Frustrated at endo's obsession with TSH when ot... - Thyroid UK

Thyroid UK

137,936 members161,765 posts

Frustrated at endo's obsession with TSH when other results point in the opposite direction

Reefseeker profile image
29 Replies

I hope this isn't going to take too long to explain. And this is really a frustrated rant about the obsession with TSH.

I went to see a private endo, as my hypo symptoms had not resolved on a daily dose of 150mcg T4 and a split dose of 40mcg T3, given to me by an NHS endo who was prepared to accept mono therapy on thyroxine was not working for me. I asked the private endo for a return to NDT, which had worked very well for me for 7-8 years, and he agreed, but on a much lower dose than my previous Armour dose and lower than my combined synthetic dose. His reasoning was that my TSH was too suppressed.

He told me to test levels 6 weeks later and to note any change in symptoms. Here is a (slightly shortened) excerpt from my email to him and his reply:

"Blood tests after 6 weeks on your prescribed Armour dose - 2.5 grains equivalent to T4 95 mcg and T3 22.5 mcg.

Results, June 2023:

FT4 9.9 (range 12-22), FT3 3.29 (range 3.1-6.8), TSH 0.007 (range 0.27-4.2)

For comparison, here are my previous blood test results when on my previous dose of synthetic hormones T4 levothyroxine 150 mcg and 40 mcg T3 liothyronine.

March 2023:

FT4 14.3, FT3 4.84, TSH 0.01.

I monitored my blood pressure for 4 weeks prior to the change of medication and then in weeks 2-6 after changing over to NDT.

Blood pressure on synthetic hormones averaged 129/85, pulse 75; blood pressure on Armour averaged 135/89, pulse 75.

As you would expect from the blood test results, symptoms of hypothyroidism have become significant, in particular extreme tiredness and brain fog, I've had to stop my physiotherapy exercises for quite some time and become very sleepy by 2.30 in the afternoon so take my second dose then. The reduction in dose has had a considerable impact on my life. Given the dose has been dropped by a third for the T4 element of treatment and nearly a half for the T3 element, this is not really surprising."

I asked for advice re: a dosage increase as I was feeling so poorly.

Here is his response:

"Regarding the results, the ratio of T3 to T4 in NDT therapies such as Armour often gives a low or just below normal free T4 and more normal free T3, with the low TSH suggesting your body still feels that the dose need to go down rather than up. With a suppressed TSH such as this being the pituitary glands way of trying to reduce thyroid hormone production.

In some cases the low free T4 can be improved with you taking a separate Thyroxine tablet with the NDT, and that may give more longer lasting thyroid hormone levels over the day as this lasts longer than the T3 which your body will make locally in tissue as you need it from the thyroxine circulating, and that may help with the brain fog you describe."

I am very sorry, but I was on the floor with those levels of FT4 and FT3. What is particularly notable is that both my FT4 and FT3 had dropped substantially simultaneously with the TSH, yet he seemed completely disinterested in taking that into account. Even more surprising given my hypo symptoms were so much worse.

During this time, my recurrent UTIs went sky high, both in pain and frequency, and I found myself on almost constant antibiotics. I also had a severe increase in histamine intolerance symptoms of my throat narrowing, my face, mouth, tongue and throat going numb, severe headaches and throbbing over my right eye.

Fearing an allergy to Armour, I came off it and returned to my previous dose of T4/T3 combination. I also put myself on a low histamine diet. Now I haven't had a UTI flare-up in 6 days, my histamine flare-ups around my head have subsided and my hypo symptoms have started to resolve.

Of course, due to taking actions on two fronts - removal of Armour and replacement with synthetic hormones, plus significant dietary changes - I can't separate cause and effect very easily. Was it that the dose was so low it kicked off my UTI/histamine responses, or was it a reaction to Armour that built up over 6 weeks?

When I was on NDT for 7 years, much of that time on Armour, I didn't experience this response, but I was on a higher dose and my FT3/FT4 levels were at the top of the range, not at/below bottom. Can two years away from Armour mean I am now allergic or was it just the low dose?

I've messaged the endo to say I won't be continuing with Armour and thanking him for his feedback.

My frustation is really around the fact the endo reduced my dose substantially when moving me from synthetic to Armour due to thinking my TSH was too low, but my TSH crashed even further on this much lower dose along with my FT3, FT4 AND symptoms. Surely, when this happens, they should be able to see that severe hypothyroidism can exist outside of a suppressed TSH?

Written by
Reefseeker profile image
Reefseeker
To view profiles and participate in discussions please or .
Read more about...
29 Replies
jade_s profile image
jade_s

I'm sure admins will be along to reply soon but wow this comment is so bonkers "with the low TSH suggesting your body still feels that the dose need to go down rather than up. ". He seems to not understand what T3 does to the body!! The T3 is causing the suppressed TSH. You canNOT use TSH to dose NDT. As you know.

If he won't up your dose of NDT, sounds like you did the right thing in going back to T4+T3. Glad to hear things are improving.

I didn't read all your posts but i was wondering if you ever got those b12 injections you mentioned in a post some years ago.

Reefseeker profile image
Reefseeker in reply to jade_s

THANK YOU Jade, I nearly cried when I read your response, as I was seriously starting to doubt my own understanding here! And this is why this is such an amazing community - that you even remember I posted about B12 all those years ago. And no, GP refused so I take B12 sublingually, following all the nutrition advice provided on this forum. Thank you again:)

jade_s profile image
jade_s in reply to Reefseeker

Oh my dear no do not doubt yourself! xxx These doctors say the wackiest things, as if they don't truly understand the underlying mechanisms! It does make you question yourself (been there done that too) but stand firm, stand tall! 💪

LOL no my memory is not that good, i just went back and read a few of your old posts ;) I doscovered that I had functional b12 deficiency - tablets raised levels but did nothing for symptoms. b12deficiency.info/signs-an... But injections did. So whenever I see anyone struggling with optimizing thyroid for a long time, i feel compelled to ask :)

Reefseeker profile image
Reefseeker in reply to jade_s

That alone, checking previous posts, is what makes the community here such a special one. If only medical professionals would take the same amount of care. Re: B12 injections, my sister has them as she has long-term neurological damage arising from her GP's failure to act when she was clearly super-deficient. They still seem to make a fuss when her next injection becomes due. Interesting what you say that levels can be raised, but symptoms persist. All the best, Angela

jade_s profile image
jade_s in reply to Reefseeker

Yes I love this forum for that too - looking at trends, what's normal for *you*, any confounding factors 😊

I'm sorry to hear about your sister! They sound very irresponsible. We have a pernicious anemia forum here on HU if she or you is interested. healthunlocked.com/pasoc Many of us there have resorted to self injection as a result of unhelpful doctors. PA does run families so if she has it, you are at higher risk yourself.

Best wishes x

Reefseeker profile image
Reefseeker in reply to jade_s

PS, I obviously can't name the endo, but he is very senior in both the NHS and private domains... sigh...

ainslie profile image
ainslie in reply to Reefseeker

status and qualifications doesn’t mean tiddly, I had a Prof Endo, useless, I called him Prof Nope because everything I asked him for , he took great pleasure in saying NOPE while shaking his head,

Reefseeker profile image
Reefseeker in reply to ainslie

Hmmm, wonder if it's the same one?! 😉 The odd thing is, even though he was recommended by my private health insurer, I was sure from the outset that someone with the 'prof' title would not be able to think beyond 'standard' thyroid treatment, because if they didn't think that way, then they probably wouldn't be made professor....

Batty1 profile image
Batty1 in reply to Reefseeker

I have a cancer specialist endo who is highly recommended and he can’t wrap his hamster brain around the fact I have recurring thyroid cancer but all my labs are normal…. Eventually this guy is gonna kill me ! Doctor Nope more like Doctor Dope.

Reefseeker profile image
Reefseeker in reply to Batty1

I am so sorry to hear this and really do send you all the best wishes. It should never be this way; truly, how is this so difficult for them?

Kowbie profile image
Kowbie in reply to Batty1

hello I just had to respond to you about your comment dr dope gave me such a laugh x

serenfach profile image
serenfach in reply to Batty1

Slightly off topic, but we all need a smile.

The local Gynecologist consultant (mostly private) was nicknamed Gold Finger...

Lovecake profile image
Lovecake in reply to serenfach

🤣 my hubby had to see an ear specialist. He was Mr Herdman. He also saw a knee specialist call Mr Kneebone - kid you not!

(I think hubby is falling to bits 🤭)

Annib1 profile image
Annib1 in reply to Lovecake

My hubby went for a vasectomy at a clinic in Bath. The address was Saw Close!

Lovecake profile image
Lovecake in reply to Annib1

🤣

Batty1 profile image
Batty1 in reply to serenfach

LMAO

Brightness14 profile image
Brightness14

I gave up on seeing an Endo when the first and only time I visited one and she never knew what Vitamin D was and had to look it up on here computer. Amazing but true.

Reefseeker profile image
Reefseeker in reply to Brightness14

Seriously, they had to Google vitamin D?! How many years of training to they get.....?!

Brightness14 profile image
Brightness14

Yes it's true that was back in 2016 though perhaps things have moved on. GP's still load patients up with huge quantities of it before even testing the levels. It's on their list to do to make sure everyone has enough. Dangerous of course,

Zazbag profile image
Zazbag

What an imbecile 🤦🏻‍♀️

Reefseeker profile image
Reefseeker in reply to Zazbag

An excellent choice of words 😆

Tythrop profile image
Tythrop

Just a thought :- Have you or your Endo ever heard of Hysteresis of HPT axis ..aka Disease Related Downregulation of Tsh This is ot my "wisdom" ...Diogenese told me about it

ncbi.nlm.nih.gov/pmc/articl...

Reefseeker profile image
Reefseeker in reply to Tythrop

My goodness, no I haven't, that's fascinating. I'll do some reading on that straight away. I must admit, I've been assuming it's all about a lack of understanding that adding T3 to therapy suppresses the TSH. But I see a sacro-cranial osteopath who tells me that my HPA axis is all over the place and I'm not sure simple TSH suppression is necessarily the answer, but it could be.... sigh.... I'm reading an article on Thyroid Patients Canada about Utiger, who is considered the sort of godfather of the TSH. In his research, he showed that adding even a small amount of T3 to therapy reduces the TSH. Of course, that was when issues around the primacy of the TSH were less political than today. It is this reaction to T3 that may well underlie his proclamation of the 'exquisite sensitivity' of the TSH, rather than meaning the TSH is unbeatable and infallible.

Tythrop profile image
Tythrop in reply to Reefseeker

Have you ever had a blood test for anti thyroid antibodies? If not think about Medicheck or Blue Horrizin blood tests ( if you are in UK) also ,have you ever been.HypERthyroidal? If you would like to read my letter to my GP about this sort of thing I would be happy to share . They have just accepted that they've been reading my thyroid blood tests wrongly because only looking at ( misleading) tsh alone because didnt know about this Hysteresis thingey

arTistapple profile image
arTistapple in reply to Reefseeker

OMG that phrase “the exquisite sensitivity”! If this is not the endo I think it might be ….. this nonsense has spread like wildfire amongst them. That observation of yours sounds spot on. The overuse of this phrase used by endos is in itself infuriating but it may be that they have not even got the history correct? Yeuch! It’s a brick wall we are dealing with. The emphasis on ‘brick’.

Reefseeker profile image
Reefseeker in reply to arTistapple

In my, very humble, opinion, the original article is far more nuanced on this than modern endocrinology would like it to be, hence the very selective collective memory loss in relation to what he found: ncbi.nlm.nih.gov/pmc/articl...

arTistapple profile image
arTistapple in reply to Reefseeker

Nuance is is not in an Endos playbook. I still find it difficult to believe they are so ….. thick.

waveylines profile image
waveylines

If ever the research that showed going on the TSH levels to measure how much thyroid hormone replacement leads to under dosing then your sad sad tale underlines it. I'd refuse to see them anymore....go elsewhere.

Reefseeker profile image
Reefseeker in reply to waveylines

Indeed and it's that very word - sad. I actually feel so sad for myself and for all of us stuck in this black hole of medical politics that prevents us all from getting the treatment we deserve. Also sadly, my aspergers/learning disabled son is becoming distrustful of doctors as he sees me getting so sick and at times unable to care for him properly.

You may also like...

Is NDT better absorbed than thyroxine/liothyronine combo?

endocrinologist, my FT4/FT3 levels barely shift despite an increase in both doses over the past 2...

Help with result please - endo treating by TSH only!

1/2 grain NDT, moved to 1 grain of NDT as still had symptoms FT3 3.6 (3.1 - 6.8) FT4 0.5

Transitioning from NDT to T3 (slowly) - anyone done this? Or combines NDT with t3?

is low normal on 2 out of 5 points a day, while my blood serum cortisol is high in range. My ft4 is...

fT4 dropped from 16.4 to 8.3 after starting trial of NDT?

to 8.3 with TSH consistently low at <0.01 and fT3 stubborn at the lower limits of the range at...

T4 too high when TSH in range. Please can you look at my results?

daily. 12 June: TSH: 1.4; FT4: 25.6 (normal range 12 - 22); FT3 3.8 (normal 3.1 - 6.8). I have...