not even know. It cannot beat a good, solid paper copy. And, it is your legal right to have one.
Thanks, for some reason ( doolally brain fog) I have only just noted this! Sorry! I have got a paper copy of results . I understand to keep note of symptoms as they fluctuate and I will forget.
Hallo again Benjipuss, me too, caught covid for the third time from family, however, to cheer you, I was a little knocked back by first infection, very unwell with the second and remained very tired until, 9 months later, I caught it for a third time and that seemed to trigger my body to heal. I slowly recovered but reached a state of being much better now. I agree, it is confusing, I can't tell now if I need higher dose of medication or if it's covid 'leftovers' and just a matter of time. In your place I would try reducing Hashi's flare-ups by keeping inflammation low (to avoid the immune response) and perhaps the exclusion diets (I am vegan and was gluten free for about 2 years but didn't notice a difference though for others it seems life-changing) to see if you can continue without thyroid meds and well. Sorry, I'm giving unasked for advice again! Ignore me, and, best of luck.
Thank you! Advice is so welcome as I’m trying to gather as many ‘facts’ or ‘opinions’ as possible so please don’t apologise. From your answer is it possible for some people to avoid medication by diet alone without a worsening of symptoms? I know we are all different and what may work for one may not, for another . I really don’t want to make anything worse
I don't know the answer to whether some people avoid medication by diet alone without worsening, however, since you have caught yours so early and already know that it's an autoimmune condition, I would think you might well be able to at least slow down progression if not halt it. I'm not a medical professional though. Someone I know with Hashi's who does an extraordinary high energy job read the book "Why do I Still have Thyroid Symptoms" and using that remains well on a little medication and avoiding gluten. Best of luck
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