had full thyroidectomy and neck dissection in May 2022 which removed 24 lymph nodes and 2 parathyroid glands as well. All good, apparently now cancer free. Was not able to have RAI as had apparently had thyroiditis (picked up when thyroid examined post op).
Was on 100 mg levothyroxine and felt like a new woman., joined a gym and gradually lost 10lbs. Still under consultant annually now.
GP prescribed meds said as he is issuing the prescriptions he will determine and has reduced to 75mg. I am struggling with brain fog and lack of energy, feel like I have no fuel in my body and gym/ walking feel like I am running on empty. Have 12 days left of this first 2months of new dose.
Had a blood test recently and he wants to reduce further to 50mg as he says tsh levels too low I understood they had to be low to prevent cancer reoccurring. I feel trapped between gp and consultant and completely exhausted with no energy to do anything.
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Didntexpectthis
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GP's have limited training in hypothyroidism and are taught that a low TSH is a very bad thing, which it isn't. Did your Endo give any instructions for your treatment? 50mcgs is a starter dose and won't be enough for someone without a thyroid.
Do you have a copy of your latest blood results that you can share with us? You are legally entitled to this, ask at GP reception. In England you can get the NHS app and ask for permission to see your blood results on that.
When hypo we get low stomach acid which means we cannot absorb vitamins well from our food, regardless of a great diet. For thyroid hormone to work well we need OPTIMAL levels of vitamins. Have you recently or could you ask your GP to test levels of ferritin, folate, B12 & D3? Private tests are available. thyroiduk.org/help-and-supp...
will do re vitamins. TBH it as all be plain sailing (other than being in hospital for 6 days as low calcium levels) until recently so I had assumed I was a lucky one. I know GP not an expert as I had to remind him about TSH levels and reoccurrence of cancer.
After my thyroidectomy for cancer back in 2015 my Professor surgeon handed me a letter for my GP also one for myself. It states that my TSH should always be supressed. This is France and things are different here. I felt unwell on 100mcg Levo 6 months after my op.
What about trying your surgeons, secretary. He or she must have an idea of what you should be doing to help yourself i.e. Endo or GP It's worth a try. You could with luck get a letter expressing your future dosage or suppression. It's weird but not many people like to question a surgeon or professor. I do.
thanks all My surgeons boss is the Endocrinologist at Barts so I will call her. Guess everything happened quickly & as I have felt fantastic since, apart from needing speech therapy I haven’t really bothered looking into the detail - I have a busy job (self employed) , four kids, a sick mother 200miles a way and I just try to get on with things and don’t want unnecessarily bother the NHS as it is at breaking point. My gym is pilates - so not energetic and a bit of swimming.
Hello Didntexpctthis - neither did any of us - and welcome to the forum:
A fully functioning working thyroid would be supporting you on a daily basis with trace elements of T1. T2 and calcitonin + a measure of T3 at around 10 mcg + a measure of T4 at around 100 mcg. - with T3 said to be around 4 times more powerful than T4.
Since you haven't a thyroid your TSH is not reliable measure of anything and yes, it's is recommended that for some health issues, for a certain length of time the TSH should be kept low/suppressed, which generally happens anyway, when optimally medicated.
T4 - Levothyroxine is basically inert and a prohormone and needs to be converted by your body into T3 - the active hormone which runs the body and it is low T3 that causes the symptoms of hypothyroidism, some of which you mention.
It is essential that you are dosed and monitored on your Free T3 and Free T4 blood test results and we generally feel at our best when our T4 is up in the top quadrant of the range as this should, in theory, produce a good level of T3 at around a 1/4 ratio T3/T4.
In order to convert well the T4 into T3 we do need a strong core strength of optimal levels of ferritin, folate, B12 and vitamin D.
Everywhere I researched suggested ferritin needed to be at least over 70 for any thyroid hormone replacement to work well - and now, I know I feel better at around 100 with folate at around 20, active B12 75 ++ ( serum B12 500++ ) and vitamin D at around 100.
Some people can get by on T4 monotherapy - Levothyroxine only:
Some people find that T4 seems to stop working well and need the addition of a little T3 - to restore hormonal balance, likely simply replacing that lost when they lost their thyroid.
Some people can't tolerate T4 and need to take T3 monotherapy - Liothyronine only :
Whilst others find their health restored better taking Natural Desiccated Thyroid which contains all the same known hormones as that of the human gland and derived from pig thyroids dried and ground down into tablets referred to as grains.
Currently in primary care your doctor can only offer you T4 - Levothyroxine - and maybe not even able to arrange what you need, which is a full thyroid panel to include a TSH, T3 T4, inflammation, antibodies, and ferritin, folate, B12 and vitamin D.
Many of us are forced into arranging private blood tests, and once we have the above results and ranges we can then explain the results to you, and advise on your next best steps back to better health.
If you go into Thyroid UK the charity who support this forum there is a page dedicated to Private Blood companies - thyroiduk.org
I'd suggest you reduce down your exercise as this will be depleting your T3 faster than just say, taking a walk and the brain takes an awful lot of T3 just to function and think clearly - so you are also noticing signs of that awful brain fog - but don't worry - it will get better than it is now once we have a full set of results and can offer you considered opinion.
The TSH is not a reliable marker but GPs are taught to go by this measure.
The TSH is a pituitary hormone which tells the thyroid to work harder / work less. It should be a reflection of your thyroid levels, & increase production if FT4 & FT3 low (TSH should rise). or TSH should reduce is If FT4 & FT3 high. but it can be an extremely unreliable.
Low TSH prevents stimulation of any residual thyroid cells, but this should be achieved by good levels of FT4 & FT3. In top part of range and not over range.
It’s possible with a low TSH the the FT4 & FT3 are still low which will give you hypothyroid symptoms. I suspect on the level of replacement you would be more likely to be hypothyroid.
You need to ensure you collect your own results & advocate for the right level of treatment because management by GP understanding can fall short.
If you had undetected thyroiditis prior to surgery then it’s possible your thyroid function was previously affected. In early stages of autoimmune thyroiditis the immune system attacks thyroid & thyroid cell release hormone stores causing a temporary rise & fluctuation in levels, over time the damage results in reduced function.
This affects both thyroid levels and can sometimes alter how the TSH regulates levels.
Ive not heard of thyroiditis being a factor against RAI as an additional treatment for cancer but many decline RAI and see it an over treatment.
If you have had thyroiditis and/or hyperthyroidism (overactive thyroid) in the past it will reduce your TSH to very low levels - usually well under the reference range. If it went on for a long time your TSH might never rise again, even after having your thyroid removed.
If that happens your doctor can never rely on TSH again as a way to dose. But since doctors are told that TSH is always perfect they continue to do so and make their patients extremely ill.
50mg Levothyroxine a day is not nearly enough Levo for someone with no thyroid.
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Am I getting too much Levothyroxine post-thyroidectomy?
HELP GP
Consultant wants me off ALL thyroid medication!
