Sorry the post is so long but wanted to give you the full history!
I started with underactive thyroid about 10 years ago and was treated with thyroxine.
Four years ago I started to get swellings in my clavicular area, armpits and groin and was in considerable pain and could not do anything physical.
My GP tried various treatments from water tablets to anti inflammatory tablets with no success. After a year of pain I was dismissed by an endo at BUPA as nothing to do with thyroid.
I heard about Dr P and he cured me with Nutri adrenal and Nutri thyroid, my swellings and the pain disappeared and I was able to exercise again.
My GP retired and early this year my new GP after seeing my blood levels instructed me to stop taking thyroxine and Nutri thyroid. Levels were FT4 34.2 (12.0-22.0) TSH <0.05 (0.30-4.20), FT3 not tested but on prior test was 7.7 (4.0 – 6.8). After a week I got him to put me back on thyroxine but all the swellings and pain came back.
After a couple of moths of suffering I went to see another endo on BUPA who did various tests and tried T3 and T4 but I showed no sign of improvement. He then put me on Armour FINALLY and pain and swellings started to improve. As soon as you start on NDT you are not covered by BUPA policy so now it is costing me a fortune!
After finally getting to 2 grains of Armour my first blood results were FT3 4.8 (4.0 - 6.80), FT4 12.3 (12.0 – 22.0), TSH 0.11 (0.3- 4.20) but I had taken Armour the day before the blood test.
I am not perfect and still struggle to exercise so for the next test I did not take the medication for 2 days before (did not tell the endo this) and my bloods are now:
I was hoping the endo would increase to 2.5 grains but he says he will not as my TSH reading is better. I am seeing him again in January, should I not take for 3 days before bloods?
I was after advice as I have some from USA should I increase to 2.5 or try and persuade endo to increase? I am tempted to stop going and self medicate in the future but don’t want to put myself at risk.
Wedding2000, 24 hours between last dose and blood test is sufficient to get an accurate measurement of circulating hormone. TSH is usually suppressed by the T3 in NDT but It looks as if your endo is more interested in getting your TSH in range than addressing your below range FT3 which will be causing your hypothyroid symptoms.
I think you need to increase to 2.5 grains but it is up to you whether you wait until January and persuade the endo to increase your dose or whether you self medicate. As long as you have regular blood tests to ensure your FT3 doesn't rise above range you won't compromise your health.
Thank you. I don't think he will increase it based on original bloods when I left it 24 hours after dose as they were within range and TSH 0.11 although I obviously need higher range FT3 to feel well.
I am sorry that Endo insists on the whereabouts of the TSH rather than how you feel. This is a link and it's how we used to be treated before the blood tests.
Dr Lowe has since died and his site archived but he would never, ever use T4 for his patients. Only NDT or T3.
The main point he makes is that as long as we don't feel overstimulated, that's the main point. Blood tests are meaningless when taking NDT. They are only used as a guide not for diagnosing.
Thank you. I didn't realise about waiting 1 hour after food before taking so my lunchtime one maybe messed up. I do not think I am overstimulated AM pulse 69 temp 36.3 BP 120/68 PM pulse 77 temp 36.7 BP 123/70. I feel tired and achy most of the time and still some pain and swelling in lymph nodes. Is the only way around this to self medicate then get private tests done to check FT3 isn't above range, and then stop NDT 2-3 days before GP or endo insist on blood tests? I am so much better on NDT but just want to get back to where I was.
When it is recommended to wait about 1 hour before food, that's for breakfast time. If you take food at any other time, there has to be a gap of at least two hours either side to allow for the stomach to be empty. Females stomachs take longer to empty than males. Taking medication first thing in the morning means that your stomach is empty for better absorption. Also if taking it at bedtime, leaving 2 hours after eating means that your stomach is more or less empty and has more absorption throughout the night.
Shaws yes thank you I have been doing that for the last 2 weeks, just really panicking about pulse standing today. Temp this AM 36.5 and I had the worst panic attack in my life last week (1st for about 3 years) I couldn't pick up the glass I was shaking so much I spilt most of it. I went into a pub to meet someone and ordered a drink before they arrived. People watching me and I had to say I was an alcoholic to explain the shaking, I had to leave as I couldn't pick it up without spilling it. So embarrassing I don't want to go out ever again. I left straight after so didn't meet my friend had to make an excuse. I am sure I am hypo but concerned about pulse, someone has posted noradrenaline, which is being secreted to compensate for the lack of thyroid hormone. tiredthyroid.com/feeling-hyper-when-hypo.html what do you think? Will I ever get better?
You may be on too low a dose. When I was on levo I was forever in and out of the A&E with palpitations. Had umpteen investigations. Heart was fine.
It's sounds as if you had a panic attack and that can sometimes happen as well when our hormones go wonky.
Clutter advised you to raise your dose but I assume you didn't. I don't pay too much attention to blood tests myself now as I am doing fine on T3 only as I did on Nature Throid. The blood tests for NDT and levo cannot be compatible.
I, more or less, follow Dr Lowe's protocol. Link below:
I hope you don't have such an attack again as it is awful if you're on your own and those sensations arise. If they've not happened before you have no idea what's going on.
I am seeing endo in 2 weeks so will wait and increase then, hopefully he will be for it. Thank you.
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