Recent thyroid blood results

[birkie]

On T3 Roma 25mg split (10mg 8am)..(10mg 3pm) (5mg 6.pm)... Having stomach /bowle problems on 25mg even splitting, trying to get an appointment to see gp, to get referred back to endo.. Just had 3 days of bad cramps very runny stools because I tried to go up to 25mg again ( I had to decrease to 20mg after my thyroid blood test 2 weeks ago, tried the increase again and it's back to hell again 😢Results on T3 at 25mg:

T3...5.4...range (3.10..6.80)

T4...2.80..range (11.00..22.00)

TSH..1.77..range..(0.30..4.50)

Again no vits or minerals were done eventho I asked for them, no other blood work only thyroid 🤦‍♀️

I don't feel well at all, but seeing as these bloods are in range 🙄 the gp will not bother about how I feel 😠

[SlowDragon Administrator]

perhaps you might need propranolol to slow up how quickly you process T3

shaws takes T3 at only 20mcg plus propranolol

Are you now on absolutely strictly dairy free diet?

Not just lactose free

[birkie in reply to SlowDragon]

I don't have any dairy slowdragon, and just a splash of lactose free milk in my tea, and these last 2 weeks I've been eating very little due to feeling sick, I'm trying to see if I can get my lactose free milk changed to oat milk with my milk man👍 but these last 3/4 days increasing up again to 25mg have caused the stomach /bowle issues to be unbearable, I am passing mud no formation of the stool, if it weren't for the horrible cramping and inflammation I could probably cope with the loose stools.And the fact I just don't feel well at all, yesterday I felt awful I managed to pop to my surgery to pick these results up and it killed me, I was sweating profusely, my heart was beating out of my chest, my body feels like someone has battered me with a bat, I have this horrible sensation from my pubic bone down my thighs and into my ankles like my bones are vibrating and weak, I don't sleep well (always on the toilet to pee through night, have pain in my back, I understand that some of these symptoms may be linked to the parathyroid for which you know I'm having the chlorine pet scan on the 9th of this month.

I'm really hoping this nodule the parathyroid surgeon found shows up as an enlarged para gland 🤞 then I can move on from there.

Taking propranolol that sounds interesting, I do think I take it up fast as these results have shot up from 20mg on 20 my TSH was 6.25 so I was surprised to see these results yesterday.

[SlowDragon Administrator in reply to birkie]

Did you take propranolol when you were hyperthyroid

You can’t take propranolol if get asthma

you do need to cut dairy completely as you’re dairy intolerant

You can order oat milk online or get your son to drop you round some

It keeps for months if not opened

[birkie in reply to SlowDragon]

I get my milk delivered it's honestly easier because I can't always get to my town, I was on propranolol during my hyperthyroid state but it honestly made no difference, gp checked my heart when I was on it and my heart rate was still very high.Gp noted this also around 11 months ago and because I'd never seen this gp before he said "you may have a thyroid problem like hyperthyroidism 😂 I had to explain I actually have no thyroid ,he then said" ho then maby your medication is to high" (over medicated) he checked my last thyroid bloods and saw I certainly was not over medicated, then said "I have no idea what's going on with you" 🤦‍♀️ this has been going on ever since with my heart, but as I say it could also be linked to the parathyroid problem as to much calcium also causes the heart to race so there's a lot going on at the moment, but after my pet scan I'm going to get bloods done privately to include a antibodie test.. I've also be thinking could my antibodies be attacking my bowles 🤦‍♀️ also the awful body pain could that also be linked to an attack.

[shaws in reply to SlowDragon]

I take one dose of T3 when I awake (with one glass of water) and wait an hour before I eat. I have no palpitations with T3.

Propanolol was prescribed due to the fact that levothyroxine (T4) (when first diagnosed) caused severe palpitations during the night and Cardiologist couldn't figure it out what caused them.

At bedtime I take one 2 .5 mg bisoprolol tablet and am considering to stop as I no longer have severe overnight palpitations that occurred with T4.

[birkie in reply to shaws]

I do the same shaws 8am 10mg one glass of water, wait for the hour sometimes longer depending if I'm feeling OK.. Not feeling sick then I have breakfast cuppa tea.. I've just had my first diarrhea of the day bad cramps pain then run to the toilet, it's the same every morning.. Except when I don't take the t3... I'm going to Liverpool for my pet scan on Aug 9th...i have no intention of taking my T3 that day.. As the last time I was at Liverpool seeing the consultant I'd taken my T3 dose but didn't eat anything incase I'd need the toilet on the train, I felt flipping awful I had cramps/ pain and felt nauseated the trip was terrible, I'm not doing it again.

[shaws in reply to birkie]

I'm sorry you've had such a stressful period,

I hope you are able to source a T3 from another provider.

Maybe trial by taking your T3 before you go to sleep. A bedtime dose may work better.

Dr John Lowe (expert on T3) took his T3 in the middle of the night so that nothing interfered with its uptake.

[SlowDragon Administrator in reply to birkie]

“Except when I don't take the t3... “

Try T3 but don’t have any milk in tea

[birkie in reply to SlowDragon]

I've done the water only for a number of hours when I feel sick.. I always get the same thing.. The rumbling, crumbling bubbling, bloating noises, the burning sensation, and the acid wash back, but it's worse when eating because then the diarrhea starts.. If I don't have any food I still get the stomach cramps pain burning, bloating, ect but no diarrhea until the food is introduce, same today 8am 10mg a ryvita plain water diarrhea with cramping, I went to Liverpool had no tea no breakfast only water because I was terrified of having diarrhea on the train but I still struggled with cramping, bloating acid and burning sensation in my upper gut.. I'm going on the 9th Aug I'm not taking the t3 but will have a cuppa with my lactose free milk before I go to my sons in the afternoon(just waiting for the oat milk now) and see if I have the stomach /bowle pain and diarrhea in the morning 🤷‍♀️

[SlowDragon Administrator in reply to birkie]

Might also be worth trialing strictly gluten free

It could be gluten…..more likely dairy…..or (unusually) the T3

Are you currently taking Roma

Have you tried taking powder out the capsules …..might be something in capsules that upsets you

[birkie in reply to SlowDragon]

Yeah slowdragon on Roma as I said trying to increase back to 25mg split.. I managed to suffer on 25mg for 4 weeks before my thyroid blood work, then after the draw I went back down to 10mg..10mg (20mg) i take the powder out 👍, I don't know how it can't be the thyroid drug as when I come of the symptoms go back to normal and I eat and drink as I've always done after my colitis diagnosis (I know my trigger and keep away from those foods.Introduce the t3 again and it all starts again 🤦‍♀️

[SlowDragon Administrator in reply to birkie]

Did you ever try

Aristo Levothyroxine

Now called vencamil

It’s lactose and mannitol free

Or tried liquid Levothyroxine

When are you seeing endocrinologist again

There was talk of experimental Levothyroxine via skin patch ……you would be ideal candidate

helvella may know if that’s actually happening

[helvella in reply to SlowDragon]

I suggest anyone who is interested has a look at my blog on the subject of trans-dermal levothyroxine.

helvella.blogspot.com/2023/...

[birkie in reply to helvella]

Just read that paper helvella,👍 I'd give my hind teeth to try that method, I don't understand why this hasn't been done already, insulin is administered via injection, you can have contraception by injection, HRT via a patch.. It's all hormonal.. So why not thyroid hormones by this method also?

[helvella in reply to birkie]

Injectable levothyroxine is readily available in several countries - but I have no idea of the price. I'd be surprised if it were affordable for anyone.

Even licensed in the UK - but maybe not actually available!

Levothyroxine SERB 200 micrograms/ml

solution for injection/infusion

mhraproducts4853.blob.core....

[birkie in reply to helvella]

Well it may as well be flipping gold dust to the NHS... My nhs would certainly not prescribe it.. Really stinks when it could help people with gut /stomach issues 😔

[birkie in reply to SlowDragon]

Yeah pretty sure I tried aristo, and tried liquid twice, I've been trying to get an appointment with the gp who sent me for the colonoscopy in June, she said if no cancer is showed you will need to go back to endocrinologist, the gp as seen what I'm passing (still am) she said endo will need to know this it's getting the flipping appointment 😠I was thinking of asking about those patches slowdragon 👍

[JAmanda]

is there a reason you’re taking only t3 and not t4? T4 easier to take for most.

[birkie in reply to JAmanda]

Yes I couldn't get on with T4, tried 3 times to stomach it, it was worse than T3, I just feel like a Guinea pig now with my surgery, they just keep giving me thyroid medication hoping to get a different out come, it's not worked, I've just spend the last few days feeling the worst ever.Eventho my blood work shows I'm in range, I want to feel well again and each time I'm put on another thyroid drug I think "please work don't give me any horrible side effects" but it's just not happening, I really just want to stop taking them PERIOD!!.

I've come off them in the past and all the awful gastro symptoms go... I go back on and they ALWAYS come back 😢 so I know it's this medication causing the problem.

Since going back up to 25mg I've been listening to my body and what I see/hear when I take the meds is.. 8am first 10mg with water.... T3 hits the stomach with in 5 mins I start with rumbling, crumbling bubbling noises, then a slight burning sensation, with burning acid reflux (I wait 1 hour before I have a cup of tea) I tried actually having a small amount of food on the stomach before taking the medication but that produced much the same effect but the acid wash back was worse.

I'm just about done with these meds😠

[JAmanda in reply to birkie]

I think we are Guinea pigs but maybe better to think we’re our own Guinea pigs and run our own experiments on ourselves. Apart from our complaints about docs on all sorts of grounds , the truth is medicine simply doesn’t know everything and individuals are all different. So I think we just have to try everything on ourselves to see what works. I now take my t4 and t3 at bedtime and like that - so I can have food and drink first thing with other meds. Lots of other advice on here re maybe adrenals affecting your taking t4 maybe or perhaps being deficient in other things. For me I found I could increase my t4 how ever I liked with nothing bad happened- but I don’t like to be without any as the t3 only was too up and down (I could feel when it was running out and I needed more).

Sorry I’m prob not really helping - good luck on working out what works for you.

[JAmanda in reply to birkie]

Many say you can take t3 with food - maybe just try it after breakfast for a while. Also - and you may already have tried this - but I found I couldn’t do bits of t3 5/5/10 etc - but when I did 20 all at once it was just fine. Ach I know it’s all very hard!

[birkie in reply to JAmanda]

I've tried everything with T4 and T3.. I fear its just irritating my colitis as did the anti thyroid drug.Done the nite thing, the food thing, I split it to try to make it better on my stomach , I can't take a full dose, tried that to.. I did have low cortisol in 2020, had that test in hospital where they take your blood and test your cortisol, my gp just said I responded to the test.. No further action required! And that was that... But in 2015 after my colitis diagnosis I left hospital with 4 months supply of steroids... The best 4 months of my life😁