Dr Abhijit Chaudhuri UK

[charles shepherd]

Erin, I've found your thread about Dr. Chaudhuri to be very interesting. I myself am in Scotland and in December I was undecided whether to see Prof De Meirleir in Belgium or Dr. Chaudhuri. Dr. Chaudhuri would have been the easiest option because I could have seen him in Scotland where I live, but I didn't know much about him or what approach he would take to treatment etc. Your posts will be very helpful to many people I'm sure.

If you are up to it and are ok with it, would you mind mentioning the additional tests you are having? Apologies if this is a cheeky question. It would be helpful to many people to know what to ask their doctor for. I realise they are sophisticated tests and not the basic ones you usually get on the NHS.

You're very lucky your GPs have been helpful! I wish I had one of those. The fact that Dr. Chaudhuri also works in the NHS, I believe, will make them more accepting of his advice.

Please keep on posting if you can. I hope it all goes well for you. It's a really good start to the year anyway!

If you are talking to your GP, you could add that Dr Chaudhuri advises the MEA on neurology (clinical and research) and contributes to the MEA purple book:

MEA purple book: http://www.meassociation.org.uk/201...ch-masterwork-is-published-today-1-june-2016/

We have funding available to send a free copy to any doctor (GP or hospital) here in the UK - if you send contact details to Gill or Helen at the MEA office

 

[erin]

@Allyb510, of course I'm ok with writing about the tests and it is not cheeky of you to ask.

Dr Chaudhuri asked to my GP to carry following tests;

Short ADHD (Synacthen) test for adrenocortical functional reserve

HLA - haplotype for (for B5/ B51) (for Behcet's I believe)

Serum folate, ferritin (I have a long history of iron defficiency)

Immunoglobins

ANA, ENA, antithyroid (TPO) (I have Hashimoto's)

Anti-voltage gated potassium channel complex (VGKC) antibodies ( I believe this one is for encephalomyelitis)

Now, It took so long to see my GP as she's away until the end of February. I saw the locum dr, she's so nice and trying more than her best to get me all tests required. Unfortunately there were so much issues are slowing down the process, one of them is, some of these are not routine NHS tests and the lab staff (who are very nice) in my surgery don't know how to deal with these specific test requirements.

Here's what's happened so far; ACTH can not be done in a surgery I need to be in a hospital environment for this. So, I have to be referred to an endocrinology department of a hospital, which will take a long wait and I have to go through all thyroid issues, everything from the scratch. I don't want to take this road. I found out other tests can help to find out adrenal reserve status. I will suggest those to Dr Chaudhuri and then to my GP, if she's OK to carry out those. They are 24 hour saliva and urine tests. Other one is DHEA. All covered in NHS except saliva isn't. Also all the above tests are to diagnose diseases like Addison and Grave's. So if the results are bordering NHS will not treat the patience with adrenal fatigue. So this is the first obstacle, I guess there are huge problems for ME sufferers to around issues like these.

Another problematic test is VGKC, the lab staff just didn't know anything about this test, it is not a routine test and they've never done this test before, they didn't know which tube to use, the label would not been able to print as this was not in their computer system. So, she used a tube, attached the printed instruction by the locum dr and will inquire about it when GP is back this afternoon.

All other tests I mentioned above are routine tests and no problems with those so far. My GP also wanted to do a screen test for IBD / Chron's.

I believe Dr. Chaudhuri suggested these tests based on my symptoms. Every one of us different and we suffer differently. If you've gone to see him and if you've had different symptoms, he might have suggested other tests too.

Thank you for your good wishes, I hope we all get better.

 

[Allyb510]

If you are talking to your GP, you could add that Dr Chaudhuri advises the MEA on neurology (clinical and research) and contributes to the MEA purple book:

MEA purple book: http://www.meassociation.org.uk/201...ch-masterwork-is-published-today-1-june-2016/

We have funding available to send a free copy to any doctor (GP or hospital) here in the UK - if you send contact details to Gill or Helen at the MEA office

Thank you, I will do that.

 

[Allyb510]

@Allyb510, of course I'm ok with writing about the tests and it is not cheeky of you to ask.

Dr Chaudhuri asked to my GP to carry following tests;

Short ADHD (Synacthen) test for adrenocortical functional reserve

HLA - haplotype for (for B5/ B51) (for Behcet's I believe)

Serum folate, ferritin (I have a long history of iron defficiency)

Immunoglobins

ANA, ENA, antithyroid (TPO) (I have Hashimoto's)

Anti-voltage gated potassium channel complex (VGKC) antibodies ( I believe this one is for encephalomyelitis)

I believe Dr. Chaudhuri suggested these tests based on my symptoms. Every one of us different and we suffer differently. If you've gone to see him and if you've had different symptoms, he might have suggested other tests too.

Thank you for your good wishes, I hope we all get better.

Thanks for your interesting post, Erin! Informative as always. Just now, Dr. Chaudhri seems to be focusing mainly on your endocrine function. (I will bear that in mind. Mine hasn't been investigated properly, despite questionable symptoms.) Hope you can finally get the testing sorted out. What a bother! It will be worth it in the end, though, when the results start coming in and you can move forward with treatment. Keep writing! x

 

[bertiedog]

ANA, ENA, antithyroid (TPO) (I have Hashimoto's)

This stuck out on the page to me. What do you take for your autoimmune hypothyroidism? Recently my health has nose dived because an NHS Endo suggested I was on too much thyroid medication and wanted me to stop the 25 mcg thyroxine I was taking. He said it was ok to continue with the 2 grains of natural dessicated thyroid I have been taking since 2002 however its been a disaster.

My health has almost collapsed as has my thyroid function and adrenal function and I have ended up with severe throat infection followed by agonising spondylitis in my neck and unable to do hardly anything. The pain was almost unbearable and I have had to take double the dose of steroid and add another half a grain of the natural dessicated thyroid as I need to rebuild my thyroid. In just 6 weeks off that tiny dose of 0.25 mcg thyroxine my levels dropped from 15 to 8 which is well below the range but the result was that I was getting more and more horrid symptoms by the day.

The Endo told me that for my size the usual NHS dose would be 100 mcg whereas I was on the equivalent of 170 mcg. Actually I worked this out and made it around 142 so not sure he was correct. Anyway I have always believed and known that we are individual yet the NHS do not recognise this, at least the Endos don't because I quite obviously do need the dose of meds I was on and by taking it away my health has completely deteriorated.

Naturally when I first read your post I did wonder whether you had thyroid disease and if so whether you were on sufficient medication. For me just thyroxine doesn't work, it made me feel toxic at anything more than 25 mcg whereas the natural dessicated version is fine as long as I get enough of it!

I don't know if you have looked up the Stop The Thyroid Madness website or read the book, these might ring many bells with you. Because of my recent horrible experience there is no question that when the thyroid is not being optimally treated you end up with many of the symptoms of ME/CFS which can go away when properly treated. Unfortunately very few people seem to get the proper treatment of autoimmune hypothyroidism on the NHS because it might well involve the treatment of the adrenals too because if the adrenals aren't strong enough then you cannot tolerate the correct dose of thyroid meds, you just feel worse.

I realise this all sounds too good to be true but believe me I have experienced this sense of wellness only last year and had been regularly doing 8500 steps a day and wish I had never gone to this NHS Endo for a routine check up, its been a disaster so far. I should have stuck to what I have learned over the years and the only reason I went is because I am steroid dependent it is a serious condition so I felt it would be sensible to be in the system so to speak but of course Endos don't just discuss your adrenal function they also want to address the thyroid and that is where it has all gone so very wrong for me.

Pam

 

[erin]

@bertiedog

I take 50mcg levothyroxine and It's not been working.
I am trying to find why this is the case and I have read articles about it and looked at a lot of information at Stop The Thyroid Madness website. I recently read "Your thyroid and how to keep it healthy" by Dr. Barry Durrant - Peatfield. The book was so informative, I've learned a lot from it. I phoned Dr Peatfield to make an appointment, he answered the phone himself and gave me an almost 20 minutes consultation! He is a gem!

He thinks thyroid medicine is not working because of a possible adrenal fatigue and therefore Levothyroxine is not absorbed and causing toxicity. He suggested I should stop levothyroxine for 9 days and use certain remedies for adrenal fatigue and then I can start back on the thyroid medicine. He said there are ways of detecting adrenal fatigue, he described them to me. They are much clearly explained in his book. Also what tests standard medicine use to measure adrenal levels.

I would love to see Dr. Peatfield but his surgery down South and so far away. The expense and effort to go there at the moment is not suitable. I'm wondering if he could give me a telephone consultation, I'm willing to pay the full fee for this. After I get my results I will instigate this.

I never mentioned this conversation or the book I've read to Dr. Chaudhuri. He must have also suspected of adrenal fatigue I guess and that's why he suggested short Synacthen test.

Unfortunately, NHS does not recognize a condition called adrenal fatigue as standard diagnose. They only diagnose Addison disease where the adrenal is extremely deficient. So, I'm not sure what will happen in my case. My surgery is struggling to give me the Short Synachten at the moment. Dr. Chaudhuri now suggesting at least they should give me routine adrenal measuring blood test.

I understand your health issues. I have problems with my neck too. I wasn't aware this could be linked to thyroid problem.

I don't know I'm on sufficient medication or the right medication. Let alone not sure if I'm diagnosed properly.

I have a feeling that ME is causing the actual thyroid and / or adrenal problems. Dr KDM explains it so well in this clip.

I feel supplementing the thyroid and / or cortisol is not going to help to get better on its own. It is never simple and straight forward for the ME patients as mainstream standard medicine does not recognize ME.

And, yes funny enough, like yourself, I thought I was doing great before I went for my routine thyroid test in last November!

 

[bertiedog]

@erin Very interesting to read but I am sorry that basically you are going through what I went through in 2001, that was when I first learned about mercury and how it could affect the endocrine system which set me off to have tests done which indeed did show I had raised mercury levels in my blood and hair but then I had to follow up with tests that alternative doctors use which showed beyond doubt I had Hashimotos hypothyroidism and also severe adrenal insufficiency of longstanding duration.

In the end I needed virtually a full replacement dose of natural desiccated thyroid which was Armour at the time plus I needed the Prednisolone 5mg to be able to tolerate the Armour. I was so lucky then that by chance I had found a qualified Endo who practised integrative medicine and soon recognised what was going on with me.

You are right, the NHS didn't want to know and in fact the only other Endo I have ever seen on the NHS was in 2002 and he said I didn't need any thyroid support, everything was fine. BTW I was 2 stone heavier then, the weight just fell away once on the NDT and the steroid and I have kept if off mostly with the odd blip like recently.

I know I would never have got this treatment on the NHS, I think they would have waited until my adrenals failed and who knows what would have happened then. I actually lost 4 pints of blood immediately after childbirth in 1975 and my doctor thinks it caused a mild Sheehan's Syndrome which would have gradually stopped all my hormones working properly.

BTW I saw Dr P many years ago just for confirmation that what I was taking was ok and he has excellent knowledge but of course cannot practise as a doctor anymore after interest from the GMC! I better not say anymore about that situation but from reading his books and meeting him he has massive understanding of the endocrine system and what can go wrong.

I am sure that Dr P is correct about why the thyroxine doesn't work for you, as mentioned in my earlier post just 50 mcg made me feel horribly toxic but I could tolerate the 25 added to my natural dessicated product. From my experience and those of countless thousands of other patients who contact various forums and support groups all say that they feel so much better on the natural old fashioned medication rather than thyroxine which just doesn't work and infants makes us worse. I don't know why I need that bit of extra T4 but all I know is that I am not as strong without it and have far less stamina than when I take it. So my GP agrees that I should restart it and am going to tomorrow.

I don't know what else to suggest for you because it is a very sad inditement of the system here that one doesn't get the proper treatment for autoimmune hypothyroidism when with some real knowledge of what can go wrong with the thyroid and some proper treatment one's health can hugely improve as has been my experience until last November! I will keep my fingers crossed for you and if I can help you in any way please just PM me.

Pam

 

[bertiedog]

I have a feeling that ME is causing the actual thyroid and / or adrenal problems. Dr KDM explains it so well in this clip.

Just to say that if you have raised TPO antibodies then that is Hashimotos which would be a primary autoimmune disease and this would be unlikely to be a secondary problem as explained by Dr M. The adrenal issues could well be secondary though. (I have raised TPOt too and they will gradually destroy the thyroid tissue).

One thing I have learned is that with antibodies like this it means that there is immune system involvement and its a good idea to go gluten free, as gluten seems to be involved in leaky gut (Dr Tom O'Bryan explains this in his website). It had worked very well for me until November. Some people will also find that dairy can cause a similar immune reaction and need to avoid that too.

Pam

 

[erin]

Pam, thanks so much for the detailed posts and concern.

I was diagnosed Hashimoto's in 2015 by a private endo abroad, but my TSH level was normal so I was not given any medication. All that time I knew that I was very unwell. But NHS wouldn't gave me a detailed thyroid panel including anti TPO's and a thyroid MR. But the private endo did, and he said I had Hashimoto's. But again he did not treated me as TSH levels, T3 and T4 (free) were normal although the thyroid gland appears damaged on mri scan.

I probably had Hashimoto's started way back before 2015, I was having massive heart problems and was given Beta blockers. Now my heart beats under 40 a minute as I am very hypo and I'm weaning of Beta blockers, doing all by myself without guidance. I don't know why I paid all my taxes if I was going to diagnose and treat myself? Though I must tell all NHS staff I met were wonderful, They try their best and push it for me. But something is fundamentally wrong within the system.

Anyway this is a long saga, I had another thread for all these explained in detail, but I could not find it to link it up.

 

[mermaid]

There is definitely something very wrong with conventional medicine (don't want to just blame the NHS here, as it's fairly standard I think) and how many thyroid disease patients get on with Thyroxine. I am another victim!

In fact, @bertiedog I too have been messed up by an Endocrinologist quite recently, although he may have done me a favour. I got rereferred to an Endo as I had been on T3 only for 4 years (after 17 years on T4) - originally was able to go on T3 courtesy of the NHS, but had to be rereferred due to the CCGs wanting people to cut out the T3 use due to costs.

Actually the Endo was happy for me to stay T3 only, and like you, I had been feeling last year the best for years. However he was horrified at my TSH levels (too low) and my FT3 levels (too high) and insisted that I should reduce my dose which I did by 10mcg, and then a month later by another 5 mcg. I felt Okish after the first drop, but by the 2nd reduction I was in severe pain and had to increase up a bit again.

He also ordered a bone density scan and I discovered to my horror that I have osteoporosis, and worried about having caused it now by too much thyroid hormone, I have just started using NDT as I feel I will be safer on that.

I am sorry @erin that your Hashimotos has not been treated despite clear indications that you need help. The view on thyroid forums is that Endos are too keen to treat the figures and not the patient. I hope you get some better endo support in the near future. Many patients go it alone out of desperation and the 2 UK and the US forums have helped many with advice and support.

 

[erin]

@mermaid, unfortunately this thyroid mess is the case in many places, not only in UK. This gold standard TSH test and treating the "test" does not make sense. Best thyroid care is should be taylor-made for each patient as Dr Peatfield says. This is very costly to health services, they won't designate time and frequent consultations to the thyroid patients. It's just the usual take this pill and go away is the standard treatment unfortunately.

I am now trying CBD oil and I feel better. I'm almost scared to say it is working. I don't want to jinx it. I feel more like "myself" since past 8 days.

 

[mermaid]

Yes, I agree @erin . Because of no help though, I have been self treating really for 4 years on the T3 only and felt I was doing well (it was provided by the NHS but with GP support and she knew nothing really so let me get on with it).. Getting the osteoporosis was a real shock, and I cannot be sure of the cause (no clear vulnerabilities other than autoimmune thyroid disease and possible overdose of the T3). No signs at all of being overdosed other than the TSH issue. I had an ultrasound heel test done only 6 years ago which said low risk for osteoporosis, hence the shock.

Good luck with the CBD oil. I tried it to help with my chronic stomach pain (now improved by other approaches). Are you using it for general pain?

 

[erin]

Specific pain, I have proctitis and LS, so I use suppositories. I don't like the taste and my stomach can't handle it. It helped my jaw pain as well. And gave more energy and less agitation.

 

[Allyb510]

This stuck out on the page to me. What do you take for your aummune hypothyroidism? Recently my health has nose dived because an NHS Endo suggested I was on too much thyroid medication and wanted me to stop the 25 mcg thyroxine I was taking. He said it was ok to continue with the 2 grains of natural dessicated thyroid I have been taking since 2002 however its been a disaster.

Pam

That is a sad story Pam. I hope you get some help soon. Thyroid conditions are another minefield. The NHS is a well-meaning but not very well-executed service.

 

[Allyb510]

Specific pain, I have proctitis and LS, so I use suppositories. I don't like the taste and my stomach can't handle it. It helped my jaw pain as well. And gave more energy and less agitation.

I can relate to that Erin. The discomfort of proctitis is like a knife.

 

[erin]

I got some of the test results, not so good.

Short ADHD (Synacthen) test for adrenocortical functional reserve
I couldn't have this one, required hospital environment. Dr Chaudhuri adviced a baseline cortisol test. However I am now being referred to an endocrinologist, so I am not given any tests for adrenal fatigue. This is disappointing, I feel I need adrenalin problems to be detected and treated for the obvious hypothyroidism to be treated properly.

HLA - haplotype for (for B5/ B51) (for Behcet's I believe)
This test was not available at my GP's system, I have to be referred to a genetics clinic which I can't be bothered with.

Serum folate, ferritin (I have a long history of iron defficiency)
Completely forgotten, I don't know if this was GP's or the labs fault.

Immunoglobins
Never mentioned any test regarding this either. I don't understand it.

ANA, ENA, antithyroid (TPO) (I have Hashimoto's)
ANA was positive, which is upsetting, titre was 1:40 could be any autoimmune disease but maybe nothing. Whatever this means, they don't know what to do with this result.

ENA is not mentioned, maybe they forgot?

TPO, Thyroid Perox. ABs is 1579.3 U/mL where normally it shouldn't be higher than <6!
Obviously my own immune system is attacking my thyroid gland and this has been the case and nothing can be done about this?

Anti-voltage gated potassium channel complex (VGKC) antibodies
this is negative and I'm very happy about it.

in addition my own GP(locum) did a feacal calprotectin for IBD and this was positive too.
213 where normal range is 10 - 50 ug/g with a note saying -consistent with active GI inflammation, results <200ug/g are rarely associated with significant pathology.

I was very upset about this but she thinks it is slightly elevated whatever that means. Do I have IBD or not? I have all the symptoms.

So, I'm upset with the whole results, the ones that not even carried out and the positive ones. There is an autoimmune problem in my body as there is a clear evidence of inflammation. All I got is referred to an endocrinologist and genetics. I don't know where to go from here neither does NHS.

 

[Allyb510]

Hi Erin,

Sorry the results haven't been what you wanted!! It must be very frustrating...

Are you scheduled to see Dr. Chaudhri again for his take on things? I had a brief look and it seems a positive ANA result should lead to further investigation.

Can you or Dr. Chaudhri push the GP to organise your outstanding tests? Please don't let them slide. If they can't be done in your region, then perhaps another region?

The negative VGKC is a good thing Erin! But I know how you feel. You want answers and there are more questions than answers right now.

If doctors tell you they don't know what to do with a result then ask them to refer you to someone who does!

Hang in there...

Allyx

 

[erin]

Thanks for the supportive post @Allyb510, to be honest I don't really know what I'm gonna do. I'm kind of frightened to find out more about my condition now.

I guess I need to take charge and decide what to do.

However, I feel so tired and life's wasted on constant dr and lab visits. No wonder I feel that a bad crush coming. I feel I'm now having one of those long and dark episodes of fatigue since Sunday. Thinking, studying, being prepared for all these health visits plus some normal nonsense life stuff have worn me down. And I have not gained anything from these activities apart from the knowledge I have an autoimmune disease is confirmed. But I have no idea what this is and how to treat it or is it even treatable?

I feel I want to abandon the whole "getting better" idea and accept the disability and make most of what I have. I feel like running away and just take every day as it comes.

Not sure about anything and what to do.

 

[Allyb510]

Aw, I'm sorry you're feeling so bad Erin. I totally understand why as I've been there myself. Please don't give up the fight. This is a difficult time but things will improve, although it doesn't seem it right now.

Why don't you just put your quest to get better aside for a short time and distract yourself with something else? I know that's hard when you feel so unwell. But if you can manage it at all, you might feel that a distraction has done you a bit of good. There is so much stress associated with struggling and fighting to get answers.

I know how disheartening it is but you've gained a bit more information than you had before. Keep going and the rest of the answers will come in time. Feel free to tell me to shut up !

xx

 

[erin]

Ally thanks, you're so nice. I feel a bit better today. I probably have a long break from it all. I don't feel I gained much, maybe lost existing strength.

Dr. Chaudhuri's been good, he is very thorough, unfortunately his diagnosis tools are not quite applicable within the NHS system, event the NHS staff intentions are great.

This is our reality, there is no diagnosis schedule let alone expecting a treatment is a dream.