Sypmathic to thyroid conditions.(workplace)!!

[Thyroidfighter]

I'm looking for NHS.in the UK who as a employer sympathic to thyroid desease when looking at time off /sickness..really struggling with my workplace too even except my condition (hypothyroidism) as a long term condition ..(total thyroidectomy due to cancer)..PLEASE HELP !!

[galathea]

Sorry but its really not clear what you are looking for.    Can you rephase some of your post please.    I understand you have have your thyroid removed due to thyroid cancer and are now hypothyroid.       You shouldn't be struggling so much....  What medication have you been given and how many follow up tests have you had?    Do you know what your current tsh, free t4 and free t3 levels are?    Who is monitoring you?

Xx g

[shaws Administrator]

Welcome to our forum and I'm sorry you had a thyroidectomy.

There's no history in your Profile, i.e. when you had op? what dose? I assume levothyroxine?

I cannot answer about the NHS as a considerate employer but someone will respond if they have that information.

I assume you are feeling so bad and aren't getting the support you should be (although doctors appear not to be the best people to know much about the symptoms) especially if patient has no thyroid gland at all.

If you are on levothyroxine only I think you should ask for some T3 to be added to it, particularly as you have no thyroid gland and your dose of levothyroxine might not be sufficient to convert to enough T3. T3 is the necessary hormone that is needed for us to feel well and remove pain or any other symptom we may have.

If you do work in a hospital, ask if the lab will be able to test your Free T3 and Free T4 because if your FT3 is on the low side (it should be in the upper part of the range) it will prove you need some T3 along with T4 (levothyroxine).

[Thyroidfighter in reply to shaws]

Tsh 2.9..free t4. all I know was above range ..free t3 within normal range .

[shaws Administrator in reply to Thyroidfighter]

Hi Thyroidfighter,

Our members still need a bit more information. 

First when your blood was taken, was it the very earliest appointment? Did you not eat before it? This keeps the TSH a bit higher and that's what doctors only appear to take notice of.

Can you get a print-out of your blood test results from the surgery. All our members now get a print-out for our own records and they must also have the ranges. (a range looks something like this:

TSH 4.1 mu/L (0.3-4)

The figures in brackets after the results is the range). We need to know as labs differ throughout the country. (We've rarely had to do this previously but it's because of the way hypothyroid illness is diagnosed we have to resort to certain conditions).

Did your GP test Vitamin D and Vitamin B12 as these two can cause lots of problems if deficient. Also he should test your ferritin and folate and thyroid antibodies.

Doctors are told to only take notice of the TSH and only prescribe when it reaches 10, and some people's never reach that point but have lots of symptoms.

This is from Thyroiduk.org.uk our main Website and you can see from this that you 'could' have a problem with your thyroid gland.

thyroiduk.org.uk/tuk/testin...

[Thyroidfighter in reply to Thyroidfighter]

Now 23.3 tsh with normal levels free t3 freet4...oncologist at last as done a referral to endocrine specialist to try and regulate my tsh..on 175mg levothyroxine !!**(watch this space)..dx now with pbc so more tablets for life..what fun lol **

[shaws Administrator]

Your TSH is too high and should be around 1 or lower. Why was your thyroid gland removed?

[Thyroidfighter in reply to shaws]

Cancer 2013 + had two lots of radioactive iodine treatments

[Thyroidfighter]

Thyroid removed because of a groiter at 1st as 6x fna biopsy s came bck negative(so orginal endocrine Dr discharged me )Ent Dr was dealing with a ear problem so agreed to take out as mri shown it was very large..I'm asthmatic and was affecting my breathing at night..came bck as Cancer..

My ferrintin and vit d is low and thyroidglobin test b4 last was 0.01 & anti thyroid globin antibodies where present but Dr /oncologist reckon nothing to worry about..(bloods done 3 wks ago still not bck)..never knew about the eating thing always did at end of work on way home from hospital shift .

[Clutter in reply to Thyroidfighter]

Thyroidfighter,

Because I had thyCa my oncologist and endo targetted TSH <0.1 which should help avoid recurrence.  TSH 2.9 is high for a patient taking Levothyroxine.   Ask your oncologist to increase dose and check whether TSH should be kept suppressed.

Thyroglobulin 0.01 is good and if thyroglobulin antibodies are expressed as <20 that's good too.  I was told there is unlikely to be thyroid cell activity which can lead to recurrence when thyroglobulin remains <6.0 and thyroglobulin antibodies remain low.

If you can post your ferritin and vitamin D results members will advise how much to supplement.

[Thyroidfighter in reply to Clutter]

All I was told is I'm vit d insufficient(not low or ok) and ferritin below levels..(must make a effort in getting results pulled off..know I have to do this in advance and pay for copy of each result)..not seeing endocrine now till Sept so left feeling like this till then..bonus point though gp given me vit.d suppliments for 3 months .x

[Jazzw in reply to Thyroidfighter]

Unfortunately the NHS isn't the most considerate of employers when it comes to thyroid conditions. But due to not understanding about how life affecting they can be - "Just take these little white levo pills and you'll be cured!" (Alas, not always) - I suspect most employers wouldn't be sympathetic to be honest. 

Now - about this waiting until September lark - no, you DON'T have to wait. Ring the endo's medical secretary and ask for the results to either be read out over the phone to you or posted out. They're your results and so long as the doctor has seen them there's no reason you can't have them. Next, ask if your levothyroxine prescription can be increased by 25mcg as you're not managing on your current dose and you've been advised by an NHS-recommended support group (yes, this one!) that there's room for improvement given your TSH is over 2.

Stay polite but stand your ground. 

[shaws Administrator in reply to Thyroidfighter]

I think the very least they could do is add some T3 to levo. I have my gland and I felt much worse on levo than I did when TSH was 100 (undiagnosed). I improved when T3 was added.

Some surgeries charge a nominal sum for a print-out. When you get your first one make a copy of the ranges and next blood test phone and ask for results which they will probably tell you over the phone (so you wont need ranges). Also never take normal, fine etc. you need the numbers.

[shaws Administrator]

Jazz is right - don't wait - phone his secretary (don't be shy you don't get anywhere) you need treatment badly. Ask Endo for T3 to be added to levothyroxine. You should not be left on your own to cope with awful symptoms, sufficient thyroid hormones to bring your TSH right down to suppressed.

You are entitled to good care. I hope the Endo is sympathetic - it's o.k. for them to take your thyroid gland and leave you to do a Medical Course yourself to find out why you aren't improving.

Doctors appear to be the last people to be aware that people who've had thyroid cancer need their TSH suppressed. The addition of some T3 wouldn't go amiss as it is the Active hormone required in every receptor cell in our body.

I only pay a nominal sum for copies of my blood test results. I hope your surgery does too.

When you feel so unwell, you just do NOT know what to do next and getting no help at all from the medical profession. It is more than incompetence.

[Cockerpoo]

Hi Thyroidfighter. Sorry to hear you are struggling. I am new at this too and making my way slowly through this minefield myself. I am just replying to ask if your GP has the systmonline which allows you to book appointments and repeat prescriptions online, If so you can ask them to allow you to see your medical record online. I have full access to all my record and can see everything I have had done including all my test results. If they aren’t on this system, when I was at the doctors on Monday for more blood tests. There was a poster on the wall advertising a new NHS app which allows you access to your medical record it says. I came home and downloaded the app and started to fill in my details. You get to where you need to upload proof of identity like a passport, driving license etc. I only have the old fashioned paper driving license and couldn’t be bothered with trying to locate my passport which I would have if I hadn’t already got access to my medical record through the systmonline. The NHS app gets good reviews so worth a try. We are all allowed to see our records I am sure you shouldn’t be charged a fee. Hope this information is helpful.