Not posted for a while but have been having a really tough time. I am a year on since diagnosis and still feeling the same, extreme tiredness, memory is really bad, brain fog the list goes on. My dr has recently upped my meds again to 75mcg daily as blood test result still reading quite raised levels for thyroid and also supplied antidepressants due to low mood and how I am struggling right now. Work isn’t really being supportive, I feel I am being talked about people moaning I am being forgetful and just feel like utter shit and I am not good enough anymore. I do not think people take this condition seriously at all.
My dr is writing a letter to my employer to confirm I am struggling, my condition is still not under control and could be months or longer until it is and the common symptoms are xyz. I put in a flexible working request to change my hours to have a Friday off for one month but they aren’t sure whether they can support this as it will affect the team... they do not really care how I am feeling or how it would help with my wellbeing.
Can someone help.. is hypothyroidism classed as a disability under employment law? If someone can let me know or send some guidance or where I could find out that what be really helpful.
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Bubble214
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A few things I am aware of below. Others can provide far more useful info.
You can get a medical exemption certificate from GP and get ALL prescription medicine free for life.
You can therefore also buy medical equipment free of VAT from some outlets. For example, I buy my shoes from Wider Fit Shoes. They are expensive even without VAT, but at least they are comfortable - Size 13 Width 6E.
I had a medical exemption for very many years until I was eligible for free scripts due to age. The list of conditions entitled to VAT relief never did cover hypothyroidism. As a diabetic with osteoarthritis I am entitled to VAT relief for products specifically for those conditions only. Due to fluid retention I needed wide shoes for over thirty years, never eligible for VAT relief on an exemption for hypothyroidism, as soon as that was changed to diabetic I found I was.
I have advised others that the hypothyroidism exemption does not give VAT relief. Please let me know where I can find this up to date info you have shared.
Unless extremely petite you are likely to need at least 100mcg dose levothyroxine per day
guidelines on dose levothyroxine by weight
Even if we don’t start on full replacement dose, most people need to increase levothyroxine dose slowly upwards in 25mcg steps (retesting 6-8 weeks after each increase) until on full replacement dose
Consider starting levothyroxine at a dosage of 1.6 micrograms per kilogram of body weight per day (rounded to the nearest 25 micrograms) for adults under 65 with primary hypothyroidism and no history of cardiovascular disease.
Traditionally we have tended to start patients on a low dose of levothyroxine and titrate it up over a period of months.
RCT evidence suggests that for the majority of patients this is not necessary and may waste resources.
For patients aged >60y or with ischaemic heart disease, start levothyroxine at 25–50μg daily and titrate up every 3 to 6 weeks as tolerated.
For ALL other patients start at full replacement dose. For most this will equate to 1.6 μg/kg/day (approximately 100μg for a 60kg woman and 125μg for a 75kg man).
If you are starting treatment for subclinical hypothyroidism, this article advises starting at a dose close to the full treatment dose on the basis that it is difficult to assess symptom response unless a therapeutic dose has been trialled.
A small Dutch double-blind cross-over study (ArchIntMed 2010;170:1996) demonstrated that night time rather than morning dosing improved TSH suppression and free T4 measurements, but made no difference to subjective wellbeing. It is reasonable to take levothyroxine at night rather than in the morning, especially for individuals who do not eat late at night.
Bloods should be retested 6-8 weeks after each dose change (or brand change)
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 you have autoimmune thyroid disease (Hashimoto's) diagnosed by raised Thyroid antibodies
Ask GP to test vitamin levels
Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .
Last dose of Levothyroxine 24 hours prior to blood test. (taking delayed dose immediately after blood draw).
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)
Is this how you do your tests?
Private tests are available as NHS currently rarely tests Ft3 or thyroid antibodies or all relevant vitamins
Thank you! So I am taking 75 a day now, that’s all they increased. I haven’t got my results will need to request them and I am quite small 5ft and weigh 8st? From my knowledge they haven’t tested my vitamins or anything else I have asked but did not give. I’ll have to get them done privately I think. Tbh i would struggle on a gluten free only diet I am quite fussy! The doctors won’t shift on getting blood test any sooner than every 3 months they said it would give false results and could put me on wrong medication
A year seems a long time to still not be on a full dose, i went from 50 mcg to 100 to 150 within 8 mths when i was diagnosed with autoimmune hypo.. OK, so i was only in my late 30's at the time, so there was no concern about strain on my heart. I never felt 100% again , but i could function at work within a few months of starting Levo...... why are they taking so long to increase your doses ?
Thanks for your message. They basically are saying that it has to be every 3 months my blood test as it could give false readings if sooner than that? I’ve tried to fight with them but they are sticking to every 3 months
I think thats not quite true, 3 months is the amount of time the NHS guidelines say to leave between doing repeat thyroid function tests when you suspect someone may have subclinical hypothyroidism or actual hypothyroidism . This is for diagnosis purposes ,not titration of dose once diagnosed. It is to make sure that it is not just a 'one off' out of range result that might resolve by itself.
However i think the usual guidelines, ( and instructions with the tablets) for titration of doses of Levothyroxine (once someone is diagnosed) say that after an adjustment in dose, a repeat test should be done after 6-8 weeks. This is usually long enough for the TSH to be representative of the new dose unless the TSH has been supressed for a long time. The usual dose increment for people 50yrs+ is 25mcg at a time unless the person has heart risks or has been hypothyroid for a long time. people under 50 could be given 50mcg increments according to the tablet instructions, (although 25mcg at a time might still be better to make sure you don't overshoot the correct dose)
Personally i'd say it may be best to wait 3 months to be sure how you 'feel' on a new dose of Levo, but that shouldn't be used as an excuse by GP's to take so long about it.
I'll find you a link to the NHS guidelines in a bit .
Edit . oh... i've just checked the guidelines and i was wrong, it does say 3 months , sorry;
However it does also say;
"1.3.6 Consider starting levothyroxine at a dosage of 1.6 micrograms per kilogram of
body weight per day (rounded to the nearest 25 micrograms) for adults under
65 with primary hypothyroidism and no history of cardiovascular disease.
1.3.7 Consider starting levothyroxine at a dosage of 25 to 50 micrograms per day with
titration for adults aged 65 and over and adults with a history of cardiovascular
disease".
(So even if you have to accept 3 month retests you don't have to accept a tiny dose. Work out what 1.6 mcg x your body weight in Kilogram's is and ask GP why you are not on that yet ?. It's only a rough guide for a final dose, but i bet you are on nowhere near that much yet unless you are very petite)
I think you probably need to get a full set of bloods done. You may need to get these done privately. You are on a tiny dose of levo, I was taking 550 mcg levo before self sourcing NDT. I have had sone very grim patches and was under medicated for most of my life so know what it’s like to need to put the additional effort into everyday. I am so glad I did as I now look back and feel happy with the life I have had and now ebjoy my retirement with no financial worries, Keep testing and posting for lots of help here.
I think I will have to, just feel no one really takes thyroid conditions seriously. I’m just anxious everyday to go into work especially when people are complaining about me tbh I feel I am doing my best as I can so. I am exhausted today, headache and sore throat but still going in. Oh really, well I’m glad there is a light at end of tunnel and you got yourself sorted. X
I do wonder if gluten free would help. It does 80-% of Hashi cases. On the plus side at 8st you are not having the weight issues so many have. Good luck going forward.
I was very ill for 5 years, I was mostly house bound, I got terrible anxiety, I was in pain, I cried and slept a lot.
I lost/dumped a few friends at that time who found the suddenly boring, depressed, over weight me inconvenient!! Jeeeez I had far more worrying stuff to think about than how it affected them! Like was I dying, paying the mortgage, bills, afraid to drive, panic attacks, constant pain and fatigue. It was miserable at that time but things got better.
I get your colleagues are pissed off, I was always pissed off at a few mums who always had time off usually Monday or Friday!! left early, got in late, missed deadlines, got first dibs on holiday dates because kids came first, we all had to finish their work for them, they worked on average 4-6 days less a month for the same salary. Also the smokers had 20 min fag break every hour! I negotiated to leave an hour earlier each day than the rest plus 3 extra days holiday a year.
Do you have a HR Dept ? There are laws protecting us during illness and phased return to work. Google acas and phone them, find out your rights. Can your doctor sign you off work for 3 months to give you a chance to recharge your battery, then you can focus on getting well, running on empty is not good for thyroid. I went self employed so I no longer had to explain myself to anyone.
It's difficult but try not to care what they think, I know mum's bunking off don't! It's difficult working in a team if someone not pulling their weight but they are not living with an illness that hits you like a hurricane, leaving your body and mind broken. The spoons theory is a good way to explain to people the lack of energy we have. They can't take hypothyroidism seriously as they don't have it, so have no idea, drs are also clueless. However part of our contract is to be fit to do our job, it is not unreasonable to ask for reduced hours supported by your doctor.
I would bet your work mates shirk in other ways they just don't think people notice, you are one person in a team, a team doesn't fail because of one person, it fails because of the team and the team leader. Less hours might make your remaining hours more productive if you are not so tired and unhappy. Xx
Sounds like you had an awful time, but glad to hear you’ve come out the other end.
Thank you for your support, the only thing that makes me laugh is yeah I forgot minor things but I work my ass off! I put on a smile everyday, well try my best too depends if I am having a bad day but always get my head down and do what I need to do. I end up staying later than I should, last Friday I worked until 9pm at night even though I felt like shit had a bad headache just to get notes typed up for them and they have the cheek to be funny about me changing my hours to work 3 hours less!! I just feel they are being difficult and I am trying not to be signed off but I will if I feel I need too and they continue to treat me how I am being treated.
I wish people could understand what it is like to have this condition😞.
What do you do as a job now? Wish I could go self employed but covid has just messed everything up .
I was in engineering publishing, editing gas engineer and management, industrial specialist publications, so daily, weekly and monthly deadlines, very stressful. I do wonder if the constant stress burnt my thyroid out along with too much sport.
I went back to uni to brush up my degree on the water side and went self employed, never looked back. I no longer do site work, I don't have the energy, I do testing, reports, oversee projects but then slipped into specialist area of fertility, compromised immune system, wilson's, dialysis and the incredibly wealthy. I found a good niche. Water virology is part of what I do so been swamped with covid. When I work my arse off now it's for me. I don't do 9-5 I work when it suits me and if I can't sleep I do my emails.
As you get older you care less about what others think or say but in an office environment it is uncomfortable. We all make mistakes 'even me' 😂 Covid has also made the employment situation uncertain but if you are struggling then consider time off, pettiness in offices is common but if you start to feel bullied get it on record at a meeting with your line manager, followed up by a letter confirming what was discussed, it's not allowed and would be classed as discriminatory when you have a chronic illness for life. People understand what they know, if you had cancer they would be sympathetic, I always thought nervous anxious people were weak, over weight people lazy 😂😂😂 wow did that bite me on the arse after thyroid removed! I gained 6 stone in 2 years, started getting anxiety and panic attacks!! Do what you need for you and your health, how it affects a few bitchy colleagues is their problem not yours xx
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