Hi,OH (65) has been feeling really fatigued the last few months, also really feeling the cold.
Treated with radioactive iodine 14 years ago and been on 100mg of levothyroxine ever since.
He had a prostatectomy last June and we had put the tiredness down to that.
A recent blood test has put his TSH high - 6.4, before that ranged from 0.1 to 1.5
The doctor has put him on an increased dose of 125mg. I just wondered what people thought to increasing the dose after all this time - the doctor hasn't suggested looking for any cause of the TSH increase.
Thank you
Written by
Vickyswift
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Have his iron, ferritin, B12 , folate and vitamin D been tested recently? Having had surgery a few months ago he could have had an anaesthetic of a type that reduces B12 (I don't know how common this is nowadays), or lost a lot of blood and could be anaemic.
Well I had RAI thyroid ablation in 2005 for Graves Disease and my TSH never recovered and is stuck down below the range :
What was the reason your husband was treated with RAI - post cancer surgery or Graves ?
RAI is a slow burn and the dose not as exact as one might think but ultimately the thyroid becomes fully burnt out in situ and the gland rendered totally disabled and the patient totally reliant on thyroid hormone replacement.
Since most patients seem to be left under medicated rather than over medicated I wouldn't worry too much but once on thyroid hormone replacement -
one must be dosed and monitored on the Free T3 and Free T4 readings and not a TSH seen in isolation as is what appears to be happening.
T4 is a pro-hormone and needs to be converted in the body into T3 the active hormone that runs the body from one's physical ability through to ones mental, emotional, psychological and spiritual well being, ones inner central heating system and ones metabolism.
Conversion of T4 into T3 in the body can also be compromised by non optimal levels of the core strength vitamins and minerals -
so it might make sense to also ask the doctor to run a ferritin, folate, B12 and vitamin D as well as a TSH, Free T3 and Free T4.
If you doctor can't help you - Thyroid Uk - the charity who supports this patient to patient forum can - thyroiduk.org
and has a page dedicated to Private Blood Test companies and many forum members are forced to go this route and we then can advise and talk you through what it all means and your next best steps back to finding your husband some better health. as just being in a NHS range is not optimal with some ranges being too wide to even be sensible.
Thanks so much for your replies - really helpful. He doesn't take any other medication, no change in diet.He had the treatment for Graves disease. Everything stable for 14 years so really wanted an understanding of the sudden change.
A more detailed blood test seems a good way forward, the GP won't even talk to him on the phone so I'll have a look at the private blood tests and see what we can find out.
I was fine after RAI for around 8 years and then became increasingly unwell and actually when I started researching Graves as my doctor was nor interest and just offered me anti depressants and adjusted my dose of Levothyroxine down which compounded my ill health everything further.
You might like to read around this poorly understood and badly treated auto immune disease - for which there is no cure :
Essential that your husband has a full thyroid panel with the vitamin and minerals run as detailed earlier - it's where we all need to start off from as we reclaim our health for ourselves.
Both Medichecks and Blue Horizon offer a nurse home visit to draw the blood if that makes more sense for you - it's at an extra cost, but takes the stress out of the whole thing -
Arrange an early morning blood test for the beginning of the week - and you'll likely have the results back before the weekend and then just pop all the results and ranges on here in a new post with a brief summary of your husbands situation.
Stop any supplements around 7 days before the blood test so we measure what the body is holding rather than that just ingested.
Fast overnight and just taking in water - until after the blood draw -
and do not take the daily T4 - Levothyroxine until after the blood draw - so again we measure what your T4 store is - and not the tablet that you have just taken.
I think that's all I need to remember to tell you tonight - as I'm way past my best before time of day !!
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Sorry - I totally forgot to mention that my TSH had also shot up at around 7 years post RAI thyroid ablation to 11.4 and then at the following blood test had fallen back down to where it normally sits which was and is now I am optimally medicated under the bottom of the range at 0.01.
Sorry to jump in but I would be interested to know how you get on with a suppressed tsh. To me it doesn't matter, mine is 0.07 and endo won't endorse any increase in either T3 or T4 due to risk of heart and bone problems in the future. I'm tired and done with trying to get optimal. Would I be better to open my own thread? X
You choice if you want to ask more - my thyroid journey is on my profile page alongside everything I 've ever written on this forum if interested - just press the icon alongside my name.
Vicky, as I had trouble getting my GP to talk to me, never mind order adequate blood tests, I ended up writing to the surgery. My letter included the following, which worked for me ...
"I am now due a blood test to check my thyroid hormone levels. Please can I have a blood form for this?
Thyroid UK (who support people with thyroid disorders) also recommend that patients should have annual blood tests to check the levels of
Vitamin B12
Vitamin D
Folate serum
Ferritin
These haven’t been checked for me at any time in the 3 years I have been under treatment for my thyroid issues, even though I have been previously diagnosed with low vitamin D levels.
As I haven’t felt entirely well since starting on the levothyroxine, I would be grateful if you could also please issue a blood form for the above, so we can try to track down where my problems may lie. "
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