Hashimoto's : Hi, I have very severe symptoms... - Thyroid UK

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Hashimoto's

Hi,

I have very severe symptoms and gone down hill fast the past 3 years. Severe brain fog slurring of my words in the morning , (All the right side of my body-) spine, mid back, hip , shoulder and arm/hand, eye, head, even between my thumb and first finger all swollen and hurt and shooting nerve pains in them , the lower back pain shoots into appendix area and i am very tired every day and nauseous. MY vision is very blurry with black specs, My bowels do not work and its a daily battle with 2 x ducolax , 1 x phosphate enema and 2 x movicol daily , if i dont go daily my symptoms get worse . my tongue is swollen and painful. I have ear , bladder and skin infections recurrent . Despite 5 months on antibiotics i have had a staph scalp infection for 18 months. The right side of my face has dropped, eyelid and mouth . I am back and forward to GP and cannot hold down a job .

Tests show I have Hashimotos, TSH ranges between 8 and 15, TPO autoimmune 1300, my GP sent me to endocrinolgy and i saw them last Friday and the specialist i saw was not helpful and told me that my symptoms are not thyroid and anyway i am on the correct dose of Levythoxine . so its back to GP to try get another referral from him . im exhausted.

I follow a strict gluten free diet, if i dont i am bedridden . I also suppliment with selenium . I am on 1.25mg Levythoxine and im 12 stone.

Please, does anyone have any advice, my GP says I am the only Hashimotos patient in his surgery (he sees 45 patients daily) and he has no idea or experience in this condition.

tsh#

212 Replies
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Your TSH should be about 1 or below so you are under medicated.But you need to know FT4 ,FT3 and ferritin, folate ,B12 and D3 to get a good picture. Always show the ranges when posting as they differ from lab to lab.

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Thank you Treepie, my first full Thyroid panel was taken on Friday at endocrinology, i will repost as soon as i have the results & ranges end of next week.

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Be interesting to see if they test FT3 which is the active hormone as often the NHS does not .

In meantime you should look up info on the Thyroid UK site.

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How can you be the only patient with hashis. It’s a common illness!!!!

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exactly, so there are many undiagnosed then in our area.... getting no help .

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It sounds like you are really undermedicated. I am very surprised the “specialist” says you are not as that TSH is well over the top of the usual U.K. range that we see on here. Do you know the range and for your TSH results?

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HI, i will get the full thyroid panel result from endocrinology next week printed out and post it , and the previous ones printed out at my GP. Thank you.

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I am a bit concerned that you have drooping of your face. Have you been checked by a neurologist?

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Hi,

Thank you , My GP will not refer me to a another specialist until i am finished at endocrinology, I hope he agrees i can go to neurology now when he gets the report from endocrinology (the consultant told me according to my symptoms i am in the wrong department) he did send me for a brain cat scan a few weeks ago , but it was normal.

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Unfortunately this is happening all over the UK and I have been trying to find some kind of help from Doctors for my symptoms for years and they don't seem to know anything about this disease or how to treat it. I have found more help and support from other people who are in the same boat as I am online than anywhere else. We are having to resort to paying for our own blood tests and even buying medication from abroad because we are not being helped here in the UK. Hopefully someone on this site will be along shortly to give you some advice.

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Thank you Lora, I am so glad i found this site today, without going into detail, i am still upset by Fridays endocrinology visit , i dont know what my GP wrote on the referral , i was treated with immediate disrespect and impatience , she was thickly sarcastic writing down things i had not said after repeating a twisted version, i dread her letter back to my GP she made it quite clear what she thought , she was abrupt, rude and demeaning. she made me sound and feel like an idiot.

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They do that when they're out of their depth. And, the truth is, they know nothing about symptoms, because they didn't learn them in med school. I expect she's a diabetes specialist.

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Thank you, I looked her up, she is not an endocrinologist, it says her specialty is General Medicine, i looked it up, and found this-

"General medicine covers the vast majority of hospital-based specialties. It is comprised of the prevention, diagnosis and management of a wide range of diseases and hospital-based intervention procedures.

There are many specialties within the umbrella term general medicine, and at the last count there were 30 specialties (including sub-specialties) available. These include but are not limited to: cardiology, dermatology, immunology, neurology, and tropical medicine."

Now i really do not understand why she did not address my symptoms and told me i am not in the correct department.

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Because she knows nothing about thyroid, like the majority of doctors. I don't suppose she's had any extra training in endocrinology. Sounds like the proverbial 'Jack of all trades, mater of none'. Not worth your time seeing her, frankly.

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Sorry for jumping in on this post but I recently requested that my gp refer me to an endocrinologist who specialises in thyroid disorders and have received an appointment at the general medicine clinic at the local hospital. I don’t know whether it’s even worth going to this appointment? I’ve been trying to get a referral for years but until now the gps have refused as my results are ‘normal’. I don’t want to annoy my gp but don’t know how to get out of this appointment. I don’t want to go if I’m going to be treated as a hypochondriac or told I need counselling as I have been told in the past. Any advice?

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Difficult. And, one can't help wondering if your GP isn't setting you up! If someone requests to see an endo, why send her to general medicine?

I can fully understand you don't want to go, I wouldn't, either. But on the other hand, you just never know who is unexpectedly going to turn out to know something about thyroid. And, if you don't go, the chances are you'll be playing right into your GP's hands. He can say, well, I gave you the referral you asked for and you didn't go, so…

I think, maybe, go, but without any expectations. Just to see what happens. After all, forewarned is forearmed, and if they start treating you like a hypochondriac then you'll be prepared. It's when that spring that line on you that it takes your breath away and leaves you unable to reply. And, who knows? You might be pleasantly surprised. :)

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Thank you for the reply. The problem now is that I’ve been taking metavive recently and my results and symptoms have improved but when my gp told me he’d (finally) refer me I felt I couldn’t refuse after making such a fuss for so long! His heart is in the right place but he has admitted he knows very little about the thyroid. When I asked for a specialist he told me they all dealt with thyroid disorders. I’m afraid if I don’t go he will use it against me but I can’t face sitting in front of another doctor telling me I’m fine but I need counselling!

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Stop the metavive now, and perhaps things will go back to the way they were. But, also, prepare a list of reasons why you are not fine - and ask how counselling could possibly help a lack of thyroid hormone, anyway.

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Haha! I will but not looking forward to the side effects! 😩. He/she will take a look at my results and decide I’m fine. I’ll update after my appointment. 🤞

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Good luck!

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Mickeydooley

I recently requested that my gp refer me to an endocrinologist who specialises in thyroid disorders and have received an appointment at the general medicine clinic at the local hospital. I don’t know whether it’s even worth going to this appointment?

Please don't worry, many departments come under "General Medicine".

My cardiology and respiratory appointments come under General Medicine but I get seen by the right specialist in the right department. I think my recent breast clinic appointment may have even been under the General Medicine heading.

I'm not sure what doesn't come under General Medicine - maybe dental, surgical (just guessing), but I'm sure you will see someone from Endocrinology at your appointment. Whether that person a diabetes specialist or thyroid specialist, who knows, my money's on diabetes as most endos specialise in that. If you have the name of the person you're seeing, look them up on the hospital website.

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MY GP referred me to endocrinology, my referral appointment letter says i am attending an endocrinology clinic but as mentioned the consultant was a General Medicine Specialist and my appointment was Friday 19th July . she had predetermined before i even walked in the door that I was in the wrong department (she mentioned neurology or rheumatology) and said she couldnt refer me I had to go back to my GP and he would decide where i could be referred. She wouldnt listen to my list of symptoms, my list of illnesses diagnosed to date or my current medication list. She told me i was lucky she will keep me on as a patient at the endocrinology clinic only because of my TPO autoimmune blood test results , but as i am on the correct dosage of T4 i should not expect improvement as there is nothing else she can do . She sent me for a lot of blood tests and told me to book a follow up 4 months later and gave me another blood test request form, I see only now she ticked 2 tests, FBC and TFT, i will try to find out what they are.

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Cape

My reply was addressed to Mickeydooley in response to their post.

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Full blood count and thyroid function tests x

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Thank you. It’s reassuring to hear that. I’ll look them up when I get the name. I’m not very hopeful given my latest results but we'll see how it goes.

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And, to be cynical, there’s far more pharmaceutical revenue in diabetes care, and everyone in the chain is reaping some pecuniary benefits, whereas thyroid hormone replacement therapy is cheap, and offers scant earnings potential.

But some cagey strategists figured out an Enron-like way to put the screws to people who require T3.

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That is very true, there's not much money to be made out of T4. But, if you keep the patient under-medicated, there's a whole heap of money to be made out of treating the symptoms as individual diseases! Statins, PPIs, antidepressants, et al!

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I am quite a strong person but I have sat in front of a Consultant Endo and cried. He had just told me I shouldn't be feeling ill because my TSH was in range now. I had thought this man would know more about thyroid disease because I had researched him and he had papers published about thyroid disease. He then asked me if I would like to see a counselor because it might help me feel better. I replied that why would a counselor want to hear me talking about my hair falling out, my nails lifting, my night sweats etc etc. If you are wondering why I am posting at this time of night it is because I have just had a coughing fit and can't sleep because my thyroid feels swollen. The only Doctor who really understands thyroid disease is dead but I was lucky enough to visit him in Birmingham and he gave me a lot of good advice. I wish I could recommend another Doctor for you but as yet I haven't found another one like him. Sorry if I sound negative but this disease make you feel like this. I am now going to put a cold compress on my thyroid and try and get some sleep. This is only my opinion btw and others may disagree.

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Hi Lora,

I'm sorry to hear this, and hope you managed to get sleep last night,

Recently i also broke down in front of my GP , i have lost 2 jobs in 6 months because of my low energy levels, severe brain fog / flare up's , my GP just does not have the time in our 10 minute consultation to deal with me and i have recurrent ear/scalp/skin, bladder, infections so have to see him every 2-3 weeks.

I wish i could find a GP or endo whom actually has Hashimotos or even any autoimmune , at least then i know he would understand first hand.

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Yes I did eventually drop off only for a furry pussycat to jump on my bed demanding his breakfast lol Hopefully tonight with be different. Thanks for asking.

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Ask your GP for a copy of the referral letter to Endo.

If you don't get a copy of the Endo letter to your GP about the consultation, ask your GP for a copy.

Write a response to the Endo refuting anything that is incorrect/ inaccurate in their consultation letter and send a copy to your GP.

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Hi, Thank you, I will go straight to my GP in the morning for a copy of his referral to endocrinology and copies of all tests done so far, i have a wealth of information from this forum in just one day and i cant Thank everyone enough .

I will ensure i get a copy of the endo's report , I need to see what she writes, although i was asked to bring a list of symptoms , previous illness's and current medications i am taking, she did not write anything down and stopped me after symptom no 2 telling me they are not thyroid symptoms (but she could not see my list, nor did she allow me to finish telling her about the other 10 symptoms were , nor tell her about my previous illnesses/diagnosis's or my current medications. Quite bizarre. She is not an endocrinologist, My GP referred me to endocrinology, my online booking request states endocrinology Dept, but this Doctor is a "General Medicine specialist" .

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In your letter to the endo, you could inclide the whole list of your symptoms. It's your chance to tell them all the things they wouldn't let you say in the consultation!

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Excellent idea, Thank you

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It is your right to ask for copies of letters. I always do. My gp always said these belong to the NHS... to which I replied they do but also belong to the patient and without patients there wouldn’t be any NHS. That patients are legally entitled to the letters, it’s about them and their health .

So don’t let the GPs talk you out of it. I also ask the consultants to send me a copy of letters they send to gp after the consultation.

Good luck.

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This is exactly why many Americans DO NOT WANT socialized medicine!

Reading so many horror stories from people in the UK & even Canada. Waiting & waiting & waiting sometimes up to a year or more to see a specialist!! No way & totally unacceptable!!!

Nothing but bad news for people who are really sick & need "specialists"! Waiting and waiting to see one could be life or death!

When I was diagnosed with RA, I was able to see the RA specialist in 10 days!!

10 days not months & months or a year! That would be ridiculous!

Just because a country can say they offer everyone free "health insurance" does NOT mean the people actually get the actual "health care" they need asap!

The programs that are unfortunately government controlled here in the USA such as Medicare, Medicaid & even the Veterans Administration are a disaster!

And let's all remember when people were promised "If you like Your Doctor You Can Keep Your Doctor" under the new "government controlled" Affordable Care Act? Well we all know how well that turned out!!

Leave my darn private insurance alone! If I want to buy it I should be able to buy it without the government telling me I cannot & be mandated to go on some government controlled insurance!

When ever the government gets control & involved they Screw EVERYTHING up!

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Yes. Private insurance in the USA is good but I have found that even with private insurance you still have long wait times to see a specialist.

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Amen.

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I can see your point of view but having been a member of the HysterSisters site in the US a few years ago when I was going through menopause. I was surprised at how many women were encouraged to have a hysterectomy for heavy bleeding, fibroids etc. In this country they try other methods and they only do a hysterectomy as a last resort. I suffered heavy periods and had 5 fibroids but not once did the NHS suggest I have a hysterectomy. A lot of young women on that site seemed to embrace having a hysterectomy and I did wonder if money was an incentive for the Doctors who recommended they removed their uterus's. This is just my opinion and I don't mean to offend any ladies from the US.

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It's a myth that "socialized medicine" stops you from taking out private insurance or seeing private specialists (if you can afford it). I'm grateful to the NHS in Scotland. It's kept me alive.

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Ah, but we get the best of both worlds in the UK. If the NHS isn't moving fast enough and we can afford to pay we can pay to go privately and be seen quickly. However unlike US if we can't afford to pay we still get good healthcare and anything urgent often has a 2 week referral time. Plus we know that the advice we are given isn't motivated by money.

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We have what is called MEDICAID & the new Obamacare for people who cannot afford. Their are millions who cannot afford or do not have a job utilizing free Medicaid insurance.

usnews.com/news/articles/20...

If you look at the government management of that program, it stinks! Just like every other time the government meddles!

realclearhealth.com/article...

People that do have Employer based insurance just want the government to keep their hands off! That's all!

We do not want or need their meddling!

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I am surprised President Trump hasn't got rid of Obamacare or renamed it Trumpcare.

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I think we need to keep things in perspective. Not understanding or misunderstanding conditions that involve the thyroid is common in a good many - all- medical systems, irrespective of how they are funded. The NHS is a wonderful healthcare system in principle. I have experienced and my family have experienced wonderful care (with minimal waiting). It is not 'socialised medicine' - which is a ludicrous term, for starters. It is a medical system that is 'free at the point of care', and screaming that you don't want that would be very odd indeed.

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It is indeed "Socialized medicine"!

Please let's keep things in perspective & call a spade a spade!

Also please remember there are hundreds of specialized fields people are waiting in line to for, not just for Thyroid issues!

findingdulcinea.com/news/in...

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Troygirl - are you a troll? Are you on this site to whip up anti-NHS sentiment? You have no experience of European medicine -which you would probably dub 'socialized' though a good number of different systems exist -and certainly have none of the NHS. This forum includes many posts by suffererers deeply frustrated by a UK GP or endo's behaviour and attitude. But they are speaking from experience. You cannot. Offering a US link entitled 'Does socialized medicine work' is evidence of very little, perhaps only of the fact that you may well be on this site to promote a US system and bash the NHS. Politically speaking, interesting timing.

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Nope! Not a troll!

I am an American citizen very concerned that certain "politicians" want to take away my rights to purchase my own health insurance!

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Hello Troygirl,

You don’t say whether or not you have thyroid disease and why you are posting here.

I am not sure who has given you the information you provide on either the US or Canadian healthcare systems, but your description as above is not accurate.

The ACA does not limit your access to your own doctors and it has not taken away private insurance. The insurance carriers who provide insurance through the ACA are private insurers. You may purchase whatever insurance you want. That is why it is called an insurance mandate. Private insurers are mandated to provide insurance to everyone. Medicare and Medicaid have their problems, as do all healthcare systems, but their coverage includes the same doctors that are covered by private insurance for those doctors who accept those programs.

You may not care for the US government - and that is your right to express - but please do not spread misinformation here on this forum.

With respect to the Canadian system, you are also misinformed. At one point some time ago, people had up to one year long wait times for specialists. Most provinces have addressed this issue due to public pressure and bad press - and wait times for specialists have been significantly reduced from several years ago.

Do you still have to wait to see specialists? Yes you do, in both the US and Canada. And from what I have read here, you wait in the UK as well, where I understand, one has access to private physicians should you have the means to pay for it. In Canada, there are also private physicians in some provinces who have opted out of the public system for those who wish to and have the means to afford to see them. Whether paying privately is desirable or not is a point I am not interested in debating on this forum. I am simply stating a fact.

As all health care is rationed, either by private insurers or governments, there will be wait times for specialists.

Is either the US or Canadian system perfect? Far from it - they are certainly not by any stretch of the imagination - and I am not trying to pretend or suggest that they are, as I have experienced both systems. Access to specialists, it seems, on a worldwide basis is not easy and we are all waiting too long to see specialists.

I respect your right to your political opinions, and am not interested in having a debate about them with you. However, I do not appreciate seeing misleading information about health insurance on a forum where the people here are very ill and are seeking accurate information to help them get the care they need.

I am sorry you are suffering from RA - it is a difficult and debilitating disease. It’s good you were able to see a specialist quickly and hope you getting the care you need to feel well.

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Nothing misleading I said!

In America we have certain "politicians" that want to take anyway my right to purchase my OWN insurance!

That's my beef!

So if you are not an American, please accept my serious concerns about it!

I do NOT want the government interfering in my HEALTH! PERIOD!

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And yes I have Thyroid disease & RA on top of it!

I want to be able to continue to see doctors I want to see & not be denied coverage of certain drugs I currently have to take by some bureaucratic sitting behind a government desk!

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Medicaid patients denied coverage!

huffpost.com/entry/denying-...

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And we in the UK, despite our moaning and complaining, are terrified of the US getting in on running the NHS.

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Please post your FT4, FT3 and TSH

We might be able to help you

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Hi Freddy, i certainly will, i will post the GP tests he did and endocrinology full panel should be back by next Friday, so i will post them both together. Thank you,

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For the constipation, have you tried taking magnesium and vit C? You don't need to get either of them tested, just take some. Start low - like 300 mg magnesium citrate and 1000 mg vit C - and increase slowly to bowel tolerance. You can go up to 350 - 400 mg magnesium, but the sky's the limit for vit C. Plus they might make you feel a bit better. :)

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The sky's the limit for vit c cos what you don't use you pee out the body doesn't store it so maybe a waste of money & fruitless taking more than 1000mg

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Depends why you're taking it. But, what makes you thing that 1000 mg is all you need?

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Hi Govt (public health england) recommend 40mg daily for adults most of which is obtained dietary. Many take a supplement when unwell ie starting a cold.More than 1000mg can give stomach ache,wind and diarrhoea as side effects.

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I used to take 5000 mg daily without any stomach ache, wind or diarrhoea. I think we need to be wary of these government recommendations.

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We do - they are only guidelines but just letting people know there could be side effects of taking too many vitamins as well as cost implications. I'm glad you didn't suffer any but am curious to know what benefit you think you gained from this dose?

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Apart from getting my bowels moving again - after a stay in hospital messed them up! - none at all. But it was interesting to try. And, there are those that recommend high doses of vit C for various reasons - can't think of any names off the top of my head but I have read of people taking a lot more than that. As you say, you can't over-dose on vit C, so why not.

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I might try it as I am sooo constipated - even 6 docusate sodium a day doesn't help - I have to take movicol now & then but I need 5 mights of this to shift things!

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You can but try! :)

But, start low and build up slowly.

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Will do!

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Hi, Thank you, yes Magnesium oxide causes extreme nausea and no results , Magnesium citrate - no results, and Vit C -10 000 mg no result. I dont have normal bowels, i just cant feel anything , no peristaltic movement , no "urges" if i dont use the medications above i can go 30 days & get really ill , my GP has said now i probably need to take this for the rest of my life.

senna, aloe, etc - no results, The past year bisocodyl x 2 daily will only work with phosphate enema and movicol to help . The right appendix area through to spine is really painful and i am limping. The GP says i have to finish at endocrinology before he sends me elsewhere.

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Penny-pinching tight-wade! Well, you might just as well finish with the endo, because she obviously isn't going to do you any good. Tell the GP you don't want to see her anymore and you'd prefer to see the neurologist.

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Thank you, i will , i might have to finish with both of them , I dont think its wise for me to stay under a GP who says that I am the only patient he has with Hashimotos...

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Well, if he's never tested any of his other patients for Hashi's, he wouldn't know, would he. And most of them just don't test because they know nothing about it. They think antibodies are irrelevant. Like one doctor I saw who said he'd never had a patient that didn't do well on levo. So, I asked him how many hypo patients he had. He declined to answer! They make these wild statements but it doesn't mean a thing.

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Hi,

He never tested my TPO either , it was a stand in GP who did that ,

and he refuses to test my daughters TPO despite me asking him to do it , her TSH is 3.6 and shes only 17 with many thyroid symptoms including a very swollen neck/goiter.

He tells me her TSH is within normal range and she doesnt need any further tests. can i ask to go under another GP at the same practise? there is a really good one there, the one who stood in for mine. is this allowed?

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I'm afraid I have no idea what is allowed and what isn't. I don't live in the UK. But, your daughter's TSH may be in-range, but that doesn't mean it's healthy. You're hypo when your TSH gets to 3, and in some countries you would be treated at that level. Your GP sounds pretty awful! I do hope you both get to see someone else.

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Hi Grey Goose,

I am reading with interest all the comments - you are a great communicator. Things seemed to be getting worse in England not much better in Australia so do you mind me asking what country you are from, All I can suggest with all the English thyroid suffers is to bombarde your local politicial members with your complaints as well as putting it in writing like how you write in these columns and you demand him to send it off to the Health Minister as something has to be done if you all do it something may be done. It is worth a try. Mary Shoman is a Thyroid sufferer she used to write for the New York Times and still writes for "Very Well.com" another Thyroid site. if you knew someone in the newspaper industry they may write a story. Make sure you tell them about the website and how many members there are. It is all worth a try - if you don't - nothing will ever change.

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I'm from England, but live in France.

I think all the things you are suggesting are being done by those well enough to do them. But, you must remember that people who are being mistreated are unlikely to be able to write letters and protest. And, that is exactly why the medical profession/government are getting away with it. They are victimising people too sick to stand up for themselves.

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Mary Shomon is just great - well worth a read 😊

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Thyroid doctors in US aren't any better than out of country . Just because your tsh is in normal range doesn't mean you feel better. We all know it isn't true.

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You can see any GP within your practice if you live in the UK, I’m surprised you’ve managed to stick to the one unless you always ask to see them? Often we are just put with the first one that has an appointment!!

Good luck seeing the other GP. And make sure you are adamant that you do not wish to see that ‘endocrinologist‘ again!! Gentle hugs sweetie 🤗

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Yes, you can see another GP at the same practise. It is allowed. I personally wouldn't see again the GP you've been seeing.

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Yes, in the UK you have the right to make an Appointment with any GP you like in your practice. All test results, referral reports, etc though will go to the GP you're registered with but all GPs in your surgery can access them. When you find a GP you like you can also ask the Reception to fill in a form to register with them. Very important to have supportive GP who will order tests & refer, etc.

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You should be able to go to another doctor in the practise. In my first clinic here they assigned new patients to particular doctor but also said we were free to see anyone. (I saw three and had to move to another clinic....couldn't find a one to take this seriously)

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Plus the NHS only test the Tpo antibodies not Tg antibodies. Only the latter was raised in my case. So how would they discover Hashimotos. Also they don't measure the free T3 it really feels hopeless. That's why they think they rarely see it in their surgeries.

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You're absolutely right. And, by the same token, only testing the TSH means that you can't diagnose Central hypo, which is why they think that's rare, too. It's an absolute disgrace. But, I sincerely believe, their aim is to diagnose as few people as possible.

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Agree. Yes it's all about saving the GP money, even more so now that that GP practices are run as a business. Unfortunately we have gone or are going down that route and it will soon be only the wealthy that can afford to be well.

You would think by now some doctors would of cottoned on to these problems...but no.

A family member is a doctor and I cannot get into a discussion with him he just believes the 'set in stone' ways. He even told me (without any prompts from me!) that an endroconolgist was telling him how dangerous NDT and T3 drugs were.

What can I say 😀 I dare not say what I take!!

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None of his business what you take, anyway. It's your body, you do what you like with it.

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I tried NDT and thought it was great ,full of energy and lost lots of weight .Had trigger finger as you know it’s to do with inflammation and finger locking etc .Had steroids injection and eventually cleared up only to start in other hand .I always suspected the NDT so even though I was so full of energy and weight loss was brilliant I knew the NDT was causing problems and endocrine doctor was correct that it’s not safe for everyone due to the levels of T3 in it .Stop taking it and have never had any more problems with fingers locking etc .Some people do not realise other symptoms going on in there body can be caused by the likes of NDT because they feel so well on it .I think it’s best to keep a open mind on it .Some do well on it others don’t so find what suit you as an individual .

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I do have an open mind that's why I read absolutely everything I can on this. Unfortunately I've gained a stone and I cannot lose weight. I've never had any hyper symptoms only hypo . I agree it is a minefield and when you are as poorly as the poster of this initial post you can only feel very sorry for this person as they are obviously very unwell.

I hope that they can get the right help.

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Dr surgeries have always been run as a business. GP s have never been employedby the NHS

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T3 and t3 free are very important, I went to a holistic doctor and she didn't care what my tsh was, she wanted to know my t3 results.

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No, better to find another doctor!

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Please try Dr Vogel ... Linoforce .. it’s senna coated Flaxseed .. find it on Google ... it’s been a lifesaver for me ... it works well without pain

Chew a dessert spoonful before bed .. plenty of water !

Mx🌹

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Its a big ask but can you afford a private consultation? There’s a 9 month waiting list on NHS. I got an appt within a week.

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This is exactly why many Americans DO NOT WANT socialized medicine!

Reading so many horror stories from people in the UK & even Canada. Waiting & waiting & waiting sometimes up to a year or more to see a specialist!! No way & totally unacceptable!!!

Nothing but bad news for people who are really sick & need "specialists"! Waiting and waiting to see one could be life or death!

When I was diagnosed with RA, I was able to see the RA specialist in 10 days!!

10 days not months & months or a year! That would be ridiculous!

Just because a country can say they offer everyone free "health insurance" does NOT mean the people actually get the actual "health care" they need asap!

The programs that are unfortunately government controlled here in the USA such as Medicare, Medicaid & even the Veterans Administration are a disaster!

And let's all remember when people were promised "If you like Your Doctor You Can Keep Your Doctor" under the new "government controlled" Affordable Care Act? Well we all know how well that turned out!!

Leave my darn private insurance alone! If I want to buy it I should be able to buy it without the government telling me I cannot & be mandated to go on some government controlled insurance!

When ever the government gets control & involved they Screw EVERYTHING up!

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UK medics call Hashimoto's autoimmune thyroid disease. They frequently don't understand the difference between hypothyroidism and autoimmune thyroid disease (Hashimoto's)

For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also extremely important to test vitamin D, folate, ferritin and B12

Low vitamin levels are extremely common, especially if Thyroid antibodies are raised

Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and fasting. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)

Last Levothyroxine dose should be 24 hours prior to test, (taking delayed dose immediately after blood draw).

Is this how you do your tests?

Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies or all vitamins

thyroiduk.org.uk/tuk/testin...

Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have special offers, Medichecks usually have offers on Thursdays, Blue Horizon its more random

If antibodies are high this is Hashimoto's, (also known by medics here in UK more commonly as autoimmune thyroid disease).

About 90% of all primary hypothyroidism in Uk is due to Hashimoto's.

There are almost 2 million UK patients on Levothyroxine.

Link about thyroid blood tests

thyroiduk.org/tuk/testing/t...

Link about antibodies and Hashimoto's

thyroiduk.org.uk/tuk/about_...

thyroiduk.org.uk/tuk/about_...

List of hypothyroid symptoms

thyroiduk.org.uk/tuk/about_...

The aim of Levothyroxine is to increase the dose slowly in 25mcg steps upwards until TSH is under 2 (many need TSH significantly under one) and most important is that FT4 in top third of range and FT3 at least half way in range

All four vitamins need to be regularly tested and frequently need supplementing to maintain optimal levels

NHS guidelines on Levothyroxine including that most patients eventually need somewhere between 100mcg and 200mcg Levothyroxine.

nhs.uk/medicines/levothyrox...

Also what foods to avoid (eg recommended to avoid calcium rich foods at least four hours from taking Levo)

Come back with new post once you get results and ranges

Sounds like you are seriously under medicated if TSH is so far above one

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There is some possibility that you might have Bell’s Palsy - the drooping of one side of the face is a classic sign of this. It can take anywhere from 6 months to 2-3 years to resolve. Have they ruled out a mini stroke or TIA? You might want to ask MD about this possibility. It happened to my husband. Wishing you all the best and very sorry you are so ill. Sending good thoughts your way for a recovery.

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Hi,

Thank you, Initially with my symptoms i requested a neurology referral, but my GP insisted i needed to go to endocrinology , the reason he gave was because of the Thyroid blood test results being the problem and he believed endocrinology was where we should start, he refused to allow me to see both simultaneously .

The GP also sent me for a brain cat scan , he told me endocrinology would address all my symptoms , which they have not and i am back to GP to request a neurology referral as soon as we receive the letter/report from the consultant at endocrinology .

I will look up on the internet what blood tests for TIA/mini stroke should have been done and get copies of all bloods done by the GP on Monday to make sure the right tests for TIA/mini stroke has been done.

Bells Palsy is also an autoimmune, it could be that, did your husband get diagnosed and treated by neurology or your GP ? and do you know what tests were used to diagnose it?

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My husband developed Bell’s palsy and we thought it was a stroke. At the emergency room , he had a brain CT scan and they found a pituitary tumor the size of a golfball in his head. So the Bell’s palsy actually helped get his diagnosis of pituitary tumor - we were told by the neuro that the drooping was NOT from the tumor and they confirmed Bells. However, we were so overwhelmed at the ER after finding out about the tumor that I do not remember how it was diagnosed.

To answer your specific question, he was diagnosed by the neuro and then followed up by the neurosurgeon after his surgery for pituitary for the Bells also. He recovered from the Bells in about 5 months. We were very lucky to a find good neurologist and neurosurgeon and he is OK now.

He had been complaining of visual field disturbance and double vision. Our GP told him for 5 years he was a hypochondriac. The private ophthalmologist we finally saw told him that he couldn’t possibly have double vision and it was his imagination after charging us $1000 for testing on his very fancy equipment. Thank God he is OK and just grateful it worked out in the end.

All the best to you and hope you feel better soon. 🙏🏻

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Thank you for sharing,

You were very fortunate to catch this in time ...

I have severe pain over the right ear, nausea, drooping of the right eye and mouth, twitching/spasm in the right eye and spasm in the forehead.

My vision has been very blurred past 2 years and eyes gritty too with black specs .

I am more determined now to get to see a neurologist, although my brain cat scan was clear, this is something not right.

Thank you for mentioning the ophthalmologist, i was about to book an appointment after reading this , i wont waste the money.

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Thank you so much for all this information, i will go through it carefully and do the tests privately and follow your guidelines.

But i will still post my results next week of the tests endocrinology did on Friday. I will get a print out of the GP's tests also, I am really not sure what he did , he only told me TSH and TPO result. I dont think either of them did the 4 vitamin tests but i will do them myself privately .

1.8 million with Hashimoto's is a massive portion of the population and probably quite a lot more undiagnosed.

I will pay attention not to take calcium rich food before Levo.

on diet , my body tells me not to eat gluten, if i am unaware of food content and i ingest gluten within minutes my eyes water and go very blurry , brain fog increases , headpain, i go into full vicious autoimmune /inflammation attack and it lasts few days or until it has passed through my system . even most gluten free flours produce similar and rice cakes, it seems like all grains.

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The ophthalmologist can also refer you to neuro, you don’t need the GP for that if you want to go another route.

Are you in the UK Cape?

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Hi Lulu,

Thank you for this useful information , i may need to go this route,

I am in North West uk, so few specialists here in these parts it appears.

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Cape,

Please do see the ophthalmologist- if you see black specks in your eyes - these are floaters and a sign that the vitreous fluid in your eyes is moving around - you should have your retinas checked if nothing else to make sure they are OK and not detaching. There is no fancy equipment required for that - they just use local anaesthetic drops (and dilate pupils) and look at the back of the eye. Many people have floaters and they are not serious but given all your other issues and what you are going through, you would at least have peace of mind.

Definitely press to see the neuro - I would also recommend a cardiologist consult to rule out TIA - not sure GPs are equipped to diagnose this.

All the best.

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Thank you, I will see all 3, if my GP wont let me see an opthalmologist, i will book that privatly.

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With you taking long-term antibiotics, have you also been taking probiotics? Some insist on a commercial solution, but I've been quite happy to make and take kefir and sauerkraut. "Water kefir" uses water and sugar and then can have fruit juice added for a second fermentation, making a pleasant fizzy drink. Milk kefir is similar to natural yoghurt and, due to the calcium content, plus not wishing to kill any of its beneficial bacteria, it should be taken midway between your doses of antibiotics.

A product called monolaurin or lauricidin may help with the infections. The most cost-effective option is an 8oz tub of lauricidin pellets from Amazon, and they recommend (wouldn't they!) that it's taken for several months, which could be about £10 per week for a highish dose.

I've read (on a genuine medical site) of bathing with a drop of bleach in the water for S. aureus infections, but that may only be when there are no breaks in the skin and should be thoroughly researched first.

The Bell's palsy could be due to Lyme neuroborreliosis, and Lyme disease could also be what's led to the opportunistic infections and some of your symptoms. There are higher risk areas of the country, plus higher risk activities, but it's possible to get infected in a park or garden or even indoors.

If you have online access to your surgery you could spot when your GP is on holiday and make an appointment with another, or ask for a phone appointment on a day he's not there. There's also the 111 telephone service for advice, and you can ask that your GP isn't informed of your call. GPs shouldn't mind us getting second opinions, but they're only human, even if some think they're deities ;-)

Sorry to hear of the endocrinologist's attitude, particularly in light of your high TSH. I wonder if she thought you were non-compliant over taking your levothyroxine? I'm still pained by memories of a visit to a consultant and his follow-up letter, from over 20 years ago!

Very best wishes for gaining an improvement.

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Hi, and Thank you,

A product called monolaurin or lauricidin may help with the infections- I am very intrested in this product and will look it up .

I do eat sauerkraut, and drink milk kefir, olives in brine and I juice a full celery head daily before bed , all this i started a month ago (i was bedridden then for 2 months ) so there has been some improvement, i also take mango steen, tumeric, wheatgrass and spirulina daily sprinkled on my food .

Bathing in bleach i have not tried for my s aureus but i have tried epsom salts and borax (seperatly) there is some initial improvement but as soon as I eat I break out in large staff lumps on the scalp , definatly a gut connection of some sort.

Lyme neuroborreliosis, and Lyme disease, my uk bloods were negative but then I read I should do the tests privatly in Germany or USA but then NHS would not recognize the results..... Do you know the best way to have proper tests done that would be recognized in the uk ? I got very ill in Thailand 20 years ago but the hospital were not able to diagnose anything (malaria symptoms) but as the years went by i have suspected Lyme as my symptoms are so lyme typical.

The facial drooping /The Bell's palsy could be due to Lyme neuroborreliosis, you are quite right, i never thought about that.

Thank you for advice on how to work my way around my GP, i will find out when he is off .

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Well done in being so thorough.

Things have improved recently in the UK for new cases of Lyme disease, with the new NICE and RCGP guidelines. I've read many stories of people having disappointing appointments with Infectious Diseases consultants in the past, who denied that Lyme exists here. The co-infections (or alternative infections) possible in the UK are rarely tested for and there may be a shrug and a hope that whatever's prescribed will deal with most of it and any problems in a few years' time will be for someone else to deal with. Many people who believe they suffer from the much disputed Chronic Lyme experience increased symptoms years after the initial infection. How to treat effectively is still the question.

You may get some help by mentioning Thailand, but NOT Lyme to the NHS. I've heard of people taking in the Porton Down test form to get their GP to fill it in and arrange the blood test (as the GP would be unlikely to know about it), and I've also heard of tests getting lost or not done for other reasons. Only a GP with an affected family member or friend is likely to take any notice of blood tests from overseas. Dr John (Jack) Lambert in Dublin is one of the few trusted doctors, but his waiting list is long. There's also the Well-One Clinic in Beverley, East Yorkshire.

If you or a friend have a printer, the Porton Down form is linked from gov.uk/government/collectio...

For the private treatment options (Dr Lambert and Well-One) it's better to be advised what tests to have done.

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An interesting reply to the article in the Guardian on the 20th:

I had something similar many years ago, probably from being bitten by something in India. It wasn't Lyme disease but the symptoms were similar - ringworm type rashes on my arms and arthritic pains in my knees. My doctor was puzzled- she tested for Lyme disease, no result. Strangely, the ringworm rings and the arthritis came and went for about two years and then just stopped.

At one time my own doctor was away and I saw her (young, male) colleague, who made it quite clear that I was not getting pain or (the very visible) rashes, it was all in my head; 50 year old woman, of course I imagined it.

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I also have been diagnosed with Hasimotos . This is a condition where the blood starts producing more anti bodies which starts attacking the thyroid. The doc did not raise much concern and said it’s life long and medication is required for ever . Besides that the suggestion I have received it to exercise a lot .

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Actually, the antibodies they measure in your blood - TPO and Tg antibodies - do not do the attacking. It is lymphocytes produced by the immune system that do the attacking. The TPO and Tg antibodies just clean up the traces of TPO and Tg that have leaked into the blood during the attack. They do no harm.

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So many of us here have been misdiagnosed and misunderstood. ... You would think that any MD should know the basics of hypothyroidism, but they don't. (I'm afraid you are worse off in the UK than we are here (US) . ... Knowing what I know now, and having gone through what I went through before finding an OLD doctor (who used his eyes and ears) what I would do, if I were you, is get NDT (Natural Dessicated Thyroid) from Thailand, and self medicate. I believe some of the regulars on here can direct you how to get it. ... I would NOT delay, as it is quite possible to pass the point of no return! ... And you sound like you are just about there!

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So many people just blame thyroid for everythink. And try found solutions on internet. They think nobody understood them but the problem is on their mind

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What do you mean?

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He? ... Meant to insult me. ... Just shows his ignorance. ... I would almost wish hypothyroidism on him as a punishment for being insulting to his "elder". LOL!

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P.S. My "mind" is perfectly healthy. (As long as I'm on my thyroid meds!) ;~)

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Don’t get upset or rise to the bait Gingersnap. We’re all feeling rubbish and life is hard ..

but it’s a sunny Sunday so I’m going to smile if only for today 😊😊

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Since you don't "believe in" hypothyroidism (i read some of your previous posts) why do you bother to come onto a hypothyroid group? Just to insult people? Does that make you feel superior? Just in case you think so, here is a fact: I am 80 years old and my IQ is 135. If you can't top that, just shut your mouth! ... Thankfully, there are many good people on here who are here to HELP. ... Why don't you take some time to go study up on real medicine. ... BTW: Your English is atrocious!

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Keep calm. Ignore. He’ll just be loving the fact that he’s upsetting you. If he keeps on, hopefully an admin may come along and tell him to wind his neck in.

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Doh! I just replied to the wrong person and I had to delete! What I said was I thought my spelling was bad but I am starting to feel better about it .... I blame brain fog or me being 60 ;o)

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greygoose has commented elsewhere that poor spelling is a sign of hypothyroidism. Seriously 😊

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Really? My husband tells me it is because I have blonde hair ;o)

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That's absolutely true. :) Like dyslexia, also. But, I don't think the person in question has English as a first language. His grammar is as bad as his spelling and his manners.

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Is it a man? I didn't realise ...

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I don't know. There's no information on the profile. But Scrumbler said 'he', so I continued in the same vein. :)

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I once struck up a friendship with a woman who claimed to be a Pharmacist in the US. She kept sending me these weird bird videos and I then started to suspect she wasn't a woman at all so I blocked her. You never know who you are talking to on the net. I am exactly who I say I am and would never deceive anyone especially when it is to do with health matters.

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That is absolutely true. But, I have to confess. I am not a goose. :)

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I am not a furry cat either but I have one just like the picture on my profile :o)

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I feel so disappointed... all this time I believed you to be a wise French goose dispensing thyroid advice and bons mots :D

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Yes, I know. It's a lovely idea, isn't it. With my headscarf, pinny and knitting. But I'm afraid there's just no truth in it. Sorry. :)

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Ah, but are you grey? I absolutely agree, don't take the bait, some people haven't got anything better to do with their time than to be antagonistic for the fun of it, there's another one like that on the ITT site - don't bite 😊

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Oh definitely grey! By name and by nature. lol

Of course, if anyone goes too far, you just report them.

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Oh my. I just assumed it was a man 🙄. Now I feel guilty of gender discrimination ☹️

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Don't feel guilty, that's one of the disadvantages of trying to keep your identification secret - his fault, not yours. It says clearly on my profile that I'm a woman, but a lot of people still assume that I'm a man! lol Don't know why…

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You cannot ask if it is a "man" anymore.

The regressive leftists have seen to that. The person could be anything now days. Be careful labeling people incorrectly or they will come after you because you were offensive & insensitive!

The world has gone insane!!

One example of just one Regressive State. (there are many more)

Here is a list of all the different boxes you can check on New York City forms & applications:

Bi-gendered

Cross-dresser

Drag King

Drag Queen

Femme Queen

Female-to-Male

FTM

Gender Bender

Genderqueer

Male-to-Female

MTF

Non-Op

HIJRA

Pangender

Transexual/Transsexual

Trans Person

Woman

Man

Butch

Two-Spirit

Trans

Agender

Third Sex

Gender Fluid

Non-Binary Transgender

Androgyne

Gender Gifted

Gender Blender

Femme

Person of Transgender Experience

Androgynous

So you are not allowed to ask if it is a man!

newsmax.com/Newsfront/NYC-r...

trove42.com/new-york-city-r...

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That's all very well - although, actually it isn't, it's ludicrous - but how do we refer to people if we don't know if it's 'he' or 'she'. As in: The OP states that he - or she - isn't on thyroid medication…

What do we say, 'it'? Do we call them 'sir' or 'madam'? Why make life so difficult? If the person doesn't fill in their profile with the basic information - and what could be more basic that ticking 'man' or 'woman', then I don't see that we should feel obliged to worry about their sensibilities.

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Not much going for him really - but at least he doesn’t have hypothyroidism 😊

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I'm actually going to apologize to you for my bad mood. ... Just one of those days.

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Sawff, Its a lovely sunny day, go for a nice walk.

Its better for you than being a troll

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Thank you, i have always wanted to try NDT but in africa where i lived for the past 20 years, it was not obtainable and we could not get it past customs . I am living back in the UK now I will look into it further, i think a problem is when you relapse/flare up, your too ill to help yourself and think logically, this forum helps tremendously.

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I did well on NDT for years, then it got to the point that I had to take so much of it, that my Doc said: "Lets just put you on T3." ... I have done well on T3. ... But ... The only T3 that works really well for me is the name brand Cytomel. The last year has been hard, since it wasn't available for months at a time. ... I imagine I would do well on NDT again if that's all that was available, but I would probably have to take about 12 grains a day!

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Speak to endocrinology consultant about whether they can try you on NDT or T3 along side Levothyroxine. I've just started on NDT, trying to get dose right at the moment, and initial results are promising, I've also read lots about others having significant symptoms improvement with this course. In some people thyroid failure also means body can't convert T4 (Levothyroxine) to T3 so you only get 1 of the 2 chemicals the body needs. Unfortunately where I am NDT and T3 are only available on private prescription (cost seems to be about £10-15 per week depending on dose needed + private consultation fees as I don't have private medical insurance) so it's a noticeable cost but not as extreme as some medication can be.

Your quote right though, GPs and even many endocrinologists don't understand or have any experience of Hashimoto's as it's very uncommon (even more so in men).

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Hi,

Yes, it must be so much harder for men to get help with autoimmune disease much harder than women.

I was quoted here earlier by someone on the forum that there are 2 mil hypothyroid patients in the uk 90% have hashimotos, so that means 1.8mil in a population of 73 mil ,

that is a LOT of people and many more undiagnosed. We should not have a single GP who isnt fully up on thyroid disease.

I will go privatly if i can't get the right help on NHS, are you able to get nDT and T3 prescriptions from an online GP app like Babylon , or would you have to see a specialist consultant in person? which brand NDT and T3 are you taking?

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Reject the first opinion as they are all classic symptoms and you have been under medicated for years etc they are not follow correct procedures and nice guidelines which state thyroid patients on levo have to have a tsh under 1.5 to ever feel optimal and function Normally and you have been dismissed and treated badly and make a complaint to your local CCG just google it online to get correct contact details and demand a second opinion and email thyroid UK for consultant list then pick one that you want to see in your area after researching them.

Then gets some quercetin to help with your symptoms and look into NDT while you wait so you can increase you dose and get optimal your tsh needs to be below 1.5 likely to feel normal so self source NDT and get your life back as soon as possible do not wait for the GP or endo appointment.

Also to improve bowel function try flaxseeds if you haven't already and prunes and live yoghurt if you can tolerate but try to cut all diary out aswell as gluten to reduce antibodies rising and inflammation.

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All good advice Merlio but take care with flaxseed. It contains high levels of alpha lipoid acid which seriously interferes with conversion to FT3. I found this out to my cost when I took the latter for burning of nerve pain. Pity because it’s effective.

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Don't blame thyroid for everythink.

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Why? A lot of symptoms we are experiencing are because our thyroids aren't working properly.

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But some of us have other conditions and it muddies the waters if we assume everything is related to thyroid issues.

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Yes I get what you are saying but if you have other conditions you can join other forums for advice to see if that may be the case. The only thing wrong with me is that I have thyroid disease. I have just read your profile and I can see have had a lot of health problems it must have been so difficult for you. x

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You may only have thyroid disease but the OP has clearly got symptoms which fall outside the symptomology and aetiology of thyroid disease.

Other contributors to this thread have flagged up possible neuro symptoms and the OP has acknowledged that she needs neuro advice.

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I am glad she has someone like you to advise her. All we can do is share our experiences with our own health and hope it helps others to get the best out of the NHS.

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There is a wide breadth of knowledge on this forum and we are so lucky to be able to share our experiences.

I hope Cape very soon gets the help needed.

Stay well

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Hi - I have Hashimotos and take Nature throid , vitamins, nutriadrenals which all help . Recently I have been having Hyperbaric Oxygen. My husband was diagnosed with MS and oxygen is a treatment for this ( not through the NHS, I may add). It is good for AutoimmuneDiseases so I also tried it. It gives me energy and interestingly my response to insect bites had disappeared. I used to swell up enormously with a mosquito bite- so much so that I hated going on holiday. It is not too expensive (£20-30) a session. Look for Hyperbaric Oxygen for MS - it’s a charity. It helps all autoimmune diseases. Where do you live? London is more tricky to access it but there is a good Centre in Suffolk. Good luck .

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I always swell up after insect bites. I was in the garden yesterday and even though I wear insect repellent some pesky bug got up my sleeve and I now have a nasty bite on my arm.

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Hi just reading through the chat trail and saw your reply. My husband has MS too and has been having HBOT for a couple of years. I swear he is ageing backwards!! 🤣 I made a call just yesterday to go along and talk with them about me having oxygen. I have Hashimoto’s (for 26 yrs), low B12 which I’m just getting injections for (private) and a few other things that all add up to debilitating fatigue. So, like you, I’m hoping the oxygen will help and give me a much needed boost to my red blood cells. And.....now thinking about your comment on mozzy bites too. Last year we went to Spain and over the course of the week I got 30+ bites, strangely enough I always got bitten overnight in our room 🤔 couldn’t find where they were coming in from (poss some other insect?) but my husband didn’t get one....it sounds like everyone could benefit from oxygen treatment 👍

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Thank you for this, I really would like to try hyperbaric oxygen and I will contact the charity , I live in Warrington north west UK .

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Hi Cape,

Where are you located ??

If you are in

London or can get to London/Kent I can give you the name of abrilliant Endocrinologist

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Could you message me that name please Doris27, I’m desperately trying to find a good endocrinologist, or even a decent one will do! Thank you xx

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Hi Thank you , I am in Warrington North West UK , if you do know a decent endocrinologist please could you give me his details, he may consult online even

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I would think that you are hypothyroid. What are your blood results? However, I certainly think that not all your symptoms are all associated with that condition.

They sound similar to mine. I am seeing a neurologist next week. Nerve pain and numbness in my legs have got worse over recent weeks. I too have very slurred speech in morning and my doctor is investigating cortisol levels.

It’s important that we (or our medics) don’t assume that all our symptoms are associated with one condition.

I would urge you to seek a neurology referral as soon as possible.

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Thank you, TSH was between 8 and 15 in a 6 month period, TPO autoimmune 1300. Full thyroid panel I will only have next Friday and will post.

I am going to my GP in the morning to push for neurology referral, please let me know how yours goes and what tests are done ,

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You poor girl, that is absolutely awful !!!!

Might I suggest that it is quite likely you have something else going on and not just Hashimoto’s. When I first got sick I started with high anti TPO (over 1600) was referred by my GP to an Endocrinologist who put me on levo telling me I’d feel better but not for a few months. 3 months later I was so so much worse and she had no idea why. Because of all the nerve pain I was referred to a neurologist who ran the most comprehensive list of blood tests which finally showed I have a rare form of Sjogren’s Syndrome and am also border line for Lupus (both autoimmune diseases). I am now under the care of a fantastic rheumatologist as well as the not so fantastic endocrinologist.

Many of your symptoms are similar to Sjogren’s and very many Sjogren’s patients have Hashimoto’s. Do you have dry itchy eyes and a dry mouth. I hadn’t even thought they were symptoms of something but they really are and apparently the first indication that maybe I had more than Hashimoto’s.

Good luck finding out what is really making you sick.

Best wishes

GC

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Thank you,. I haven't noticed dry mouth but my eyes feel dry and gritty not itchy but also watery and blurry it alternates, I will look up sjogrens online ,

You have been very fortunate to get a diagnosis ,

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Dear Cape,

You are certainly going through some trauma - I read with interest your story and I can honestly say that most of what you have written about I have had a lot of your complaints from time to time but not altogether, At stage I thought I may have MS I was diagnosed with Hashimoto's . I really feel for you I still have my good days and you feel so good but the bad days I wished them away. I have a bunch of friends and we go out to lunch regularly it doesen't matter how I feel I make an effort to go if I didn't I would never go out and that isn't good for the soul. For constipation I take 1 heaped dessertspoon of Psyllium Husk I put it in a small milk shake before I go to bed you add a banana or a little flavouring. Drink it down fast as the Psyllium thickens quickly. Another natural one is a teaspoon of

linseed not the oil just the seed drink a glass of water and then another teaspoonful and another glass of water do it each day and you should be back to normal in a few days. (Health Food Shop)

Another thing that has made a difference to my life - I take powdered Tumeric it has made a big difference to my life. Buy a cup of Loose Tumeric from a Health Food Shop and place in bowl and crush a little under a quarter of cup of Piperine (Black Peppercorns) crush them in a coffee grinder put into bowl and mix with Tumeric. Put into container that doesn't let light in - start off with a half teaspoon for a week i put it in a tea strainer and shake it over a glass with a small amount of milk ( Milk puts a coating on the lining of your stomach) the residue that is left in the tea strainer I keep it and add it to soups and casseroles etc.

If you don't have any side effects after the week take a teaspoonful I take it when I go to bed . Apparently some people take it twice a day morning and night I feel so much better than I have felt for years but I do have my bad days but no where as bad as I used to.

I noticed that you have been taking selenium I have taken it and it is great but I would have a blood test if you have been on it for awhile you need to have a break from it from time to time. I have never been a pill popper I hate it but when you have to I try to stick to the Natural tablets.

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Thank you, I must admit if I had to take say what I thought I might have MS is top of the list,

I feel so ill these days I really don't socialise as any energy has to go into work as I need the income.

I w I'll buy the linseed seed and organic tumeric and try both.

Psyllium will keep the bowel contents moist but i don't seem to have peristaltic movements to receive messages to cause a bowel movement and so I need the other stimulants , the phosphate enema is a must for me .

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I'd say get another GP, this is a serious life threatening condition that needs managing properly. At least get them to refer you to a specialist. Good luck

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So sorry you sound so poorly. The lack of muscle movement for bowel reminds me of my brother with Multiple Sclerosis he has this problem, there is a lot we do not understand.

Definitely agree with others that you should see a different doctor.

When you post your blood results some incredibly knowledgeable folk on here will try to help you. If you don't get the relevant results it's worth paying for a simple pinprick home test as others mentioned. Without that I would not have found out that I had Hashimotos.

Keep your pecker up.

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Thank you, yes this website/forum is an amazing find, I've learnt more in 24 hours about Hashimotos than I had in 10years of being diagnosed with it, I am so appreciative that others have spent time and effort to respond .

As I mentioned earlier i do also seem to have most of the MS symptoms

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Constipation is a symptom of hypothyroidism. Get your thyroid hormones, both T3 and T4 in range (preferably optimal), then you might find the constipation goes away.

The problems with the right hand side of your face don't sound thyroid related.

Do get an appointment with another GP at the same surgery and ask to be referred to a neurologist.

Don't wait for the Endo letter - it could take many weeks to arrive.

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Thank you, yesterday I went to the GP offices and my GP appointment to ask for another referral to a different endocrinologist and Neurologist is booked for 28 August.

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I am so sorry it sounds like you have been getting bad support. First some of these symptoms may not be curable by sorting out your thyroid so you need to have proper examination - the face dropping sounds like a neurological condition

Second I am no expert but your TSH is so high for suggests something is wrong with your thyroid and clearly the levothyroxine is not enough or there’s is a different problem

Third are you sure the endocrinologist is. Specialist in thyroid as many are not though they might have explanations for other symptoms

Sounds like you need to demand to see a different GP who will stand back and take a more holistic view and do a range of tests

Good luck

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Hi and Thank you, I have an appointment to see a GP 28 August to ask to see a different endocrinologist and a new referral to neurology. The endocrinologist I saw last week was a general medicine specialist , although my letter said I was attending endocrinolgy .

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Please look into B12 Deficiency/Pernicious Anemia! I have Hashimotos (then thyroid cancer) and I have Pernicious Anemia. b12deficiency.info/signs-an...

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Thank you for this, very interesting, even my swollen tongue symptom I have never heard others have

And it mimics MS.

I think this condition needs special attention and I will have tests done soonest .

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Swollen tongue could be Pernicious Anemia- b12 deficiency commonly associated with thyroid problems.

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Dear Cape,

You poor thing! It's so sad that people are left to deal with this alone. As everyone else has said you appear to be severely undermedicated. Thyroid symptoms are so incredibly diverse it's hard to know if you need to see another specialty as well. I urge you to read Izabella Wentz. She has a great website too where you can get a lot of info without buying any books. There are other great sources like Marc Ryan and Datis Karrazian. Unfortunately when it comes to Hashimoto's you really can't rely on doctors. They may mean well but they simply don't know and you need to be your own advocate and researcher. Your GP sounds honest at least, it's better when someone admits they don't know. Chances are, statistically, there are probably undiagnosed Hashimoto's cases coming to his practice regularly. Have you tried food intolerance testing? You may need to avoid more than gluten. Probiotics and digestive enzymes? Look into trying a diet like Autoimmune Paleo for a while. You don't need to just accept what conventional medicine thinks is good enough for you. It's not!

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Thank you for this, I had not heard of autoimmune Paleo but I will look it up on the internet. Food intolerance testing, do you know where I can get this done ? I have removed gluten, sugar and I am removing dairy from today. I do take probiotics and enzymes from solgar every second day and juice whole head celery every night and drink it before bed. Also eat olives in brine, kaffir and sauerkraut daily.

My diet is full of supa foods it helped me all these years but as mentioned earlier in posts, it no longer keeps the flare ups away, I'm in a constant flare up condition without remission :(

The past 2 years

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Have you had your b12 vitamin D folate ferritin and magnesium levels tested?

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Hi, I am not sure if the endocrinologist did this on Friday, i will find out tomorrow but if she did not I will have it done privatly as soon as possible.

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Perhaps you may benefit from reading how I got rid of my Hashimoto's, symptoms, and fixed my thyroid: healthunlocked.com/thyroidu...

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I had TSH=8 when I first discovered my hypothyroid (stemming from Hashi's); I was a basket case at 8, and an even bigger basket case at 21. You probably have under-range FT3 (T3 is what makes people feel well). Are you on a comprehensive supplement program, and have you eliminated all other foods (beside gluten) which could conceivably cause loose gut junctions?

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Hi Eddie and Thank you,

I can also be a basket case too when my TSH elevates and if i ever hit 21 i cant imagine what chaos i might cause, i am gluten free and sugar free, shortly to be dairy free also, i take mango steen, tumeric, wheatgrass and spirullina , beet and berry powder on all my food, suppliment with selenium , i juice a whole head celery every night before bed . my diet is carefully planned and i eat as much supa foods as i can afford .

if my liver is down, i take milkthistle, selenium, ALA and NAC . and Vit D i take daily 3000mg .

and have you eliminated all other foods (beside gluten) which could conceivably cause loose gut junctions? - what foods might do this?

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Low levels of healthy gut bacteria can contribute to loose junctions. Encouraging healthy bacteria means avoiding stuff like gluten (of course), processed meats, alcohol, fast/junk foods, refined oils, artificial sweeteners. I suspect Izabella Wentz explains what to avoid in one or more of her books (see bn.com, amazon.com). I was dairy-free for a long time, but once my gut recovered, I started using a limited amount of dairy products again without problems, esp. cultured (I mix certain powdered supplements into a 12-strain kefir).

While I was very sick, I could not tolerate T4 (levo) at all well. My first major realization that it might be possible to get well, was when I went on T3-only, which I was on for ~1.5 years. It was almost magic. I tolerate T4 a little better now, but I have to keep my FT4 low in range, or even below range, so that T4 does not destroy my sleep quality. When my hypothyroidism was first discovered and my doc put me on levo, I had an instant disaster: the levo caused such high anxiety, that I could not stay on it. This made it impossible to become euthyroid, until I discovered the T3-only protocol. I now take a low dose of levothyroxine (50mcg) plus 12.5mcg or 25mcg liothyronine, each day.

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Cape, do you take K2 with your Vit D and what sort of preparation is it? Is it a spray or tablet? I find the BetterYou Vit D3000iu+K2 oral spray really good.

I wasn’t aware until it was pointed out to me on here that VitD needs K2 to work properly in the body. I’m a bit brain fogged right now, so I’m sure one of the more experienced ladies on here can advise correctly how it works.

Really push for a Neurologist referral too, get tested for TIA and also hemiplegic migraines. I suffer with these quite badly and I have the same symptoms that you are describing with regards to the facial droop, speech, loss of strength and grip down the one side, I can’t raise my arm on that side and my leg is severely compromised when I’m sitting or lying down and need to move it! I was sacked because they thought I was drunk, I was told I’d had a TIA but when I went into hospital for it, a neurologist diagnosed me with hemiplegic migraines which mimic a stroke, you can google it, but be warned it isn’t pretty. Took years to get my medication right for it, I’m now on anti- epileptic meds (sodium valproate) for them and until recently when my symptoms started getting worse, they were under control!! Now I’m getting them again and I’m remembering how bad they suck!!

I hope you get some answers fast, I’m usually loathe to suggest this but if nothing is working, you’re not getting anywhere, go to A&E and tell them that the symptoms are getting worse, you can’t cope with it no more, you’re getting severe migraines with them etc, really ham up the symptoms and how much they’re distressing you, they should get a neuro consultant down to see you, and even if it is only the on call registrar or junior, at least you’ll be in the system and they’ll probably arrange some imaging of some sort!! I wouldn’t normally tell anyone to ‘use’ the system like this but I think your symptoms and suffering have gone on enough sweetie and you need to get some answers!!

Good luck- gentle hugs 🤗

Shelley xx

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Thank you Shelley,. I have sat up at night considering going to the A&E as I just feel like I'm not moving forward and since October 2018 I have lost 2 jobs also, my bosses both thought i was a secret drinker (I don't drink at all) but I can understand why they think that. I take 4000 mg Vit D and a K2 pill

I have no strength in right arm , hand and I also can't lift my arm up , it just won't go there, I can't write with it anymore, my handwriting is completely illegable and if you hold each of my fire arms the right side is much less sensitive than the left.

I can't sit it's too painful I can stand , walk or lye down, I avoid sitting and I even raised my laptop to standing position .

Thank you for your input ,

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I just looked at your profile and you haven't put anything on there yet. It might help if you shared your story on here because some members might be able to help. I lurked on here for a couple of years because I had given up hope on anyone ever being able to help me. I have been given some advice that might improve my health so I am glad I decided to share my story.

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The way you describe your right side is almost identical to mine! Only difference in what you’ve written and what I’d describe is that I can’t stand up, or walk far at all, I now use a cane indoors as well as crutches outdoors or usually a mobility scooter. I can’t sit for long especially in the same position, if I lie down it has to be on my right side, it hurts on my left and you’ve no chance of getting me to lie or sleep on my back!!

Please think about going to A&E and get help sooner rather than later lovely xx

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Hello there, so sorry to hear what you're going through, your life sounds a nightmare. Please don't despair. I too have Hashi. and have struggled in the past for some 17 years, having only had the Hashi confirmed about a year ago. Levothyroxine never did work for me - gave me palpitations and feinting. Through various research and a helpful GP, I've been able to stabilise my conditions pretty well. This is what I've found to help me:

I switch between Metavive bovine/porcine supplements (UK supplier) and RLC Laboratories Westhroid Pure Natural Dessicated Thyroid - has no binders whatsoever, (which I purchase without prescription, from the USA) - it's pretty expensive when you include Excise taxes and delivery, but it's made an enormous difference to my life. I also eat pretty large amounts of Raw Organic (unpasteurised) Sauerkraut (for live bacteria). I found that my digestion had previously been disasterous and this had also manifested itself in an unexplained horrible ache in my left shoulder/neck/spine area. Private testing had shown that I had no bacteria good or bad at all in my gut. My digestion is now completely stable with no indigestion/constipation/heartburn at all. Finally I top this all off with one drop, twice a day on the skin, of Nascent Iodine (by Harmonic). Nascent iodine is safe taken on the skin, it leaves a very slight yellow stain on the skin which when the body has sufficient iodine, no longer disappears as it is absorbed (a tip from my homeopath!). Hypothyroidism plays havoc with iodine levels and I have found that two drops a day is always absorbed into my body and I never seem to have too much.

I hope the above might give you some guidance into things you could look into.

Good luck, keep strong.

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Sounds familiar to me. Where about are you?

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Hi Cape - I have tried to read the whole thread but it’s long! Forgive me if someone has already mentioned this. You say you have been on antibiotics for five months! Are you taking probiotics to help rebuild your microbiome? You may well have yeast overgrowth after being on antibiotics for so long. I had this for many years. Yeast overgrowth loves sugar and makes you crave it to feed them. Find a way to cut back on your sugar and carbs. Keto worked for me to get rid of yeast overgrowth and many other issues like brain fog.

So sorry you are going through all of this. Keep researching until you find what will help heal you. Start with trying to heal your gut. Antibiotics can help with healing many issues but they trigger their own response as they kill off all your good bacteria along with the bad.

Hope you find your answers.

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Sorry to hear about all your issues. Some should clear up after about 4 weeks on T4. It's half life is about 7-10 days so it also takes time to build up in your system. Push your doctor for as many referrals as needed. Please check your supplements as they could be toxic at high dose. Some supplements get pee'd out other build up in your system

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Iodine

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What?

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Lora7

Please ignore that reply from eat4longevity.

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eat4longevity

Iodine is contraindicated when Hashi's is present, it can make things much worse. As mentioned in reply to your reply on another thread you can't possibly say that someone needs iodine unless it has been tested and found to be deficient. It used to be used to threat hypERthyroidism and can make hypOthyroidism worse. Very unsound advice that you are giving. Nobody should supplement with iodine unless testing has shown a deficiency, then supplementing should be under the guidance of an experienced practioner.

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Hi sorry to hear about your various symptoms. Blurred vision with black specs can be liver related. I had same. Ask for heart, liver and kidney function tests. Also dropped facial muscles could be related to stroke which you may not realise you've had or, as in my case, benign brain tumour called an acoustic neuroma especially if you are getting headaches or aching on one side only.. Either way I would say ask to see your doc again and if not sympathetic, another doc. Staph infection sounds like your liver is really struggling with toxins. So huge amounts of water to flush through system which will relieve constipation, fruits in season, blueberries, not bananas they constipate, green veggies, spinach, lettuce etc and loads of garlic (natural antibiotic) and onions. Not rice -constipates. Sweet potato good as a starch and natural yoghurt if you don't react to dairy. If you do then try sheep's or goats yoghurt to get right bacteria in your gut and alleviate staph infection. And get off the phosphate, dulcolax, movicol asap and do it naturally by drinking water (you can have herb tea, decaff coffee etc but not part of your water allowance. Acupuncture would be fantastic for you if you can afford it as it sounds as if your liver and kidney pulses are extremely low. Good luck

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Thank you so much, I do have headaches on the right side of my head above my ear which are accompanied with severe nausea . I will increase water intake especially now as the heat wave is making me worse , yes it's only the right side of my body with all the pain and inflamation and drooping , I went yesterday to make an appointment at my GP to try to request a neurology referral but the earliest appointment date is 28 August and I was told at reception a neurolgy appointment could take 6 months or longer. I am considering going private but due to the cost I am concerned I won't be able to afford the tests the neurologist may recommend MRI scans and bloods .

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The only way home is to pay £180 or whatever and be honest and say at appointment I don't have health insurance so can I go back into NHS system? Hopefully because you are going in at consultant level you will get MRI faster. That's the way I did it. I saw consultant radiologist at Royal Marsden in Jan 2005 and was at Royal Marsden having treatment by mid March. But had MRI on NHSin July 2004 before radiotherapy for 6 weeks at RM.

Go back to your GP and say this is not good enough. This is an emergency. Or take yourself into A&E and tell them what your symptoms are.

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PS if you lose your balance when turning head quickly without focusing your eyes then it is quite likely to be inner ear problem so possibly acoustic neuroma. Acoustic neuroma can also cause nausea as your head/body tries to estimate where you are in space. Good luck

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Thank you for this,. I did not know it was possible to go private and have tests done NHS , I received copies if all my tests results done so far, and my GP letter referral, TSH shocking at 15.9 and TPO 1570, I will post results for opinion now, and see how to get to see him asap .

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It only works if you see a consultant (preferably a professor) who works in an NHS teaching hospital and sees patients privately so he/she can swop you across from private to NHS. Had to look up TPO. Think my white blood cell count under control at last. Have you been managed to get ENT appointment for your nausea, headaches yet?

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Hi and Thank you,

my GP will only allow me one referral at a time, I've had endocrinology , I self referred to MSK and have a spinal MRI next month. A stand in GP also scheduled me for a pelvic scan a few weeks ago and I have constant pain in that area.

A professor /consultant in private consultation who teaches in the NHS that makes sense , the decision to make is wether I look for a neurologist or endocrinolgist. I am still considering , a neurologist would cover more issues if I do have other autoimmune conditions.

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Or it would be ENT if it was related to your headaches, dizzyness and nausea which could be inner ear. If you need to see other consultants and your GP is refusing your treatment you need to check yourself into A&E and make a complaint to the Clinical commissioning group through your local Patient Advice and Liaison service rep. Which you could do without of course. As if you aren't under enough stress.

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Hi, I was on Thyrohormone 1,25 for years and my TSH went 15 next test 8. So the doctor changed my daily pill to TIROSINT 112 and I went to 4 in a month' s time. Try it. Very efficient.

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Hi Kelly, Thank you, I will ask the GP if he would prescribe this to try as the levothyroxine is not helping , he might want me to see another endocrinologist first though if he's not confidant to prescribe it, he's really out of his water in Thyroid disease

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Yes a good endocrinologist will tell you what to do.

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Chack symptoms of lack of iodine and conseqvences. Similar to hipertiroidis but far to be same. If find lack, start with 0.3.mg. increase every few days. Otherwise troubles. Find somebody skilled with iodine if you will try. First dose unbelievable. But just first one in case of Hashimoto. It is trouble but hipotiroditis which is caused by it is worse. So finger in it. For constipation I use Castrol oil 2 tea spoon daylly. Meaby not best but I will pass anyway.

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Hi, Thank you, a few years ago I did try luigols iodine, I put a tiny drop on my foot , I reacted badly, flare up was very strong and then I read that it was contra indicated in Hashimotos , I can't remember the details clearly as with the heatwave I have severe flare and brain fog . I still have the bottle of luigols iodine . I would try it again see the result . Castor oil I have expeller pressed hexane free I have a large bottle but it says for external use only , what do you think?

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I stay at my opinion. Read what I write. 1 drop of iodine is very big dose. Research what I suggest. If you would be allergic or intoleranced on iodine you would not be born. I think you have severe lack of iodine. And when you applied a drop it was like to step under watherfall. Explore that I suggested. You can be self-confident but it will not help. Proove I'm wrong. Starting dose is in Hashimoto very low. For hardest cases meaby 0.05 mg. I taked 0.7 mg and had symptoms ... More then to suggest you to study symptoms of lack of iodine I can not do. If you are trying to find miracle stick or enjoy in searching solution like me, welcome into clab.

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Hi Cape.

I had to take my own health in to control. Cause some the doctors have no clue. I started to heal myself by drinking natural herbs, motherwort which helps the immune system. But first of all what one do you have. Overactive thyroid or underactive thyroid.

Cause some herbs are not good. But for me we are all blessed to learn and share.

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Someone ask why iam here if I don't believe......sorry but I believe only real doctors no. Internet doctors no people who crying like baby's. Take a look, thousand people fight cancer and never crying. Iam here for fighters no for miserable people. Etc today

Have a bite from mosquitoes I think hypothyriodisn is the problem lol BB

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There are some excellent Doctors out there, but unless you have unlimited funds to go privately , it's very difficult for the average person to access them.

I am not here looking for sympathy, I am here for insight from others who may have walked the same route and have advise to share, I have gained so much from this and been able to guide my GP as he has limited time to consider my case.

Why are you here can I ask?

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Please read my story, take your medication for now but you can slowly eventually get back to healthy by making major lifestyle changes, it’s not an easy venture but it works trust me I have done it it works. I wasn’t one with much will power, if you had asked any of my classmates when I was younger I would’ve been the last person to succeed at this I have a very addictive personality. But I finally decided to choose my house over a lot of foods and bad habits that I had and I was able to reverse my thyroid condition please go to my story, I hope it can help, I wish the world would stop making our thyroid sick: healthunlocked.com/thyroidu...

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Thank you I will read the story now

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Did you post your results and I missed them? Was looking for them.

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