I just wanted to ask the question to people who suffer with Graves Disease and Hypothyroidism how they deal with their work life and what kind of jobs they find they are able to do.
I take 75mg Levothyroxine daily and 10mg Liothyronine 4 times daily. This has helped my energy levels to an extent but I still deal with a lot of symptoms that make daily life and particularly working difficult.
I have low energy levels which like I said have improved since going on Liothyronine, on just Levothyroxine I had no energy even on doses upto 250mg. I cant speak to my GP as they just want to take the Liothyronin off me.
I always feel like I'm burning up/sweating which if I'm right is supposed to be a Hyperthyroid symptom? When I speak to my GP they just seem to ignore this and don't offer any help.
I go dizzy when standing, this happens several times a day and I often have loud ringing in my ears , again lost days and it comes with the dizziness a lot if the time.
I feel like I barely eat, I've become allergic to most foods, so I am now vegan which helped with sickness to an extent but I still seem to feel sick more days than I feel well. They only time I don't feel constant sick is if I go on a liquid diet and blend my fruits/veg.
I also have two discs missing from my lower back, bad arthritis in joints and arthritic psoriasis which causes my nails to fall out. And limits my movement.
I feel like i really struggle with work, I'm currently a teacher and during term time fell like I'm working 24/7 and just praying for the holidays as I don't even get a break on weekends.
I try to keep moving and do yoga and light walking on my treadmill, this improves my mobility to the point I can get around but I'm still in pain. But again during term time I have very little energy or time to get any exercise and get in more and more pain.
What jobs do other sufferers manage to do?
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I have Graves Disease and following RAI treatment in 2005 at age 58 and now manage lingering Graves, thyroid eye disease ( caused by the RAI ) and hypothyroidism.
I was fine on Levothyroxine for about 8 years which is when I believe my thyroid gave up completely and I became very unwell with the consequences of drinking this toxic substance and basically became housebound.
I was refused a trial of T3 on the NHS in early 2018 because of my suppressed TSH and then I jumped ship and am self medicating.
Initially I tried a T3/T4 mix but also gave myself a trial of NDT which I prefer as it feels softer on my body.
I am now off the sofa and back to being ' me ' again as best as I can. The setback in 2013/17 has left it's mark, but at 73 I do have some fatigue which maybe is or isn't related solely to Graves and tend to run myself slightly hypo, rather than hyper but am much improved and my brain is now back in the room, along with my body, and most days they work in unison.
You might like to look at Elaine Moore's Graves Disease Foundation website as it is as all encompassing a website I have found and Elaine herself went through the same procedure and finding no help with her continued symptoms started researching this poorly understood and badly treated autoimmune disease.
Details on my profile page should you wish further information :
Pennnyannie, thank you for the reply. I will certainly take a look at Elaine's website, although I do struggle with concentration and taking in lots of information.
The T3 certainly improved my energy levels and I can't imagine going back to just T4. I have spoke to lots of people who have thyroid problems and say very small amounts of T3 was all they needed. This wasn't the case with me and I struggled through for six year, just working and sleeping and completely neglecting any social life. Once getting on T4 it gave me a little more energy allowing me to do light exercise which helped with my arthritis and lower back problems, but still, all I do is work and exercise, or just work during term time, then spend all my holidays just sleeping and recovering.
Maybe your thyroid hormone replacement needs adjusting ?
Do you have any current blood tests to share with the forum members ?
Ferritin, folate, B12 and vitamin D need to be maintained at optimal levels as no thyroid hormone replacement works well if your core strength isn't strong and solid.
Primary hypothyroidism caused by RAI is said to be harder to treat and RAI is known to trash vitamins and minerals. so although RAI is a quick fix, it is a toxic substance and a slow burn and taken up by other glands and organs within the body so possible a slower repair and recovery for some people.
I think you'll find Elaine's website invaluable, there is an open forum much like this amazing platform where you can ask questions and Elaine herself is open to private questions.
Graves is an AI disease - your thyroid was the victim not the cause -the cause is your immune system attacking your body, and more especially when the Graves attacks the thyroid gland, because it's the body's engine, the symptoms expressed can be extreme with some said to be life threatening.
You will read around AI disease and what you can do to try and reduce this component of the disease, as currently the medical fraternity have no answers, though a vaccine is being developed but it's too late for you and me, as we have been " nuked " .
A fully functioning working thyroid would be supporting you on a daily basis with approximately 100 T4 + 10 T3 : the body runs on the active hormone T3 which is said to be about 4 x more powerful than T4 and the average person uses about 50T3 daily just to function. You body needs to be able to convert the Levothyroxine into T3 and if your vitamins and minerals are not optimal you may not be able to do this.
Some people can get by on T4 alone, some people at some point in time simply stop converting T4 into T3 and some people need both these vital hormones dosed and monitored independently to bring them both into balance and to a level of wellbeing acceptable to the patient.
It can be a fine balance and would suggest a new blood test covering everything discussed so we can see where your T3 and T4 sit in relation to each other and how optimal your vitamins and minerals are, and how they play just as important a part in your overall health and wellbeing.
The thyroid is a major gland responsible for full body synchronisation including your physical, mental, emotional psychological and spiritual demise, your inner central heating system and your metabolism and living without a thyroid and not optimally medicated, not much fun at all.
Unfortunately I have been really struggling with blood tests and hospitals and my GP arguing over where the responsibility lies in taking them. I have been in full quarantine since March 13th due to Covid and my health.
I had to really fight and put in complaints to even get blood tests done, even after being left 5 weeks without my arthritis/psoriasis medication. Everybody just argued who should be doing the blood tests.
When I have finally managed to get tests done the GP has only tested Serum TSH level and not Serum Free T4 or Serum Free T3. The last time these were checked was back in March. The GP is insistent that only TSH needs checking and my specialist will not write to the GP asking for all three to be tested unless I pay £200 to see him or have a telephone consultation. Then of course he wants to me to pay for another £200 appointment to go over the results and make any changes to my medication.
Well, you can arrange private blood tests though companies as listed on the Thyroid uk website and it shouldn't cost you 200 pounds and it costs nothing to let the specialists within this forum comment and help you before seeing any specialist.
The main companies suggested here are either Medichecks or Blue Horizon and see you have already been given some details.
I use Medichecks as Blue Horizon doesn't operate in my area and now just order a yearly full thyroid blood panel to include TSH, T3, T4, antibodies, ferritin, folate, B12 and vitamin D : usually there are discounts on a Thursday with one or the other :
I will have a look at that one. It was the Thyroid Check UltraVit with Folate Blood Test that I posted the link for at £120. As it mentioned the folate.
Is it every thursday there are discounts or is it random?
I can't seem to get into my medichecks account to confirm what I order but it's with ferritin, folate, B12, Vitamin D, TSH.T3.T4 and antibodies. These are the main ones we generally ask for as the vitamins and minerals are needed as well as the basic TSH, T3 and T4.
Great I will have a look into getting that one done, hopefully I can get a discount.
I have just had another look and it says it requires a blood test, not just a finger prick, which was the last test I had done on medichecks. This means it puts the price upto £150 with visiting one of their clinics, I presume this is unavoidable?
Once I get the results am I best starting a new post or just posting it on here?
Start a new post with results and ranges with a brief detail of your thyroid journey eg: Graves/RAI / medication/ symptoms/ - I need to close down now otherwise I'll not sleep well tonight - just need to find some rubbish on the TV and that shouldn't be too hard :
Thriva do a Thyroid test; Active B12, Ferritin, Folate, Vitamin D, TSH, T3, T4, and antibodies for £79 (10% off if it's your first test). I get all mine done through Thriva and they're great.
I have looked back for the past year over my blood results, it looks like the last time anyone checked Vitamin D was November 2019 and it was 68.9.
I very much believe I could be gluten intolerant, but my GP repeatedly tells me there is no way of testing this, both dermatology and Rheumatology have repeatedly told me this is a lie but say they can not test me and it needs to go through my GP who refuse.
Vitamins I am taking at the moment are:
Vitamin D3 - 4000 i.u
Vitamin C - 1000mg
Vitamin E - 268mg
Multivitamin (which contains Zinc and Magnesium)
Zinc - 15mg ( twice daily this is on top of the multivitamin)
Seems to be (hopefully temporary) glitch opening links
Multivitamins not recommended on here...probably contains iodine?
If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 7 days before any blood tests, as biotin can falsely affect test results
Yes it contains Iodine, my specialist told me that it was important for me to have an iodine supplement due to me being under active.
Unfortunately the district nurse who is sent out just turns up, they do not let me know when they will arrive so it is difficult to stop medication prior to them coming.
As I was also told that I shouldn't take my T3, T4 for 24hrs before blood tests. Is this correct? It will be easier once my quarantine is over as I will have booked blood tests to go to.
I have just looked through all my vitamins and none of them appear to contain Biotin.
Poor gut function can lead leaky gut (literally holes in gut wall) this can cause food intolerances. Most common by far is gluten. Dairy is second most common.
According to Izabella Wentz the Thyroid Pharmacist approx 5% with Hashimoto's or Graves are coeliac, but over 80% find gluten free diet helps, sometimes significantly. Either due to direct gluten intolerance (no test available) or due to leaky gut and gluten causing molecular mimicry (see Amy Myers link)
Changing to a strictly gluten free diet may help reduce symptoms, help gut heal and slowly lower TPO antibodies
While still eating high gluten diet ask GP for coeliac blood test first or buy test online for under £20, just to rule it out first
Assuming test is negative you can immediately go on strictly gluten free diet
(If test is positive you will need to remain on high gluten diet until endoscopy, maximum 6 weeks wait officially)
Trying gluten free diet for 3-6 months. If no noticeable improvement then reintroduce gluten and see if symptoms get worse
I have looked back a year and other than thyroid and full blood count being done, it seems the only vitamin test was Vit D test back on 25-11-2019 - which was 68.9.
I really do not each much gluten anyway, I am mainly on fruit and vegetables. All meals prepared myself not store bought. To get the coeliac test does that mean I would need to start eating lots of gluten prior to it?
To be honest it is all a little fuzzy, when I was hospitalised because I couldn't move my legs about 12 lots of blood were taken and various blood tests done. This is back in 2013 and trying to get information from the hospital and GP is proving extremely difficult. Even just getting the date I was diagnosed and the date I received Radioiodine treatment doesn't seem to be something anyone can tell me so I am always working with rough dates.
I stopped work 10 years ago because I worked in a busy solicitors office and I felt too ill to carry on. Also I was typing a lot of legal documents and you cannot afford to make mistakes with those. I work for myself now so I can decide how much work I do each day or not do lol
I wish working for myself was an option, it sounds great.
I know I push myself too hard, I see other people taking time off for colds, while I'm dragging my feet around because I can barely lift them. I run on about 3-4 hours sleep on a good night.
I had to leave a career in the Police because patrol was too much for my body and they really didn't help with the way I was treated once diagnosed with Graves/Hyper.
It would just be good to be able to find a job where I can afford to live but actually come home from at the end of the day.
Hi, I also teach and really struggled until my Levo was increased and vitamins more optimal. I also tend to ‘dip’ before each school holiday. I find Pilates & mindfulness help me unwind.
A good B Complex is essential- I use Thorne Basic B- & can really feel lethargic if I forget to take it. It’s important to stop taking it however for a week prior to blood tests as the Biotin can affect results.
Remember to keep posting if you require further help or support in any way!
My Endo has told me that I am at the optimal levels as a "normal person", he repeatedly tells me he is not willing to up my T3 or T4 due to me not being a footballer or athlete, he has told me on numerous occasions that if I was a footballer he would be willing to up my levels but us normal people do not need it.
I do yoga daily (when my body allows it), unfortunately I have two discs missing from my back and bad joint pain from my arthritis which stops me being able to do it. Since I've been quarantined from 13th March up until now and working from home I have managed it every day and my health has got much better. But while in work I was lucky if I was managing it twice a week.
I would pretend to have taken up running or netball if I was you. Sometimes I cannot believe the rubbish that some doctors talk! My ex Endocrinologist offered me counseling when my levels were too low and I couldn't see how counseling would stop my hair and nails from dropping off! So I walked out of his clinic never to return. I have just found out where is he now working and it is in a large city hospital and I pity his poor patients.
It really isn't good the treatment we get. I find it hard engaging on sites like this too, finding the energy to actually speak to people and try get anywhere. But I feel like this is the only way I'm going to get anywhere as doctors don't seem to want to help. So I must push myself this time to try get advice on here, get tests done that I need etc.
Me too! And I find it quite overwhelming when I get lots of information thrown at me. I've managed to convince my GP to so the correct Thyroid tests. Just not the vitamin ones that have been recommended. It's a start.
It's not normal to have Graves Disease and it's definitely not normal to ingest Radioactive Iodine to poison and burn out parts of your body :
If we are all " normal " the endo wouldn't have a job - absolutely unbelievable comment :
We need what we need - these are hormones - not drugs - his job is to restore your health irrespective of your life style - how ridiculous a person is this ?
That is exactly what I have tried telling him and I am looking to get away from him and certainly away from paying the private fees. Unfortunately he was the only person willing to offer me a mix of T3 and T4 as my GP would only jump my Levothyroxine up and down by 50mg to try and solve the issue and would not refer me back to an Endo. This left me with no choice but to go private.
I used to be an A level teacher in a college and later a full time University Lecturer. Both very full on but loved it despite worsening hypothyroid symptoms as years went on. Eventually, it got to the point where after a whole year of complete exhaustion and feeling ghastly, I decided to stop teaching altogether. It took several years after that to convince GP that I was hypothyroid. He would go for any diagnosis rather than the correct one!
I am currently secondary school and also doing visiting lecturer work at a University where there may be an opportunity coming up to do that full time. I would much prefer the University work and feel like it would be easier on my body/health due to the people I would be working on and working with students who actually want to be there, instead of the high school where a very small percentage want to be in lesson or even school.
The University is a much better environment but would mean moving house and everything that comes with it, and I worry that full time will still be too much for me in such a role while I have so many health problems.
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Graves' Disease and facing Disciplinary Action at Work
Hypothyroidism
NICE Guidance on Thyroid Disease - Final Guidance
T3 not available anymore from my gp or endo
