Dodo appointment today 😠

[birkie]

Merry Christmas everyone 🎄

Well I've just come from the most awful endo appointment ever, I've seen this endo several time and each time she as dismissed me with changing my thyroid medication.

So far she as changed me from T4 to T3 then Back to T4 then T3 again, thinking she's going to get a different out come to my stomach and bowle issues with the medication.

I've tried everything this last 4 years since full thyroidectomy, she now wants me to come off T3 and go back on T4, I explained it doesn't matter what you put me on, it will not stop the stomach and bowle issues, it's the medication causing it.

I've come off both T4, T3 (not on combination) to see if the symptoms go.. And they do.. My stomach and bowle return to normal! So it as to be the medication.

She told me the only alternative is T4 and now she is refusing to prescribe the T3.

I showed her the photos of what I'm passing, she blamed the T3, I said well here's some photos of when I was on T4... Same.. Diarrhoea, with cramping, inflammation feeling sick.

I asked to try NDT... That was a firm no!

So on reflection, one... She never looked over my last blood results (Oct 24th(TSH...11.59)...T3..4.7)

She told me she didn't want to deal with me, and I had to find another endocrinologist, this I'm happy to do, but she as refused to furnish me with the T3 now!

Can an endocrinologist dismiss you with bloods I have?

If she herself doesn't want to deal with me shouldn't she get me referred to another endocrinologist as I'm having real problems?

Does this Warrent a complaint?

Her conduct was appalling, she folded her arms over her chest, sat back like she couldn't care less she was allowing a patient to walk out of her clinic ill.

I'm now left with trying to see my gp who referred me to this monster (sorry but I have no other words to describe her) and I will not be getting the T3 prescription anymore 😠T4 never restored my T3 level so I'm not taking anything when this last strip of T3 as gone, they are making me very ill by not listening or treating me correctly the thyroid medication is not working 😢

[SlowDragon Administrator]

Suggest you consider private consultation (via zoom if necessary) with one that does prescribe NDT

You would need Armour as it’s only one lactose free

It’s not cheap

Here’s link for how to request Thyroid U.K.list of private Doctors but also list of recommended thyroid specialist endocrinologists who will prescribe NDT

Ideally choose an endocrinologist to see privately initially and who also does NHS consultations

thyroiduk.org/contact-us/ge...

[birkie in reply to SlowDragon]

Thanks for replying slowdragon, I'm honestly at my lowest ebb right now, I wish I could afford to go private but unfortunately I can't, my only option is to try to speek to the gp who referred me and try to see another endocrinologist.I would rather see one out of my area (Cumbria)

As you know I've been back and forth to Liverpool to see the parathyroid surgeon, I'd even consider Liverpool.

I don't know if this parathyroid /thyroid surgeon in Liverpool would be interested in my thyroid medication, she was the one who told me to see an endocrinologist about the medication 🤷‍♀️

[SlowDragon Administrator in reply to birkie]

see if any nhs on that list

But virtually impossible to get NDT on NHS

Could you trial NDT privately

Might find it’s no better

[birkie in reply to SlowDragon]

My son would help with the NDT privately, but he can't pay for me to see a private endo, he as a lot on next year, off to Norway (artic circle) to do a photography course for his job.I must admit I know very little about NDT only that it doesn't contain any fillers (or am I wrong) 🤦‍♀️ it's definitely the fillers in the medication I'm taking, both T4, T3 and I've been on the lot, liquid, teva, Roma, accord, Morningside, I'm sure there's more but forgot the names 🤦‍♀️.

I really don't understand how a so called professional person can dismiss you with blood like mine, it says on the report.. NOW HYPOTHYROID AGAIN!, seek information from endo on these results, that's why my gp sent me to this dodo but quite honestly I'd try NTD out of sheer desperation.

But surely they can't just leave me under medicated, or keeping me on medication that is clearly not working for me.... What do they want me to do?.... Just die😢

[helvella Administrator Thyroid UK in reply to birkie]

Aside from the substances that are part of the actual desiccated thyroid glands, such as various proteins, Armour Thyroid (for one example) contains:

The inactive ingredients are calcium stearate, dextrose, microcrystalline cellulose, sodium starch glycolate and opadry white.

rxabbvie.com/pdf/armour_thy...

If I come up with anything actually helpful, I'll reply again. But it is very difficulty to come up with helpful ideas.

[birkie in reply to helvella]

Thank you helvella, it's getting to me mentally now.. Yesterday I was on the toilet around 4 times each time with cramps (horrible pain) then the diarrhoea, it washes me out😔.. I have colitis and are lactose intolorent as you will probably know 🤦‍♀️.. Just a question.. If NDT contains fillers, it may as slowdragon suggested be no better but where do I go for there?Suffer like I am? Going back on T4 will not improve my bowles because I've done it twice with the same effect.

But would seeing a gastro specialist be of any use? After all it's the thyroid medication that's irritating the intestines.

After my colonoscopy the specialist had a long talk with me he said this problem is caused by what's going into your system ie what you're ingesting, in this case it's the anti thyroid drug.

Got full thyroidectomy 2019 and thought that's it.. But as soon as I got the T4 in my system the irritation started all over again so I know by me coming of both T4, T3 and the symptoms going then going back on and the symptoms coming back it's the meds.. So maby getting the gut sorted with the correct medication I might stomach the thyroid medication 🤷‍♀️ I'm grasping at haybails here helvella 😂

[helvella Administrator Thyroid UK in reply to birkie]

There is a possibility that a gastro would be helpful - if nothing else, to support your case that something is causing it. I suggest it is worth trying - but don't expect too much.

I have a nasty feeling that you might be failing to absorb sufficient nutrients from your food with all these things going on.

There is an extreme outside possibility that Aristo Vencamil might be better than the other levothyroxine products. It contains neither lactose nor mannitol nor glycerol. Not suggesting it would really be the answer, but could be a least bad option if you do decide to take any levothyroxine. (Only 100 microgram tablets at present - but they split easily.)

[Hedgeree in reply to helvella]

I was going to suggest Vencamil too as not sure if birkie has tried that brand?

[birkie in reply to helvella]

OK helvella thanks for the recommendation (Aristo vencamil)And I'm sure your correct in the absorbtion problem, which would also mean the absorbtion of the thyroid medication could be compromised to. 👍

[helvella Administrator Thyroid UK in reply to birkie]

Indeed it could.

[SlowDragon Administrator in reply to birkie]

I must admit I know very little about NDT only that it doesn't contain any fillers (or am I wrong)

Armour is manufactured and does contain fillers

Most (all?) other NDT brands contain lactose

list of brands and ingredients here

thyroiduk.org/contact-us/li...

[birkie in reply to SlowDragon]

Thanks slowdragon ❤️

Some members suggested vencamil Aristo, pretty sure I've not had that... I think😄.. Maby I could see if I could get a prescription for that, although it will mean getting an endo appointment because I can't see gp just prescribing it.

But I'm refusing going back on T4 ,so gp will just have to suck it up😠 I'm also thinking of complaining to PALs about her conduct during the appointment, and the fact she never looked over any blood work or the F18 pet scan ,which as turned out to be thyroid tissue which as grown since 2022,because it was not on a US scan I had no 2022.👍

[SlowDragon Administrator in reply to birkie]

although it will mean getting an endo appointment because I can't see gp just prescribing it.

GP can and should prescribe

It costs the same as other levothyroxine tablets

prescription should be written a certain way - approximately £1 per packet

How to specify brand of levothyroxine

[Hedgeree]

Hi birkie,

Just a thought but have you a list of all the brands of T4 and T3 that you've tried? It may be an idea to go through that list and compare it to helvella 's chart of brands and their excipients.

It could be possible that there's a brand you've not tried that may suit you or do not contain the excipients that are causing your bowel issues.

[birkie in reply to Hedgeree]

Can find out through my surgery, I've been on so many T4.. but only teva T3, and Roma T3 👍

[Hedgeree]

Hi birkie,

I've only been taking thyroid hormones for over a year so much less time than yourself. I struggled at the beginning as I didn't tolerate the levo due to I think being hypothyroid for many many years prior and my body couldn't cope with the increase in thyroid hormones.

It was also obvious that I was also experiencing much digestive upset with certain brands. But once I found a brand that was lactose free and started off splitting the tablets into tiny crumbs and going very slowly with increasing my dose I found I could slowly build It up.

It has taken over a year to titrate up to 75mcg of levo so been going up very low and slow. Maybe if you do find a lactose free brand that may suit you, slowly titrating upwards may be something that you could consider?

[birkie in reply to Hedgeree]

I'm on lactose free, it took myself going on this site to realise the tablets I was on T4, contained lactose, got them changed but still had the problem, split the meds up in to smaller doses but still the same 😔 it's been that way 4 years now.. On both T4, T3 lactose free, I've tried everything, but my gp only gave me buscopan for my colitis, which as never worked, and no matter how much I complained to him he wouldn't refer me back to gastro... And I'm pretty sure buscopan was not what my gastro prescribed for me😠Also I've just had an F18 pet scan which picked up inflammation in tonsils and lymph nodes, said inflammatory in nature.

I asked the specialist what this meant and she told me I had inflammation somewhere in my body. 🤷‍♀️

[Hedgeree in reply to birkie]

I also have issues with mannitol so once I found a lactose and mannitol free brand I've stuck with that and have been able to tolerate the Vencamil brand of levo.

If you've not already tried Vencamil, as helvella suggested it may be worthwhile doing so. You would need to get the GP to specify that brand on your script, that can take some doing but worth pursuing if you do find you can tolerate it.

Good luck birkie.

[jimh111]

Ask your GP if they will give you a trial of liquid levothyroxine, it may help. gov.uk/drug-safety-update/l...

[helvella Administrator Thyroid UK in reply to jimh111]

birkie has already tried liquid.

[birkie in reply to jimh111]

Been on it... It was actually the worst and I threw it back on more than one occasion, it was awful 🤮

[SlowDragon Administrator in reply to birkie]

Have you tried Vencamil

If not get GP to specify Vencamil 100mcg levothyroxine

Lactose and mannitol free

If your (useless) pharmacy won’t get it in for you you could use online pharmacy

Springfield pharmacy can supply

thyroiduk.org/get-support/t...

[birkie in reply to SlowDragon]

Just replied to you slowdragon on that medication, I will try anything to get me feeling normal again, I know I've got so much going on phpt and the eye stroke, but I'm trying my very best to get my thyroid medication working, but it's impossible when your💩 it through 😭

[J972]

Have you considered this?

rosewaylabs.com/patients/

I don’t have first hand experience, but, it’s my understanding that they prepare compounded thyroid meds without certain fillers and ingredients.

[Sparklingsunshine in reply to J972]

I use Roseway for LDN. They can prescribe both Armor and Erfa via their GP prescriber. I've no idea on cost but she is cheaper than a private Endo.

[birkie in reply to J972]

Yes a couple of members have suggested this, and I'm thinking of doing this to, but I'm on disability, so my son would have to help me financially 😔 but also Aristo vencamil as been mentioned and that would be prescribed free so might go with that to start with, if I'm still having gut issues then I will try the rosway👍

[Charlie-Farley]

Good grief birkie

This is just awful, your endo is a psychopath. Dropping you with results like that. 😱

As SlowDragon says TSH like that says hypo. Whilst TSH is absolutely no good for managing dose it is useful when in higher figures to indicate being under medicated (or undiagnosed hypo).

From what you have said your gastric issues are undoubtedly the root. This could be magnifying intolerances to things and needs intervention.

You most likely will be suffering nutrient deficiencies which will be creating a negative feedback loop as in order for our metabolism to work we need the nutrients we ingest. That’s the whole point. I have had no where near the problems you have had re diarrhoea, but did have digestion issues. Removing gluten completely, getting vitamins up and working out what food combinations did what worded amazingly well. I kept a food diary and low and behold I could eat a chicken jalfrezi with raw green chillies over the top but not gluten free apple crumble as high fat high sugar high carbs kills me!

I think focussing on the gastrointestinal issues would be a good idea. You simply can’t leave it.

I know we are supposed to take medication away from food but if the medication is upsetting perhaps do the opposite? Pick a well tolerated food, stick to that one food an in a fixed amount and take medication with that. Run it past your doctor if it works. You may need dose upping to compensate but it’s better than not absorbing the dose you are on now because it just shoots through you.

Bit radical I know but nothing else is working.

And you need a vitamin and mineral panel.

Your doctor should be able to provide this and the rationale of likely being nutrient deficient owing to the long term gastrointestinal problems is a good justification. GP would have to be pretty dull not to understand that.

It’s just a suggestion but when all else is failing???

[birkie in reply to Charlie-Farley]

The main problem as I've said is me stomaching the meds, endo still pushed for the T4, she put me BACK on a year ago, it didn't work on the both years I was on it, my T3 was awful.So she put me back on T3 only to get the t3 up, this it did, but the dodo fails to see the problem with absorbtion due to constant diarrhoea, the cramping and pain are unbearable I can only aliken them to labour contractions bloody painful, then i look at my stomach and look 6 months pregnant, that's the inflammation in the bowle.

There are days I just have to give the bowles a rest and let the inflammation go down, so I don't take the t3, I know it's bad but it works! Then I get anxious because I know I've to start taking them again, know everything will start back up again, it's honestly hell on earth.

I've tried everything, the half glass of water no food or drink for 1 hour

With this it's not to bad I get a slight stomach pain with awfull guggling, and bubbling in the bowles and stomach, then I eat and within an hour.. Just like today I'm on the toilet.

Done the same taking it with food the same occurs, I can't get it through to anyone it's the thyroid medication irritating the lining of my bowles 🤦‍♀️.

I also did a food diary, I eliminated any foods that irritated me, my diet is very bland and I have lactose free milk and are dairy free 👍.

And this is the test... Off the thyroid medication I can eat as I normally do I have no problems, just like it was before I went on the thyroid medication

This also happened when I got my diagnosis of hyperthyroidism got put on anti thyroid medication and within 4/5 days I started with bowle problems then the diarrhoea this was confirmed in hospital after 2 bowle scans the specialist said it was definitely the anti thyroid drug, once off it my bowles returned to normal.

I'm going to need all my strength to fight this in the new year, the problem is getting an appointment at my surgery it's impossible I've sat for 5 days straight ringing between 8am 9am it's always the same SORRY NO APPOINTMENTS AVAILABLE TODAY, AND NO PHONE APPOINTMENTS WITH THE GP. 😡😡 I'm expecting I'll get the same response 😔and after the new year gps surgerys are always full🙄

[Charlie-Farley in reply to birkie]

It’s heartbreaking Birkie….

I’ve just read Batty1 ’s advice. It sounds like a really good suggestion, the next logical step. 😬🤞

[Batty1]

You should go see gastroenterologist and take your thyroid meds and explain what is going on and ask him/her for suggestions and letter to Endo explaining his/her findings … maybe they can convince endo that your issue is real and the cause is the the thyroid meds.

[birkie in reply to Batty1]

Thank you batty1👍

I have photos of what I'm passing 💩 it's not nice, the endo was not at all interested in it, she saw the photos I popped them down on her desk asking her to first look at what I'm passing (there on my phone, I didn't take them with a camera and get them developed 😂🤢).

She immediately blamed the t3, I then told her these photos are actually me on T4.. These are the other photos of me on T3.. See.. no different both medications are causing bowle and stomach issues.

Her response" was well karen what do you want me to do"?

I said "help me, I can't go on like this, your the expert" .

I'll put you back on T4... FGS.. I'd just shown her the photos of my diarrhoea on T4..

and I agree batty if no endo can resolve my issue then I need to see a gastro in order to rectify it, maby a small amount of steroid would help the inflammation, it did when I was eventually discharged from hospital (diagnosis of colitis /lactose intolorent) 4 months on 5mg steroids and all pain in bowles and body went, I felt like superwoman, then I had to ween off them and everything came back 😔

[Batty1 in reply to birkie]

You need to go see a gastroenterologist and show him the photos and explain your issues and further explain it didn’t start until I started thyroid meds and show him the meds …. Let him decide and if he is certain thyroid meds are to blame then he can write your Endo/Doctor with recommendations ….. it could be you developed a gastrointestinal disease and the thyroid meds could be a contributing factor.