Impaired Sensitivity to Thyroid Hormone

[DippyDame]

helvella

Not sure if I'm allowed to promote a book on the forum but having read a number of posts from struggling members that suggest RTH as a problem I'm prompted to mention this ebook which explains it in basic terms.

The book is well referenced by the author and something I found incredibly helpful as I started my RTH research and journey beyond my initial diagnosis of Hypothyroidism. After nearly 20 years of levothyroxine treatment failed to relieve my symptoms - up to 200mcg - I was very unwell and had to start thinking out of the box

Medics had failed to help me......high dose T3 did

The author suggested his book and I began to understand why I was increasingly less able to function ....I owe him a lot.

The ebook is on Amazon for £3.56 or free if you have Amazon Prime. It is called "Impaired Sensitivity to Thyroid Hormone (Thyroid Hormone Resistance)" by Hugh A Hamilton

Hope it helps someone!

Over to you helvella.....thank you!

[Regenallotment Ambassador]

Tthanks for the tip, I will enjoy learning more. 🌱

[sparkly]

I so wish this was taken seriously within the nhs. Cellular resistance is a thing yet I bet no nhs endocrinologist will hold their hand up to it.I wish you was my Endo DD

[Alanna012 in reply to sparkly]

It's interesting, because there is a debate now being sparked about HRT and this idea that some women may experience a resistance to estrogen and other 'sex' hormones and may need higher amounts and dosages than some physicians (NHS) have been willing to prescribe and such doctors coming under fire.

So I wonder if the idea of cellular resistance to thyroid hormone might also gain some traction among mainstream medical experts in time...

[sparkly in reply to Alanna012]

I am also one who needs above licence dose of oestrogen. I'm just waiting to get hauled over the coals on this too. Just put my script in and expect it to be knocked after the ridiculous panorama witch hunt

[Alanna012 in reply to sparkly]

I was quite comforted to see that a great many women responded quite angrily to that nasty little hit piece. Finally it seems previously underserved women are starting to complain. But god forbid the women start demanding better treatment and looking for actual resolution of their issues instead of a prescription for antidepressants!

I don't envy you having to wait and see if it gets knocked back, but then again it may not. I suspect whatever the program was hoping to achieve has backfired spectacularly. It has served to kindle more interest in menopausal women regarding alternatives options for treatment. Fingers crossed it will go through ok!

[sparkly in reply to Alanna012]

Oh the comeback video that Liz Earle did is a belter. Shame that's not aired on national tv

[Alanna012 in reply to sparkly]

What comeback video? I missed it!

[sparkly in reply to Alanna012]

youtu.be/p3nYlWlUIAs?si=upV...(Not working as expected?)

She's good!!

[Alanna012 in reply to sparkly]

Ohh thanks! x

[Champ84 in reply to sparkly]

I am a 78 years old. I was originally preprescribed Levothyroxine over 20 years ago. After only 1 year I was taken off this medication! without any explanation. My menopause started at the age of 42 years old. In the intervening years I was never treated with any other Thyroid medication. Even though I gradually suffered with many health problems. Eventually I changed my Doctor's surgery. I was still not diagnosed with Hypothyroidism even though I had the recognisable symptoms

ie:- Thinning & course hair,

Loss of outer eyebrow hair & all other body hair.

After pushing to see an Endocrinologist it was only

then that I was diagnosed with Hypothyroidism and was once again put on Levothyroxine! I recently also saw a Nephrologist who mentioned considering HRT to see if would help with my current symptoms of lower leg rash and ongoing UTI'UTI's. My GP

Said he would not prescribe this at my age and is now going too organise a meeting between The Endocrinologist / Nephrologist/Dermotologist & himself regarding my situation. Apparently Nice guidelines do not recommend HRT for a person of my age.

[sparkly in reply to Champ84]

You would think it was never too late to start hrt. With all the research about bone, heart and brain benefits from hrt, you'd think they'd want every woman on hrt till they die. Surely prevention is cheaper than a cure. We replace thyroid hormones when the body is not producing them at any age, why not replace oestrogen, progesterone and testosterone when we stop producing? More research needs doing but I guess big pharma won't fund anything if it means they could lose out on profits.I know women are still on hrt in there 70's so what's the argument for not starting hrt later on life. I think the window is 10 years before your last period but how was that decided?

I really hope you get to start hrt as this field really need looking into.

There is no reason why you can't be prescribed localised oestrogen for the uti if you haven't already tried it.

[Champ84 in reply to sparkly]

Thank you for your reply. I feel exhausted with the confrontations that I have too have every time I see a new consultant or Doctor and have too go over all my past history again and again.

[Alanna012 in reply to Champ84]

I would consider an alternative private opinion if, of course, you can afford it!

You can buy a progesterone cream and also a progesterone with 20% estrogen combi cream - not ideal and maybe it wouldn't be high enough a dosage to help anything, but it might help a little.

Serenity do both a progesterone only and a progesterone/estrogen combi cream, though I haven't used them.

I think there's possibly better or other brands available. Actually just remembered that there's Barbara Hoffman on YouTube. She gives free advice by email - she's lovely- and also sells both creams. But she's American so you would have to order from her. She swears by using cream alone. She's in her later years and still uses them. Check her out!

[Champ84 in reply to Alanna012]

Many thanks for your reply. I never could have believed the difficulties in sorting out this common health problem.

[Dawney63 in reply to Alanna012]

I have been struggling with symptoms and spoken to my GP lots of times, they will not increase my levo, I started back on hrt patches about 4 months ago after being off them for 6 years, on Mo day while talking to a gp again she said maybe my hrt patches wernt strong enough, this is the first time anyone has said this to me and I just thought another excuse to not higher my levo.

[Alanna012 in reply to Dawney63]

Probably. I had the same issue. The numbers on the test say your TSH is fine. Therefore you don't need anymore hormone. In the end I felt pushed into raising it higher myself. I just eked out my pills over several months until I had enough to give myself a bit extra. Of course now I don't bother at all!

I think @Slowdragon has a list of references you can take including NICE guidelines to show your GP that there's a case for you being dose according to your weight. Taking it along to your GP MIGHT encourage them to give you a bit more

[DippyDame in reply to sparkly]

It's the high dose of T3 that sends them running for the hills!

My GP initially thought I would kill myself... now that I'm still here, years later, they all leave me to treat my thyroid by myself! The GPs at the Practice are all open minded and lovely

[sparkly]

My gp surgery have nothing to do with my thyroid care and don't even comment. Thankfully they do honour my t3 prescriptions..but for how much longer, I never know

[DippyDame in reply to sparkly]

I self medicate with no GP/endo input!

[sparkly in reply to DippyDame]

Well you've certainly more knowledge than a gp and endo put together.Even though I self sourced for 10 years I've aways been under an endo. Always counting down to my next appointment. I'm dreading when they leave or retire. Likely my prescription would be stopped

[Just_Be]

I have read this book it is quite old now but the problems remain the same. I discussed hormone resistance with dear old Dr P but I had a good response to NAX which unfortunately was later discontinued.

I have read your profile and you are amazing sorting out your own health.

[crystalcat10]

they have just increased my levothyroxine (by text message no less )to 350mcg a day

not much to add other than this book is screaming out to me to read it , its triggered an

alarm that this is my problem .

[DippyDame in reply to crystalcat10]

Good grief....you must be feeling awful and they hadn't even the sense to give you a Face to Face appointment to discuss this.

What were your recent lab results?

FT3 is the most important result followed by FT4....did they ever look beyond TSH which is an unreliable marker

Changes of meds/doses should initially involve a doctor/patient discussion

350mcg levo is much too high a dose.

Years ago when I reached 200mcg my GP said, " no more"!

Your T4 to T3 conversion must be very low or nil and your medics should understand this.

Have you optimised vit D, vit B12, folate and ferritin to support thyroid function?

How long has this been going on?

Clearly I don't have all the facts but in your shoes I'd want to see a clued up endo who would reduce that dose and add T3...now!

Further FT4 that is too high can cause other problems....a greater risk of cancer being one

academic.oup.com/jcem/article/

101/12/5030/2765090

Thyroid Function and Cancer Risk: The Rotterdam Study

Show them this study and ask if they want to be responsible for this possibility

I sometimes wonder what is currently taught about thyroid disease in med schools! The medics who are graduating are not fit for purpose

I don't think there is any need to panic right now but you need to discuss this with a medic fairly soon....if for no other reason that you will feel better on a correct dose.

I would also be inclined to discuss this with the Practice Manager.

Further I would write a letter of complaint to your Health Board detailing the ignorance you have been subjected to.

So, he thinks you just want T3 to make you feel better....strange that because without it I would be incapable of functioning, or more likely dead!!

Madness doesn't start to describe it

Take no more of this....I'm seeing red over this right now

Best of luck and please keep us posted

[Kimmi01]

thanks, I’ve just bought it to see if that’s helpful for me.

[squirrelnutkin333]

Thankyou so much, I will definately have a read, standard NHS care and endocrinologist are truly awful!!

[silverbelle51]

Thank you I find that very interesting. My situation includes having received Hep B vaccine series like back in 1989/1990 and at work I had to have it tested for what my titer (1997)was and it seemed I never serum converted, so the brain trust I worked for decided I needed to be revaccinated after taking the first one I went to the college physician who advised the director it doesn't work like that and discontinued her order. Many years later I took the Pneumovax and ended up with Pancreatitis Sx and in the hospital. checked the Gov, site and it is buried in the info that it is a possible side effect. and I also got sick when I first took the flu vaccine and so have never taken it again. Your book suggestion interests me cause I was misdiagnosed with hypothyroid and when started on low dose Levo developed sx of hyperthyroid. Also had childhood Polio Syndrome / ? vaccine induced. Appreciate your post.