Questions for Dr Hakim???

[Ladyuponthelake]

Anyone have questions that they feel would be helpful to ask Dr Hakim? Brain seems to have gone, well just gone all together today.

Any help would be most appreciated!

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[Jay66]

TigerTea , Tillyray and andreasuperstar have all been fairly recently I believe. Maybe one of them can help with some of the questions they asked Dr Hakim?

[Ladyuponthelake in reply to Jay66]

Thank You Jay

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[rosserk]

Hi yes can you ask if there’s a link between Ehlers Danilos and sjorgrens and EDs and hypothyroidism. Could they be caused by mast cell activation?

Three years ago I was diagnosed with EDs after a really traumatic event in my life and since then my health is steadily declining. Now either I’m the unluckiest person or they are all connected in some way. Kind regards 😀

[Tillyray in reply to rosserk]

Hi. I'm sorry to hear your health has declined. I can totally relate to that as it is the same for me. After my hEDS diagnosis I was pointed in the direction of a cardiologist - by Dr Hakim- due to my Autonomic dysfunction symptoms -which later became severe- and I was diagnosed with Postural hypotension/ Autonomic dysfunction. The cardiologist said this was part of EDS.. I'm currently researching mast cell activation disease/syndrome because I have other symptoms which are likely connected to it..MCAS is also in relation to EDS.. mastcellresearch.com

I know it's not easy but I hope you find some relief. Best wishes xx

[rosserk in reply to Tillyray]

Thank you I was diagnosed with postural orthostatic tachycardia also an autonomic dysfunction. However since my diagnosis of hypothyroidism that has significantly improved so either it was caused by EDs which was my initial diagnosis or it is a result of my thyroid disorder, which seems more likely since it has improved with treatment. I also have bradycardia which has improved slightly since treatment for my thyroid. Of course the thyroid issue could be caused by EDs since the thyroid is connective tissue and the majority of thyroid problems are caused by the immune system attacking the thyroid, immune system responses also being prevalent in cases of EDs.

Thanks for the link I will take a look now. Kindest regards 😀

[Tillyray in reply to rosserk]

I too have thyroid issues. My levels have often risen but can fluctuate. I am not on meds but I have 6mthly blood tests.. Because all is connective tissue there are so many disorders that we can suffer with which makes it all so difficult for us. GP's don't always know what a problem is connected to, even being sent to a specialist often doesn't give answers..and they're all completely in the dark when it comes to MCAS, unless you can see a specialist in it (which is the story of an EDSers life!) 😖

Regarding my Autonomic dysfunction; Standing is difficult for more than a few minutes. I have to keep hydrated day and night and take electrolytes to keep my symptoms as controlled as possible and not flare to leave me so ill with symptoms that I am almost in a coma in bed for days/ weeks. I can be referred for further testing -tilt table- in order to receive the specific medication for POTS, but I am rarely able to leave my house due to pain and illness these days. Some days Getting dressed is an achievement, so then to travel as well is a push too far..But I'm not giving up!!

I hope you have success with your research and things improve for you. I 'll continue with mine🙂 xxx

[rosserk in reply to Tillyray]

TillRay 80% of my EDs symptoms disappeared or improved significantly with treatment for my thyroid. It’s early days and I’m still at the tweeking the medication stage but I’m really confident it’s sorting a lot of the complications I’ve had from my EDs. Do you know what your last thyroid results are? Doctors very often say a patient doesn’t need treatment because results are in range but they don’t test the right hormones and when they do they discover the thyroid is indeed not functioning. Check out some of the stories on Thyroid UK most of these people are reporting symptoms that are specific to EDs put are hypothyroid. Most NHS labs only test TSH levels which does not give a full picture of the thyroid.

I was also bed ridden three months ago and could barely walk three metres to my on suite! I’m able to walk about the house in short bursts and my blood pressure isn’t dropping through the floor when I’m moving around. Hope you get some improvement soon. 😀

[Ladyuponthelake in reply to rosserk]

Hi Rosserk,

I haven't received any direct answers yet. But I'll post when I do. I also have hypothyroidism and take 75mg of Levothyroxine. The medication hasn't sorted any of my other physical problems out. I've steadily worsened since diagnosis.

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[rosserk in reply to Ladyuponthelake]

Don’t get me wrong I’m still getting a lot of the same problems I was getting before and my Joints are still dislocating on a daily basis. But the most debilitating symptom the POTS is significantly better. I’m at work he early stage of diagnosis of hypothyroidism and only on 50 mg. I’ve been taking them for 4weeks and for the first two weeks I felt great but the symptoms have returned which indicates a dose increase is needed. I’m hoping once I get to the optimum dose my symptoms will improve. Hypothyroidism as you know causes aches and pains which added to the pain of EDs is intolerable. If I can get some pain relief from the thyroid treatment I will be happier. I think? I do think in my case the thyroid is exhasperating my EDS X

[Ladyuponthelake in reply to rosserk]

I was so mentally affected that I'm unsure of any pain. My symptoms are different in physical pain had been since I was a child became debilitating at the age of 54ish. I put up with it until then, then anither trauma stopped me physically.

I didn't find a balance with the thyroid for about 6 months after medication started. So maybe completely different?

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[rosserk in reply to Ladyuponthelake]

I’ve alway been really sporty, played badminton and netball until my early 40s at a high level. It was when I lost muscle tone that my joints started to dislocate. Now virtually every joint in my body dislocates with minimum pressure. I’m constantly covered in bruises and no sooner do I recover from a sprained ankle than I do it all over again. I’m five foot eleven inches tall and have relatives with marfans and EDs so I guess I was lucky not to suffer to much till later life. There are days when I literally feel like taking a cocktail of pills but I couldn’t do that to my family. The problem with EDs is we don’t have physical signs that demonstrate our level of pain or illness. Being diagnosed hypothyroid has made a lot of difference for me because there was something tangible people could see that proved I wasn’t imagining my myriad of symptoms. I think it’s the trauma that triggers the mast cells and then we get the attack on our immune system but what do I know. Lol 😝

[Tillyray in reply to Ladyuponthelake]

Now that you have seen Dr Hakim and been sent for further testing, it will pave the way for you to receive any appropriate treatment and management. I would not have been able to get referred by my GP to a knowledgeable cardiologist, without Dr Hakims diagnostic letter.. Let us know how things go. Take care.xxx

[Tillyray in reply to rosserk]

Hi. Yes I did originally have nhs tests but found they didn't test for everything, and it seemed to depend on which area you lived in as to how levels were interpreted. I had to request to have all the necessary levels checked and this took a few goes😫 but eventually got them done...

My antibody result is often positive and TSH often raised, but not at every six month testing where it can be normal.This far the level has not been above 8.The local endocrinologist says usually they do not treat patients unless it is raised above 8 and sustained over two readings.. I will keep onto this and look into it again. Thank you xxx

[Ladyuponthelake in reply to rosserk]

I was diagnosed with hypothyroidism after a significant trauma in my life. So I can appreciate that.🤗

[Ladyuponthelake]

I'll put it on my list of queries.

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[Tillyray]

Hi there. I feel my brain isn't what it was of late but I will try and be of some use🙂..As you may already know, I saw Dr Hakim along with my son.. In preparation I had typed my medical history including the pain, sensations etc experienced when younger, which were ignored by Drs at those times (the rock-hard 70's) .A list of all my symptoms. Family medical history, which included my children, my parents and my grandparents (of what I remembered) and the symptoms they have suffered -diagnosed and undiagnosed- and I took copies of my Drs and specialist letters. Anything that would help to finally join the dots..

To be honest I had not prepared any questions to ask, unlike at other appointments I'd had over the decades with 'lesser knowledgeable' Drs where I had always gone with a list of questions. This time I felt very prepared with all the written information I was giving, and that it said everything I wanted to say. Where as at other consultations, the Drs did not have the time or the interest in reading such lengthy reports. I remember one specialist I had seen telling me, 'no Dr will read it (an A4 and a half list of symptoms) and will believe my problems are psychological' as he himself was assuming. Thankfully none of this is the way of Dr Hakim🙂..

During the examination I was asked questions about the joints that were being painlessly 'popped out' etc and during the consultation as Dr Hakim read through all my info - which he appreciated being so informative- he referenced various episodes and asked me about them..

As my son was due to have his consultation the next day (unable to get his appointment after mine due to being seen at short notice) a lot of questions & answers were reserved until my son was to be seen. I went in with my 20 year old son, and although he had his own consultation, my case was discussed as it was of course connected..

There were a couple of things I would have liked to have asked about, but I only thought of them afterwards because of mine and my sons diagnosis.. Dr Hakim did say he could be contacted afterwards, and true to his word he has been very helpful..

Sorry I couldn't help with specific questions to ask, but I think if you cover all the areas I did then it will hopefully be enough.. I'm happy to help If you want any help to prepare for your appointment. Very best wishes xxx

[Ladyuponthelake in reply to Tillyray]

Thanks so much for your help! I've now been for appointment. I had emailed my history broken down into stages of life and queries. I'll post about my appointment. But really it's just waiting for tests now. But relieved to have someone actually believe you know your body.

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[Tillyray in reply to Ladyuponthelake]

sorry my reply was late, but very glad you've been for your consultation. I hope you found it worthwhile as I did. Good luck in your journey. Best wishes xxx

[rosserk]

Omg! I feel such a fool, I thought you were a researcher asking for patients to suggest questions. I can’t believe what I did I’m so sorry! I hope you had a successful appointment and sorry I confused your thread 😭

[Ladyuponthelake in reply to rosserk]

Ohhh don't be silly! I would like to think we share everything we find out.

💓

[rosserk in reply to Ladyuponthelake]

No that was just cheeky! I feel like a total idiot. Thanks for being understanding 😜

[Ladyuponthelake]

NO NO NO please, I happen to have similar issues so it's fine really! We beat ourselves up far too much. Please don't... it's a great question!

Biggest of HUGS xx

[Jay66 in reply to Ladyuponthelake]

Looking forward to reading about your consult - whichever bits you'd like to share.

Just had my thyroid checked (again) and it was normal (again). Apparently, I look and present with typical symptoms of a thyroid problem, but each time they check it is normal. I also flush red regularly and show symptoms of MCAS - but then they all kind of overlap so I don't know what is from what. eg I now have quite severe heat intolerance - is it from Pots or from MCAS or what? Whichever - it means no more holidays in the sun for me.

[Tillyray in reply to Jay66]

Hi Jay. Unfortunately we're in the same club. I can relate to not knowing if it's POTS, MCAS, and also for me, wondering if some is due to menopause☹ - hormone problems said to make EDS symptoms worse- but I'm gaining knowledge and hopefully at some point in this crazy journey, all will be clear...

Regardless of which is which at this moment in time, getting relief from the worst symptoms is priority, so I'm trialing treatments both pharmaceutical and holistic, vits & minerals..

I too can not tolerate heat. Even British summer is unbearable and night-time is awful, the over heating inducing all other symptoms..I have a large fan stood at face height next to my bed..Drinking water constantly and taking the Nuun electrolytes is helping somewhat, but managing it is a 'full-time job' and it isn't easy...I hope you find ways that help.xxx

[Jay66 in reply to Tillyray]

Me too - I am in peri-menopause. I have a turbo fan next to me in my bedroom. I have not found anything at all which helps, and due to my uncontrolled blood pressure the GPs won't give me HRT. If any of the treatments you are trialling have an effect, I would love to hear. The only thing I am taking extra is L-Carnosine.

[Hidden in reply to Jay66]

Sage helps control "hot flushes" - try sage oil capsules or leaf tea. The itching can be controlled with fennel seed - try capsules. It controls gastric upset too. I have had a great deal of support from using agnus castus from the side effects of peri-menopause as this is a herb that regulates oestrogen. Don't take when you are on your period though or it will make for heavier bleeding/longer periods. As with anything herbal - discuss it with your GP first and stop taking if you feel any adverse effects.

[Ladyuponthelake in reply to Hidden]

Liqurish root is good for gastric problems, chew it raw but don't swallow it. Or maybe a tincture.

I've never had any menopausal issues due to chemo and radiotherapy treatments.

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[Jay66 in reply to Ladyuponthelake]

Used to love liquorice. When I was little my mum used to buy us a stick of root to chew on. I live near Pontefract - liquorice capital of UK - there is an annual festival for it.

[Jay66 in reply to Hidden]

My GP is very anti-herbs and also against patients trying to heal themselves (except to lose weight which he is very keen on). How do you use agnus castus? I now have incredibly heavy periods!

[Hidden in reply to Jay66]

Jay - as you know from my earlier post here my son has no doctor. Yesterday he had to have an ambulance attend as another fall caused further injury. He had had a serious UTI infection (one of the reasons I posted here as I wanted him to get treatment from a GP) and I had successfully treated that with cranberry and garlic in high doses - he cant take the juice due to gastric problems and took cranberry capsules instead (40,000mg daily in fact). Being basically bed bound and largely immobile is not good for your body as it needs the circulation that comes with movement to enable certain systems to function properly - such as the digestive and urinary systems - which is why wheelchair and bed bound patients suffer badly with these problems. The paramedics confirmed he was clear of a UTI and advised me to keep treating him with it. I realise that this is not "regulatory" treatment but we are in a very difficult position and I long ago taught myself about herbal remedies - its for us - not for everyone and I strongly advise anyone thinking of trying these remedies to research them properly and seek professional advice. Medicines like asprin are derived from herbs - salycilic acid is originally from willow bark in fact. If taken properly they can be just as effective.

Agnus castus is also known as "chasteberry" - I take one capsule a day personally. This combined with the sage oil and the fennel has absolutely ameliorated my symptoms but it was a "learning curve" and I now find that this is sufficient to stop all "effects" for me. You will need to play with your 'doses' start with the minimum and gradually increase or decrease as your needs dictate. I started with just one fennel seed and that had little effect - I take 3 daily - no more itching!. I take no other medicines other than my herbs and Ive checked that these do not interact with anything I might take for an 'emergency" pain relief such as ibuprofen, for example. Never take herbs - as with most medicines - on an empty stomach, and don't mix with alcohol (unless you are taking a tincture of course, and then only in the prescribed or recommended dose). The agnus castus reduced the heaviness of periods over all but I found if i carried on taking it, it made them last longer and were heavier so you do need to take a break during those seven days.

I buy the raw powder from a trusted UK source and make my own capsules - it saves money but you can buy them pre-prepared online and in healthfood stores.

Different herbal remedies suit different people. I know that many people swear by turmeric as an alternative for NSAIDs for example and gives fewer side effects than say, diclofenac, but it too can cause gastric upset. We use high strength omega 3 fish oil instead now - that has been very effective as an anti inflammatory and my son says that he probably wouldn't go back to NSAIDs now even if a doctor offered it to him. But that's him - other's needs may be different.

[Jay66 in reply to Hidden]

Thanks for that - given your circumstances I really appreciate the time you have taken to explain. I will give it a go, as I have no hope now of getting HRT which has eased all my friends' and my mum's bad menopauses.

I do hope you get somewhere fast with getting a GP via whatever means you have left.

[Hidden in reply to Jay66]

Its a work in progress. I will do an update if I achieve any success. Thank you Jay and good luck! (I have a few minutes to go online while J is resting thank you)

[Tillyray in reply to Jay66]

Hi Jay. Just to let you know, I'm taking oil of evening primrose with starflower by Lamberts (vegan) said to help with menopause and night sweats and after a couple of months I think its helping. I wouldn't miss it now anyway just incase🙂 I also take a 300mg Gabapentin at night too, and although I read it can cause night sweats, I've found if I miss it the opposite is true - could be coincidence or a withdrawal effect?- I take Lamberts calcium magnesium, Lamberts 'gentle on stomach' vitamin C, vitamin D - I was deficient-, Folic acid -I was deficient- and B12, also Biotin because my hair was getting thin and falling out... Let me know anything you find helpful ❤ xxx

[Tillyray in reply to Tillyray]

For reliability and price I use victoriahealth.com

Best wishes xxx

[Jay66 in reply to Tillyray]

Ooh thants @Tilllyray. I will give them all a go - as it happens I have plenty of gabapentin in stock. My armchair table looks like a pharmacy anyway...