where do I go from here, help from the experts please.

[Peanut31]

I have had advice from this forum which has really helped and I am greatly appreciated of that, but, things for me are not getting any better, in fact I feel I am back to square one again and I've just had enough of feeling like this and desperately need further advice.

My neck has began to get stiff again, (like before), I am absolutely worn out and no energy and my throat feels swollen, hard to swallow, I am still waking up feeling tired and my concretion level is going down. I have no sex drive, stiffness in my fingers and ankles and all the above started around 18 months ago.

It has been a struggle for me today and unfortunately, I have had to decline an invite out tonight as I feel so awful, but, told my hubby and son to go without me as why should they suffer.

I thought I had turned a corner, but, I've noticed I have a good two weeks then hit rock bottom again.

I have posted many times on here and with all your advice I have made changes myself but, I feel I can't do anything else without medication? and really need to know what to do next.

I have been under a Endocrinologist, but told there is nothing they can do and medication will not help.

The journey so far...

I visited my GP in February 2017 after feeling terrible, neck stiffness, no energy, tired all the time, despite a good nights sleep, hairless, weight gain, depression, freezing cold all the time, like ice cold water running through my body, couldn't think straight and conceration very poor, tummy pains.

I was given physio for my neck stiffness as the doctor wondered if it was a gym injury and I was told to take vitamin D. The neck stiffness didn't go despite the treatment and also stopping the gym for seven weeks.

In the meantime I had a blood test for Thyroid and results showed TSH 6.7 and antibodies 58 (normal <34), vitamin D 73.

As I felt so ill I asked for a referral for a specialist to pay privately (he is on the list).

I was tested for vitamin levels (they were very low) and tested positive for Epstein Barr.

As my vitamin levels were so low he concerned on getting them correct first and despite me feeling awful on every appointment he seemed to concentre on my vitamin levels only, even after seeing him several times.

My vitamin results improved to normal, but, not feeling any better I suggested a full Thyroid test (per advice of this forum) and also a scan, he thought it was a fantastic idea, my husband and I were slightly taken aback as we couldn't understand why this had not been suggested by him. Any way I had a scan in September and this confirmed Hashimoto's

my private blood results were : (taken September 2017)

Thyroid stimulating hormone 4.34 (0.27-4.2)

free thyroxine 14.1 (12.0-22.0)

total thyroxine 79 (59-154)

free t3 4.1 (3.1-6.8)

reverse t3 15 (10-24)

reverse t3 ratio 17.79 (15.01-75.00)

thyroglobulin antibody 47.0 (0-115) (it was 58 previously)

thyroid peroxidase antibodies 37.6 (0-34)

active b12 84 (25.1-165.0)

folate (serum) >20 (>2.9)

vitamin D 165 (50-200)

CRP inflammation marker <0.3 (0.0-5.0)

ferritin 54 (13-150)

calcium 2.32 (2.20-2.60)

corrected calcium 2.20 (2.20-2.60)

albumin 52 (34-50)

In the meantime and after having my scan and private blood test, he wanted me to have another blood test, after the private bloods.

I went gluten free and also started to take selenium which really helped me, I felt better, but not 100%.

Further blood test requested by him and taken in November 2017:

TSH 1.8 (0.34-4.2)

free thyroxine 16.3 (12.0-22.0)

vitamin D 117

ferritin 81

So we went back to see him and as they had improved he said there was nothing further I he could do and couldn't prescribe me anything. I questioned why I feel still rubbish and he said he was permitted to prescribe anything, but he wanted me to have a second opinion to another consultant.

In the meantime I had contacted a nutritionist, whilst I mentioned to the specialist, and he had heard of, as I was also still suffering awful tummy pains.

She suggested a Advanced Intestinal Permeability test and Advanced Intestinal barrier assessment

results:

Advanced Intestinal Barrier Assessment:

Zonulin 1.3 (0-4)

diamine oxidase 74.9 (0-88)

histamine 3.2 (0-2.4) (my results above reportable range)

histamine ratio 23.4 (0-75)

LPS IgA 23.6 (0-41.5) (my result abnormally high)

LPS IgG 157.5 (<150.0) (my result above reportable range)

LPS IgM 157.5 (<75.1) (my result above reportable range)

The above results indicate that the immune system is actively fighting bacterial overload.

Advanced Intestinal Permeability test (stool sample)

Entamoeba histolytica - Positive

potential Autoimmune tiggers

Citrobacter freundii - 5.0e4 HIGH (<1.0e4)

kiebsiella pneumoniae - 1.7e4 HIGH (<7.2e3)

Additional Dysbiotic/overgrowth bacteria

Staphylococcus app. - 2.4e4 HIGH (<1.0e4)

Immune response

secretory IgA - 62 LOW (510-2010ug/g)

Anti-gliadin IgA - 38 LOW (0-157 U/L)

She immediately got in touch with me with the results and also sent a letter to my New GP (I had to change doctors as I moved). Advising I go on a course of antibiotics called Metronidazole for five days, six tablets a day.

I took this to my GP whom I have not seen since my move and was only aware of my medical history from the letter sent by my consultant.

She basically questioned the Stool sample test results and told me if i still felt so bad, i should go back to the consultant, she was also surprised I was not given any medication.

She did prescribe me the antibiotics and I take my last tablet tonight.

I explained that I still feel bad and that I am positive although my TSH is normal something is not correct, her attitude was very standoffish and I wonder if she didn't like that fact that I am trying to fix myself.

she is questioning my stool results especially the immune response ones IgA she wants me to have a blood test for this. I also said as I felt so bad and neck pain returned could I have a thyroid test, which she agreed. I am having the following on 8th January 2018 at 8.10am

TFT's

serum free T4 level

serum t3 level

thyroid peroxidase antibody

autoimmunity profile

immunoglobulin

Some responses on here have been mixed, that I should be on medication and others have said as my TSH is normal I shouldn't.

My neck pain is the same as before and it went, but now returned so I am positive it is not the antibiotics.

It was suggested I go with Dr Toft's Pulse article stating that if antibodies present I should be on medication, but will my new GP over rule the specialists.

If anyone has that copy to hand please can you PM me.

Sorry for such a long post but, I felt I needed to include all the facts.

Thanks for reading and any advice is greatly appreciated as I am desperate.

Should I self medicate?, why do I start to do this.

Best wishes.

[Sotonowl]

I wouldn't know where to start trying to answer that.

I just hope you can find a solution, good luck.

[gabkad]

When you are gluten free, what did you replace gluten containing foods with?

[Peanut31 in reply to gabkad]

I ate gluten free versions, gluten free bread mainly.

I very rarely eat cakes etc, I also stopped drinking Cherry Pepsi max (I had two 330ml cans a day.

Best wishes

[gabkad in reply to Peanut31]

Seriously then, replace the gluten foods with potatoes. One of my friends has done a lot of research on the effects of potatoes on the microbiome. Consuming a diet that relies on potatoes will result in a highly diverse microbiome which is what you need seeing as you've got a bunch of adverse things going on. You will always have some minute amounts of 'bad bugs' but potato will help to increase dramatically the numbers of 'good bugs' and suppress the 'bad bugs'.

Ask your nutritionist about this. I'm sure she's up to speed on the topic of resistant starch and soluble fibre. Potato is a great prebiotic.

Not fried potato chips. BTW. Baked, boiled, roasted.... You can eat them hot, eat them cold, eat them reheated. Doesn't matter. Eat them as plain as you are able.

I have never been a fan of potatoes but over the past three years I've increased my consumption from zero to almost every day and it's made a difference. And when it's not potatoes it's beans or lentils. I think though that to start with potatoes are better. Beans and lentils have a lot of tough fibre.

[Peanut31 in reply to gabkad]

Thanks so much, like you I have always stayed clear of potatoes, but I will definitely give it a go and mention this to my nutritionist.

She is very good, but still early days with her.

Best wishes.

[gabkad in reply to Peanut31]

The other thing you could ask your nutritionist is about goat milk. Unlike cow milk, goat milk contains galacto-oligosaccharides. These are not digestible by your body but provide for bifidobacteria in the bowel. (1/3 of the calories in human milk are galacto-oligosaccharides present for establishing the microbiome of the baby.) Goat milk will increase the percentage of beneficial microbes in the bowel and outcompete the bad ones. Goat milk casein is also easier to digest. It is closer in structure to human milk casein. Just that goat milk is not a source of dietary folate.

[TSH110 in reply to gabkad]

gabkad This is very interesting info. I have read stuff demonising the humble spud and advising total avoidance, but I am a big fan and they seem to suit me well. I grow lots of different varieties on my allotment. I try and avoid all those processed gluten free products.

[gabkad in reply to TSH110]

Good for you about the allotment! In the UK you have a mind boggling variety available. Not to mention your growing season is enviable. Over here my allotment is now under a thick blanket of snow. It's cold out there and windy.

Next year I'm planting Red Maria. I am now in love with this potato.

[TSH110 in reply to gabkad]

gabkad i don’t know that one I will look out for it perhaps it is less suitable here. I grew some cool purple ones made an interesting pie topping!

[gabkad in reply to TSH110]

You have so many to choose from!

Allotment gardening is a form of anarchy! We do not rely on corporations for food. Yay! Too bad everyone can't or won't do it. Stick a spanner in the works, that's for certain.

[SlowDragon Administrator]

Are you also strictly soya free? This can affect thyroid

Obviously your thyroid is (or has been) affected by Hashimoto's. But figures are improving as vitamin levels have improved

No recent B12 test. Last one was pretty low at 84.

Have you tried adding good vitamin B complex and sublingual B12 lozenge daily?

If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 3-5 days before any blood tests, as biotin can falsely affect test results

endo.confex.com/endo/2016en...

endocrinenews.endocrine.org...

Eating liver once a week should help keep ferritin up

The fact you are positive for EBV is possibly significant

If you google Hashimoto's and EBV or glandular fever you will see masses of posts about the connection

Here's Prof Toft latest article

rcpe.ac.uk/sites/default/fi...

Michael Moseley book Clever Guts is good on gut biome

[Peanut31 in reply to SlowDragon]

Hi SlowDragon

Many thanks for your prompt reply and the article.

I’ve not gone soya Free yet as the nutritionist is going to run some extensive food sensitivities test and a special diet on healing the gut.

I’m sorry I forget to post my B12 results

They were 1106 in November 2017, so had increased dramatically, so much so, that the Endocrinologist told me to take one three times a day rather than every day.

At the minute I’ve been so ill, the antibiotics we’re making me physically sick. That I’ve not tried further changes.

I phoned the doctor and they said to keep taking the antibiotics, but only three instead of six a day.

Being sick has now stopped and my appetite has come back, but prolonged the length I take them.

I’ve not have the energy to do anything.

I know my neck stiffness is not to do with the antibiotics as I started to go downhill again a week before I started the antibiotics and getting the same symptoms.

I suppose I’m naive in thinking that seeing a Endocrinologist it would solve my issues, but to keep going to him several times, each time feeling rubbish then being told I’ve improved can’t help you sorry.

I’ve lost faith, my family are desperate to fix me as I am.

I’m only 39 years old, always a positive person and known as a fixer amongst my family, but on this occasion I can’t fix this nor can my family.

Best wishes

[Nanaedake in reply to Peanut31]

Metronaidazole is a very strong antibiotic and it could take time to get over taking it. I found it knocked out good as well as bad bacteria and took me a good few months to recover from taking it. A good diet is important and if you don't feel like eating then try nutritious soups made from scratch with natural ingredients like butter, onion, vegetables and chicken. Add a little rice for more substance if needed. Avoid gluten free supermarket substitute foods as they are often full of unnecessary additions and fat. Just eat plain veg, fruit and meat to be gluten free.

[Peanut31 in reply to Nanaedake]

Thank you for your advice.

It’s greatly appreciated.

Best wishes

[Nanaedake in reply to Peanut31]

Also, keep a look out for urinary tract infections after taking antibiotics for bacterial infections, they may clear a lot of toxins and your bladder might struggle to cope so if you have any signs of a urinary tract infection then get your GP to check a urine sample.

Signs of a urinary tract infection might include change of urine colour to darker or cloudy, discomfort, burning sensation, change of odor or blood in urine. Don't hesitate to visit GP immediately if you have any concerns as it's important to protect kidneys.

[Blue_Bee]

Hi Peanut31, I’m sorry you’re not feeling well currently — understatement! :-(( Good on you though for battling on and reaching out for help. Recovery from Hashimoto’s can be tough, as we all know only too well. I’m in the trenches with you, as are many others here.

Question: when your endo says “medication will not help”... is s/he talking about thyroxine (T4), tertroxin (T3) and the like?

If so, then I would question that. Get a second, endo, thyroid specialist opinion.

At one point you say your TSH was 6.7, and then most recently 4.34 (0.27-4.2) And you tested positive for Hashimoto’s antibodies. If both TSHs were tested against the same range (0.27-4.2) then surely that, in combination with your antibody results, is Hashimoto’s Hypothyroidism and requires T4/T3/NDT (whatever mix and dose is best for you) for the Rest of Your Life. NOTE: I am not a doctor and have zero medical qualifications. That said, the facts of your results speak for themselves.

You sound like you have extraordinary grit and determination to get well (all those blood tests!) and I’m sure all the various dietary changes, vitamin supplements etc are helping your system heal.

But if you have Hashimoto’s Hypothyroidism then your body simply canNot produce the necessary hormones which every one of your cells Needs to be able to use all those vitamins and good nutrition.

Surely you are not being asked to manage Hashimoto’s Hypothyroidism without medication...?

[netgrouchy in reply to Blue_Bee]

Blue_Bee - thank you for your very sensitive and encouraging response. As a Hashi sufferer, I totally agree that we cannot survive without: "...Hashimoto’s Hypothyroidism and requires T4/T3/NDT (whatever mix and dose is best for you) for the Rest of Your Life."

Having recently played around with my dosage, standard 100 mcg - upped it to 150 mcg for a brief period then dropped back to 100 mcg - I even went without for alternate days in a one week period - I can confirm that the only sensible way is to follow and maintain a regimen of T4/T3/NDT (whatever mix and dose is best for my body for the Rest of MY Life.

Recent issues with swollen legs, unbearable pain in both knees and constant neck pain slightly alleviated by daily intake of Vit D3 [IU4000/daily], B-12 Complex and generous amounts of fruit and veg. NO soy products; NO legumes; NO cruciferous veg and bare amounts of gluten thru Arabic bread. NO repeat NO consumption of sugar/sweets i.e. desserts, chocolates, beverages - cola, commercial fruit juices, candies, etc. ZILCH. Only fructose from fruits.

Despite above personal dietary norms, I continue to battle weight gain, pain and occasional brain fog. Cannot begin to entertain a thought of the consequences WITHOUT MEDICATION.

Peanut31, I wish you the very best in your continued quest for wellness. Now that you have been able to raise the levels of Vitamins, please direct your attention to the EBV issue and try, difficult as it is, to NOT stress too much. Again, it is easier said than done but we do ourselves more harm than good with stress. Conserve your mental and physical energy to fight the good fight.

I have just spent the last half hour researching an article which I had scanned some time ago and thought would be helpful here. I was about to suggest reading Anthony William - The Medical Medium Thyroid Healing. At my initial reading phase he has contradicted what many of us believe about medication for thyroid issues. He insists on EBV being the main culprit and that we can definitely reclaim our thyroid glands. He contradicts the consumption of cruciferous veg and claims they get a bad name.

Never sure whether I can share links - please share another method where I can send you the info i have just read. Failing that, we can buy:

Medical Medium Thyroid Healing: The Truth behind Hashimoto's, Graves', Insomnia, Hypothyroidism, Thyroid Nodules & Epstein-Barr Hardcover – November 7, 2017 by Anthony William ..... His views are contrary to what simple lay people like me understand.

So many of us want to help each other but like Blue_Bee, I have absolutely no medical background, just Hashimoto's - diagnosed since January 2000 [plagued since 1990] It has been a very long 27 year sentence. Nelson Mandela was freed after 27 years on Robben Island. I want to be well!!! I want to reclaim the last 27 years but that is not possible, so I aim to be well from hereon in! So many of us want to be well.

Looking towards a healthier 2018!!!

NG

[Peanut31 in reply to netgrouchy]

Thank you for your support and advice.

All the best.

[netgrouchy in reply to Peanut31]

I have created a .pdf file with the highlights of an article and would like to share it with you. Please email me [e-mail]

Cheers

NG

[Treepie in reply to Peanut31]

The medical medium gets his information from a " higher spirit" . I think you will be better off ignoring him.No doubt some of his information will be OK and give legitimacy to a good money making operation.A new version of snake oil salesmen.

[Peanut31 in reply to Treepie]

After my 4th visit to him and still feeling awful and then he said sorry there is nothing I can do, I said “so your telling me this will be my life like this forever”.

He said he can’t prescribe anything as it will make me feel worse.

He is on the sheet supplied on this website. I realise it’s not a recommend, but I took comfort in knowing that he may help me.

What do I do now, get a second opinion?,

I note people self medicate but how do you do it.

Best wishes

[Treepie in reply to Peanut31]

There are quite a few who self medicate.I should start a new post to ask them to give guidance.

[whispers60 in reply to netgrouchy]

Just a little advice @ netgrouchy, if you are having bare amount of gluten you may as well just eat normal gluten containing foods, with gluten, its not the amount you eat bt the fact you eat any. I would cut it out altogether and see if that helps at all, cruciferous veg is fine to eat too, as long as its cooked good luck in your quest to feel better x

[netgrouchy in reply to whispers60]

Whisper60

Thank you kindly. It is my choice to use Arabic bread - I was not aiming to be gluten-free. I merely mentioned it as part of my dietary intake!!

Fully agree that the cruciferous veg are fine cooked. I had done a short test period of gluten-free and did experience better days but this old body is dog tired of being denied this, that and the other!!!

Feel better already with your good luck wishes!!

Huge appreciation!

[Peanut31 in reply to Blue_Bee]

The Endocrinologist would not give me anything (that covers all medication for thyroid).

No one understands it, family, friends etc and nor can I.

Thanks for your all advice.

Best wishes

[Hidden]

Hi I AM NEW TO THIS BUT YOU HAVE SUPPLIED GREAT RECORDS HOLD ONTO THEM TRY AND GET INFO FROM THE HIGHEST LEVEL NOW I MIGHT HAVE THE SPELLING WRITTEN WRONG A DR THIERRY HORTOGIE IN BELGIIUM IS PRESIDENT OF THE HORMONE SOCIETY OR ORGINISATION THERE ARE ABOUT 3,000 MEMBERS GP'S CAN BE VERY SLACK BUT TO ME IMMUNE SYSTEM /GUTHEALTH (SO GREAT PROBIOTICS) AND LIVER HEALTH SHOULD BE UTMOST IMPORTANT SOUNDS LIIKE YOU HAVE INFECTION IN GUT OR BOWEL ? I AM NOT A DR BUT I AM NOT AN IDIOT ... THIS IS YOUR LIFE AND HEALTH IS WEALTH.... SEEMS LIKE NO ONE IS LISTENING TO YOU ...ANOTHER THOUGHT WHAT ABOUT FULL BODY M.R.I. (NO RADIATION INVOLVED ) SO THE HIGHER U CAN GO TO HELP U COULD BE THE BEST WAY ♡

[helvella in reply to Hidden]

jds---1951---,

Posting in all capitals is often called "shouting" - it has a similar effect on some people to when they are actually shouted at. Although I really don't have difficulty reading computer screens, your all-capital post is much more difficult for me to read. From previous experience, ,any other members would agree.

Please post in ordinary sentence-like characters - mostly lower-case.

[Staffsgirl in reply to helvella]

Simply to agree whole-heartedly with helvella. Capitals are known to be very much more difficult to read for everyone.

[Peanut31]

Yes I use aluminium foil and never entered my head that this could not be helping.

Best wishes

[karenmo]

Dear Peanut,

Hello, and I'm very sad that u are suffering. Sending u a warm hug.

You gave a detailed list of your health issues, your med tests and your concerns. I'm an American and I don't know what the medical protocol is in England. We have western md.'s and eastern integrative/ holistic physicians. I blend info from both.

Yes, I follow GF, low glycemic, organic diet and supplements, rx and yoga/ neditation. I'm better but still searching for optimum health.

There's lots of info on this site. Wishing you a healthy journey

[Peanut31 in reply to karenmo]

Thanks for your reply.

The normal procedure within the UK, NHS is to tell you, you are depressed, go on holiday and take anti depressants (I was told that and offered anti depressants) which I refused.

When you request a thyroid test, it isn’t a full thyroid and when you phone the doctors you are informed by the receptionist there are normal, despite you not feeling normal and they have no appointments available for at least two weeks to speak to the doctor. Despite you feeling like the walking dead.

Hence why if you can afford it people try and go private, but, as I have learnt going private to see an Endocrinologist may not result in the help needed.

This forum and all the people on here has helped me so much, I am so grateful to all those offering advice and their experiences.

Best wishes, take care.

Peanut31

[karenmo in reply to Peanut31]

Peanut,

So u don't get detailed answers from ur tests til u can c dr. That is similar to the US except the drs here r pill crazy. We do have holistic/integrative drs that help w diet, supplements-- u hace that in GB?

[Littlebowpeep]

Peanut31, Hi, I am very sorry you are stuck in this pain right now. I, too, have thyroid problems. I spent Christmas day in the ER, because of numbness around my mouth, in my hands, with weakness , bad balance , great tiredness, tremors in my hands. I have autoimmune disease(hashimotos) and had a complete thyroidectomy for hyperathyroidism and thyroud cancer. This was Augest of this year. I am now seeing a neurologist for all the new symptoms. I had a brain and neck MRI just completed, came back not showing anything unusual. They are sending me back to my primary Dr. My point to you is this, when we have autoimune dise, we are subject to any disease that comes from having an autoimune disease, and that opens up a new field for the Drs. to research. I would definitely get a second opinion. My heart goes out to you, you are in my prayers, dont give up. Just because this set of Dr. dont have an answer for you dosent mean there isent one. We have to stick together in our efforts to find that one Dr. who can, and will help us, God bless you, and a belated Merry Christmas xoxo

[Peanut31 in reply to Littlebowpeep]

Thank you so much for your kind words, it sounds as if you have been through the mill yourself and more than me.

You don’t realise how your thyroid can effect you so much. I’m sick of feeling like this and my family feel useless, especially my mum as no matter what age you are (I’m 39 years old). She has seen a healthy daughter turn into a emotional unhealthy looking mess and powerless to help.

I will certainly get a second opinion, but I suppose they all may have the same opinion?.

Please take care and wishing you the very best.

Peanut31.

[Littlebowpeep]

Thank you for your kind reply, I am 72, this disease dosent care about age. I know there is an answer, but we will stand strong till it comes, till help comes. Tell your Mom hi for me, I feel for her, I have a similar situation with my daughter as well. My dear one is 47, and has autoimune disease, possiable lupus. She is suffering so much with depression, but not on any meds., her husband dosent like meds. We are all in this togethet, love Claudiaxoxo, again, thank you for connecting with your words of kindness