I had the worst night of nocturnal hypertension ever. I took 60 mg of propranolol that I had left over from when I was last in that position, & it took 2 hours to get my BP down to 145/83? only got about 3 hrs sleep - if that. It is now 139/83. I am scared to take any metavive in case my GD is back. My symptoms feel just like thyrotoxicosis. I couldn't get much shopping on the way back from GP yesterday
When I had nocturnal very high BP in 2010/2011 it was caused by a reaction to a prescription drug, but Dr's would not believe me, & took all my £. It sounds like they still believe that my periodic high BP is anxiety, which is what UK Dr's believed in 1980/1981. So the only solution - as I see it - is to avoid metavive as I cannot risk anymore brain damage. I need to write my will ASAP, whatever it costs. I will ask an honest lawyer that I know if he knows an honest wills solicitor. Wills cost £££ here, but solicitors steal the houses of dead widows with no family, so need to be careful.
I also need to get food as my bladder won't allow more than a quick dash to nearest supermarket now. I have just eaten oats with milk, so I will just take selenium (which seems to help my eyes) & paracetamol for the headache.
Does that sound like a good plan? I read somewhere that the nucleotides in Metavive reactivate autoimmune disease in some, & maybe that is happening here.
I wish now that I had insisted on the TFT blood test, but I'm hoping that by stopping the metavive things will calm down, + the last thing I need is a forced thyroidectomy. Does anyone here get periodic graves symptoms?
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Jenny583
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I am sorry you are in such a predicament and isn't it just like the thing that most awfull symptoms can happen during the night,. We can feel much worse even if taking tablets that we feel might be helpful. a L O N G night seems even longer when we're awake and very symptomatic.
I cannot answer your question and hopefully some members will be able to later in the day.
The last thing anyone needs is a forced thyroidectomy.
Thank you shaws, no Dr's believe me, yet I had very high BP for years till 5 years ago. I can't understand why there is no record of this, I still have some lercanidipine, Bedranol, & propranolol knocking around, so proof, but I'm not spending another £46 to bring these to a GP as proof, when she finds the thought of my not going out even to the shops except in winter when I can wear a hat to hide my now virtually bald head amusing.
Jenny 583 you do have my sympathies as I am fully aware how unwell we can feel, yet doctors know nothing. If you click on my name you can read about my journey to be diagnosed.
All our older doctors knew all clinical symptoms and we got a trial at least of NDT or T4. NDT = natural dessicated thyroid glands in pill form..
GPs will not be persuaded at all (they have no knowledge and are completely ignorant of clinical symptoms.
Your last results showed over range fT3 and very low TSH. I thought you'd stopped taking any T3 but this post asks "should you stop metavive" which may (theoretically )contain some T3 .
I presume the reason that the endo wrote "not an official report ,do not file" on results was because they were private tests ? In which case if they won't accept them as official they should surely do their own to confirm and record those results instead?
If you are concerned that Graves has resurfaced, then presumably you need to stop taking ANY thyroid hormone replacement, and then get TSH/ fT4 /fT3 levels checked at the Doctors once you 've been off thyroid meds for long enough to get a true reading of what your own thyroid is producing.
Don't worry about your past history being unavailable/lost ... if graves (or some other reason like a hyper functioning nodule) is causing thyroid hormone levels to rise then this will show up in TSH/fT4/fT3 test once you are not taking additional thyroid hormones. So you will have current 'evidence' of what ever is happening now.
You were prescribed some propanolol ? the other day i think, which is not something i know about , but i thought that was often used to help with tolerating symptoms of hyperthyroidism , so check with GP if this is why they prescribed it, and what dose you should take.
'Forced thyroidectomy' is a bit strong.... i 'm sure you are along way away from anyone even suggesting it , let alone forcing it on you ...
First of all they need to do TSH/fT4 /FT3 tests , and then they'd need to do a TRab to confirm graves ... (once they'd 'remembered' what TRab was .... sound's like your Doctor said she didn't know what it was )
Sorry to hear you're having such a hard time again, it must be a dreadful worry having to pay to see the Doctor all the time. Even though we have our share of problems with the NHS ,,at least we can still go even if we're skint.
Hi tattybogle, we don't have private specialists here, or NHS. The Endo is the only Dr that can arrange tests, but we have to get the tests & prescriptions from GP, but only if the Endo allows it. We pay for the endo's blessing on diagnosis & treatment indirectly, but we pay the GP for the action or inaction both directly & indirectly...When my TSH disappeared 3 years ago, I was very hypo & unable to function with very low FT3/FT4 I was unknowingly taking 'very high dose' biotin (20,000 times a normal dose) so on paper FT3/4 was right on border - but in reality it felt & most likely was much lower,(advisers on this forum suspected central hypo). But I only found out last year how high my biotin was & about the 1 week rule.
In 2017 I had just had the blood test a month B4, & a friend advised me to see a different GP.
This I did. I told the GP about biotin skewing results,I had taken it within 8 hrs, (but I falsely assumed that I was taking a normal dose of biotin, & also that I only needed a 24 hr gap) I told him that TSH is not a thyroid hormone. He disagreed & insisted that I had hyperthyroidism & said that he would arrange for a thyroidectomy. When I pointed out that I had had thyrotoxicosis, he said It had burnt itself out, & then he contradicted himself again by stating that my records only go back 10 years. He then charged me double fee, & no test or script.
So I was left with the impression that Dr's don't want to know, & use fait accompli threats of thyroid surgery to shut me up when I'm very hypo, & when I feel very hyper (only recent) they tell me to keep taking the metavive!
I did cut down & stop T3, & have stopped metavive today completely (against the advice of endo) who suggested that I dose according to symptoms & temperature.But my cortisol is very low, so I don't see how that would get me well.
yesterday the GP was going to let me have a blood test, then changed her mind.
Every time I cut down I get palps, I am getting them now - having stopped metavive.
Endo didn't even know what ANA is never mind TRab or TSI, neither did GP, I got her to write them down, as I had felt too ill to print off the papers to bring her beforehand. Also I would have had to pay her ££££s to read them. She also said that labs would not do these, only an endo can arrange for unheard of TRab TSI & ANA. I paid GP's several times to do these in past & no one told me about these rules or why they were not done.
Needless to say my blood sugar, cholesterol & kidneys were not checked after I saw Endo. When new Dr's ignore all the relevant tests that used to be done after serious illnesses & out of range bloods -I don't think it's paranoid to get suspicious of their motives.
PS I have had propranolol prescribed on & off for 40 years. Most recently 40mg twice a day for very high BP. Now my BP is even higher, & GP could find no record of it. I nearly didn't get any, but she smirked as she wrote the prescription,& no wonder, At 10 mg it is 8 times less than when I had the 80mg maintenance dose (i.e when it was not malignant) I am using up the old 40mg at night, have 7 left, if I run out & am still ill at night, I'll call ambulance. I can't help but wonder what goes through Dr's heads. Best guess is that someone has removed the records of my severe reaction to prescribed drugs (that were banned everywhere else), & the various DR visits to my hovel & BP meds that I spent over a £1000 on in 2010/11 to treat my adverse reaction & the effect on my heart & kidneys, now ghosted, & also that she is afraid of getting into trouble with her partners?
BTW, propranolol & other drugs saved my life in 1981 when I had thyroid storm? , a locum got me the Propranolol, GP wanted me dead. Receptionist told me I had the highest levels anyone had ever seen, I think she must have been referring to T3 levels. But I was told by GP that 'hormones' don't cause symptoms & that my intolerable suffering was all in my head & threatened me with incarceration in a mental home if I asked again for a blood test. I had to give up my career on my23rd Bday & then my house in UK & return to Jersey 6 months later. The development firm I had worked for folded, as they could not replace me. I Never saw a penny from sale of my very expensive house, I would have been quids in, but was too ill to stay for sale, Husband on paper spent it all. I was penniless & too ill to work, & then homeless again, all because a spiteful alcoholic fraudster GP was jealous of my career. PTSD from Dr's excacerbates my symptoms, as does no £ for food, which now goes to GP's (never had sick pay or income support). I need to keep a cool head & rely on ambulance service from now on.
Yesterday , when the gp decided not to order TSH/fT4/fT3.. did she know you were taking metavive ?
Was she aware of you previous private Thyroid tests showing fT3 at 9 ish ?
What did she suggest you do about continuing to take metavive, or not ?
I don't think it matters what dose of propanolol you were on at some point in the past, but it matters that you are taking the right amount for your symptoms now, what dose did she suggest yesterday ?
Hope you don't need an ambulance, but if you end up in hospital , maybe then you'll get a TFT done that they will accept, but it would be no use for showing them what your own thyroid is doing if you still have additional T4 /T3 in you system from taking it orally. you'd need to be off it for a while..I don't know how long ' a while' is for metavive.
But someone else on here will have an idea if you ask.
p.s the part about "only Endo's can order TRab" rings true , i think that's usually the case here too .
I shouldn't use emojis with my eyesight. I once responded to a very serious & moving post with what I thought was a flexed bicep in an attempt at empathy & solidarity. It was a prawn 🙀
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.. and i can never find as good a way of expressing myself again as i did the first time.
that made me laugh out loud
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