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Any Thyroid experts able to help....

(9 Posts)
Brain06626 Thu 01-Aug-19 02:18:51

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8misskitty8 Thu 01-Aug-19 00:43:54

Are you seeing an endocrinologist ? What follow up is planned ?

I had thyroid cancer 9 years ago . Had partial then total thyroidectomy followed by radioiodine ablation.

I will for life be seen every year by endocrinology. They had to tell my gp several times not to interfere with my medication. Gp’s Don’t seem to be able to grasp that normal thyroid testing levels aren’t used when the thyroid has been removed due to cancer.

I was told tsh needs to be suppressed as much as possible as that is the hormone produced by the brain when it senses not enough T3/T4 in the body. Tsh stimulates the thyroid to make cells and therefore more T3/T4.
However If any thyroid cells have been left by the surgery they could be stimulated to grow if tsh rises and if these cells are cancerous then a new tumor can form.
Thyroid cancer patients need the T4 levels in the upper end of normal or slightly over to keep tsh suppressed.

Curiousmum69 Wed 31-Jul-19 17:05:41

Tsh is produced by the pituitary gland I response to thyroid (t3 and t4 levels) in your blood. So low tsh means your blood levels of t3/t4 could've hormones replaced by
Levothyroxine could be high.

But it is not an exact science and levels can be off. I'm assuming you're on 125 now? As they usually reduce by 25 at a time if tsh is low.

DonPablo Wed 31-Jul-19 17:00:58

Hi, what kind of thyroid cancer did you have? In some types (follicular) the goal is often tsh suppression. Has that ever been discussed with you?

Also thyroid treatment post thyroidectomy is often poor, with Dr's treating the results and not the patient. If you feel good, it seems as though you've got the right level for you. Make the appointment even if it's for some time away to discuss some of this.

Dis you take your levo before the blood test? Because a lot of people advocate not doing that for the reason that it gives a falsely low result.

I'm not an expert at all BTW, but my mum had a rare type of thyroid cancer and my best friend also has no thyroid, so I have many conversations about all of this stuff, including some interesting ones with the endocrinologist! You could always ask for a referral to the endo team at your gp appointment.

CellarFloor Wed 31-Jul-19 16:48:24

I'm no thyroid expert but in basic terms- If you don't have enough thyroid hormones in your body (T3 and T4), your pituitary gland notices and produces TSH- thyroid stimulating hormone, which makes your thyroid produce all it's own hormones.

Drs measure TSH to see how your dose is- so a low TSH number means your body isn't asking for very much or any thyroxine, and your dose is too high. A high TSH number means your body is asking for lots of thyroxine so needs to be increased.

Like I said though, IME the official ranges for TSH numbers don't suit everyone perfectly so feel free to say that to the GP!

bengalcat Wed 31-Jul-19 16:42:45

Stay on your current dose and make a routine appointment to see your GP

CellarFloor Wed 31-Jul-19 16:40:35

I have this argument with the GPs regularly. What number they think is right for you and what number you feel right at can be different- and if you tell them that IME they tend to listen.

Teddybear45 Wed 31-Jul-19 16:35:50

The letter was probably a canned response and the GP hasn’t read your medical history. Ring them and tell them you had your thyroid remove and so it’s impossible for your body to produce TSH. See a doctor if you have to.

SunshineySu Wed 31-Jul-19 16:32:14

Hi, I had my Thyroid removed due to cancer a little while ago.
I'm ok on that front now as it was caught very early, but still struggling to understand about thyroid levels etc.
I've been feeling fab the last 2 months, better than I have for the last 2 years, however, my GP has sent me the following email regarding my recent thyroid bloods.

QUOTE:"Thyroid blood tests back and your TSH level has dropped to 0.16 (from 0.28 last time, normal range being 0.27-4.2).
This means that we are providing your body with too much thyroxine and therefore suggest that you reduce your medication to 100mcg daily.
This should increase the amount of TSH your body produces."

I must have misunderstood my consultant after my OP because I was told I had to take Levothyroxine because without a thyroid my body won't produce thyroid hormones naturally.

Can anyone explain to me in very basic terms what's going on. I have obviously called my GP but the next available phone appointment is 2 weeks time and actual appointment end of Aug.

Just could do with a bit more understanding in the meantime.

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