Has anyone seen Dr Paul Jenkins in London?

[Jow11]

My friend who has Hashimoto's is thinking of seeing Dr Jenkins at the London Endocrine Centre. Has anyone seen him? If so could you please let me know by pm whether you'd recommend him? Many thanks.

[behappy1]

Hi sorry can't seem to pm on my phone so thought id just reply. I saw Paul Jenkins last week for first time for adrenal insufficiency. I found him very thorough and knowledgeable. I intend to use him instead of my local hospital. Only downside is cost!

[Jow11 in reply to behappy1]

Hi, thank you very much for your reply. You've been very helpful. I'll pass it on to my friend.

May I ask what you mean by adrenal sufficiency? Do you mean insufficiency as diagnosed by Syncathen test, e.g. Addison's or do you mean adrenal fatigue? I'm asking because I've been prescribed hydrocortisone for adrenal problems but would like someone to either confirm that I do need the HC or to help me wean off it. So I may see him myself if I can find the money.

[behappy1 in reply to Jow11]

Jow,

Snap, it's exactly why I went to see Dr Jenkins. He came highly recommended to me. yes i have secondary Addison's and confirmed by two short synacthen tests. FYI, My cortisol readings from the tests were

2012 - 217 rise to 317

Dec 2013 - 226 to 322. In a two year period I have not had any improvement, nor given any information on how to 'wake up the adrenals' from deep sleep by the NHS or my GP. I think treat the condition but don't care about resolving the underlying cause.

I take 3 lots of hydrocortisone each day and quality if life isn't great. Up and down. I came to the conclusion that the NHS are useless in this particular area. Partly because it's not that common but also because you generally have diabetes focused endos, in the NHS because that is what the greatest need is for.

My issues were caused by taking prednisolne when I had lupus flare up. I wasn't tapered down and went into crisis about 2 months later.

Anyway, Dr Jenkins explained I need to have a day curve analysis done (8 blood tests from 8.30 to 5.30) to ascertain what is the bare minimum hydrocortisone I can cope on. The plan is to then work out how to stimulate them. Just got quote from his secretary and it is over £1k !!!

My consultation last week cost £320.

I plan to get the day curve done as soon as I can afford it, as I feel it will be worth it in long run, if if helps to wean me off hydrocortisone.

Have you had synacthen or day curve done?

[Jow11 in reply to behappy1]

I haven't had either of those tests done. I just had the saliva adrenal profile and blood morning cortisol. My morning cortisol and noon is below range. That's why I was prescribed HC, I've been on it for 11 years. I also have Hashimoto's. I'd been feeling 80% better than before diagnosis. But in the past couple of months many symptoms returned plus I also seem to have hyper symptoms or maybe they are adrenal. My current dr doesn't know.

Since my friend mentioned Dr Jenkins I thought about seeing him myself. But £1000 for the test is a lot. I couldn't afford it. I might see him anyway. Maybe he'll be able to help even without that test?

£320 is a lot, too but I expected it in Harley St.

Thanks for your help.

[behappy1 in reply to Jow11]

You may not need the day curve analysis. Or, it might be that your GP can organise for your local hospital to do it for free, if you need it.

If you can, try to get yourself a consultation. It's a lot of money, but it will give you some direction. X

[mariolin in reply to Jow11]

Hi Jow11 just read your post and interested to read you have been prescribed HC for adrenal problems,but want confirmation that you need it and possibly be weaned off it.

I too have been told I have adrenal fatigue/insufficiency initially was prescribed HC,but could not continue taking it because of gastric upsets++ so was switched to prednisone 1x day and have taken it for 5 years mostly 2.5 mg sometime more depending on how busy the day was going to be.I now find my adrenals function have deteriorated with extreme weakeness all muscles weak,BP dropping when I stand most of the times and shivery,also have had Hashi x9 years.The adrenals deterioration followed a weak in hospital Nov 12 for a minor stroke? TIA where they switched my T3+NDT to Thyroxine wich I am an able to take that brought on extreme tiredness weakness and cold.I had a short Synacthen test last year the endo said the result was normal so I was taken off prednisone.Had many attempts at doing without it, but this last one was very bad I could hardly stand so weak affecting breath and heart beat.reluctantly I started taking prednisone of my own

accord,GP has been told not to prescribe prednisolone and my situation is getting worse,I really need a second opinion and often

considered going to see Dr P Jenkins but hesitated in case he was not in accord with t T3 combo or NDT. Also not sure if he uses

the Synacthen test only to assess renal function.If you have any info I should be grateful for any input from you or anyone.

Love and prayers to everyone

[behappy1 in reply to mariolin]

Hi Mariolin

You were on a low dose of predisone. The usual dosage for adrenal insufficiency is 5mg or, between 20-40g hydrocortisone which preferred as it's closer to your own cortisol. Dosage depends partly on your weight.

If your synacthen test was normal, firstly I'd find out how normal? The increment should be to at least 550.

It might be that you are not steroid dependent but that your body is not coping well. with the withdrawal process. It's the cold turkey effect.

Personally, if you are able to stay off predisone then you should. Eventually your adrenals should perk up. You will then hopefully feel bit better.

Just remember long term steroid use causes havoc on your body, including osteoporosis, collegen breakdown.

Dr Jenkins may be able to help you pinpoint the cause of your problems and best treatment x

[mariolin in reply to behappy1]

behappy1 thanks for your reply and sorry for being so late replying not well at all every day a struggle ,just manage to do the bare necessary then collaps in armchair.going back on your post re dr Jenkins

said you need to have a day curve analysis to ascertain what bare amount of HC you can cope on,( 8 blood tests from 8.30 am to 5.30pm). Would that be called also a long Synacthen test or is it another test entirely where 8 blood samples are taken at different times in the day measuring the cortisol levels at those specific times without injecting any ACTH?

[behappy1 in reply to mariolin]

Hi Mariolin

The day curve is different from long synacthen test. I think (might be wrong) is that long synacthen is where they are trying to figure out the type and cause of adrenal insufficiency.

From what I understand, in the day curve they start the day without Hydrocortisone. Bloods taken then your given small doses of HC and bloods taken. See how it responds to HC and how much your own body makes. Xx

[J33PCX in reply to mariolin]

I am also considering Dr Paul Jenkins so would welcome any recommendations/feedback. I've tried different endo's and they always reduce my dosage and I end up feeling a lot worse so I'm worried the same thing will happen to me.

Alternatively, I am considering trying Prednisone any suggests where to buy from?

[fscottmcgowan in reply to J33PCX]

I saw Dr Jenkins for the first time in May 2017, and I am almost entirely symptom-free. I had off-the-scale low T3 and low-normal T4, but normal TSH. He diagnosed secondary hypothyroidism and prescribed T4 and T3. Of course I couldn't get T3 from the NHS, so have been buying it online and asking friends to buy it in France, Greece, Spain and the US, where it is about 1,000% cheaper (I'm not kidding). The T3 he prescribed at first was very low (5mg a day), and had no effect on my symptoms. Sure enough, the T3 level was low when measured in the blood test. He then raised the amount to 20mg a day, but I could only get 25mg tablets, so I took those. I lost weight, got more energy, had no muscle weakness, and got my mojo back! Last blood test showed that T4 were normal, but T3 was too high and TSH was non-existent. Dr Jenkins then prescribed a smaller amount of T3, and I'll go back for blood tests in a couple of months. He is knowledgeable and very capable. I highly recommend him.

[Freedonfgter1993 in reply to fscottmcgowan]

I am seeing him now! May I ask how you got all your tests done and what pricing was like? I ask so that I have a rough idea. Can I pm you?

[Auds]

Yes I did and found him very good. I have to say he did listen very well and told me almost immediately what he thought was wrong but put me forward for a host of tests, and he was proven right. My GP had said "sometimes we cannot tell you what is wrong" - I've been overactive, thyroid eye disease, and so ill for 7 years with various digestive problems, exhaustion, fainting symptoms - but okay Mr GP in your eyes I am "normal". Thankfully Dr Jenkins unearthed several conditions I suffer from which I was then able to present to my GP! I look forward to this week's appointment with my NHS endo as again when I go to see him, he doesn't even look at me, just at the screen and says "all normal, no further action!" before booting me out the door. Armed with Dr Jenkins' diagnosis I hope to get more understanding and acknowlegement to my ill-health but it is shocking you have to go private to get this!

[Jow11 in reply to Auds]

Thank you very much for your reply. It is very helpful. I'll let my friend know.

Yes, it is shocking that to get decent treatment we have to go private and the NHS lets people with chronic illnesses down.

[MSC56]

Hello, I am interested in this Endo too. Where in London is he located and how do I find out about getting an appointment and also cost as I assume he is private? I am also in a quagmire of issues resulting in adrenal fatigue as well as Hashi's. Thank you!

[MSC56 in reply to MSC56]

ok, I found him on the web, Harley Street, where else! I assume it is a small fortune for an appointment? Anyone want to comment on what an initial assessment costs? Thanks.

[Jow11 in reply to MSC56]

Sorry, my friend doesn't know how much it costs to see him. I imagine that you're right and it is a lot as he is in Harley St. Have you tried phoning them to find out?

[J33PCX]

Has anyone tried a Salva Cortisol test from Genova Labs?