Dr. Renée Hoenderkamp hypothyroidism & treatmen... - Thyroid UK

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Dr. Renée Hoenderkamp hypothyroidism & treatment vlog

Clutter profile image
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Dr. Renée Hoenderkamp is a NHS GP who had a thyroidectomy 17 years ago. In her weekly vlog (19.24 minutes) Dr. Hoenderkamp discusses blood tests, Levothyroxine and T3 treatment, when to request referral to endocrinology, and how to appeal the potential deprescribing of T3.

My link didn't work but Humanbean has kindly posted the vlog below :)

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Clutter
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57 Replies
shaws profile image
shawsAdministrator

Clutter, the link shows that an error has occurred and to try later.

Clutter profile image
Clutter in reply to shaws

Thanks, Shaws.

Humanbean has posted a workable link below.

humanbean profile image
humanbean

For some reason your link doesn't work for me. Does this one? Edit : Yes it does. :)

youtube.com/watch?v=QJqWKwI...

Clutter profile image
Clutter in reply to humanbean

HB,

Thank you very much. That be the one. I'll delete my duff link.

humanbean profile image
humanbean in reply to Clutter

If you update yours, I'll delete mine. :)

Clutter profile image
Clutter in reply to humanbean

Please leave yours, I don't know why mine doesn't work and have deleted it.

jgelliss profile image
jgelliss in reply to Clutter

Clutter THANK YOU SO MUCH !!!!!. YAY !!!! Finally a Dr that understands us . We NEED to CLONE MORE OF Dr. Renée Hoenderkamp . Shes is amazing . I just have one problem not with the Dr because she is one of a kind . Do we need to seek and search for Dr's that have thyroid ailments . And then ask if the are on T4 only ? T3/NDT only ? Or combo?

Why does it take for a Dr to have thyroid ailment to understand us to be treated the way we need and ought to be treated to feel optimal .

Clutter profile image
Clutter in reply to jgelliss

Jgelliss,

The hypothyroid doctors who are well on Levothyroxine can be very unsympathetic to people with good blood levels who aren't doing well.

jgelliss profile image
jgelliss in reply to Clutter

Those are NOT the ones where looking for .There are also those Dr's that don't necessarily have thyroid ailments are also sympathetic caring and dose accordingly . And THINK OUT OF THE BOX . We need more of them too .

Kitten1978 profile image
Kitten1978 in reply to Clutter

Yeap, I saw an endo who was hypothyroid and on T4-only. She was USELESS...

Surehope profile image
Surehope in reply to humanbean

Thank you

in reply to humanbean

Great clear and informative. Like you T4 after 8 years did not work for me. I get my NDT from Thailand, it's absolutely fine and I am so much better. It's cheap. £50 for 1000 tablets including p and p. I prefer some guidance from GP. So that's my next job. Thanks once again.

lucylocks profile image
lucylocks in reply to humanbean

Great, thank you for posting.

Kitten1978 profile image
Kitten1978 in reply to humanbean

She is definitely against T3 withdrawal. See her recent message exchange with Jerome Burne: jeromeburne.com/jerome-burne/

Kitten1978 profile image
Kitten1978 in reply to Kitten1978

lynmynott , Clutter

Has Dr Dr Renée Hoenderkamp contacted TUK???? She is a GP who had TT and takes T3 herself. She strongly opposes T3-withdrawal. Jerome Burne advised her to contact TUK (see below). It would be great to get her on our side. I don't know whehter this email address still works: reneehoenderkamp@cogora.com

She is active on twitter and writes articles for PULSE: pulsetoday.co.uk/dr-renee-h...

Dr Renée Hoenderkamp says:

July 4, 2017 at 12:43 pm

Jerome. I am a GP in London. I take T3 and T4 and it transformed me. I have shocking photos of the before and after me! I have written to NHSE and my MP. The simple fact is this drug is £15-20/month all over Europe and was that price here. Now it’s £268/month here because it’s another example of the NHS being ripped off by pharma. It’s nothing to do with the cost of manufacturing. It is still available across Europe at the lower price. I would live to speak to you about this. Regards Dr Renée Hoenderkamp

Reply

Jerome Burne says:

July 4, 2017 at 1:35 pm

Presume you’ve seen my piece in D mail about this today. I have even worse figure on price rise. I’m aware it is due to totally unjustified rises over several years. Stuff about being due to more complicated manufacturing comes from MHRA.

Have you been in touch with TUK who would be delighted go have another doctor on board. Presumably you can prescribe yourself T3. What a ridiculous bureaucratic mess.

Reply

Dr Renée Hoenderkamp says:

July 4, 2017 at 3:04 pm

Hiya. I did indeed. I can’t prescribe for myself. My Gp currently does so but it’s a battle and if they take it off the list totally I will have to buy in Europe which is shocking. At least I can, think of those who can’t! I haven’t spoken to anyone at TUK. Anyone in particular. Feel very passionate about this. I lost my thyroid I cancer so I have no activity of my own at all. Do some media writing and a BBc Gp show so have some opportunity to highlight. Did ou know it is currently part of NHSE look at OTC meds with a view to stop GP’s prescribing OTC meds or those without evidence. In the paper they say “there is evidence of efficacy but there are cheaper alternatives”. Not on the list: paracetamol (170 OTC), suncream, ibuprofen and so on.

Kitten1978 profile image
Kitten1978 in reply to Kitten1978

Sorry, ignore my previous post! I've just found Lyn's post, which says that Dr Hoenderkamp is already on board ;)))

healthunlocked.com/thyroidu...

dancer11 profile image
dancer11 in reply to humanbean

Many thanks. I was beginning to think I was going mad. I am on 75mg. Thyroxine and due to have another blood test now. Do I take the Thyroxine before the blood test and after. Again, many thanks.

Clutter profile image
Clutter in reply to dancer11

Dancer11,

Arrange the blood test early in the morning when TSH is highest and fast (water only) as TSH drops after eating and drinking. Take Levothyroxine after your blood draw.

RedApple profile image
RedAppleAdministrator

Thanks for posting Clutter :) Excellent video. Great to know there's one GP (at least) who understands and is doing her bit to get this awful situation sorted.

lola1956 profile image
lola1956

Thank you ! At last a doctor speaks out and tells us to fight for t3 if that's what our body needs ! Can't tell you how this made me feel ! I'm just so worried about current t3 shortages abroad and with no chance of being prescribed by my doctor I feel a resurgence inside me to fight the nhs again ..thanks Clutter !

QUE6T-33 profile image
QUE6T-33 in reply to lola1956

i'd read of problems / delays with one T3 supplier, but is there

generally a T3 shortage from abroad ?

in reply to QUE6T-33

Members on T3 will have to confirm or correct me if I'm wrong, but I have only heard about problems with Greek T3.

QUE6T-33 profile image
QUE6T-33 in reply to

Yep, that's what I read too

lola1956 profile image
lola1956 in reply to

Yes there a big problems getting t3 which.is a big problem when self medicating on t3 only

Clutter profile image
Clutter in reply to

Anna69 and lola1956 ,

It is only the Greek Uni-Pharma T3 which is unavailable. Tiromel and Grossman Cynomel and others are fine.

QUE6T-33 profile image
QUE6T-33 in reply to Clutter

Do we know reason why Unipharma having

issue with supply ?

Clutter profile image
Clutter in reply to QUE6T-33

QUE6T-33,

No idea.

lola1956 profile image
lola1956 in reply to Clutter

Will these always be fine ?

Clutter profile image
Clutter in reply to lola1956

Lola1956,

How can anyone know?

lola1956 profile image
lola1956 in reply to Clutter

Yes I know that's our world ..self medicating and fearful of what will happen next

lola1956 profile image
lola1956 in reply to QUE6T-33

Yes you will see many posts on here about the situation

Clutter profile image
Clutter in reply to QUE6T-33

QUE6T-33,

No, it's just Uni-Pharma T3 which is in short supply. Tiromel, Grossman Cynomel and other makes are available.

grauntieannie profile image
grauntieannie

Terrific, Clutter - many thanks! And humanbean!

JGBH profile image
JGBH

Thank you Clutter and humanbean. A ray of hope.... Is it possible to obtain a printed version so that I would be able to take it to my GP and endo when I do go and see one? That would be most helpful in negotiating the correct treatment if converting badly.

Clutter profile image
Clutter in reply to JGBH

JGBH,

I'm not aware that a printed version exists. Why not pass on the Youtube link to your GP and endo?

JGBH profile image
JGBH in reply to Clutter

Clutter,

That's a pity. I certainly will pass the Youtube link to GP and endo when see one. However, knowing my GP I seriously doubt she'll look at it! It will be falling on deaf ears, she's very good at that. It's hard to remain positive when faced with a brick wall, time and again. I keep trying but am seen as a "difficult patient who demands things" (investigations/tests/treatment) from... poor pressurised GP. You get the drift...

Clutter profile image
Clutter in reply to JGBH

JBGH,

You could contact @DrHoenderkamp on Twitter and ask whether she has a transcript of the script you could have to show your GP and endo.

JGBH profile image
JGBH in reply to Clutter

Great idea Clutter. Thank you. Perhaps this, if available, could help a few patients who are desperate to try a better treatment.

Kitten1978 profile image
Kitten1978 in reply to JGBH

And if you do get the transcript of her video, could you post it here, preatty please?

JGBH profile image
JGBH in reply to Kitten1978

Will most certainly do if I manage to get the transcript.

Jabulani profile image
Jabulani

Fantastic video. Thank you so much for posting it Clutter.

Mamapea1 profile image
Mamapea1

Thank you clutter (and humanbean) for that interesting and hopeful link ~ wish she was my GP! Video watching is about my limit today anyway ~ I feel so ill.....

Tayhung profile image
Tayhung

Thanks Clutter & HB

As we are still part of Europe I don't understand why such discrepancy in cost is allowed?This it seems is the real reason NHS is not happy to prescribe. Hence limited training for GPs

Maybe our MEPs could help? I recently relocated and I am terrified that I will lose my T3

Clutter profile image
Clutter in reply to Tayhung

Muriel1234,

Cost is the reason NHS England want T3 deprescribed.

Treepie profile image
Treepie in reply to Tayhung

The other producers have to apply for a license to sell in the UK.

There seems to be no way for the NHS to simply source from them.Incompetence,laziness,bureaucracy?

Tayhung profile image
Tayhung

It seems that NICE if that is still the name should be petitioned. If the cost of drugs from licenced providers is the issue why are they not looking at cheaper providers to licence. I agree it is likely to be laziness, incompetence and historical process that nobody can be bothered changing!!

humanbean profile image
humanbean in reply to Tayhung

My understanding is that manufacturers have to approach the NHS rather than the other way around. So there must be good reasons why other companies don't apply for a license. We can only speculate on what they are.

What I don't understand is why the NHS can't license existing T3 meds that are already used successfully in France, Germany, Greece, Turkey etc.

Kitten1978 profile image
Kitten1978 in reply to humanbean

One UK manufacturer has recently been granted a license to manufacture T3. there was a post about it a couple of weeks ago.

humanbean profile image
humanbean in reply to Kitten1978

Yes, I know. I'll be interested to see what they charge when it finally comes on-stream. I also don't understand how they can have been granted a license just when the NHS wants to ban its use.

The NHS's right hand doesn't seem to know what the left hand is doing.

Kitten1978 profile image
Kitten1978 in reply to humanbean

It's all about connections and who knows whom... They must know something we don't if they are investing in it. Yes, I'm also very suspicious about the price they are planning to charge...

Bijourain profile image
Bijourain

It's great that a gp is explaining different treatments for thyroid issues, but how are you supposed to get your own gp to run the relevant tests? My gp will only go off tsh and t4, I have to pay privately to include ft3, I still haven't ordered a rt3, as I'm waiting to see how the introduction of a small amount of tiromel is having on my levels.

Clutter profile image
Clutter in reply to Bijourain

Bijourain,

Very few GP practices will order FT3 now and rT3 isn't tested on the NHS at all as far as I'm aware.

Bijourain profile image
Bijourain in reply to Clutter

I know Clutter, so how can they offer bespoke treatment to thyroid patients, whether you're talking about levo/liothyronnine or ndt, when the medical practitioners, are so narrow in their outlook?

Clutter profile image
Clutter in reply to Bijourain

Bijourain,

They aren't offering bespoke or individualised testing or treatment. They're offering the minimum (cheapest) testing and Levothyroxine (cheapest) treatment.

It's not the fault of individual GPs but the fault of the agreements drawn up by the various bodies, labs and CCGs to cut costs to the bone in primary care.

Kitten1978 profile image
Kitten1978 in reply to Bijourain

Would your GP watch this video if you suggest it ot them? It's a long shot but maybe they would listen to another GP...

Clutter so wonderful to see that you posted this on the forum 😊. Have been away and a bit slow to catch up😉

Dr Hoenderkamp has been such a breath of fresh air and many of us campaigning for ITT (improve thyroid treatment) are delighted with her tweets and Facebook support.

If you are reading this post and haven't yet felt inspired to help the campaign but now want to do something, please at least sign the change.org petition and ask everyone you know to do so as well.

tinyurl.com/y7rexgvw

We are close to 5500 signatures, the campaign started by our wonderful Kitti1 is gathering momentum.

You can connect with her by sending a message here or on Twitter or Facebook. Search on Google for 'improve thyroid treatment campaign' and you'll see how this campaign is growing in profile.

lynmynott would it be possible to pin the petition to the forum? I'm going to put up another post. Would be helpful to reach the vast number of members here. As well as more prominently on Thyroid UK sites?

TaraJR profile image
TaraJR

I have to admit that I cried when I watched Dr Renee's video. At last, someone who understands and is promoting what we've saying, and hoping for; a doctor who's actually validating what we know. We've been told by so many professionals that we're wrong - but we are right, and at last we have an expert on our side!

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