Hashi with GP lowering T4 and obsessed with TSH

[RexandBoone]

So frustrated that I’m on here to vent!

I finally got all my blood results out of my GP practice (previous thread - I take Levothyroxine and self administer T3).

Last July my results were:

TSH less than 0.01

T4 17.4 (11.5 – 22.7)

T3 1.6 (0.9 – 2.5)

I did not think to get these results at the time and trusted the previous GP when he said that the T4 needed to be lowered. I think those results look great and I felt great back then!

My new GP has lowered the T4 again and again (now on 75mg) and I saw him today to ask that he increase my levels back to where I felt good and to ignore the negligible TSH. He refused. He said that taking too much Levothyroxine will result in heard disease. I insisted that he shouldn’t tinker with it but get me back to the July level and then monitor. Better to feel good now than to be a zombie with no risk of heart disease! I even said that he should do no harm and that I considered that he was harming me. He actually took that very well, but still refused.

I am apoplectic that he thinks he can improve my TSH figures, whilst I'm telling him that my weight has increased, lethargic, apathetic, constipation, brain fog and he thinks I can't recognise the symptoms when I've been hypo for over 20 years.

Grrrr.

I will seek a 2nd opinion at the practice, but I at least have ALL my results to go private (but why should I be forced to do so?).

[MissGrace]

Does your GP know you self-administer T3 and that will clearly distort your results? Either way, he needs to treat the patient not the bloody blood tests! Grrrr!!!! 😡🤸🏿‍♀️

[RexandBoone in reply to MissGrace]

Yes, he knows and disapproves. I'm so angry

[SeasideSusie Remembering]

Is that a Total T3 test? It's Free T3 that's needed.

[RexandBoone in reply to SeasideSusie]

Yes, Total T3 - what's the difference?

[SeasideSusie Remembering in reply to RexandBoone]

Total T3 measures the total amount of T3 - bound (to proteins) and unbound and it's the unbound which is free to enter the cells (hence Free T3). Just measuring Total T3 doesn't tell us what is available to enter the cells, so we need Free T3 testing.

[RexandBoone in reply to SeasideSusie]

Thank you. Kinda daft to measure Free T4 and not Free T3? So, the T4 to T3 conversion that we need, that is a conversion to Free T unbound and ready to energise?

[helvella in reply to RexandBoone]

As I understand, the T4 has to be free in order to be converted to T3. Once converted to T3, that T3 can then be bound to proteins again resulting in an increase in Total T3.

Otherwise how on earth could Total T3 ever rise? Indeed, how could there be any bound T3 in the first place unless unbound T3 can get bound?

[SeasideSusie Remembering in reply to RexandBoone]

Not all T4 is converted to Free T3

You can read about conversion here

drknews.com/conversion-t4-t...

In particular

"In the end, only about 60 percent of T4 is converted into usable T3. Twenty percent becomes reverse T3 (rT3), an inactive form the body cannot use. Levels of rT3 can become too high in times of major trauma, surgery, or severe chronic illness. Another 20 percent of T4 can be converted to T3 by healthy gut bacteria in the digestive tract."

[RexandBoone in reply to SeasideSusie]

Very interesting. Since lowering my T4 doses, I have continued to take my T3. The Total T3 has now increased. From what you're saying, I was converting a bit of the T4 to T3 but with decreased T4 dose, and constant T3 dose, I am no longer getting the best possible conversion to FREE T3? (Because my fatigue symptoms are back etc). Sense/nonsense?

[SeasideSusie Remembering in reply to RexandBoone]

Even though your total T3 has increased, you have no idea how much of that is free T3. You can't really know anything unless you test free T3.

[RexandBoone in reply to SeasideSusie]

I looked back at private tests I had done in 2015 and they tested free T3 and not Total T3. Is the free T3 a difficult/pricey test compared to Total T3. I mean, heaven forbid that we should do tests that are meaningful...

[SeasideSusie Remembering in reply to RexandBoone]

I don't know if it's pricey but it's not difficult. I live in Wales and total T3 isn't done, only FT3 if the lab decides to do it. I think NHS England do FT3 not Total T3, again when the lab decides it should be done. I presume you're not in England or Wales.

Many members who can't get FT3 tested with the NHS do their own private thyroid function test with Medichecks or Blue Horizon. FT3 and FT4 must be tested together to see what conversion is like.

I've just done a basic thyroid function test with Medichecks (Thyroid Monitoring) - TSH/FT4/FT3 - I bought it on offer at £29, normal price £39. Code THYROIDUK gives 10% discount with all Medichecks kits not on special offer.

[RexandBoone in reply to SeasideSusie]

Thank you that. I live in Scotland btw. Blue Horizon have eye watering prices - glad to see we get 10% off with Medichecks. I shall use them as my backup and get the free T4 and freeT3 as definitely. May I ask how you got the extra special discount?

[SeasideSusie Remembering in reply to RexandBoone]

Medichecks have special offers every Thursday - Thyroid Thursday. It's posted on the forum every Thursday morning, but you can check their website as well. They're pretty random so we never know what's going to be on offer but they will be thyroid related. You can't use the 10% discount code on any tests that already have a special offer price, it only allows 10% of full price tests.

[shaws]

I don't think he is aware that TSH is not a thyroid hormone but it is from the pituitary gland. The pituitary gland goes into action if our thyroid hormones become too low and it tries to flag up more thyroid hormones that's why it rises.

If we're diagnosed and take levothyroxine or any other thyroid hormone, the aim is a TSH of 1 or lower with FT4 and FT3 in the upper part of the ranges. The latter two are rarely tested.

We are more or less forced to self-medicate if we aren't improving through our surgery.

thyroiduk.org.uk/tuk/testin...

read second half of the following link - it is by an expert in Hormones.

hormonerestoration.com/

It appears that the professionals have had very, very poor training in anything to do with thyroid hormones and they assume if TSH goes too low we've suddenly become hyperthyroid.

[RexandBoone]

Thanks for the links. I think I've seen the information on the second link somewhere else. When I told the GP to disregard the TSH levels and to look at the Free T4 and the Total T3 what was it telling him? My Free T4 level has now gone from 11 to 10 (9-21) in Oct and Dec respectively, and he said its within range. I said its getting lower and lower and it should be at the high end of the range not the lower! (learned that on here). Its not just what the medical profession isn't studying at Uni, its also this attitude that doctor knows best. Plus worry that being female and middle-aged is a factor too.

[BlueMoon65]

Totally understand your frustration! Précis of my own experience: poor immunity lifelong; highly disabling illness in my thirties, labelled CFS; recovered for six years by dietary stringency; recurrences until diagnosed hypothyroid at age 59. New GP reduced dose (during heatwave when temps were 35 degrees C) from 100 mcg which kept me stablefor six years. GP took me down every 3 weeks to 25 mcg. Hardly able to walk, think, digest, and frequently bedbound most of the day. Chest pain ( I speculated caused by a small clot as Ihad felt pain in calf) caused overnight hospital admission. Paramedic, A and E staff did not identify tachycardia [but Cardio wrote this on notes!]; given three anticlotting agents; pain then disappeared. Cardio was very rude and did not record info accurately. She ‘heard’ that I had consistently been on 100, and prescribed Beta Blockers! I was discharged, furious! Have not taken Bisoprolol as am intelligent enough to know what they do! Basal temp is always 35.8, pulse under 60. Slowly feeling better, back on 75. But, like you, am now going to be routinely tested on T4/TSH. So like you will go to Medichecks and also get adrenal test. Lucky to have the money to do this. But will the GP believe the results?

Feel most of my life has been a terrible struggle, entirely unnecessarily. My maternal aunt was diagnosed hypo in her eighties, after falling asleep allthe time. My father’s side has hypo, and my dad appeared to have narcolepsy, falling asleep mid-meal. No doctor has ever asked about familial health. Why does the NHS operate like this? It is squandering public money and, contrary to what you are being told, undertreated hypo is causing strain on hearts and organs.

Sorry to say, my rant is parallel with your own, but it is consolation to know we are not alone. However, when will the NHS begin to listen?

[RexandBoone in reply to BlueMoon65]

Oh dear, I'm so sorry to hear of your troubles. I'm glad you're starting to get better and I know your frustration as it's agonisingly s l o w to get to each test stage. Good to come on here and talk and rant and rave to such an understanding (and highly knowledgeable) audience!