After going over T3 range a few weeks ago, ( local test) I stopped the Tiromel & metavive for a few days. I then resumed 3/4 of the previous dose of metavive but no more T3. I will keep the T3 I have for emergencies.
I feel dreadful, I don't know what to do, I had hoped that the FT4 would increase, (with only being on bovine metavive) but it is now on the floor, & TSH is still very low, just double the almost 0 it was.+ I don't know if 35% FT3 is any good.
Should I increase to 2 X whole IV capsules in a split dose - say AM + PM? currently on half a capsule at 4.20 AM, 12 PM, 6 PM.
Any advice as always much appreciated.
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Jenny583
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I’m sorry your post seems to have been missed. I am unable to comment on your problem. So many post have the title ‘blood results’ it doesn’t give much of a clue. I would suggest you edit the title to sum up the problem and attract the attention of some of the experts!I’m sorry you’re feeling so unwell.
It's very difficult to say anything definitive as you are taking a product sold as a supplement and that details no measure of breakdown of it's contents.
I understand you need to dose to the relief of symptoms and do know that finding one's optimum thyroid hormone replacement can be a long slow business and the target can move depending on one's reason for being hypothyroid.
Conversion of T4 into T3 can also be compromised by low ferritin, folate, B12 and vitamin D, and any physiological and emotional stress , inflammation, depression, dieting and ageing.
The TSH is the least important measure of anything once on any form of thyroid hormone replacement and taking anything containing T3 will lower a TSH :
I take NDT and my T4 is much lower than when of T4 - Levothyroxine BUT my T3 is much higher and I feel better than I was : in fact on NDT my T3 and T4 have actually swopped places in the ranges as now my T3 is 110% and my T4 25% :
I think it's wise to stop the synthetic T3 until such time as you are as best as you can be on the supplement :
Would it be an idea to switch to a T3/T4 combination as then you'll have an idea of what you are taking and the maths might just sit better to work from and adjust T3 and T4 independently.
I do not take T3 any more, I only took a small dose for a while when 0 else was available to keep me alive. I have central hypothyroidism, & so am unable to obtain thyroxine or anything else. I have been advised by everyone including the Endo to take metavive, but the new formulation does not seem to agree with me.
Like you, I go high range T3, & low range T4, & when stress lessens, the T3 keeps going up, with no way of knowing if graves has come back, & I cannot obtain TSI or TRab or even TG anti b tests at all.
Having said that I have now increased to 2 x IV bovine capsules as before I decreased. But I will no more take T3 even though I felt good on it. Metavive does not suit me, but Dr's still accuse me of taking T3 - as even metavive suppresses TSH, & I still feel very hypo even though FT3 in range, but Metavive is all I can get. TSH is usually 0.01 if T3 is more than 1/3 in range. Dr's know my TSH went low Before I started self medicating. I was half dead!
I have very low cortisol, also worsening problems of something else (probably Sjogren's).
I managed to obtain (at great expense) 3 months of HRT, & came across some old Nasonex (which contains cortisol which enables me to stay awake during the day on those days I use a half dose ( just now & again). It also enables me to breath through 1 nostril for 24 hr's.
I convert too much T4 to T3, & do not seem to produce any T4 of my own, perhaps because I don't produce much TSH? I am not 'primary hypothyroid'. But still even though I have been hypo for decades ( which GP now admits) - no Dr will prescribe anything. I may appeal for online sources of levothyroxine, but is there a market for it though?
Graves doesn't go away - it's an auto immune disease - has it ever been diagnosed with positive and over range TSI ( thyroid stimulating ) and or TR ab ( thyroid receptor blocking ) antibodies in your blood and AT medication prescribed ?
Graves is considered life threatening if not medicated ?
I have Graves Disease and was negetive for Sjogrens through a lip biopsy : my issues were all caused fro the RAI treatment though no NHS medic will confirm my suspicions.
You say you are with central hypothyroidism - has this been diagnosed and treatment instigated ?
You can buy most things through the internet - there is a market and I buy NDT which contains all the same known hormones as that found in the human thyroid gland with each tablet/grain including a measure of T3 @ 9 mcg and a measure of T4 @ 38 mcg so roughly a 1/4 ratio which, thankfully, seems to suit me.
My T3 and T4 numbers are constant with the dose I take and stay within around the top of the range for T3 with my T4 around 25% through :
I am now into my third year : my temperature now hovers around 36.6 from 35.4 on Levothyroxine and my blood pressure and pulse remained constant throughout the transition from Levothyroxine to NDT.
I had symptoms of Graves from at least age 14. I had bad kidneys from that age. For years I was told off for having 'stress hormones' & bad kidneys. I didn't drink or drug.
When i was 20 I lost strength in arms/shoulders, then I couldn't wear shoes, or do up trousers. I went from under 6 stone to 7 stone in 2 weeks. At 22 I had extreme tachycardia, arrythmia, high BP, weird hair, nails coming off, blackouts, blue lips, eye disease, breathlessness, insomnia, peeing & thirst, blackouts ,also unbearable restlessless, & speech so fast & stuttering that I could not speak to GP. GP threatened me with mental hospital, & accused me of being a drug addict. I had only told him about the palpitations, insomnia & shaking. I was told by lay women that I had thyroid problems, but I didn't dare tell GP what i was told.
Then I started getting blackouts, I went back to GP, but was blackmailed into abandoning my wonderful job & take up cleaning B4 he would test me.
I resigned my position, the symptoms were by then unbearable, I needed relief. GP insisted I take up cleaning - or else.
I could not work at cleaning, no strength, by then almost paralysed, so only lasted a day or less, even though I was taken on at those firms that no one wanted because of the harpies that were there already! I felt sorry for the bosses, but i was so weak that I could not even move a hoover junior vacuum.
Then GP told me all my symptoms were caused by stress (of my own making), then casually mentioned that I had a hormone thingy, but that it produced no symptoms.
I then phoned surgery. Receptionist breathlessly exclaimed that no one had ever seen such high levels. I didn't ask what she was talking about, by then I was thoroughly drowned in shame, & seen as neurotic. I figured that whatever was in blood was proof that I was insane. I told no one about my 'health', & was told nothing either. But a locum let slip that i had something called 'thyrotoxicosis', then the gp promised relief of my symptoms, but only IF I actually managed to secure a job cleaning. I started work on 1st january 1981, on that day I was allowed to commence treatment with carbimazole. A locum insisted that I be allowed propranolol too. The GP reluctantly agreed. I only had 2 blackouts that month.
1st aid team carted me off on a stretcher, then told me it was my kidneys, & that I failed 1, 2, 3 tests when I had the medical B4 I commenced employment.
I don't even recall a medical, but they were under pressure to get anyone to work there, & staff were threatening to riot if position was not filled.
I soon discovered why no one would work there...
Then GP sent me to hospital for tests, said I had thyroid storm. I still don't believe I had this however, but it was 1981 so... then GP told me that I had to return to Jersey. I was handed a carrier bag of drugs. I returned with just the rag on my back & the drugs.
When I got back I found I could not hold a job down, as I was getting very weak again. There were no clever Dr's here as the Gp had claimed. The cardiologist had just retired & there were no Endocrinologists. No one stocked carbimazole. I phoned every GP in island. No one but my mums GP would take me on.
He had not heard of carbimazole, but i showed him my drugs. He believed me & ordered some in from UK through a chemist, (none in island) & so I continued on max dose carb for 3 years, & propranolol for another 2 years.
After 3 years my eyes were good enough to drive again, & strength returned, but I was very sluggish. I managed to get an appt with a hospital Dr who agreed to blood tests every 2 months. Another 18 months? later the 1st endo arrived on island & by then I had been allowed to cut down on the carbimazole. He warned me not to stop, but I insisted, I was just so ill. I didn't know I was hypo, I just knew that it was the carb.
He said ok, but you have these %'s of relapsing after various times. I don't think he realised how long i had been on the drugs, or the dosages i was on, or the effect on my brain & body. At 28 yo I had to have an operation. I now know that was from being hypo. I never did get the thyrotoxicosis back, nor my brains, career or ability to work.
So as my scribblings keep disappearing! I will now bullet point the following:
.kidneys
. paralysed eye lids, + gritty & sore. left eye more damaged + peripheral vision bad.
. very fast heart, with intermittent increasing speed to point of collapse.
. thirst & frequent trips to loo.
. insomnia, hunger, & energy for 3 years or more.
.dissociation & hallucination, with no memory of.
.fine thin frizzy hair that went almost white at 22 yo.
.nails coming off.
.staring eyes & lid lag at age 22.
.swollen midriff & feet at 20 yo.
.extreme unbearable restlessness for 3 years.
.high stress hormones & BP
.loose bowels & slightly swollen neck.
.headaches, & muscle weakness.
.palpitations & intermittent sweating with shaking. Not feeling cold for 3 years.
.Acute hearing & frequent bronchial infections.
That's all I can think of for now.
Does this sound like Graves? or something else.
I am sorry you had to have RAI. It sounds grim!
Did you manage to get ANA test for sjogrens then?
I can't get tests for anything. been trying to get tests for ANA for years on account of my eyes. They must have records at hospital here, as I saw eye dr when in my 20's. He told me they are damaged. i really must get on with applying for records.
I wish I could get my temp up as high as yours. i'm still wrapped up like an eskimo. Temp is low but fluctuating a lot with an average of 36.
No Dr will officially give me a diagnosis of "central" only in last year i am labled hypothyroidism. But that's just a word on blood test request forms. But I have reports from b4 I started self medicating that show TSH FT3 FT4 pointing to central, plus the fact that Dr's go to such lengths to avoid the tests that would confirm, which suggests they are trying to bury me alive. Also when i was very ill & started getting TFT's - even though I was taking extremely high dose biotin up to day of test - all 3 were scraping bottom of range. When on a couple of occasions I was too foggy to remember the biotin for 2-3 days & had an unexpected blood test - even though I took extra dose of either metavive or T3 on day of test or during night - i would be under range on paper.
I read this the other day, it sounded so eerily familiar. (Thyroid patients canada, 23 years misdiagnosed central hypothyroidism)
So now I suspect that I had graves, & in the absence of now graves symptoms & with the low temp & 6 1b weight gain in 3 weeks I can only suspect central .
If I can't get hold of affordable Levo online, I will try Ndt - if I can't get it then I'm stuck on metavive. some are saying that metavive's nucleotides should not be taken by those with auto immune issues.
I couldn't really just press the " like " button as there's not much there that is pleasant to read - and I'm truly sorry for the lack of care and understanding you have been put through :and help
I remember now, we have spoken before :
I've nothing to add but to wish you as well as any of us can be with thyroid health and understanding by the medical profession being an uphill challenge for all of us.
I'm sorry I sound so negative, but I rely on those on HU who have won through & found solutions to those "uphill struggles", so I have to be thorough in my history,(which is also my record ) not just brutally honest. I appreciate your well wishes, and I wish you the same.
I have central hypothyroidism, & so am unable to obtain thyroxine or anything else.
Why is that? My understanding is that Hypothyroidism is treated the same, whatever the cause. Obviously with CH, where the problem lies with the pituitary or the hypothalamus, then investigations into whether anything needs to be done there is needed.
Is your low cortisol being addressed?
Levothyroxine is possible to obtain without prescription, some of the T3 suppliers also supply Levo. You will need to make a new post asking members to send you information in a private message.
I don't live in the UK, so the usual rules don't apply. I only got fertility tests out of all the pituitary tests that i should have had, & was told I had but never got. & needless to say no DHEA, or scans. I think it's tertiary though. The fertility tests were normal 2 years ago, I was 61, I then had a short synacthen test soon after when my cortisol was normal, I was on steroids & under a lot of stress at the time, & my cortisol doubled (not surprisingly), but the (half what is was) cortisol test that was sprung on me in February is ignored - as are all out of range tests, The 1st Endo also lied, & even sent a letter to say my pituitary & celiac tests were normal (the tests that were never done that is). Endo was going through the motions, but GP's were ignorant, & sided the Endo's.
They always ignore, & then don't repeat those tests again that are accidently found to be suspect/out of range, so they avoid them now! also I can't make appt with the Endo, only with GP, & she is not allowed to test! so £46 -£66 wasted if I see her.
Examples of problems that laid me low in past that were routinely tested even though not treated or informed of, Kidney, B12, folate, vitamin D, iron, ferritin, graves disease, hypothyroism, high cholesterol, infections, spinal wedging, high glucose, allergies, electrolytes, dangerous reactions to toxic buildup of inappropriate prescription drugs, malignant hypertention, dermatological conditions. & probably others that I know 0 of B4 I discovered printouts.
I have seen the same pattern over the years, it's obvious they have no intention of helping.
Thanks for the encouraging news about online suppliers Susie. will see how I get on with the 160mg metavive for the next 7 weeks & take it from there.
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