Thyroid Issues and Employers

[Kikki1971]

I have recently been diagnosed with hypo. What are peoples experiences with getting employers to realise that this can cause really debilitating symptoms, because whilst we may look fine we most certainly sometimes or a lot of the time do not feel fine. I am due to see OH to try and get on site parking (i work for an NHS hospital getting onsite parking is like gold dust) because my bus journey is 15 miles each way and 1 1/2 hour trip each way. I manage my job through sheer determination of not giving up and taking time off. But the commute is just too much. I am wondering do they take it seriously or is it brushed off. Is there anything anywhere I can refer them to if needs be?

[Kikki1971]

Yes I know, but that takes time and adjustments if necessary and not everyone is symptom free even then. I was just asking for experiences with employers recognising it at all.

[Kikki1971]

Yes I’m going to see OH in a couple of weeks to discuss it. I’m just a little aprehensive as like you say it’s the NHS!

[SlowDragon Administrator in reply to Kikki1971]

Who ought to be the most understanding .....

It can take at least a year to get dose of levothyroxine increased high enough to improve all symptoms

Important to test vitamin D, folate, ferritin and B12 and improve these to optimal levels too

How long have you been on levothyroxine?

[Kikki1971 in reply to SlowDragon]

Only 2 weeks.

[SlowDragon Administrator in reply to Kikki1971]

Presumably you have been started on 50mcg levothyroxine?

Bloods should be retested 6-8 weeks after each dose increase

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 and antibodies if not done so already

You may need to get full Thyroid testing privately as NHS refuses to test TG antibodies if TPO antibodies are negative

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, best not mentioned to GP or phlebotomist)

Extremely important to regularly test vitamin D, folate, ferritin and B12. These are frequently too low when hypothyroid and frequently need improving. If very low GP should prescribe. If low, but within range, self supplementing to improve to optimal levels can significantly improve symptoms

The aim of Levothyroxine is to increase the dose slowly in 25mcg steps upwards until TSH is under 2 (many need TSH significantly under one) and most important is that FT4 is in top third of range and FT3 at least half way through range

NHS guidelines on Levothyroxine including that most patients eventually need somewhere between 100mcg and 200mcg Levothyroxine.

nhs.uk/medicines/levothyrox...

Also what foods to avoid (eg recommended to avoid calcium rich foods at least four hours from taking Levo)

Levothyroxine should always be taken empty stomach and then nothing apart from water for at least an hour after

Many people take Levothyroxine soon after waking, but it may be more effective and more convenient taken at bedtime

verywellhealth.com/best-tim...

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. Teva is the only brand that makes 75mcg tablet. So if avoiding Teva for 75mcg dose ask for 25mcg to add to 50mcg or just extra 50mcg tablets to cut in half

healthunlocked.com/thyroidu...

Teva poll

healthunlocked.com/thyroidu...

No other medication or supplements at same as Levothyroxine, leave at least 2 hour gap.

Some like calcium, magnesium, HRT, omeprazole or vitamin D should be four hours away

(Time gap doesn't apply to Vitamin D mouth spray)

[Kikki1971 in reply to SlowDragon]

Thank you that’s very helpful. I’ve had B12, Vit D, ferritin, iron levels, T4 and TPO’s checked (I’m on ferrous sulphate anyway) antibodies. Not T3 tho which I may ask about next time I go to see the GP in 6 weeks. I take at 6am on an empty stomach then nothing for at least an hour and make sure I take my iron supplements at least 6 hours later.

[SlowDragon Administrator in reply to Kikki1971]

Optimal Vitamin D at least around 80nmol

Optimal B12 over 500

Optimal folate over 10

[LyraBelasqua]

I work for the NHS too. I have had similar sounding difficulties for years, down to the same mileage and length of time of the bus commute (I don't drive because I've never been convinced that I could be sure of being awake enough).

My work is office based, which usually requiring a 9am start. Last winter I was working two days a week and finding it impossible to get to work on time. The early start was making me physically unwell. Eventually I had so many warnings it came to a meeting with HR. Despite no official diagnosis of anything (an educated guess on my part, not thyroid related) I was offered reasonable adjustment of working three shorter days instead of two long days, with a later start time. It has made a huge difference.

[Lora7again in reply to LyraBelasqua]

When I worked for the NHS we always were given *special* treatment if we had any ailments... for example I had a trapped nerve in my foot so I mentioned it to my boss. The next day I was offered some injections for the pain. I am surprised you haven't been helped like I was. I haven't worked for them for a number of years but I do think NHS staff are still helped if they are ill. After all they need their staff to be well.

[Kikki1971 in reply to Lora7again]

Our car park is privately owned so the decision ultimately lies with them - they’re are not the most shall we say fair with the dishing out of permits - I will speak with OH and see if they can help me get one. To top it off I broke my foot 7 weeks ago rushing to get to work after parking 15 mins walk off site. My ligaments are knackered and the thought of doing it again gives me anxiety!

[Lora7again in reply to Kikki1971]

Shouldn't you be off sick?

[Kikki1971 in reply to Lora7again]

I have been for 4 weeks - been back 3 on phased return - husband and friends have been dropping me to and from.

[Lora7again in reply to Kikki1971]

They must need you to work. Are they short staffed?

[Kikki1971 in reply to Lora7again]

Sorry I don’t understand the question?

[Lora7again in reply to Kikki1971]

I was wondering why you were still going to work with a broken foot if you are having problems with mobility.

[Kikki1971 in reply to Lora7again]

The fracture consultant was happy for me to go straight back to work if I could get there and back! I had an aircast boot and crutches. My mobility can take months to recover fully this is just an aside problem - my thyroid is the long standing issue I’m concerned about and a 30 mile 3 hour round trip on a bus with all the symptoms hypo brings - fatigue being just one of them. I can’t continue parking off site until at least my mobility is normal if it ever will be.

[Lora7again in reply to Kikki1971]

I am sorry to hear that .... I do private blood tests because the NHS do not test my T3 or antibodies even though they have Graves' disease written on my notes. My treatment by them has been appalling but I do know other people are struggling as well. I am not trying to knock the NHS but they are not helping people with thyroid disease and we are having to fight for treatment when we really do not have the energy to do so.

[LyraBelasqua in reply to Lora7again]

I've never thought I was ill, to be fair. Just very sleepy, and that has been the same all my adult life and to a lesser degree since early childhood. So I've just tended to assume it was just me, and have muddled through with regular coal-haulings about lateness and on occasion a reprimand over falling asleep at work!

[LyraBelasqua in reply to LyraBelasqua]

Lora, you were fortunate to get such swift treatment for your foot! I do find individuals can be very understanding and helpful when they can.

[Kikki1971 in reply to LyraBelasqua]

Hi, yeah I’ve toyed with all sorts of ideas to make it easier - I have to do my hours over 3 days though and I have childcare and elderly parent commitments on the other two days as well. Just a worry all round I could do without. Our car park is privately owned to so it’s not even going to be my actual employers decision but OH can support me trying if they think I have reason to be supported.,

[Kikki1971 in reply to Kikki1971]

And to top it off I broke my foot 7 weeks ago rushing to get to work after parking 15 mins walk off site. My ligaments are knackered and the thought of doing it again gives me anxiety!

[LyraBelasqua in reply to Kikki1971]

You are having a really hard time! I wonder if you could use the equality legislation to your advantage? If a diagnosis of hypothyroidism brings with it free prescriptions for life, then presumably that must carry with it an implicit acknowledgement of disability until treated? And as you're having mobility problems as well, that should add weight to your case. It's a shame the car park is privately owned.

If Occupational Health turn out to be not helpful, might it be worth enlisting someone in HR to your cause - someone who is clued up on equality and disability and all that?

[Kikki1971 in reply to LyraBelasqua]

Yes it’s all a bit of a pickle ! I’m hoping OH will be supportive. I’m just not used to being needy or asking for help and support - never needed to before.

[LyraBelasqua in reply to Kikki1971]

I hope OH is supportive, and you'll probably find they are. I'll be interested to see how it all turns out for you. It's really really hard having lots of responsibility for other people when you're not well yourself.

[Kikki1971 in reply to LyraBelasqua]

Yes it is a lot on one plate. I will deff come back and let you know - my appt is 20th March. Thank you for your supportive comments really appreciate it.

[Buddy195 Administrator]

Hi, I saw OH & it really helped get changes I needed for my classroom- ie dimmer lights (I have TED) & less pc work/ bigger monitor.

[Kikki1971]

Further to my post above I had a chat with OH, they basically said the symptoms I experience from hypothyroidism (even with the backing of a letter from my GP that OH insisted was completed to support my request) it is not a recognised Illness as it can be controlled by medication. I cried on the phone during the telephone appt, I just give up. She did say if I still felt stressed and anxious about it all in 3 months I could try again as stress is recognised! So this prolonging just made me even more stressed as I’m still no further forward and things remain uncertain. The fact my GP referred to debilitating fatigue and increased anxiety with a long commute stood for nothing.

[AnnaSo]

In my 10 years work career I never had anyone take hypothyroidism as a serious enough condition to be subjected to a special treatment. And I believe that once you are optimally treated it is not.

I feel like a regular human but it took some time to get there. Lots of self education on the subject matter - don’t expect the GP to “fix” you. Supplements. Healthy diet. These are essential to bounce back.

[Kikki1971]

I’m not really asking for special treatment just for it to be taken into account with a 3 hour commute each day now imposed on me because they have changed the rules on applying for a parking permit at work. By car it’s 20 mins down the motorway - by bus (now my only alternative is 1 hour 20 each way - 6am start from home instead of 7.40am) . They go by the shortest route to work - which is the motorway - however public transport obviously doesn’t go that way and its a 15 mile trip with multiple stops so 1 hour 20 min journey each way. I don’t think it’s fair they change the rules (I was on a waiting list for one and was near the top) then don’t take any of this into account even though they ask for GP support and got it. Being medicated doesn’t always mean symptom free.