I’m seeking the community’s advice, as I’m becoming so disheartened by the numb response I’m getting my GP.
I’m at my wits end now, as my fatigue is so chronic and debilitating, that I just can’t do my job – I work in the emergency services.
I have no idea what’s causing my symptoms, and my GP appears to have given up now.
I wanted to gauge from the community on here, if people with similar symptoms as mine have successfully been medically pensioned, and if so, if you can give me any guidance or pointers to help me!
HISTORY:
I was diagnosed with Hashimoto’s in 2008, & have been on Levothyroxine ever since, with various stages of having it increased.
In 2012, I had severe symptoms, one of the main ones being the most savage, and acute fatigue – to the point I was collapsing in the shower, & falling asleep! Pain so bad in my limbs – arms especially – that I struggled to open the kitchen cupboards to make a cup of tea.
My symptoms at this point was extreme fatigue, painful muscle spasm and stiffness in my arms, back, and legs, bladder and bowel problems, mildly slurred speech, cognitive problems such as slow word recall, substituting the wrong word, forgetfulness, etc….
After various tests, and 10mths later, Dr diagnosed me with M.E. (or CFS) but I’ve never really been 100% about this diagnosed, as I felt it was too ‘wishy washy’, especially as I was already diagnosed with Hashi.
I went part-time at work, had to literally re-design my life in every aspect, and it was an incredibly difficult 2yrs, but some mild progress was made.
However, around the spring of 2015, my symptoms came back with real vengeance, and since Sept’2016 I have been off work.
Eventually, after months of blood tests, & asking for a letter of referral from my GP to see an Endocrinologist privately, which was met with great resistance – my GP all of a sudden said that TSH levels were high – and from October 2016 onwards my meds have been increased from 150mg/day to 225mg/day – and my symptoms have actually got worse! Not better.
I kept going back to my GP detailing that my symptoms were worsening, not improving, & I was now developing new symptoms as well, being a weird type of numbness and tingling sensation in my right arm and leg – which now randomly has spread to my hands and feet – and it’s like the limb or area affected at that specific time has gone all weak - & at its worst I thought I was having a stroke! Had an emergency appt’ at the GP surgery, and fortunately I wasn’t.
I do get it on my left hand-side occasionally, but it’s more dominant on my right hand-side. (I am right handed in case that makes a difference).
My coordination is impaired, and certain tasks like driving, especially at night is like a sensory over-load, and I struggle to process everything correctly, and drive at the same time, so I now I don’t drive at night, unless I can absolutely help it.
I have bladder and bower problems too! Which is embarrassing!
I had an MRI scan recently, as GP suspected it could be MS, but the scan came back clear.
I did recently see an Endocrinologist privately, after I insisted my GP wrote a letter of referral.
He has changed my medication to 200mg of Levothyroxine/day – but also prescribed me 10mg of T3/day – which was met with friction by my GP surgery due to the cost of the medicine.
I’ve only been taking it for 3-4 weeks, so can’t fully say if it’s helping yet.
My TSH levels have since come back down near to 'normal range'
Written by
Starskyboots
To view profiles and participate in discussions please or .
I know how you feel as used to be unable to get out of bed myself so am sorry you are feeling this bad now.
You will need to get print outs of all your latest blood tests and post them on here so that people on here can suggest how to improve things or see if anything obvious.
I can suggest some things that are often overlooked though. You should make sure you have had your T3 tested to check you can convert T4 properly. I cannot convert so have always been on T3 only although I've added a little T4 recently. If you are like me, you may need to be on more.
Considering some of your symptoms, you need to rule out B12 deficiency. You should get B12, ferritin, Folate and Vit D tested if you haven't already and post the results on here. Basically any of your blood test results might be useful. Do you have a good diet or are you likely to be deficient in most things? Do you drink enough water? What are your blood glucose levels like? Have you ruled out diabeties. You can try an elimination diet to check for any food intolerances or an anti-inflammatory diet to see if helps.
I would recommend that you fully rule out coeliacs disease as this can cause most of what you have mentioned above and is massively under diagnosed. If you have had blood tests for this already and were negative, bear in mind that they have a high rate of false negative and can only be truly ruled out by an endoscopy which is why it is often missed. If you do get an endoscopy and it also comes back negative or if they won't give you one, it is still worth trying a gluten free diet for three months to see if anything improves. I was diagnosed with non-coeliac gluten sensitivity as I test negative for coeliacs but it was proven in my case to cause autoimmunity and systemic inflammation. I had many things they said wrong with me - idiopathic hypersomnia (sleep disorder), IBS, pompholyx, thyroid, Fibro, deficiencies, etc etc and my pancreas and adrenals were starting to pack in but everything used to hurt and I also used to fall asleep while talking to people or on my desk and my brain would shut down all the time etc. It has mostly gone away since GF. I'm not suggesting this must be your problem too but it's definitely one worth ruling out especially as you mention bowel issues, pain and the sleep attacks like I had. Failing this, have you been referred to a gastro to check what's going on there.
Start looking at everything one by one even the tiny things and ruling things out properly and hopefully slowly but surely, you'll be able to get to the bottom of your issues and possibly get rid of a few symptoms in the process to see what you're left with. It can take a while but don't give up
Reading your post had me feeling very sad. LOW B12 was screaming at me so do look and read the list of symptoms in the link below. Scroll down to read the neurological ones - when B12 is below 500 then neurological symptoms can appear if under or untreated. ( I have personal experience of this )
So these are the tests you need - TSH - FT4 - FT3 - also B12 - Ferritin - Folate - VitD. Tests can be done in the home with several companies - see link below ...
Check out Medichecks on the same link too - they have special offers on Thursdays
Do hope the T3 works - but remember thyroid hormones only work well when all the above are firmly in place with optimal results. B12 needs to be near the TOP of the range - as does VitD. Ferritin and Folate are good when halfway in the range.
I am not a Medic - just a Hashi's girl with a B12 issue and have weekly injections. Click onto my name and have a read of my edited journey to wellness on my Profile - it will only take a couple of minutes.
Hi, sorry your not feeling well, reading your post, sounds very much how I was, it's taken me the last 3 years of the puzzle to work it out, but going by your symptoms which are like mine, I would say have you B12 folate & ferritin tested, my B12 was low end of range but still symptomatic, but with injections they helped hugely, I'm feeling more human as the weeks go now, I do have hashimotos, and I'm gluten free, I eat clean, I can stay awake all day in stead of sleeping 18 hrs a day. It's take time to heal. My thyroid functions much better with the b12 too, I'm now on less medication, did not need the T3, that the endocrinologist suggested, my Gp was not happy for me to have anyway. I'm not a medical person, it's been a learning curve for me, try and get those tests and post them in the B12 group too. Not sure about pensioned don't give up yet.
I completely agree with other replies, B12 deficiency is screaming out also if you are hashimotos you need to be gluten free, your body is inflamed. You need recent blood results
A lot of these symptoms yes are Hashimotos but you also sound like you might have severe B12 deficiency. Have you ever had tested?
Can you post your blood results on here so we can have a look. We need the ranges too so best to take a photo and add.
I would guess that you are not converting T4(Levo) to T3 adequately and this is what we need as it is the active hormone, five times more active than T4.
You can buy T3 privately and add yourself to the T3 or you could switch to NDT (natural Dessicated Thyroid) I couldn't function either and felt like I could hardly go on with symptoms but I now self medicate with Thyroid S and I feel relitively normal now. Still have the odd blip but that I can cope with.
TSH needs to be under 2 but ideally under 1 for us to feel well, don't go by Drs ranges. They know diddly squat as only study for two weeks at med school...
Are you gluten, casein (cows milk) and soy free? A must with Hashimotos and a good place to start on your road to recovery. We can definitely help to make you feel much better.
You need to get your Folate,Ferritin, b12 and Vit D tested and optimum.
Folate & Ferritin mid range.
Vitamin D around 60
B12 600 or more. Under 500 can start to cause neurological damage.
I too suffered from bladder problems and bowel differences and I'm sure this was to do with my very low b12 amongst other things. Dr said was ok and it was in the 100's so do not listen to them or you will never get well!!
In my past posts I have listed things that have helped me, have a look.
Thyroid uk, great info
Dr Datis Khazzarian has brilliant books on Hashimotos and a website.
TSH isn't helpful in telling how the person is feeling as it is from the Pituitary Gland. Never mind your doctor re T3 - if there is a difficulty you can source your own. As Endo has prescribed I don't think the doctor can refuse.
They have no incling whatsoever of how unwell people can be on levothyroxine. Research and new Research has shown that many have an improvement with a T4/T3 combination. One shows that a 3:1 has been found to be best.
You've been unwell for ten years now with no improvements, in fact you are worse and it has affected your whole way of life, particularly employment.
I was more unwell on levo - improved a bit with the addition of T3 but am well now on T3 only. That's not to say everyone is the same. Also NDT used to be the only replacement hormone prescribed but Big Pharma did good promotions in order to flood the place with levothyroxine and blood tests. So their books look good I should imagine but it leaves those who cannot or do not get well on levothyroxine in limbo.
It is not our fault that the pharma companies can raise the only licenced T3 to whatever they wish. The result of that is that many have had T3 withdrawn which has left them devasted at present. Some have sourced their own.
Forget TSH levels - it doesn't inform how the patient is feeling. There's no danger of heart/osteo either. I think doctors are the most poorly trained in hypothyroidism. When most of their patients are fine on levothyroxine they assume all of the patients will do so. Not the case. Some bodies do not like synthetic T4 - GPs rarely take a FT4 or FT3 to see how the patient converts. It is T3 which runs our body not T4. If T4 converts that's fine but we need optimum T3 to enable our whole body to function.
As stated by the other members, all minerals/vitamins have to be optimum.
Ask GP to test B12, Vit d, iron, ferritin and folate. Ask if he will test Free T4 and Free T3. I doubt he will do the latter two but you are very unwell. I bet both are very low when they should be towards the upper part of the range.
I agree with all the advice above, and that you should hang in there... we know it's a minefield and that you have to be your own PI, but there is going to be a solution for you. I used to feel like I was wading through treacle and had terrible bloating and reflux, constant lower back pain, feeling kind of 'detached' from everything - even my own body, carrying a fair bit of mid section weight (considering the amount of walking I forced myself to do), I kept losing stuff - even my car a few times....
It was only when my thyroid was investigated that I discovered how low my b12 was and also iron (for decades) - the GPs hadn't warned me that I had been treading water for ages with both. I still get some occasional low b12 symptoms, usually brought on by stress which makes absorption more difficult (mild neuropathy) but the worst symptoms - brain fog; exhaustion and bowel /bladder issues are no worse than most girls my age! Going gluten free and supplementation: good B's (I've become a vitamin B nerd), Magnesium, Zinc - made such a difference, also digestive enzymes were really helpful in the early stages of recovery and I still take them with big meals. I was finally converting and lost weight as well. Everyone keeps on commenting on it - thinking I've joined a gym!
Managing on my own rather than expecting some miraculous gear shift in the establishment. For example, my surgery don't routinely check vit d levels if you were 'ok' a couple of years ago; so I'm now checking them privately (it's pretty cheap compared to other tests). A healthy gut was vital, so was a nice calming evening routine. Sleep issues come and go a bit (probably more to do with other hormones), but I seem to make it through the day without needing to crash.
N.B. If you get terrible fatigue symptoms and crash, then D-Ribose in a cup of coffee is a good pick-me-up.
The only way I know to rule out the hibernation state of CFS/ME is to do a mitochondrial test. I had mine done with Dr Myhill and it showed that my severe symptoms where a match for my mitochondrial state (See Dr Myhill website and books if you haven't already found her). This may not be helpful yet whilst you alter your new dose of thyroid hormones and possibly self medicate, but it is something to consider if you need to get into benefits and medical retirement battles.
As you have already found out being your own health advocate whilst foggy headed and this ill is not for the faint hearted. But you will get lots of advice here to alter your diet, supplements and thyroid medication that should at least get you to a more consistent base line of symptoms. It has got me my head back and I am in the process of getting my life back, altered but at least a life. Stick with it.
WOW! Thank you soo much everyone! Hugely helpful, and i'm so grateful if you've all spared the time to help me with your advice.
I had my bloods taken on Thursday just gone - which included B12, ferritin, Folate and Vit D - along with testing for FT4 and FT3 etc... so when I get these back, I'll post a copy up on here.
Selenium and zinc will help you with T4 conversion . A maximum dose is 200 mg of selenium and 50 mg of zinc. Agree with all the advisement on B 12 or you can also get a B complex - that has all the B vitamins . If you can find a liquid one that's even better and you can hold it under your tongue and let it absorb there - you might even begin to feel relief immediately with the B complex liquid . But go slow don't overdo it it's very important to go slow . You should know within 3 to 10 days if the selenium and zinc is going to help you . You might also try digestive enzymes - they too can help with conversion . And as the others mentioned you must absolutely remove gluten and dairy and soy it's worth an experiment of 90 days . I fought removing gluten and dairy and soy and I've had Hashimoto's for over 20 years I finally decided to do the experiment and you will not believe how the brain fog lifts - how the energy returns. One expert on Hashimoto's says that over 85% of the people in one trial felt better after removing gluten . 85% that's -phenomenal and it's true . Gluten just in case you don't know is wheat barley oats and rye in the very least . There are some that say rice and corn must also be included in that . I just removed it all and then I will later try an experiment of adding them back one at a time because of some research says that some people can tolerate this one and not that one. Vitamin D3 is very important the maintenance dose is 2000 mg a day I was tested as low and my doctor said start to take 5000 mg a day . But again I hear people taking 10,000 and 50,000 that's a little scary to me . My recommendation again is to go slow start out with the 2000 to 5000 range and again in 3 to 10 days you should know if that's going to help you . If you drink alcohol it's probably best to remove that for a time as well another thing that I fought - it's just not fair right ? But you would not believe how much better you feel . I keep telling myself this is temporary I'm healing and I know the healing part is true . What I don't know is how temporary it is . This is a good starting place . Many more things you can do keep reading here please keep posting how you are there so many caring and knowledgeable people here . Know that you are heard and cared for. And when you find what works for you - and you will find it - you must pass along and share it with others because there's more and more joining us each day. You will go back to work most likely . One more thing: Remove fluoride from your water from your toothpaste wherever it might be. If your water is chlorinated and most all water is try to remove the chlorine from your water too. If you have or can find a source of clean drinking water not bottled water in plastic bottles - start drinking clean water immediately . It's amazing what clean water and clean food and low stress will do for healing Hashimoto's . ( clean food basically means no fast food no prepackaged foods ). I know this sounds like a lot and it can be overwhelming start with the vitamins first and you'll have the energy to do the rest of it . Get well my friend - I'm so sorry but we do have to heal ourselves when we have Hashimoto's .
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Advice please- GP wants me to stop levo
At a dead end with GP, where to go from here?
Addisons disease ?
Test results
