HI I was diagnosed end of last year with HYPO. Also told I could have MS OR GRAVES DISEASE . I have been palmed off for years with there is nothing wrong with you its just mentalhealth until end of last year my problem is whilst trying to figure out what is actually wrong with me all my symptoms don't tie up to HYPO . My symptoms are achilles heel on my left and right (right side been the worst atm but left isn't far off) it feels like elastic I'm having to tip toe around as I can no longer have my foot normally positioned flat. My right leg is painful to,my knee cap is spongey tender to the touch which has resulted in me having to wear a leg brace just to be able to move.(shuffle)
Then there's my speech previously no issue and could form a sentence without issues now I stutter all the time .
Seizures daily when they happen I'm left unable to speak I suffer from mind fog(that's something that is present all the time now but gets worse after every seizure)
Chewing of the tounge
Skin is literally drying up and forming sore patches all over my body.
Light sensitivity- indoors and outdoors
I've gone from been a hyper 30+ year old man to been like a 80 yr old man. I can't take my kids to school any more or even go to the shops which both are a ten minute walk away from where I live. And if I do try I need to stop every couple of minutes to take a break. And then when I do finally get in (10 min walk takes me an hour) I'm left with worser pain in my legs and achilles heels and soon drained it takes me 3 days to some what recover.
Is this common with hypo in males or females. Or am I and my partner correct in thinking they may have just got it wrong and I actually have MS or graves disease or diabetes? Is any one else suffering from my symptoms.
I go to bed every night scarred because I don't know if the next Seizure is going to be my last! I stop breathing every time I try to sleep so I'm lucky if I get 5 hours of sleep in a week.
Someone please help me understand if this is all symptoms of hypo or if the Gp could be wrong
I was prescribed carbomizol which they have just stopped straight away after I was told you can not just stop taking these tablets it needs to be done gradually. They didn't help in fact they did the opposite
Sorry for the long post.
Stu
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Stub1984
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The first thing to do is get a copy of all your blood test results which if you reside in the UK you are entitled to. You may be able to sign in online after getting a password from the GP reception but if not they should do you a print out. Make sure you ask for all the lab ranges to be provided together with the results.
For thyroid function you are looking for TSH, FT4, FT3, TPO antibodies and TgAb antibodies. Vitamin D, B12, ferritin, folate should all be tested too. To diagnose Graves disease the blood tests are TSI and TRAB but these would be done at a hospital not the GP surgery. It can be more difficult to get results from a hospital. Always ask for a print out on the day of the appointment.
When you have results then post them here for further assistance. Symptoms are not a good way to check for thyroid dysfunction since other conditions can have the same or similar symptoms.
Sounds like your doctors are very confused! They don't know what the hell they're doing. So, the first thing you need to do is find out what they have been doing. Get a print-out of your blood test results. You need to see exactly what they've tested and exactly what the results were. Where thyroid is concerned, doctors have a nasty habit of just guessing and not doing the right tests. Which leads to prescribing the wrong treatment. We see it all the time on here.
So, ring the surgery, ask the receptionist to print out all your results, since the end of last year, and you will pick them up at her convenience. The law says that you are entitled to have them, so don't take any nonsense from her. Then, you post them on here, with the ranges, and let's have a look. No point in us trying to guess, the doctors do enough of that for all of us!
First step is to see exactly what has been tested and equally important what hasn't been tested yet
You are legally entitled to printed copies of your blood test results and ranges.
UK GP practices are supposed to offer online access for blood test results. Ring and ask if this is available and apply to do so if possible, if it is you may need "enhanced access" to see blood results.
In reality many GP surgeries do not have blood test results online yet
Alternatively ring receptionist and request printed copies of results. Allow couple of days and then go and pick up.
Come back with new post once you get results and ranges
Low B12 can cause swollen enlarged tongue
Sleep apnea (stopping breathing in sleep) is more common with autoimmune thyroid disease - Hashimoto's
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
Medichecks currently have an offer on until end of May - 20% off
Hi all thank you very much for your help. I'll ring in the morning and see if i can either gain access online or if they can print them all. Another thing I forgot to mention is that if I eat salt or anything high in salt i have a seizure. They happen all the time but as soon as that salt hits my system my God do I know about it . Once I've got all my blood work do I just post it on this thread? The gps are awful I had a lovely doctor but he left and didn't do his notes correctly on my file. So half of the stuff he told me isn't recorded which makes me look like a fool. Thank you so much for offering advice and to look at my bloods. I've lost so much of my self and feel like giving up everyday since all this craziness. Post faith in everything. Until I saw this group. So thank you 😊
Hi I have m.e. and my thyroid showed up as a problem 6 yrs into the illness some of the symptoms you have could cross over into m.s. or m.e. with thyroid a secondary factor. Push for a visit to a neurologist to confirm or disprove m.s. There are m.s. Centres all over who would also be happy to talk to you about it. They have various treatments there like hbot /oxygen therapy that can be really helpful. As a resource I would recommend the Dr myhills website while she's known for her work with m.e. The info on her website crosses over into other illnesses and can support a self help regime that might keep you on your feet and help overall. A lot of people with m.e. have thyroid problems as well also orthostatic intolerance where there's an inability to stand for any length plus nausea dizziness weakened limbs brain fog. A neurologist will know the difference and as I said check out the local m.s. Centre for advice also. Far better than waiting for your doctor to act. If you have some idea yourself then you can point them where to look. If you want to get a full thyroid test Medichecks do them privately and the people here can help you with them. All the best
Good Lord! That doctor has left you hanging? Seizures are serious business. This article talks about electrolyte imbalances. ncbi.nlm.nih.gov/pmc/articl...
Regarding your concerns about possibly having MS... I have MS along with thyroid issues caused by a pituritory problem. My MS was diagnosed in 2004 after some pretty horrific symptoms. If you have been told that the Drs suspect that you may have this, then it’s really important to get a definite diagnosis so that you are able to begin disease modifying drugs as soon as possible, in order to try and delay the progress of the disease as soon as possible. I can’t believe that a Dr has left you with the question of ‘possibly MS’ hanging over you., that’s awful. You need some proper testing to see if MS is present and the sooner the better. One thing I have learned is that the sooner MS is confirmed, the better, so that you can at least have the opportunity for a more favourable outcome long term.
Sorry you are going through the mill. I totally get the change in circumstances. I too no longer do the school run .
I agree with the others about getting your test results.
Apart from that, what made them suspect MS ? Have you had a brain and spine scan which shows evidence of specific MS type lesions ? Have they offered you the MS lumbar puncture Test? If not, ask why . Good luck.
I'm not going to add anything to the thyroid information on here because you'll have all the expert patient advice you need from others. but there are two things I would strongly advise you to try.
The first is Low Dose Naltrexone, or LDN. This is what is called an opiate antagonist. Very briefly, because you won't have much by way of concentration or retention, this drug is taken in very low doses (4.5mg a day), built-up from 1.5mg. In that dose it has no known contraindications - it does not react or interfere with other drugs, whatever they are. It stabilises the immune system. My opinion (and I do have a medical background) from your description of your symptoms, and the potential diagnoses from your current doctors, at the very least you are likely to have an autoimmunological problem. In other words, your immune system is attacking certain tissues of your body. Graves Disease, Hashimotos (hyperthyroidism), ME/CFS and MS are all autoimmunological disorders. If you need help locating prescribers - and most GPs have no clue as to this drug's use, then please pm me and I will happily give you the name of the pharmacy and doctor (all qualified and registered here in the UK) who will be able to decide if it would be appropriate for you, and prescribe it and manage your taking it. I take it and it has made a significant change in my ME/CFS symptoms and my thyroxine supplementation. And it is having exciting results with MS sufferers (and cancer sufferers at that). Obviously in America, but now through Europe. Have a swatch at this: ldnresearchtrust.org
Secondly, look at injecting vitamin B12. Another very safe vitamin to take, its lack is chronically underdiagnosed and again some of your symptoms look suspiciously like B12 deficiency. Look at this site: b12d.org
The site looks insecure but I've used it as well as hundreds of others and I've never heard any reports of malware. The specialist doctor on that site (again, in the UK, qualified and registered) will answer questions from those in dire physical straights and will help you take B12 appropriately. You cannot overdose on B12, it is water soluble and excreted from the body.
I cannot and would not attempt to diagnose what your actual condition/s might be and am not qualified to do so. What I am qualified to say is the above, and to direct you to specialists in those fields who are accessible to the public without necessarily having to go through their GPs for referrals. Each of them will prescribe if, in their opinion, it is appropriate and will help you.
The thyroid stuff will take time to sort out. Meanwhile, these two approaches may well stabilise some of your symptoms a little more quickly. Speak to the doctors and see what you think.
Hi thank you. Yes please. Could you dm me that info. About 3 years ago I was told I had a vit d and b12 but then told I'm fine I don't need medication. And here we are today 🙈
Do get your B12 and folate retested before supplementing in anyway. You need a base-line. And, it could be that you have Pernicious Anemia, but if you start supplementing before testing, it won't show up.
This sounds very much like my mother first she had a problem with her achillies heal her foot drooped she could hardly put any weight on it her knees were the same she went from able bodied to unable to move she ad bloods done...bearing in mind my mother had been hypo for several years with 125 of levothroxine she seemed to be ok on it and I was sure this ad nothing to do with hypothiyoid..I like you at one point thort it was MS..she also got bad cramping in her toes and fingers...after nearly 12 months of this myself and my brother decided things ad gone far enough we took her to see a new gp at her surgery..to cut it short she was in Newcastle 2 days later they did a test which included placing needles in to the muscles to see how they were performing upshot I'm afraid for us was not good...she was diagnosed with motor neuron....please don't let them fob you off my mother's bloods were perfectly normal and I'm sure we got where we did solely due to a new doctor joining the practice...only you know your body you quality of life has changed and their must be a reason for this push all you can arm yourself wish info keep a diary on your pain and inability to to normal things
To be honest I didn't see seizures as such but she did have what docs call bad panic attacks also her speech was affected she could no longer hold her knife and folk or swallow this was towards the end she was in and out of hospital a lot we never got a straight answer from my mother's surgery as to how they missed it for over 12 months...if your having seizures your Gp or consultant should be looking in to that and fast...you really have to push these days with gps/ consultants ect...I've just rang my surgery to speak to my Gp when he can I have just had a total thiyroid removal and my nose is so sore and dry I rang yesterday with no reply and rang today to be told the surgery was on half day yesterday and we're closing half day today.....no wonder the A and E is so busy and choc to when gps close twice for half days....also my mother only got 2 years before she died...as I said push them for answers push for bloods it's your health good luck...x
I'm trying to take charge of my health because as it stands doctors don't even know how to manage the hypocalcemia. Some say, take more meds and others say no. I'm very frustrated because I feel confused and lost. I've decided to try CBD OIL. I'm gonna give it a go or if this is not helpful then Carnivora, but I'm claiming my health back. Some way, some how. I'm claiming it. This is the website carnivora.com/.
Wow...it's as if you and I are in simular boat heath wise. I have been unable to walk properly for over 2 yrs now (Achilles tendonitis) that goes from one leg to the other 2 yrs ago I had tendon from top of big toe to ankle swell so bad I couldn't wear shoes (Extensor Tendonitis) calf pains so bad feels like I'm being cut with a knife when I move too much or stand. To top all the tendonitis pains my knee is a monster can't straighten it or put pressure on heel because of it so I walk a little on toes and my feet drag a bit when I walk. I also randomly lose my hearing and have awful neck spasms.
All the above started except hearing loss AFTER I lost my thyroid, prior to thyroidectomy I was fit, happy and healthy 47yrs old now Im 49yrs old over weight riddled with pain and no closer to a fix "sigh" and told by healthcare I'm fine it's me unable to except my condition....sure it is.
What a list....I was diagnoised over a year ago with Psoriatic Arthritis (I had psoriasis) my entire life and Autoimmune inner ear disease. In my opinion I think losing my thyroid has sent my health spiraling after being improperly medicated for 1st year and half after thyroidectomy . I did the vitamin route faithfully inspite of blood test saying I was good and still never felt any better. I did a ton of physical therapy at the beginning made me worse for some reason.
I was given carbimazole but I had an overactive thyroid. Are you being treated for your seizures as I am not sure if that is linked to thyroid problems. Hope you are able to get it sorted soon.
You mention light sensetivity? Do you get any rash on your skin? Is the rash a certain shape? Have you tested Anti-dsDNA (antibodies to DNA). Antinuclear antibody (ANA )?
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I'm new here and diagnosed for the 2nd time with Graves.
Thank you for your help! I have Hashimotos and have been having a Hyperthyoid flare up for the past 3 months..heart racing, diarrhea, 
Could you help me understand and interpret these results please.
Viral inflammation of thyroid vs Graves - anyone got experience of becoming extremely hypo shortly after carbimazole?
