Graves and hashimotos at the same time

[Antisocialfluffmonster]

Anyone else have this issue?

I swing between them, horrifically allergic to carbimazol and ptu caused massive issues, tried block and replace and I can’t tolerate levo either so basically I swing between the two with no treatment.

current bloods are pretty much normal, it will stay that way for a few weeks, but still symptomatic I’ve got non pitting Edema so badly I can’t get shoes on, and there’s nothing I can do aside from sit in freezing water to try and get it to go down. Still putting on weight, and horrifically fatigues, widespread pain etc

obviously cannot do anything that removes or destroys my thyroid as I can’t take levo and I’m sick of having the same conversation every 12 weeks. Either I’m symptomatic but in range, or I go out of range and the oblivious staff try and blackmail me into taking the drug that I’m allergic to.

my parathyroid stopped working too, it’s like I can’t catch a break and my neck is always swollen. I couldn’t sing anyway but definitely struggling to talk and swallow sometimes.

I just don’t know what to think after being told that not receiving treatment for hyper could kill me, when they were trying to brow beat me into a permanent option, and now, it’s like they don’t know if having both is more or less dangerous?

be good to hear if anyone else has this issue and how they handled it?

This is such a dangerous position for you.

What reason can you not tolerate levothyroxine?

Surely an endocrinologist can prescribe you an alternative treatment plan.

These conditions can be life threatening if not treated.

an endocrinologist had been in charge of all these treatments and is the person saying there is nothing to be done. As my blood test was just in normal range last time they won’t do a thing anyway, but it’s moving back towards hyper as it swings

I have issues with medication in general, most of my medication has to be administered in patch form or I react quite badly to it.

endocrinologist plus second opinion from a private one have both agreed that chances of me managing to stabilise and feel well on levo after TT are slim. The private endocrinologist recommended liquid versions of all medication to see if it’s an allergy to binding agents or the medication however the nhs endocrinologist insisted you would have to try every brand etc before being allowed to go this route and access to liquid forms of the drugs were patchy as it was so expensive. I was so ill being hypo I didn’t have the energy to fight my corner, there’s no way I can take the risk.

the only treatment option had been block and replace and it left me bedridden and horrifically unwell. It’s not a life living like that or being unable to look after your kids.

just as an aside as someone who swings between both, massive respect out there to hypo people, hyper can be scary, but I actually felt more myself, hypo was like someone had sucked everything that was me out of me and just left a blob of jelly in the bed after it. It was absolutely horrific.

I have no advice but just solidarity. It must be so frustrating and draining for you. I was going to suggest a second option but it sounds as though you’ve gone down that route.

Have you tried any natural or dietary changes? I feel awful even suggesting it but many swear by a keto diet - and low gluten too. I’ve been trying it for the last six weeks and my eyes do look better, and I’ve started exercising. I’m still on a high dose of carbizamol and won’t find out for another few weeks whether it’s affecting my levels. I’ve been on 50mg of carb and 40mg propnals since November and they’re still not coming down. I’m
told off for not taking my meds (which I do religiously) so this was an attempt to see if diet could help.

There are some helpful and busy groups of FB. The Grave’s’ Disease UK group might get you some more helpful answers than here.

I tried the AIP diet for 4 weeks, but with the disability I had before all this gave me mcas, essentially my body signals and has a reaction even without me being allergic to anything. So aip was a flop as I could eat something one day and not the next

I’m violently allergic to tomatoes though, it’s so limiting, I intermittent fast and there’s a huge list of things that I can’t eat so my diet is restrictive.

keto is a challenge. Meat and fish violent upsets my stomach, and I have to cut out so much of the available foods that there’s nothing left for me to eat. Some days all I can actually manage is a bit of toast here and there which is absolutely not keto. I have put on so much weight there is little hope of losing it all again just through diet alone and I’ve not been able to exercise for years

well I go wild swimming, but it’s more trying to get the cold water to reduce inflammation. I have to be very careful as if I run out of energy I can’t get back out even on crutches.

i did try the Facebook groups, but they are a bit Wild West. The moment you mention you’re not on medication on some of them people ignore the fact this is the endocrinologists decision and start ranting, and other natural groups make you feel like you’ve murdered whole family of kittens for not believing that reiki and drinking apple cider vinegar under the light of the full moon will work.

(clearly I’m exaggerating )

I did spend a fortune going to a naturopath and taking the supplements and it did absolutely nothing. The only thing that makes me feel even slightly better is the cold water stuff and switching to decaff mushroom coffee (regular mushrooms not the 🍄 let’s go talk to the ancestors ones)

thank you, I did get told that endocrinology normally deals with 90% diabetes, of the rest of the patients most are hypo, the small number of hyper are normally expected to be pushed into hypo with treatment. They really don’t know what to do with me at all!! Scans of my thyroid have shown it’s massively swollen but no nodules so thankfully not cancerous.

I think everyone is just hoping that the swing helps me avoid coma on one end and thyroid storm on the other. God help me if I have a storm and have to remain compus mentus enough to advocate for myself if I’m hospitalised, as most new doctors I see don’t bother to read anything past most recent blood test and start writing out a prescription for carbimazol before I can open my mouth !

Maybe try some American groups I know they have loads of advice on more natural medicines hyper is definitely more problematic but you need to keep trying to find a solution as you’ve said you understand how critical it can get very quickly and the swollen inflamed legs are an indication your body is not coping. How old are you?

The American groups are hilarious, but They advocate medications not available in the UK unless you can commit to pretty expensive imports and private prescriptions. It would be more than a mortgage amount every month. I’ve already spent a few thousand following the advice from those groups, and honestly it hasn’t helped. Gave it a year and then was feeling no impact and couldn’t afford to keep going.

I’m 42 with a pre-existing degenerative disease, it makes everything more complicated as you can imagine. I’m being told I have to live with the swelling and keep up the cold water. As it’s non pitting Edema water tablets won’t work.

I’ve been ineligible for life insurance, critical illness cover, or private health insurance since my 20s, so really I’m on my own financially for any treatment as the nhs is not going to fund it.

being brutally honest we all know that extremes of one or the other are life threatening, and with my existing health issues times that by 10. The Edema is not a good sign, I know that.

my teenagers both have the same genetic condition as me, my priority right now is cash dumping into a pension just in case as between that and death in service benefit from work, they would be ok if the worst happened. Well financially. It’s taken a massive toll emotionally on the 3 of us.

I just have to keep trying things, and clear out the bloody house as it’s been a bomb site since I’ve not been able to do very much, I do have a cleaner but there’s limits.. and I probably need to pay for help clearing out to make life more manageable

The NHS has limitations for patients who can not take mainstream medications. Sounds like you’ve exhausted all alternatives. Hopefully your own body will continue to correct the low and high swings.

What are your TSH and T4 T3 numbers?

The blood lab have not been following the endocrinologists requests so my 6 month observation period to track the changes has had to be started again. So far they’ve only don’t the correct labs twice 🤦‍♀️

last summer my tsh was undetectable, and I had high t4,

Christmas time my tsh was 15 and they didn’t check anything else,

last week my tsh was 0.7 (range starts at 0.5) so I’m heading down but technically normal. My T4 was at the very top of the stated range at 12, so technically normal but only just and my t3 was below the stated range at 2 (range starts at 3)

the lab marked these as being normal, but obviously going from one extreme to the other isn’t normal especially when I’m not on any medication

my calcium is too high, iron too high, and vit d too low despite being on a massive amount of vit d from the GP. So it looks like the parathyroid is also not working right. Doubling vit d again to see if that helps.

Oh and I have raised antibodies for Graves’ disease but my hashimotos antibodies are through the roof. But obviously they don’t check those every time once you’ve had a positive result for them both

the lab marked these as being normal, but obviously going from one extreme to the other isn’t normal especially when I’m not on any medication

it can happen apparently, my gp said sometimes your thyroid burns out on its own and you can swing from one to another

last week my tsh was 0.7 (range starts at 0.5) so I’m heading down but technically normal. My T4 was at the very top of the stated range at 12, so technically normal but only just and my t3 was below the stated range at 2 (range starts at 3)

what is the range for T4? where I am its 12-22 so in my area 12 would be the lowest for T4 before becoming hypo in my area - but you're saying T4 is high at 12

yet your T3 is low at 2

odd that your T3 is low yet your T4 is high?

thank you for getting back to me. None of it makes any sense.

Hyper 3 times and hypo twice already. I’d be really happy if it burned itself out, although hand on heart I’d much rather be hyper than hypo, I found hypo horrifically unbearable.

They just get read out over the phone and it’s like some kind of state secret to get the full results read out. So that info is what I’ve got. It may very well be that there’s been a mistake reading them out to me, or I’ve made a mistake writing it down. I’m fairly confident in the actual number but maybe I’ve got the range wrong?

if you’re right that I’m at the bottom of the range for T4, but my tsh is still going down,

I stupidly googled low tsh and low t4 after you sent this message and haemotocromosis can cause this.

my iron levels have been abnormally high for years but below what would be considered HTC. It’s something I tend to forget about as like my low vit D, it’s been that way for so many years.

i probably should step away from the search bar for a bit and have another nap with feet up

between this and my existing conditions I’m just really over myself let alone how anyone else feels about it 😂

You can just look up your test results on the NHS app, no need to get them read out to you in the gp surgery.

last summer my tsh was undetectable, and I had high t4,

Christmas time my tsh was 15 and they didn’t check anything else,

last week my tsh was 0.7 (range starts at 0.5)

if you’re right that I’m at the bottom of the range for T4, but my tsh is still going down,

you're saying that your TSH is still going down - not sure what you mean by this

your TSH was undetectable last summer - it was 15 in December and is now 0.7

so its been down, up and now although down its within normal and detectable - which is good

tbh you'd want it to come down from 15 as that is really unwell
an undetectable TSH would lead to high T4 - thats what happens and thats how you were last summer
now your TSH is normal and your T4 is normal - thats good

the endocrinologist has asked me to get regular blood tests as every one has been different and I’ve swung from hyper and hypo more than once. She’s been looking at 18 months of tests (albeit not all of the ones she asked for ) from before I was referred to her and since she’s been my consultant. It’s her that’s telling me that I’m swinging from one to the other with periods of being in range and that treatment might not be possible.

I think it would be helpful for me to hear of other people who may have had a similar experience and how they handled it.

its completely frustrating to still have symptoms and be told “but you’re in range” and to be told that I need to be prepared that this may be the best it’s going to get. it’s pretty much unliveable at the moment.

NHS Scotland doesn’t have an app, you need to make a formal request to see them at the surgery. I did persuade them to read some of it out over the phone, but they wouldn’t read the full thing

What has happened when you have taken thyroxine? you said you were allergic?

It would be awful to have a TSH of 15, that would be unbearable - but presently you must feel better with it under 1?

Are you having blood tests every 8 weeks?

Sorry didn't know Scotland didn't do the NHS app, thats more tricky to get results, though you can ask for a print out in England, it that something you can do/

Tsh of 15 wasn’t pleasant, and what I would say is that I feel different but absolutely not better.

my symptoms don’t go away when I’m in range. The swollen legs, and racing heart are just as unpleasant. and I’m still absolutely freezing.

I wasn’t allergic to levo, I was allergic to carbimazol. I’ve tried ptu on its own and with levo on block and replace but I didn’t react well to either. It’s the endocrinologist that put a stop to all treatments because taking anything was having me bounce hard from one to the other. I’ve had to switch mostly to transdermal patches as I react strongly to everything.

I get that it may seem like a bit of a miracle, that without medication I’m in range, but taking it with a pinch of salt as 1…. I’m still ill and 2…. It’s not stable.

Hi!

I have similar history but no solutions, unfortunately. My thyroid level fluctuate between low and high. I cannot be medicated because they are not stable enough. Also sometimes get extreme thyroid swelling (to the point of stidor!) and need to take a steroid to get it to come down.

interestingly, I also have high calcium and iron and parathyroid hormone, and low vit d.

I recently had a three year remission and and starting up again now. No advice, just found the similarities in our labs very interesting.