Hi everyone and thank you for reading. I’m sure this question has been asked many times before but your help would be appreciated.I have been diagnosed with Hashimoto’s for some years now and have always continued to work whilst raising my children and generally feeling pretty unwell. I have reached a point where my symptoms of fatigue, muscle and joint soreness, lack of concentration etc. Have become overwhelming and I am currently signed off sick by my GP.
Can anyone advise me whether a claim for DLA(not sure if that’s the correct name these days) is likely to be successful or if you can share your experiences with me. Many thanks.
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Mazzybee
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Are you being correctly treated for your Hashimotos ? If so you may not need to claim benefits I have Hashimotos and was diagnosed at 59 - after a lifetime of illnesses and a demanding full-time career. Are you able to share your latest results with ranges - maybe someone can spot something that is not quite right and can make a suggestion.
What dose are you currently taking ? Do you have results for B12 - Folate - Ferritin - VitD ? If they are low in range then you will not feel well. I am now 72 - teach yoga twice a week - swim loads in the summer and still running a business - so yes you can be well with Hashimotos ... we are all here to help you so do keep asking questions and seeking support
Thank you Marz. Most recent results from last week are TSH 8.41, B12 372, folate 3.1. I don’t have a recent vitamin d result but have been low in the past at various times. Also have high blood pressure and am awaiting a 24 hour BP check. the brain fog is debilitating. Am 55 years old.
I love to exercise but recently just am not up to it. Feel worse after exercising.
Your TSH should be around 1 - so you are under-medicated. What is your current dose ? Blood pressure issues are linked to the thyroid - and is not a condition in itself.
We need ranges and you also need to to check FT4 and FT3 - and I am suspecting they will be low in range. Your B12 needs to be over 500 and the Folate mid-range - even without the range it looks LOW.
So what are you taking - meds and supps ?
Exercising whilst Hypo is not a good idea - as you use up all your T3 - which is the ACTIVE thyroid hormone and needs testing. Yoga and swimming is good
Thank you Marz, your advice has been very helpful. I will work on boosting my levels and see my GP regularly and shall continue to research to get back to optimum health. I hope your wellness continues and I also hope to be exercising( probably gently) again very soon. 🏊♀️🏊♀️🏊♀️
Goodness me you are way under-treated with a TSH of 8.4! How long have you been on that dose? What did you doctor say to these results? You won't need PIP (which dying people are now unable to qualify for it's so hard to get) you need at least one dose increase and probably more. Your TSH should be 1 or below, not that most GP's seem to understand that.
Others more knowledgeable than me will be along soon. Don't give up hope. You are sick not disabled. Your sickness needs properly treating. You may need to find another doctor to help you. I'm in the early stages of treatment. My last blood test was 7.3 and I still feel dreadful most of the time. But my dose was increased after that test and I will retest in a couple of weeks to see where I am now.
To help you have hope, I saw a private GP recently. She lost her thyroid to cancer. I wasn't seeing her about hypothyroidism, but something else. However, she looked at my 7.3 test result and said she would not be able to function as a doctor with a TSH like mine. Hers is 0.01. That helped me to realise I'm not just a fat, lazy, miserable whale, but a sick patient in the process of getting well again.
Thank you so much FancyPants54. It would be so lovely to just be able to function normally and make some progress - everything has come to a standstill. My increase to 100mcg from 75mcg (which was also quite a recent increase from 50mcg) has only been since last Friday.
It sounds like you have been kept under treated for many years. At least now someone seems to have noticed and is increasing your medication in 25mcg steps. Retest and reevaluate after 6 weeks. Take the driving seat. Don't wait for them. Book your retest for 6 weeks after you started your increase now. Get it in the diary. Follow up appointment with GP a week later. I make my appointments immediately I finish the last one. They will fob you off and leave you if you let them.
Print this list off and tick all that apply before you go to your check up after your next blood test. Make sure the GP takes the list off you and looks at it.
Keep a copy for yourself so that you can compare each time you are going to another check-up. That way you will notice the symptoms reducing easier than trying to remember.
You are so kind. The list will be a great help. Frightening listed to see how many problems this disease causes and yes I can almost fill the page with ticks. My thinking process is so slow at the moment I could never have compiled such a comprehensive list. I really appreciate your help👍🏻
The dose should be increased in 25mcg steps, retested 6-8 weeks later. This slow increase in dose continues until TSH is around one and FT4 towards top of range and FT3 at least half way in range
You are currently extremely under medicated
Official NHS guidelines saying TSH should be between 0.2 and 2.0 when on Levothyroxine
(Many of us need TSH nearer 0.2 than 2.0 to feel well)
What is the range on folate result? Looks possibly low enough for GP to be prescribing Folic acid
You may also benefit from daily good quality vitamin B complex. One with folate in. This will also improve low B12
If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 3-5 days before any blood tests, as biotin can falsely affect test results
As you have Hashimoto's gut is often badly affected, hence low vitamin levels. Also request coeliac blood test
All thyroid tests should ideally be done as early as possible in morning and fasting. When on Levothyroxine, don't take in the 24 hours prior to test, delay and take straight after test. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, GP will be unaware)
Always take Levo on empty stomach and then nothing apart from water for at least an hour after. Many take early morning, on waking, but it may be more convenient and possibly more effective taken at bedtime
Many people find Levothyroxine brands are not interchangeable. Once you find a brand that suits you, best to make sure to only get that one at each prescription. Watch out for brand change when dose is increased or at repeat prescription. Many patients do not get on well with Teva brand of Levothyroxine. Though it is the only one for lactose intolerant patients
When correctly medicated you should be much improved
Thank you SlowDragon. I think another visit to my GP is in order. My folate results actually say - Collect Prescription but I was only informed to collect my increased Levo. Will make an appointment ASAP. Here’s hoping.
According to Izabella Wentz the Thyroid Pharmacist approx 5% with Hashimoto's are coeliac, but over 80% find gluten free diet helps 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
I understand that DLA is now PIP (Personal Independent Payment). Whether you are eligible for PIP depends on how your condition affects you - explained in this link under Eligibility
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