I'm extremely angry. I spoke with my endocrine nurse about 2 months ago as I was feeling tired. She refused to do bloods as I'd had them done early March and all was fine.( Full thyroidectomy 10 years ago). I argued the toss with her but she flatly refused. Told me to see gp.I left it for a while to see if was all in my head, but gradually the tiredness has become worse. I'm sleeping but waking like I've not had an ounce of sleep. Falling asleep all over the place. I did a private blood test for vitamin D came back normal. Bought high strength vit B12. I went to GP last week had full bloods done. Was thinking yesterday b12 not working. That usually takes effect in 2 days. Went online this morning. All OK apart from TSH 0.09😡
To say I'm angry is an overstatement. The result is useless on its own. Gp won't test T4 or T3. Shows I'm down for a call from pharmacist. That'll be an interesting call. I've now put a message to endocrine nurse again. Let's see what she has to say!!! More time feeling rubbish waiting for her to get back to me.
Rant over!!!
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Jules2194
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Looking back I see you contemplating seeing a certain lady from the Thyroid UK list - did anything come of this ?
Are you still on T4 monotherapy ?
A TSH seen in isolation, especially when there is no thyroid is a very unreliable measure of anything and depending on your cancer diagnosis you may need to keep the TSH low suppressed any way :
But yes, you must be dosed and monitored on your Free T3 and Free T4 readings and we generally feel better when the T4 is on the top quadrant with a T3 tracing behind at around 60% through it's range.
Have you stopped the Propranolol as that is known to down regulate T4 to T3 conversion ?
What can we help you with - other than suggesting you get private blood tests run and we advise you on the results ?
I know it goes against the grain and not what we expect from the NHS - but what is one meant to do when so unwell and it appears there is no help nor understanding.
Are you still taking propranolol. This significantly slows uptake and conversion of Ft4 to Ft3. if yes…..how much per day ……You must NOT stop propranolol suddenly…..has to be weened off incredibly slowly
Thanks for your replies. I had cancer. Its 10 years next month and still battling with levels. I don't take propranolol anymore. I take 5mcg T3 twice a day and then alternate days levo 75mcg and 100mcg.I just wish they'd listen. Looks like I'm going to have tovresort to my own private testing like suggested . I'll see if I get a response from the endocrine and take it from there.
I did see a functional medicine lady in thyroid uk list. Got absolutely nowhere after spending a fortune.
Many people find Levothyroxine brands are not interchangeable.
Most easily available (and often most easily tolerated) are Mercury Pharma or Accord
Mercury Pharma make 25mcg, 50mcg and 100mcg tablets
Mercury Pharma also boxed as Eltroxin. Both often listed by company name on pharmacy database - Advanz
Accord only make 50mcg and 100mcg tablets
Accord is also boxed as Almus via Boots,
Many patients do NOT get on well with Teva brand of Levothyroxine. Teva is lactose free.
But Teva contains mannitol as a filler instead of lactose, which seems to be possible cause of problems. Mannitol seems to upset many people, it changes gut biome
Teva is the only brand that makes 75mcg tablet.
So if avoiding Teva for 75mcg dose ask for
50mcg tablets to take……50mcg plus half a 50mcg cut in half to get 25mcg
But for some people (usually if lactose intolerant, Teva is by far the best option)
Aristo (currently 100mcg only) is lactose free and mannitol free.
If a patient reports persistent symptoms when switching between different levothyroxine tablet formulations, consider consistently prescribing a specific product known to be well tolerated by the patient.
Physicians should: 1) alert patients that preparations may be switched at the pharmacy; 2) encourage patients to ask to remain on the same preparation at every pharmacy refill; and 3) make sure patients understand the need to have their TSH retested and the potential for dosing readjusted every time their LT4 preparation is switched (18).
I found Viatris T4 lactose free on this thyroid UK document … not listed as T3 here. helvella might know (top of page 8) thyroiduk.org/wp-content/up...
You are only taking 87.5 levo daily is that right plus 10 mcg T3. I too had my thyroid removed for the same reason as you 8 years ago. I have worked out that I require approx 53 of T3 per day. Converted either from Levo and T3 or NDT. This is what keeps me well.
It's hard to work out what you require but it sound to little to me. It depends if you have anything else wrong with you too. Low vitamins and minerals, perhaps.
When reading the instructions on my new Levo it states that people without a thyroid require 150 levo. I work that out at around 60 T3 per day but I know that it's too much for me. My conversion is around 40% per 100 Levo.
Its 75mcg one day levo and then 100mcg next day and each day 5mcg t3 morning and then 5mcg 6 hours later.
All sounds complicated. After all this time I still don't know what I really need. I was doing ok but then it's just gone pear shaped. This keeps happening but endo not interested
Yours works out at 87.5 not daily I typed the wrong thing. You are still not taking much for someone without a thyroid. Just 10 T3 is a very small amount to. It's not complicated at all but it does depend on the conversion. I have no gut problems but people with it usually do not convert the same. When you say ok what do you mean exactly. I just treat myself but I live in France and can get Levo and T3 easily here.
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