what advice can my gp expect from the endo?

[hazmatrec]

hello! I've been on before. i would dearly love to be fully on the ndt that was working freaky well the brief spate i had it, but i can not afford it, nor the other things to go with it. I've got a decent minded gp who is really trying to help and is open to many things (when i found on the internet a medicine that was potentially helpful for the seizures i have and prophylactic for the migraines/ cluster headaches, he came back within a week with a titration plan after checking with pharmacist and neurology). so we wuirk together.

my thyroid numbers were playing nice and he was ignoring them for a while. but all of a sudden they went out of whack, about a year and a half ago (also, even tho the L4 wasn't doing the full trick to start with, it was doing some: I've gained twenty pounds, I'm more tired and cold, bowel habits slowed right down, lost great patches of hair). to cut it short, over the past year, I've gone from 100 mcg to 300mcg daily, feel absolutely wrong like I've had so much coffee and dark chocolate brownies and a cold in my nose and my hands shake. I'm on propranolol and amlodipine for lupus and raynauds already, and i think they are helping keep my circulatory system reasonable, but i have to keep on top of that. when i don't, i know it. but the test result that came back yesterday for tsh was STILL ONLY 4.1. he mentioned that it was in range but that at 300mcg, he had been hoping fir far lower. so, he's going to consult with an endocrinologist. he's hoping to not refer, partly for my sanity, and the waiting time, probably partly for the ccg, but also so i don't have to tell my health story, again, to someone new. it takes forever just to cover the vital bits.

does anyone have ideas why i would suddenly stop being able to convert the L4, use the thyroxine, have a reasonable tsh, and also what an endo might say about what's going on?

thanks for reading!

cath 'the slug' tyler

[SlowDragon Administrator]

Presumably you have Hashimoto’s

Absolutely essential to regularly retest vitamin D, folate, ferritin and B12

What vitamin supplements are you currently taking

When were vitamin levels last tested

Are you already on gluten free diet

If not you need coeliac blood test BEFORE considering trial on strictly gluten free

Propranolol will slow uptake and conversion of levothyroxine

How much propranolol are you currently taking

You can NOT stop propranolol suddenly, it must be weened off really incredibly slowly.

rejuvagencenter.com/hypothy...

pubmed.ncbi.nlm.nih.gov/168...

labtestsonline.org.uk/tests...

[hazmatrec in reply to SlowDragon]

it is hashi, yes. i was hoping maybe it was a flare that would settle, but heading towards two years is a looooong flare. i have been diagnosed nhs moderate vit d deficiency and am on a script. finally convinced the gp it needed monitoring, because symptoms not managed. i am in a low gluten diet but am not always... well, we rely on food bank input for some, and i do my best to eat without doing harm. i was tested for coeliac itself when i was in full on toast for meals mode: not coeliac. but apples, legumes, onions, some brassica all rile up the systems so i attempt to evade. not that easy up ear in Newcastle. i get up to take levo at 5 am with water and don't invest anything else until at least seven. a good head start is the best i can give the thyroxine at the moment. i would have thought with 300 going in that at least some would rep in my system!

x cath

[SlowDragon Administrator in reply to hazmatrec]

Have you looked at reducing propranolol

Very important to only reduce propranolol EXTREMELY slowly

Likely to take many months to ween very very slowly down

[hazmatrec in reply to SlowDragon]

there would need to be something in place to take its place to keep my circulatory system from breaking down. the same collagen that tend to separate for leaky gut also have a bit of a problem with my blood vessels, hence the vasovagal syncope, pots, tachycardia, bp spikes... i don't know what else would work that wouldn't muffle the levo. but also, if it didn't cause a problem with the tsh fir so many years, why would it all of a sudden start, i wonder.

[waveylines]

Propronlol inhibits the conversion of thyroid hormones so really its contrary indicated if on thyroid medication. This drug made me exceedinyl ill. If you do change it you will need to carefully manage the thyroid levels of thyroid hormobes in your system that may have backstacked. I had to come of my levothyroxine for a week to offsett the overload. Personally I would be very careful of beta blockers as many operate like this but Proponlol is one of the worst. You may find that once off the beta blockers things settle down. If they dont then I owuld then look at other options.

Do you have your nlood test results - be helpful if you could post them

[hazmatrec in reply to waveylines]

I've put what blood test results I've received, and the ranges, in the reply to everyone. if i do have some other way to keep the blood going round the right way, I'll maybe halt a bit on the levo. 300 already feels like too much, i can imagine it just getting worse if the prop has been muffling. thank you and dragón for the cross fade tip. x cath

[SlowDragon Administrator]

I would agree with waveylines you like will need to reduce levothyroxine as propranolol dose reduces

Propranolol will be stopping you use levothyroxine

[shaws]

It is a great pity that NDT was removed from being prescribed for hypothyroidism.

It just goes to show how inept many of the 'supposed to be experts' are who don't really understand that some people cannot improve their health on synthetic thyroid hormones.

Our bodies dictate what suits us and what helps us recover and restores our health.

It is unfortunate that most 'modern' doctors no longer diagnose patients through their clinical symptoms alone - as they used to.

I would see my local MP and say that you've become more unwell with the withdrawal of NDT and you cannot improve your health on levothyroxine - as many on this forum are members due to their symptoms not improving and are not offered 'options' .

This link I would also show to your MP. People who work on theories do so in order to restore the health of sick patients - yet False Statements (very polite) are made in order to remove important, life-saving hormones with complete disregard to those who're left 'in the lurch'.

This link may be helpful.

thyroid.org/patient-thyroid...

I do not understand that a medication that saved lives from 1892 onwards without the need for blood tests (weren't invented then) and still does today, has been removed regardless of the clinical symptoms that have returned with the 'option' offered.

hormonerestoration.com/

[hazmatrec]

hello! i started levo in 2006 and after titration had a steady tsh on it of about .3 to 1, for what that's worth (as you say, it did not assist the signs and symptoms sufficiently) up until this changing point, even when i was pregnant. as i say, my most recent tsh was 4.1, in a range of 2.5-4.2. I've been on propranolol for eight years and not had it interfere with 'numbers' before. lupus is a pain in the butt for medicine because if my circulatory system isn't controlled, i vasovagal syncope everywhere, have tachycardia, pots, bp spikes, all yuck. i need steady as she goes.my d levels are up to 45, halle. i tested neg for coeliac, but am sensitive anyway, so when i can afford it, avoid it. i have a variety of malabsorption issues and have a high folate, reduced b12 result, pretty much every time. last test was a while ago fir that, but gp is going to mention that as well. my active iron is a bit low altho in range, but again, supplements will inhibit levo uptake; decided against. also, my ferritin was oddly reasonable which doesn't usually happen: 79 in a 12-150 range. so, it's time for some crp and esr and liver levels to see why so much stored.

if i could work in the midst of my body he'll, i could make enough money to afford the ndt and be able to at least have the energy to... ungh. and, if my absorption problems are getting worse because of how long things have been wrong, it's possible the ndt wouldn't help. i don't know.

'sluggo'

[waveylines in reply to hazmatrec]

Thyroid hormones drive the whole body so if you take a medication that inhibits their use then it will have a very wide and diverse affect on the body. It is never too late to start having thyroid treatment that is effective. There are multiple stories of people bring very ill & wheel chair bound making full recoveries in time once they are on optimal treatmrnt for theur hypothyroidism........so please dont give up. Your TSH of 4.2 is really high for someone being treated and needs to be under 1. Undertreatment of hypothyroididm causes palpitations so though you feel the proponolol is treating the palpitations it is also causing the plapitations by inhibiting the use of levothyroxine.