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[Jenny583]

I wrote a detailed post on T UK, took me ages to write - as eyes bad. It vanished. Long story short - I was told by endo to get tests from GP. I have felt very ill so booked blood test .GP would not do them, she thought hashi's test was GD test, didn't know what a TRab or TSI test is. Only £46 this time! but at least I got a script for propranolol, after much haggling as it seems the records of 40 years of propranolol do not appear in her notes... I am done.

[Jazzw]

Was it a similar post to the one you wrote here, Jenny? healthunlocked.com/graves-d....

Hate it when posts disappear!

[Jenny583 in reply to Jazzw]

Yes & no!

[Jazzw in reply to Jenny583]

Oh well. Hopefully some of it was similar.

I’m so sorry you’re having to fight so hard for the treatment you need. It sounds awful.

[Jenny583 in reply to Jazzw]

Thank you. I cannot fight where I am. Am resigned to the fact that I must make the most of it, & get my will written ASAP, for peace of mind. x

[fuchsia-pink]

If you lose text (before posting) - you may be able to get it back with control + z

Obviously won't work now - but maybe useful in the future x

[Jenny583 in reply to fuchsia-pink]

Thanks. Will make note. x

[Jazzw]

I don’t know as much about hyperthyroidism as I do hypothyroidism but it seems to be depressingly common for doctors to not know the difference between Hashi’s and Graves.

It is of course feasible that you have both Hashi’s and Graves, which might explain why you’ve had periods of both under and over active thyroid.

They certainly shouldn’t be putting your symptoms down as anxiety given your history. It seems fairly clear to me that you know what hyperactive thyroid feels like! I wish doctors were like the ones we see on TV...

[Jenny583 in reply to Jazzw]

You are spot on Jazzw. I never had hyperthyroidism, but rather thyrotoxicosis. There is a difference it seems. I had 2 hashi's tests in the last 2 years, but I asked for GD tests as my eyesight is failing, + my eyes are damaged from GD. Dr's could not care less if I go blind, or die like my Father & his siblings from heart disease B4 putting my affairs in order. I have high cholesterol & high BP just as they had. When I mentioned that my Dad died at my age - it was taken as anxiety! No one has checked my heart, even though I had atrial flutter when 20 & after. My guess is that the medical industry has buried my records to cover up their incompetence.

[Jazzw in reply to Jenny583]

I’d like to say that was highly unlikely—but my husband’s medical records went missing after a botched surgery 30-odd years ago. Didn’t feel much like a coincidence, no matter how hard they tried to dress it up as one...

Hopefully the propranolol will calm things down a bit for you. x

[Jenny583 in reply to Jazzw]

I'm so sorry about your husband Jazzw! My husband was poisoned to death by Dr's & his medical records went missing at the very start. I will call an ambulance if I have a night like last night. x

[ling in reply to Jenny583]

Your eyesight failing as in your vision becoming lower?

Do you have thyroid eye disease?

[Jenny583 in reply to ling]

I don't know why, but yes, my eyesight seems to be failing. I had TED in the early 80's, but GP ignored it. I don't know if it can come back though.

[ling in reply to Jenny583]

TED can come back. Once it starts, it's a separate medical condition from the Graves.

Can u describe what u mean by your eyesight failing?

[Jenny583 in reply to ling]

I know. I tried to tell Dr's for years, & asked for TRab & ANA, but lab don't do these, but I was only told this recently. Eyes are sore, aching & vision is increasingly clouded, but no lid retraction unlike when young.

I have all symptoms of active graves again too. Not taking any T3/4.

I was fined by a traffic warden about 3/4 years? after starting carbimazole as I had to stop car on yellow line on way to client till my eyesight cleared! I don't know if that was TED or if migraine - which I had started getting as I got increasingly hypo.

[ling in reply to Jenny583]

Eyes sore as in they are red in color?

How's your BP?

U mentioned u had tests done last 2 years. What were the results?

[Jenny583 in reply to ling]

Hi ling,Sometimes eyes were red, very red when I saw GP, they are better today, but still feel sore, with pressure & headache, BP much better now, but high BP at night, lower by day, right now at 2pm 148/83.Printouts started in 2017 with TSH 1.5, then .88, then .81, then .35, then I started 5 mcg of very old liothyronine donated by friend, then when these ran out after a year, I started metavive & after increasing to 130mcg TSH dropped to 0.02, (range 0.50 - 5.0) - & mostly stayed there if my FT3 & FT4 in range, FT3 was around 40% on 2 max dose metavives, FT4 much lower. B4 this in the 1st year (when I was just taking 5 or more mcg lio) both FT3 & FT4 were right at bottom of range, just as B4 I started self medicating, I had to take last dose on day of test in order to get out of bed & go to GP though, so probably was really under range. All the time TSH was inapropriately low with very low FT3/4 & no functionality. Took vitamins which included high dose biotin until January 2018 when I started individual vitamins including very high dose biotin, so possibly skewed tests.

When stress levels were high or if I omitted high dose biotin for 2-3 days B4 test -FT4 would appear as under range. I started buying finger prick tests from UK lab in November 2020 as Endo & GP had abandoned me, & health was deteriorating, by then I was taking both Tiromel & metavive, & seeing that I could not obtain any more Tiromel I needed to judge what dose of metavive I would need to take, & resolved to gradually reduce then stop T3, while testing every 7 weeks via FP.

1st test (Nov) showed optimal T3 while FT4 at 19% TSH = still suppressed. Lab alerted me to low TSH, I emailed back explaining effect of T3 on TSH. I did another test 7 weeks later on a lower dose of Tiromel - from 25mcg to 18.5. The FT3 was still over range, but I had trouble getting blood out & thought maybe blood damaged, but reduced to 12.5mcg Tiromel. Then Endo summoned me & told me FP tests don't work, & that I should keep taking the metavive & to judge by symptoms & not to get any more tests, this was about 7 weeks after my last FP test. Then I got test at phleb & FT3 was even more over range 9.0 (4.3 - 8.1) & cortisol on floor. I have stopped all thyroid meds & have no way of knowing if T3 levels will continue to climb or if they will drop.

Sorry for rambling but I can't find the printouts! basically I was hypo for near 40 years & found Tuk & hopefully have flooded thyroid receptors with T3 through advice & self medication - OR my graves is back after 40 years. Never been allowed T4 just AD's.

[ling in reply to Jenny583]

I'm kinda confused.

So it all started with Graves, you were over medicated on carbimazole and became hypo, and have been hypo ever since?

The GP saw your red eyes. What was the diagnosis?

[Jenny583 in reply to ling]

Yes, that's right.I had graves 40+ years ago, I moved to UK for 2nd time at 20 yo as I was too ill to stay here where I was born. I 1st moved to UK at 16, & forced back at 18 for 2 years. I must have had GD for years. It took 2.5 years B4 I got treatment during my 2nd exile in UK, 6 months later GP told me I was incurable in UK & told me I would get help back here in Jersey. He handed me a carrier bag of carbimazole & propranolol, & did not forward medical notes.

I managed to get another 4 years of carbimazole in Jersey when I ran outt - via Mums private GP, then stopped. Dr's don't acknowledge my history, & I was never offered treatment for the ensuing hypothyroidism, which new GP agrees there is still record of.GP didn't notice red eyes, but they are better than they were now, + I have spent £100's going from GP to GP to try & get someone to look at them over last 2+ years, but they are not interested. I won't mention them again though, & will stay away from Dr's from now on.

[Painwork in reply to ling]

I had thyroid eye disease spotted by my optician! I had a private consultation with an eye surgeon and follow up treatment on nhs. The best money I ever spent. So try the optician route!

[Jenny583 in reply to Painwork]

I tried that route but I was overcharged, & yet the optician was away! the receptionist just checked my reading range!

[Jenny583]

The prescription for propranolol which cost me £46 is only 10mg! enough for about 2 nights of malignant hypertention then! Is this a prescription only drug I wonder.

[humanbean in reply to Jenny583]

Propranolol is a beta blocker. And all beta blockers that I've ever heard of are prescription-only in the UK.

[Jenny583 in reply to humanbean]

Thanks humanbean, thought so.

[ling]

Could you post your results from the last 2 years, including the test dates and ranges?