I have only recently been diagnosed with hypothyroidism, but have been suffering for a long time from the symptoms with no idea what was wrong with me. I have a really demanding job and I'm on my feet all day and over the last few months I have been forcing myself to carry on. My legs were swollen, I hurt absolutely everywhere, exhausted and my weight was and is ridiculous. I was signed off and they started doing tests, then my fit note was extended and I have now been off for 7 weeks, I'm due back next week and I am terrified as although I started medication last week I feel no different, I'm tired all the time and the pain my body is in still hasn't changed. My manager spoke to me and was quite funny with me and no one at work is talking to me anymore, I'm an anxious person anyway and I suffer depression and my boss basically said I need to pull my big girl pants up and get back to work. She said they are all tired too and stressed but they are all still there. I feel like I'm going to be hated and as physically you may not see what's wrong with me I am suffering inside. I can't afford not to work but mentally I'm not sure I can cope with how they will treat me when I'm back. When I said I was diagnosed with hypothyroidism it was kind of met with a 'is that it!?' by them all and having 7 weeks off work was a p-take. Sorry I am ranting but I'm new to this and my anxiety is so bad at the moment
Newly diagnosed : I have only recently been... - Thyroid UK
Newly diagnosed
Welcome to the forum Ag42- we are a friendly and supportive group and are here to help!
So we can offer better advice, can you tell us more about your thyroid condition, eg current medication & dosage, plus blood test results (with ranges in brackets) for:
TSH
FT3
FT4
Plus any antibody and key vitamin tests (ferritin, folate, vitamins D and B12)
If your GP is unable to complete all the above (eg if TSH is within range, some surgeries may not be able to access FT4 and FT3 tests), you could look to do this privately, as many forum members do, for a better picture of your thyroid health:
thyroiduk.org/help-and-supp...
Increased anxiety has been the worst symptom of having a thyroid condition for me and it is always worse if thyroid medication or key vitamins (ferritin, folate, vitamins B12 and D) are not optimal.
My GP initially diagnosed me with ‘ health anxiety’, suggested I saw a psychotherapist & offered me anti depressants. Joining this forum helped me realise that my symptoms were related to being under medicated and I followed forum advice to improve this.
welcome to the forum
It can take a long time to get levels right
Your work colleagues are not being understanding or helpful
You may well need to go back to work at reduced hours initially and less physically demanding work until your levels improve
Anxiety and depression are both hypo symptoms and will improve as your thyroid levels improve
How much levothyroxine have you been started on and which brand of levothyroxine
It takes minimum 6-8 weeks for each dose increase in levothyroxine to balance out
Have you got copies of test results from BEFORE starting on levothyroxine
And have you had new tests yet
Bloods should be retested 6-8 weeks after each dose change in levothyroxine
For full Thyroid evaluation you need TSH, FT4 and FT3 tested
Also both TPO and TG thyroid antibodies tested at least once to see if your hypothyroidism is autoimmune
Very important to test vitamin D, folate, ferritin and B12 at least once year minimum
Low vitamin levels are extremely common when hypothyroid, especially with autoimmune thyroid disease
About 90% of primary hypothyroidism is autoimmune thyroid disease, usually diagnosed by high TPO and/or high TG thyroid antibodies
Autoimmune thyroid disease with goitre is Hashimoto’s
Autoimmune thyroid disease without goitre is Ord’s thyroiditis.
Both are autoimmune and generally called Hashimoto’s.
Significant minority of Hashimoto’s patients only have high TG antibodies (thyroglobulin)
NHS only tests TG antibodies if TPO are high
20% of autoimmune thyroid patients never have high thyroid antibodies and ultrasound scan of thyroid can get diagnosis
In U.K. medics hardly ever refer to autoimmune thyroid disease as Hashimoto’s (or Ord’s thyroiditis)
Essential to test vitamin D, folate, ferritin and B12
Lower vitamin levels more common as we get older
For good conversion of Ft4 (levothyroxine) to Ft3 (active hormone) we must maintain GOOD vitamin levels
What vitamin supplements are you taking
Also VERY important to test TSH, Ft4 and Ft3 together
What is reason for your hypothyroidism
Autoimmune?
Recommended that all thyroid blood tests early morning, ideally just before 9am, only drink water between waking and test and last dose levothyroxine 24 hours before test
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)
Hi, thanks for replying, when they did the first thyroid check:TSH = 16.5
Ft4 = 7.2
They didn't do the ft3, and I was already taking two types of antidepressants but they decided to increase my sertraline to 150mg daily and keep my mirtazapine on 15mg. I have been taking high doses of tramadol and pregabalin for two years as well, so they have suggested reducing my tramadol slowly as that would be adding to my fatigue. I had the second blood test:
TSH = 14.8
Ft4 = 7.7
That was when the doctor gave diagnosis and I have to have my next blood test in about 7 weeks and they said they will add on the test for antibodies.
I have been taking vitamins for years as I thought they would help how I was feeling , magnesium, vit b1 and vit b12, vit c, and vit d, so when they tested my b12 it was in normal range and my folic acid was ok. They tested my fsh which they said was abnormal but expected and the same for my oestrogen results said the same.
They started me on levothyroxine 50mcg once daily Teva brand I believe.
Sorry I'm not sure what else there was but I was told I'm also approaching the pre-diabetic range
I'm just so tired and I'm working myself up especially at night even when I am so tired I can't sleep as I'm playing out different scenarios in my head of what they will be like with me, feel like I'm going crazy.
Sorry just checked and it's Hillcross brand on the box not Teva
so your results show you are significantly hypothyroid
you are going to need several dose increases in Levo over coming months
Levothyroxine is an extremely fussy hormone and should always be taken on an empty stomach and then nothing apart from water for at least an hour after
No other medication or supplements at same as Levothyroxine, leave at least 2 hour gap.
Some like iron, calcium, magnesium, HRT, omeprazole or vitamin D should be four hours away
(Time gap doesn't apply to Vitamin D mouth spray)
Many people take Levothyroxine soon after waking, but it may be more convenient and perhaps more effective taken at bedtime
verywellhealth.com/best-tim...
markvanderpump.co.uk/blog/p...
markvanderpump.co.uk/blog/p...
If you take levothyroxine at bedtime/in night ...adjust timings as follows prior to blood test so last dose is 24 hours before test
If testing Monday morning, delay Saturday evening dose levothyroxine until Sunday morning. Delay Sunday evening dose levothyroxine until after blood test on Monday morning. Take Monday evening dose levothyroxine as per normal
Different brands of levothyroxine
Many people find Levothyroxine brands are not interchangeable.
Relatively new ……Hillcross brand
This is a box, rather than a brand. 50mcg and 100mcg are Accord brand….but beware 25mcg is Teva brand
Accord only make 50mcg and 100mcg tablets.
Accord is also boxed as Almus via Boots,
When you increase dose after next blood test to 75mcg in order to stay on Accord brand you could request extra 50mcg tablets and cut in half to get 25mcg
Most easily available (and often most easily tolerated) are Mercury Pharma or Accord
Mercury Pharma make 25mcg, 50mcg and 100mcg tablets
Mercury Pharma also boxed as Eltroxin. Both often listed by company name on pharmacy database - Advanz
Wockhardt is very well tolerated, but currently only available in 25mcg tablets. Some people remain on Wockhardt, taking their daily dose as a number of tablets
July 2024
Crescent levothyroxine. Dosages: 12.5, 25, 50, 75, 100
(Not yet known if all approved dosages are or will be available).
Excipients: lactose monohydrate, maize starch, croscarmellose sodium, gelatin and magnesium stearate.
Lactose free brands - currently Vencamil or Teva
Vencamil is lactose free and mannitol free. originally only available as 100mcg only, but 25mcg, 50mcg and 75mcg tablets became available Sept 2024
Prior to March 2023 Vencamil was called Aristo
Vencamil often very well tolerated/best option for many people
How to get Vencamil stocked at your local pharmacy
healthunlocked.com/thyroidu...
Posts discussing Vencamil
healthunlocked.com/thyroidu...
healthunlocked.com/thyroidu....
Teva makes 12.5mcg 25mcg, 50mcg, 75mcg and 100mcg
Many patients do NOT get on well with Teva brand of Levothyroxine.
Teva is lactose free, but contains mannitol as a filler instead of lactose, which seems to be possible cause of problems. Mannitol seems to upset many people, it changes gut biome
Helpful post about Teva
healthunlocked.com/thyroidu...
Posts that mention Teva
healthunlocked.com/search/p...
Teva poll
healthunlocked.com/thyroidu...
Helpful post about different brands
healthunlocked.com/thyroidu...
List of different brands available in U.K.
thyroiduk.org/if-you-are-hy...
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.
Government guidelines for GP in support of patients if you find it difficult/impossible to change brands
gov.uk/drug-safety-update/l...
If a patient reports persistent symptoms when switching between different levothyroxine tablet formulations, consider consistently prescribing a specific product known to be well tolerated by the patient.
academic.oup.com/jcem/artic...
Physicians should: 1) alert patients that preparations may be switched at the pharmacy; 2) encourage patients to ask to remain on the same preparation at every pharmacy refill; and 3) make sure patients understand the need to have their TSH retested and the potential for dosing readjusted every time their LT4 preparation is switched (18).
And here
pharmacymagazine.co.uk/clin...
Discussed here too
I was already taking two types of antidepressants but they decided to increase my sertraline to 150mg daily and keep my mirtazapine on 15mg. I have been taking high doses of tramadol and pregabalin for two years as well,
Were thyroid levels not tested during last 5 years ….
No, I haven't been tested before and I was surprised the more I looked at the symptoms I had been suffering and they are all symptoms of hydrothyroidism. I went to the doctor two years ish ago as I have these yellow marks under my eyes and I wanted to know what was wrong, they did a blood test for cholesterol and told me it was fine yet the doctor who diagnosed me last week asked me about these marks and said they can be a sign for hypo, so why did the gp before not think to test me back then, it's crazy and all the pain I have had this last year could have never happened
Going forward you need to keep good record of how you are on each dose and brand of levothyroxine
If you find one brand is better than others for you, request GP specify the brand on the prescription
Always test early morning and last dose levothyroxine 24 hours before test
If you can, join a union for support dealing HR over organising a phased return to work
And get everyone at home to help out
They need to understand too, that you are not well and it’s going to be a while until your energy levels improve
This Spoon theory can help explain what it’s like living with limited energy
theinvisiblehypothyroidism....
As your dose levo slowly increases over coming months you will find your energy levels improve
The way you are over thinking things at night is very much a hypo symptom. As is poor sugar control.
People often have trouble with colleagues not understanding. It's a terrible disease but it's invisible. All those antidepressants are just a sticking plaster on the problem. Depression is a symptom of hypo.
You need to try to explain to them that the thyroid is the power pack of the body. Every cell is powered by thyroid hormone. Yours is currently broken, leaving you exhausted all the time, tired but unable to sleep at night, depressed, sluggish, unable to multitask or function well when needing to use the brain. Tell them it feels like some one pulled your plug out of the socket.
You also need to explain that although you are started on thyroid replacement hormone, it has to be titrated very slowly and over a long time period with lots of testing along the way. And until you get the dose right (talking 6-12 months perhaps) you won't be miraculously better. Good luck.
Thank u, and that is exactly how I feel
Sorry to hear of your awful experiences. Some people don’t even want to understand and explaining your condition is just a waste of your precious energy. I agree re the union you def need support and guidance on your side,
Some of us suffer dreadfully when thyroid or female hormones are off, I know - I almost didn’t make it. I do know tolerance to stress is low, you are not on your own but you will get through this, you have already started. Take care and be kind to yourself💐
Hi there - I read your post and really felt for you because a similar thing happened to me.
I was undiagnosed for a long time and working in an extremely stressful job, with horrible management. I was also driving 1000s of miles and don’t know how I kept going. My TSH was 27 when diagnosed and I then went through 2 more years of hell being treated by a GP until I eventually paid to see a private Endo.
I had no time off work- had a mortgage to pay and 2 teens to provide for : I understand your pressures. I honestly don’t know how I survived.
Years later I had breast cancer and was forced to take time off - and my employers were not the least bit supportive. So I joined a union (Unite) as an individual and it was the best decision I made. My company was not unionised but I was totally supported by my local Unite Rep who accompanied me to all my HR meetings - she was brilliant. And she made a massive difference to how I was treated by my employers.
I don’t know if any of this helps you but paying to see an Endo and getting Union support were the 2 things that helped me.
Quite honestly, I could cry reading the comments your ‘colleagues’ have made. Oh well……. ‘The whirligig of time brings in his revenges’ 🙂
Wishing you the very best
I am sorry to hear your story ,life can be so hard and people suprise us by the way they can treat a person. I am a single mother with three kids , my eldest is 21 an pregnant whilst my youngest is only 10 and my middle one is nearly 16, my mum lost her home and is living with me, so homelife already holds enough stresses without work adding to my anxiety and I feel guilt when I know I have nothing to feel guilty for but I just say sorry when I really want to stand up for myself. I'm going to have a look at unite as my company doesn't have a union either, thank u for that.
Thank u for your post, take care
You know, unless you have experienced it, I don’t think anyone can imagine what you are coping with and how much you are supporting others, let alone trying to get the best treatment for yourself - and keep your job! I’m so sorry your mom lost her home.
I was the youngest in a family of all boys: had to look after myself from a young age. But being the oniy girl, I also nursed my father till he died when I was 18 - then same for my mother when I was 41. Divorced at 29 with a 3 and 5 yo - and nursing my mom - I did low paid local jobs till my mom passed away.
So I wasn’t free to earn till my 40s , and was able to get a mortgage at 50. Paid that off at 66. It was very hard work at a time when I had to cope with health issues - just as you are.
I am only saying this to urge you to not feel any guilt at remorse at advocating for yourself, or getting support, be it for your own health care, or protecting your employment rights. It took me far too long to do that! Don’t be bullied into submission - because that’s what it is when your needs are not met - by doctors or employers.
My daughter is now 46 but has a severe and enduring mental illness, or SMI, they call it. I go through all the same fights for her - but with a bit more experience - in seeking appropriate support and care. Nothing has changed in the last 30 years - if anything, it’s harder to penetrate ‘pathways and nhs protocols’ . But you have EVERY right to seek help.
The Citizens Advice Bureau have been outstanding at helping us with my daughter’s benefits entitlement.
Having individual Union membership was a life saver for me at work.
Getting what you need from a GP is a whole different learning curve and it took me years to understand this. I believe you will find great support in that regard on this site😊
When people ask how I cope / I reply; “oh I just keep going to spite everyone!😂”. There’s more than an iota of truth in that!
I've had a mix of responses and comments from colleagues and found that difficult too. I don't work anymore after a long time off ill, I gave up (other issues added on top of already struggling).
I found everyone knows someone with hypothyroidism and they're fine so you should be too. There are a lot of people who aren't willing to understand but some that are willing to learn. I didn't manage to educate many but it helped to try.
People are hard to deal with.
I also agree with the person who recounted a positive union experience. I found the same and my union rep also had a chronic illness and that support was great when everyone else's support felt non existent.
Thank you, I just try and put myself in their shows and think how I would treat them and it's so different, I would show empathy and like you said I would want to educate myself, work is stressful and minus one in the team adds pressure but when the reason is for an actual medical condition you would expect a bit of acceptance, take care
You’re not alone. We’ve all been where you are in some form or another. And whereas it takes patience, once you start treatment and get on the path of optimizing that treatment - you will feel “better “ than you do now.
It does get better, but it can indeed be really hard.
And yes, depression and anxiety is a symptom of hypo… AND even without the biochemical response to low hormones … even the happiest most optimistic person would feel sad and down when managing the physical limitations of being newly diagnosed and not yet optimally treated.
You are not crazy, your physical ailment is real. Even though no one will really understand since it is truly an invisible disease.
You’ll get great shared experiences here from others who have gone through it. Hang in there, keep us posted, we are here to help and commiserate!
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