NDT does this medication contain fillers🤔

[birkie]

Hi everyone ❤️

I've been reading up on NDT, and trying to find out what if any fillers are added to the tables... I started on 12.5 vencamil on Thursday this week.

As many members might know I've been off my thyroid medication since January 31st ( teva t4 gastric issues amongst other issues with t4/T3)

Since coming off the T4 medication and T3 medication all gastric symptoms went, along with the bad headaches, metalic taste in mouth, fast heart beat, sweating ( although when my calcium is raised my heart does jump up, but there is a difference, the beat I get whilst on T4, T3 is like when I was hyperthyroid, and the beat when my calcium is up is different) my body pain is less, I would say apart from feeling a little more tired I felt better.

The only remaining symptoms which as persisted whilst on and off thyroid medication is the vibrations from my pubic bone down my legs and into my feet, this seems to have gotten worse since I first noticed it in 2020.

I've been on the T4 vencamil since Thursday this week at 12.5 micrograms, on Friday I had a slight gripe on the left side of my bowle, then right after my tea I went to the toilet, although it wasn't diarrhea it was very soft, I thought "ho no please don't let it be these T4 tables" 😭.

So last night I was sweating for England with a fast heart beat , this morning I woke with a slight bad headache, and yes a distinct metallic taste in my mouth, although not as strong... But I know the more T4 I take the worst this will become, no doubt along with the other side effects (gastric ect) and I haven't even managed to reach 50mg yet😔 it's not looking good, I know the signs 🤦 and some might say you haven't been on it long enough, but this is what it starts like.

I'm due to see the endo at the end of June, obviously I'm going to have to do the same as I always have, and bite the bullet and just put up with the side effects until the end of June, I'm also having my thyroid bloods done at the end of may, before I see the endo but if they are bad (my T3 always is on T4) I know the gp will just say you need to increase the T4, not taking into account I actually can't because of the intolorences to it🤦 I know the endo will probably say the same thing🤦.

I want this endo to listen to me, I'm going armed with all thyroid paperwork and parathyroid paperwork, because I feel I have so much going on with my health at the moment, so back to my first question... Are there any fillers in NDT because I actually want to put this to the endo, I've struggled since 2019 with all synthetic thyroid medication and I've just about reached the end of my rope with it all😔

My results off thyroid medication were

TSH... 69.47...RANGE... 0.30...4.50

T3..2.2..RANGE... 3.10..6.80

T4..RANGE.. 11.00...22.00.....😢

[radd]

Oh, you poor thing birkie 🤗,

Apart for thyroid hormones, Armour Thyroid contains calcium stearate, dextrose, microcrystalline cellulose, sodium starch glycolate and opadry white.

I don't know about the excipients of other NDT's but hopefully members medicating these will be available to advise.

[helvella in reply to radd]

The excipients of all desiccated thyroid products I know exist are listed in my world desiccated thyroid document - except where I have been unable to identify official information.

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. There is now a specific world desiccated thyroid document.

I highly recommend viewing on a computer screen, or a decent sized tablet, rather than a phone. Even I find it less than satisfactory trying to view them on my phone.

helvella - Thyroid Hormone Medicines - UK

The UK document contains up-to-date versions of the Summary Matrixes for levothyroxine tablets, oral solutions and also liothyronine available in the UK. Includes descriptions of tablet markings which allow identification. Latest updates include all declared ingredients for all UK products and links to Patient Information Leaflets, etc.

dropbox.com/s/bo2jzxucgp9hl...

helvella - World Desiccated Thyroid

Contains details of all known desiccated thyroid products.

helvella - Thyroid Hormone Medicines - RotW

Contains details of all levothyroxine, liothyronine and combination products - excluding desiccated thyroid products. Details available vary by country and manufacturer.

The link below takes you to a blog page which has direct links to the documents from Dropbox and QR codes to make it easy to access from phones. You will have to scroll down or up to find the link to the document you want.

helvella.blogspot.com/p/hel...

[radd in reply to helvella]

Wow, this is excellent White Saddle. I really should pay you more attention 👏.

Not sure about your pasta though! 😁.

--------------------------------------------------------------------------------------------

Edit - helvella

Why isn't this important information pinned, as relevant to a vast majority of members enquires?

[helvella in reply to radd]

Because it could be seen to be in conflict with the official TUK medications list:

thyroiduk.org/if-you-are-hy...

And I probably post a link equivalent to almost every day - often more than once.

Pinned posts seem to rarely be noticed by members without them being pointed out. Especially those who access on smaller screen devices.

Plus, my blog has numerous other things of possible interest.

[radd in reply to helvella]

hel,

Other admin & members write things in conflict with ThyroidUK advice, even if unknowingly. And does it matter when the forum is simply offering patient to patient advice/opinions, and you make no claim to anything other?

I (& probably others) never remember where to find your documents, and many won’t know of their existence. They are so rich in information not to be pinned perhaps under your blogger heading? Could you not make further disclaimers, as surely it’s better to have all advice to then be allowed informed choice?

[healthkiwi]

Hate to be depressing, but if you're under an NHS endo the chances of being newly prescribed an NDT in the UK are close to 0 nowadays. If you read some of the recent postings on site, you will see that even people who'd been on NHS-prescribed NDTs for years are now being told their local CCG is not permitting use of NDT, and patients are being forced back onto Levo.Unbelievable, at a time when the evidence is starting to stack up that NDT or at least Levo+Lio combined has real benefits for 10-20% of patients.

Sorry to say, you may be forced to take matters into your own hands, and find a private endo/ prescriber, and pay for your own meds. Be prepared -it's not a cheap or easy option, but your health may require it. Wishing you good luck, and a solution that gets you feeling well.

[birkie in reply to healthkiwi]

Hi healthkiwi❤️

Unfortunately yes I'm awear it will probably be a no from the endo, I tried one up in my area and she flatly refused to pescribe it, knowing my thyroid level of T3 on T4 medication is dire, it was her who took me off T4 in the first place after I tried it twice and my T3 was on the floor.

She did pescribe T3 which still gave me the gastric issues ect but it restored my T3 better than T4 ever did, unfortunately she's a nasty endocrinologist and she wrote in her report she wishes not to have me as a patient as she can't do anything for me, and I've to find another endocrinologist (nhs) as I'm on disability and can't afford to go private.

But surely the NHS can't keep you on a drug that does not work for you? or that you have really bad intolorences to... Its like saying to a person with a peanut allergy.. "I'm sorry but this is the only medication we can offer you on the NHS.. Its a real shame its got peanut extract in it but good luck" 🤷

It's not like I haven't given these medications a good go.. I have tried since 2019.. Also I couldn't stomach the anti thyroid drug they put me on I had server diarrhea and vomiting, my gp wouldn't listen to me and insisted I carry on with the tablets, I went into thyroid storm and was rushed into hospital for 15 days, as the anti thyroid medication was just coming right threw me or back up, just like the thyroid medication 🤦.

I really don't know where to turn for help anymore, the 7wks off the synthetic T4 as been heaven gastric wise ect, apart from feeling a bit more tied.

I have heard you can have it injected🤷 although I don't know if that's just something in the pipeline, then there is rosway labs who make thyroid medication without fillers, but no doubt expensive, I probably could try a months supply to see how I am but fear I could not afford it every month😢

[tattybogle]

slightly 'off the wall' suggestion birkie:

If endo / GP think it's safe for you to try this , it may be possible to take a weeks worth of Levo on one day a week .. and no levo the other days .

just maybe , this might just give you a regular few days each weeks of no gastric issues . which would at least make it possible to plan outings etc around those days. (and plan to be at home for the days that you expect to have gut effects )

once a week dosing is obviously not ideal as it's preferable to have more even levels of T4 rather than a massive lump all in one go , but it would at least stop you going seriously hypo , and hopefully mean you weren't dealing with gut issues on every single day.

They use this method of once a week dosing to manage some patients won't take levo regularly.... so it is medically sanctioned . eg for someone who needed 100mcg / day they would prescribe 700mcg taken on a monday , rather than 100mcg / day.

seems to me it's time to face the possibility that any type of thyroid hormone replacement is going to give you some gut issues .. and if that's the case you need to be pragmatic and find some way to take them anyway.

I suggest you give it some thought / discuss with your prescribers

[birkie in reply to tattybogle]

Hi tattybogle ❤️

I've never heard of that method, but would taking one weeks worth in one day... ie I'm trying to get to 50mg on T4, I've never achieve this because of the side effects... So (7) 50mg tablets in one day 🤔 would that not make me over dose on it... Just curious 🤷 because that would be 350mg in one day, or as now 12.5mg (7) tablets in one day .

Jesus I'm bad enough just taking the 12.5mg, I thought it was best that the body as a steady dose, taken at the same time everyday, that's what I'm doing atm..

Obviously I'm going to discuss all this with the endo in June, and take all the nasty diarrhea photos (on my phone) and if in the next few days I develop the diarrhea I'll be taking more photos, let's hope he's had his lunch😁 and all my awful thyroid bloods results on T4/T3.

And I'm going to also explain how this is now effecting my mental health, as I really just want to feel well again and mention my diagnosis of primary hyperparathyroidism, which as again been put on the back burner thanks to the nhs😡

[tattybogle in reply to birkie]

i'm advocating caution here ..... cos we know you are currently very hypo .

if i had your history and wanted to try this , i'd be cautious and try no more than maybe 50mcg one day/ then nothing for 7 .... just to see how you reacted to that before trying any more . That would hopefully give you an idea of whether you can expect a few days a week of normal guts.

ie. if it gives you 3/4 days of dodgy guts followed by 3/4 days of 'ok' , then it might be worth persuing to see what happens with higher dose ..... but if gut issues last all week anyway, then it's a non starter .

but yes , if 50mcg / day is the dose you need , then the ultimate aim would be to take eg 350cmg / monday and nothing tues -sat.

(obviously the actual dose would depend on how much T4 you actually need ... if you need 50mcg day then it would be 350mcg one day a week ...... if you need 75mcg a day then it's 525mcg one day a week .... if you need 100mcg then it's 700mcg one day a week)

there was someone on here who has tried 10 days worth in one go under medical supervison and it didn't blow her head off (it was done as part of an absorption test to see if she was absorbing levo ~ they use absorption tests so they can actually observe the patient taking the levo, to rule out 'patient not taking it regularly' as a cause for having high TSH /low T4 when supposedly on a decent dose of levo ) ..... they got her to take about 10 days worth in one go ... which in her case was i think 1000mcg .. tested TSH before the test , test it again a few days after the test to see of TSH has lowered and fT4 gone up as expected , if it hasn't they know there is an absorption problem .

can't remember the name of that person now .... will add it later if it comes back to me ... but it may have been one of those people who left and deleted all their posts.

[birkie in reply to tattybogle]

Funny you should mention absorbtion because that's what my endo put in her report... This lady as an absorbtion problem on T4, I am prescribing T3 for a trial to see if her T3 increases.My T3 did, but unfortunately the gastric issues returned after 4/5 days but I persisted on it and my T3 was around 4, to 4.7 on bloods, not great but in range T4 was 2.2 but to be expected, TSH varied because of me passing it through, then my bloods came back bad,... coupled with the diarrhea photos gp sent me back to this endo who as I said took me off T3 blaming it on all my side effects.. Even when I mentioned to her it was actually you who took me off T4 because of gastric issues stating I had an absorbtion problem on it.

She just put me back on the worst one teva🤮 I'm not a diva so I thought what the hell I'll try it again, but unfortunately again I had the same problems as before, so stopped it hence being without thyroid medication since January 31st.

Interestingly enough when I was in hospital in thyroid storm the ward doctor didn't think it was the anti thyroid medication giving me gastric symptoms and I was given 6 PTU tablets (I had no idea they were anti thyroid medication, just told to take them by the nurse)... So what happened.... I projectile vomited and soiled the bed at the same time, I knew something was off when I developed the cramps and stomach pain... I went into shock and were given some injection to bring me out.

I saw the ward doc sometime later as I passed out, I asked "what the hell were those 6 tables the nurse gave me? Anti thyroid medication he said "I now totally believe you about not being able take the medication"

I then showed him my stomach which looked like I was 6 months pregnant, he rushed me down for a bowel scan, which showed server inflammation in both large intestines and small intestines.

He recommended I don't take the anti thyroid drug.... Ever!! Bad as I was in thyroid storm, and this feels like deja Vue with the synthetic thyroid medication 🤦

[tattybogle in reply to birkie]

all of which is why i made the above suggestion ... because from your history it seems very likely that any type of thyroid hormone from any source is going to be a problem for you .. and since you have no alternative but to take some thyroid hormone , you need to be pragmatic and find a way to minimise the problems it causes you .

maybe it's worth discussing this suggestion with whoever your next endo is , or trying it cautiously by yourself.

[birkie in reply to tattybogle]

Thank you tattybogle, I'm aiming to do just that👍 although as many of us thyroid sufferers know, certain endocrinologist within the NHS have little to no knowledge of thyroid illness 🤦let alone how to dose us, and even Less about patients who struggle on thyroid medication.

My son as offered to help me financially AGAIN! but as his saving for a mortgage deposit I really don't want him doing that😢

It cost him £800 for me to see a specialist parathyroid surgeon in Oxford who I had a consultation with and scans and bloods... But it was well worth it as he eventually got me to see a surgeon who as diagnosed me with primary hyperparathyroidism, something no endocrinologist up in my area ever as done , just keep saying you don't have it😡

[RockyPath in reply to tattybogle]

Wow.

I confess, I tried that once.

It was "exciting" and I wouldn't wish the experience on another human.

Like the bad trip when I had an extract of cannabis of unknown dose.

Half a day of distress and feeling weirded out and wondering if I was going to die doing the experiment.

But I survived.

Thank you for the validation of that clinical mode of administration, tattybogie.

When I've titrated the NDT, I've run into thrilling phenomena after five days of half-magnitude increases.

I can picture how exhilarating it would be to take a massive dose at once, and know that, theoretically, I could expect to survive the ordeal.

[tattybogle in reply to RockyPath]

just to be really clear , (for the benefit of anyone reading this later), this once weekly dosing is only done using Levothyroxine, NOT with T3 , (or anything that contains T3 like NDT) due to the long half life of T4, and the fact that T4 is not an active hormone , but needs to be turned into T3 by the body before it can activate thyroid hormone receptors inside the cells.

I imagine that like anything else thyroid hormone related , the individual response to once weekly dosing will be very individual ... some may not notice much effect at all , and some would feel absolutely godawful , or at least , as you say ,have a very, erm, 'interesting' week .

It is NOT something i would even suggest unless there was no other way of making sure someone who needed thyroid hormone was taking thyroid hormone regularly in smaller amounts ...... but birkies situation is extremely difficult , she has disabling gastric issues when taking everything she has tried so far , and she has no thyroid , so a way has to be found to get enough inside her , other wise she will eventually become dangerously hypothyroid. Which is why i think it may be worth her discussing once weekly dosing with her next endo.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

An example of the use of once weekly dosing is described in this teaching /power point presentation. I can't provide a direct link as it's a downloadable PDF , but an online search will find it :

Search :

RCP London - Funny Thyroid Function Tests - Avoiding the Pitfalls Mark Gurnell

and look for 'Case 1 Supervised Thyroxine Administration' (page 27/28/29)

[Wua13262348]

Can you tolerate alcohol, Birkie? There is an Italian liquid T3 where one drop taken in a glass of water is equal to 0.7mcg T3. It has glycerol and ethanol, an alcohol derivative in it . You could take a dose as tiny as 0.7 mcg at a time , in a glass of water with this. 3 drops in water would be a dose of 2.1mcg for example.

As late as 2019 a member on the forum reported that although it is supposed to be prescription only in Italy, most pharmacies would sell it to her without a prescription. Anyone who has tried it seems to like it. Perhaps Roseway Labs could make up a liquid T3 for you to try , using glycerol and ethanol. This may be something you could tolerate.

Something to think about???An EU qualified G.P. or Endo could issue a private prescription for Italy.

[birkie in reply to Wua13262348]

Unfortunately no I can't tolerate alcohol, but I mainly think that is because of my primary hyperparathyroidism, alcohol is bad to take, the parathyroid surgeon asked me if I liked a tipple, I said I did some years ago but find even one glass of wine makes me feel very ill.I only chance it at weddings, birthdays ect, but drink water even with one glass of gin and lemonade, one glass is my limit, and I don't go out now 😔, I actually have a friends wedding in July, she's a great mate, I would normally look forward to celebrating, but already I'm having anxiety just thinking about it.

I was on the liquid oral T4 solution but I ended up vomiting it back it just wouldn't stay in my stomach 😢

[Wua13262348 in reply to birkie]

What a pity Birkie! Strike the Liotir then. It wouldn't suit because the ethanol is an alcohol derivative. I had high hopes for that one. Maybe speak to Roseway labs to discuss what they could make from scratch that you might have a chance of tolerating. I would imagine T3 rather than T4, since T3 is the active form. I think your only hope of possibly getting something you may not react to is getting it made specially for you by a business like Roseway labs. Then, having paid for the privilege of obtaining it on a private prescription, you would need to fight the NHS to provide it. I don't believe I've seen a post on the forum where someone has tried to get an NHS prescription on a "named patient" basis, where the prescription is "off license" , made from scratch and not liquid levo. You have already had the off- license liquid special for T4, but not something compounded to your requirements. Remember the bottle of T4 liquid they gave you? I got 2 of these from the same source that yours came from in January, this year. I recognised the bottles from the photograph you provided. A pharmacist in a chain pharmacy instigated it when I had 4 bottles of the brand I needed waiting for me in another chain pharmacy. I refused them. My G.P. surgery has instructed me not to use this chain of pharmacies in future, as the chain say they have the right to order in a special if a brand is not specified on the prescription!!!!! I now collect my paper prescription from my G.P. surgery so that they do not get their hands on it. I am not to use this chain again.

Helvella taught me well, and your photograph of the bottle they gave you instantly "rang a bell". Greed from a chain pharmacy trying to make a profit providing a special I neither wanted, nor required, and insisting they had the right to go off license if a specific brand not named on the prescription! When you got it it had almost reached its expiry date, which is usual for specials. The expiry date on the 2 bottles they tried to make me take was 30/5/24! I digress.

[birkie in reply to Wua13262348]

I'm at the endocrinologist in June, I'm taking All relivent paperwork and photo proof of what I pass 💩 wise when I'm on this wretched drug.I also have a report from my gastro who agrees that all the side effects are down to the thyroid medication effecting my colitis.

Like yourself I've fought with the pharmacy over changing thyroid medication, and on a few occasions I've had 2 different types given to me, to which I went back and explained you really should not mix the drugs, and the fact I had bad gastric issues to start with🤷

This vencamil I've just recived is in a white box, my name on the front with the dosage the gp as prescribed, and other than the strip of pills inside there is nothing else, no leaflet about the drug ect, this pharmacy has the right to order in what they like, and trying other pharmacy's in my town (not many as it's a very small town) I get the same answer 🤷

We don't have paper prescriptions they are all electronic😡

[nightingale-56 in reply to birkie]

Hi birkie , I second all that Wua13262348 has said about Roseway Labs. I am having a compounded NDT from them. Just NDT with ground rice in a gelatine capsule. As I can't seem to take any sort of capsule (comes through my skin as a hard lump) I take the powder out of the capsule and it dissolves in water. I just drink this. So far, so good, over the past 10 months. This does require a prescription from a private Endo though. If you need more information, please message me.

[birkie in reply to nightingale-56]

Thank you nightingale - 56❤️

As I say I have an appointment end of June with an endocrinologist, this is an nhs one, so not keeping my hopes up he will do anything for me.

But I will try as best I can to try to get through to him just how bad both mentally and physically these last 4 years have been, and that I no longer intend to carry on like this, I have photographic proof of what I'm passing and proof of awful blood work whilst on this poison, forgive me for calling it that as I know some people do really well on T4, my own mother being one, but it just doesn't suit me at all 😢

If this endo does nothing I will tell him he leaves me no choice but to find myself a source that does natural thyroid extract, if I'm lucky.. A, to be able to afford it, and it works, I will be documenting it and presenting myself back to the NHS in order to have it prescribed, as I couldn't afford to buy it on a regular basis as I'm on disability... Stick that in ya stethoscope 😁

If it indeed comes to the fact I need to contact rosway labs I will private message you for details 👍 thank you again ❤️

[nightingale-56 in reply to birkie]

Levothyroxine has got worse and worse since 2010 for me, that is why I am now on private NDT. I am still suffering from what Mercury Pharma Levo did. I have followed your journey thus far birkie , and hope things get better for you soon.

[joydot]

🙏 I had a v useful appt lined up end of feb that was postponed - no word since. only helpful thing I have found after 2 decades of nonsense is announcing shortly into any (medical) conversation that I am recording. I make a sort of joke ‘it’s for memory reasons but may come in handy if something ends up in court’.

I do this with everyone btw, utilities, trades etc. they tend to be less intransigent than nhs employees.

May the force be with you.

[arTistapple]

birkie your case in particular strikes me as being an ‘in patient’ scenario. A clinic where medics could ‘put’ dodgy results patients where they could be watched/cared for in a genuine effort to find excellent care through dosage. So much could be learned by medics whilst you were in safe hands…..

[birkie in reply to arTistapple]

That's what I told my gp, I need to be in hospital or a clinic and monitored whilst taking the medication, it effects my body so much.Take this last 5 days for instance... Started on 12.5 on Thursday in the last few days I've got the weird noises in my bowles, pain on the right side of my bowle with bad wind , starting to pass what I call loose soft motions, which I know will turn to diarrhea the longer I take it, and be even worse on trying to increase.

I've got that horrible metallic taste back, and the beginnings of what I call the hangover headache, and on Saturday I had no appetite, and the worst of all the sweating and fast heartbeat are back. 🤷

I'm asking myself.... How... Why... I'm only on 12.5,... Am I super sensitive to the synthetic drug? 🤔

It just makes me so angry no endocrinologist or gp will listen to me, for the last 4 years I've struggled immensely with the medication, and it's not like they haven't see the bad blood results and the proof I have taken by photos of what I end up passing 💩 wise.

I spoke to my gastroenterologyst recently he looked over my records and concluded it was the thyroid medication effecting my colitis and giving me these side effects, unfortunately because it was a phone appointment I couldn't show him the photos of my 💩 😡 but he as writen a report to the effect, I have it on my desk.

So I'm taking that along with all my thyroid /parathyroid blood work to the endo appointment in june👍👍

[Wua13262348 in reply to birkie]

As an experiment Birkie, could you buy some non dairy, gluten free Coconut Collaborative Natural Yoghurt with live cultures, and eat a tub a day , spaced out throughout the day, to see if it makes any difference to your gastro symptoms? It is expensive at £2.95 a tub. Most supermarkets will have it. Asda often have it on offer, and usually have an extra big tub which is usually better value, unless the smaller one is on special offer. It may help calm down your bowel without resorting to tablets or capsules of probiotics which may contain excipients that don't agree with you. It has corn in it which I would normally avoid, but I seem to get away with it in this. Like you , I have a very irritable bowel.

Other members have mentioned things like Marshmallow Root and Slippery Elm as being calming on the bowel. I haven't tried either, and don't know if you have or not.

I wonder if the live cultures in the yoghurt might help before things get too out of hand. It is a lactose free yoghurt and seems to be the safest one with live cultures that I have came across. Could be worth a try.

[birkie in reply to Wua13262348]

When I realised it was probably the thyroid medication doing this I tried the pro biotic stuff.. The one you drink, I do sometimes have coconut and honey yogurt, but it makes no difference, the only relief I get is by coming off the thyroid medication all together.It's heaven not having the gastric symptoms, and being able to keep food in my stomach, I even do little and often, that hasn't worked either when on the meds🤦.

The gp gave me antihistamines, which I'd tried last year over the counter type, but she prescribed me one... Thank God I read the ingredients because it contained mannitol, the same ingredient as the thyroid medication 🤦so I dismissed them.... Do doctors ever listen or read patients notes anymore 🤷

[Wua13262348 in reply to birkie]

Does the coconut and honey have live cultures? If it doesn't actually upset you, you could give the one I've suggested a go. Good luck!

[arTistapple]

Oh birkie. Good luck my dear.

[Sharoosz]

Oh dear, you have been through the proverbial mill. My sympathies. I'm with you on the Teva, made me feel pukey all right. The pharmacy should be able to substitute another brand for you (and have "NO Teva" put on your file.) Have you tried any dietary changes to try and heal your gut? Gut health is so key, it seems even more so for you. Supplements? Exercise more than simple walking is probably out of the question at the moment? I do hope you find something that works for you and soon. Hang in there, we're with you.

[birkie in reply to Sharoosz]

Actually as I said this endocrinologist has proof T4 of any kind especially teva does not work or suit me, that's why she put me on T3, unfortunately because I'm lactose intolorent and have colitis I can only try the lactose free thyroid medication and there's not much of it.

But even the t3 I've been put on still gives me gastric issues, I'm totally dairy free, and my diet is quite bland, no spicy food, no wheat ect, and it worked no real problems gastric wise until I go on anti thyroid medication (graves) then thyroid medication (total thyroidectomy in 2019) even my gastro says its the thyroid medication 🤦

[Sharoosz]

I do so hope you find help.

[Lesleynotts]

Has the gastro suggested anything you can take before taking thyroid medication to reduce the gut side effects?

Also I have heard that some thyroid medication can be taken sublingually going into the blood stream directly from the mouth ? if that would benefit you with bypassing the gut. There is Tirosint in capsules which you could cut into and just take the liquid inside sublingually. The problem would be getting Tirosint with Levothyroxine in it on the NHS of course!

[birkie in reply to Lesleynotts]

I tried the oral liquid T4 but I threw that back, it was just as bad as teva, like poison, the gastro just told me to see my endocrinologist about the gastric issues due to the medication, he didn't even want to see me face to face so I could show him the photo's of what I'm passing 💩.

Says everything that's going on with the nhs today, we're just pushed aside and told to get on with it ourselves, the amount of files I have relating to my thyroid blood results and parathyroid blood results is astounding, and I've had to do this because when I see endocrinologist or gps they never look back on recent results or even bother to look at anything 🤦 one even telling me I don't have primary hyperparathyroidism 😡.. I said "well here's my diagnosis from a surgeon in Liverpool" if you look on my file you'll find it"😡 I purposely took the report to that appointment because I just knew what they were going to say👍

[Lesleynotts in reply to birkie]

Yes - I can join you as I have had to sort some health problems out mostly myself.

To come back to you more about taking meds sublingually though, it's not meant to involve swallowing just putting the med under the tongue and waiting for it to be absorbed through the mucous membrane there. Also with Tirosint there isn't much liquid to absorb and the liquid is made up of levothyroxine and glycerin. The sublingual method possibly could work for you - an option for trying if you find that your current levo is too difficult to take. I hope that at your appointment in June the endo is more flexible than most!

[birkie in reply to Lesleynotts]

I will mention it to the endocrinologist in June, but it's the nhs🙄.. Just had the diarrhea with cramps and bowle pain today, and a stonking bad headache again WHY!! 🤷... it's starting again 😭.. I reckon I might be able to cope with the rest of the side effects, although the metalic taste in the morning is awful🤢 if the diarrhea and cramping went🤷.I'm sitting on my sofa feeling emancipated, with bowle inflammation, feeling sick again... I've got to ask what the hell can be in this thyroid medication that's doing this? It doesn't contain lactose or mannitol... I was reading up on cellulose and some people have bad reactions to it also🤦

The ingredients in vencamil are... Anhydrous levothyroxin sodium, microcrystalline, cellulose, maize starch, glycolate type A, and magnesium stearate. Sounds like a cocktail of drugs to me 😔

[sparkly]

Unbelievable what your going through. Does this reaction happen with other meds too or just thyroid hormone? This is another out there suggestion which I doubt would work but worth saying.

Could thyroxine or t3 be taken vaginally to bypass the stomach? 🤷‍♀️

[birkie in reply to sparkly]

I have intolorences to aspirin, (this was found when I was given it due to blood clots) ibuprofen(this was found when I was given it for ostio arthritis) antibiotics (long story but in hospital for 11 days bleeding from back passage and vomiting blood, gastro put me on introvinus antibiotics, but after 6 days I was still bad, I was taken off it to go for the camera down the throat, but they got an emergency in so I had to wait around 2 hours before I could go down, but I felt better.. Upshot the nurse forgot to hook me back up to the antibiotics, I managed to eat something , then she realised she'd not hooked me back up, when she did I vomited and soiled the bed😔 I suffered all night until I saw the doc, I begged him to take me of the antibiotics as oral antibiotics make me ill, reluctantly he did, a within a few hours, I was up eating I went home 5days later with reactive colitis as the diagnosis 🤷These are some painkillers that I can't take, and believe it or not lemsip as it contains lactose, I found that out when I had a cold🤦

My gp knows all about it, and the gastro wrote in his report about the antibiotics, it's all a total mess really, when I had hyperthyroidism I developed a lung infection my gp gave me antibiotics... doh!!!, I threw them back, then he gave me the ones you mix in water and swollow,.. still I threw it back, same with the anti thyroid drug, I threw it back and went into thyroid storm 🤷

My gut is so sensitive I'm very careful of what I eat and put in it😔

[sparkly]

I'm so sorry things are so horrendous for you. If thyroid issues aren't bad enough, having all that on top is just awful. I hope the specialists find a resolve for it.