Newly diagnosed

[Plumbobmummyreads]

Hello. I felt unwell for a long time. I've been diagnosed with underactive thyroid and started treatment. My symptoms have been severe and I've really struggled. I feel like every part of my body has been effected and yet from the outside no one can tell and it's hard for people to understand how bad I've felt. I'm still struggling with anxiety. I've joined this community because I'd like to be able to talk to people who understand what I'm going through. Please tell me things will get better eventually!

[helvella Administrator Thyroid UK]

Plumbobmummyreads,

Just going to bed but saw your post.

It can take time, but with good treatment lots of people do very well.

But it takes time and some effort to find out what you need to know.

I'm sure someone else will reply - though the night or in the morning.

[Jazzw]

I think many of us here will sympathise. It doesn’t help that doctors tend to take the attitude that a little white pill will fix us up really quickly when in reality, especially when left undiagnosed or untreated for a while, it can take some time to feel better. It’s a much misunderstood condition. Our GPs maybe spent half an hour learning about the thyroid when doing their medical training, so unless they’re fellow sufferers they don’t tend to understand how we feel.

But it does get better. And learning about the condition, what’s normal, what isn’t, is a great step towards feeling right again. Glad you’ve found us.

When did you start levothyroxine? Has it been long? What dose have you been started on? It’s very likely you’ll need an increase in dosage in 6-8 weeks. Very much hoping you have a GP who’s told you to have repeat blood tests in a few weeks’ time?

[Plumbobmummyreads in reply to Jazzw]

I was started on 100. I've been taking it for 7 weeks now and due a blood test. I am very glad to have found you all.

[5858 in reply to Plumbobmummyreads]

I am no expert but isn't that a high starter dose? I was put on 137 first dose and had horrible reaction. Seems that could cause high anxiety.

[Plumbobmummyreads in reply to 5858]

I had the anxiety before starting. They started that dose and plan to increase as the levels were so low.

[5858 in reply to Plumbobmummyreads]

Oh I see..... all the best!

[FoxyTed in reply to Plumbobmummyreads]

Hi Plumbob, I’m on a similar journey and yes it can be so hard, can’t offer treatment plan advice as the good people on here but just wanted to say hello and here’s to us getting better in the near future💖

[Plumbobmummyreads in reply to FoxyTed]

Hello 👋 thank you for your reply. It's so nice to not feel alone.

[FallingInReverse]

Welcome to the forum! You have come to the right place!

I was diagnosed in August 2022… but found this board about 9 months after, and that is when my real “getting better” started.

Back then I would say that I felt like I was 90 years old (I’m 50). Thyroid affects your entire body head to toe and down to the smallest cellular process. Literally EVERYTHING. But it is indeed an invisible disease - every single one of us fellow thyroid people understand.

Also - anxiety is a SYMPTOM of low thyroid hormones. Once your thyroid hormone levels increase, the anxiety will lessen.

Back then, I knew something was wrong, but doctors - even when well-intentioned - know so little about the thyroid. He was convinced I was depressed and needed antidepressants (I’m not, and I don’t…) For that year my doctor didn’t know what blood tests to do and what dose of thyroid hormone replacement I should have been on. He had no idea how to guide me as I worked up towards the dose that would make me feel better.

I was so unwell, and just so completely confused. When a too-low dose of Levothyroxine didn’t fix everything, my doctor threw his hands up like there was something weird or unusual about my symptoms.

Then I found this forum. It gave me hope, made me feel like I wasn’t alone. Educated me and gave me confidence. You will be amazed at how powerful it is to not be so confused, to know how to advocate for yourself , and to know you’re on the right track. Makes the low days more bearable.

It takes time and a careful ramping up of thyroid hormone replacement, and understanding a few key vitamins and minerals that the thyroid needs to function.

You will be drinking from a firehose at first, but soon the basics will sink in and it just won’t be as confusing.

Read posts here, ask your questions, and learn everything the very wise people here have to say.

IT DOES GET BETTER. Improvements can start right away, there are up and down days, and really getting your sea legs back can take a year or so for many of us.

But YES it gets SO much better than the early days you are in now. We have all been where you are, hang in there!

[Plumbobmummyreads in reply to FallingInReverse]

Thank you for your lovely reply. Yes, on my first trip to the doctors they wanted to start me on anxirty medication but I said no.

[Obsdian]

I have really struggled with the looking well and feeling terrible part. In fact, with the thyroid effect to my skin I look better than before I was ill. I find that hard.

[Regenallotment in reply to Obsdian]

Ha this is so true, colleagues have always said ooo you look well to me too. I have a friend who teaches psychology who said the most compliments she ever had was when she lost lots of weight during a divorce and folks said how amazing she must feel… er no, rock bottom. We all need to stop commenting on appearance don’t we 🙈🥹

[mstp]

How long have you been feeling poorly for? It took about five years before I was diagnosed despite me actually telling my GP after reading about thyroid probs in the waiting room three years beforehand. When I was eventually diagnosed and mentioned this, my GP said

"Your problem, Mrs P. is that you always look so well."

[Plumbobmummyreads in reply to mstp]

My first trip to the doctor was 2020. They said I was just stressed and laughed it was normal to feel tired with 2 small children. Then covid hit. Then next time I was told it was probably just anxiety and was offered medication which I declined. After that symptoms got increasingly worse. I went back to the doctors January this year. After a lot of tests and long waits for appointments I finally got diagnosed. I felt rock bottom at this point. Unable to swallow and struggling with simple tasks, couldn't stay awake even to read bedtime stories to my boys. I've now been on levothyroxine for 7 weeks. I've had bad days and better days. The hardest part is that family seem to think the tablets work like magic. After taking them two days people commented that they could see an improvement in me.

[Sparklingsunshine in reply to Plumbobmummyreads]

There's a terrible hesitancy on the part of GP's to diagnose hypothyroid, elsewhere in tbe world you can get a diagnosis when TSH is over 3, here in the UK it can be over 10 before you get any help. I dont know exactly why it is, ignorance and poor education of GP's about thyroid disorders, which is actually inexcusable as hypo is common.

Reluctance to start us on Levo because of ongoing costs of medication, regular blood tests and the fact we can apply for a medical exemption for prescription costs.

And thirdly thyroid conditions attract no extra funding for the practice, GP surgeries are private businesses these days and certain conditions they diagnose get extra points and therefore money from the NHS, diabetes, high blood pressure, anxiety or depression, high cholesterol.

These can be big money spinners, conversely thyroid attracts virtually no points. So its more lucrative to fob you off with anxiety pills than it is to diagnose your thyroid. Its probably a little of column A, a little of column B.

Plus women are far more likely to be dismissed by doctors and told their problems are down to mental health, not a physical issue. That is down to historical prejudice and misogyny.

[humanbean in reply to Plumbobmummyreads]

They said I was just stressed and laughed it was normal to feel tired with 2 small children.

This continued ignoring of women when we feel unwell makes me really, really angry. The repeated dismissal is often commented on on this forum and anywhere where a lot of women gather together on the internet. (I find that fewer women talk about this problem in "real life".)

We are told our problems are due to puberty, pregnancy, childbirth, being a mother, stress, approaching menopause, being menopausal, getting old (it crops up quite often at various stages of life - I was first told this when I was 27!).

[Regenallotment]

you are right there… every part of the body affected 🙏

Do you know if your hypothyroidism is autoimmune? Did they test antibodies for you? I have some book recommendations if so (and if not).

Podcast by Dr Eric Balcavage Thyroid Andwers is very good. As is Let’s talk thyroid. I learned so much from these.

🌱

[Plumbobmummyreads in reply to Regenallotment]

I don't know yet. The doctor mentioned checking antibodies at my next blood test.

[SlowDragon Administrator]

Anxiety is very common hypothyroid symptom, it should improve along with other symptoms as your body recovers

Do you have copies of your results from diagnosis

which brand of levothyroxine are you currently taking

Bloods should be retested 6-8 weeks after each dose change or brand 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)

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)

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)

Private tests are available as NHS currently rarely tests Ft3 or all relevant vitamins

Post all about what time of day to test

healthunlocked.com/thyroidu...

Testing options and includes money off codes for private testing

thyroiduk.org/testing/

Medichecks Thyroid plus BOTH TPO and TG antibodies and vitamins

medichecks.com/products/adv...

Blue Horizon Thyroid Premium Gold includes BOTH TPO and TG antibodies, cortisol and vitamins

bluehorizonbloodtests.co.uk...

Only do private testing early Monday or Tuesday morning.

Link about thyroid blood tests

thyroiduk.org/testing/thyro...

Link about Hashimoto’s

thyroiduk.org/hypothyroid-b...

Symptoms of hypothyroidism

thyroiduk.org/signs-and-sym...

Tips on how to do DIY finger prick test

support.medichecks.com/hc/e...

Medichecks and BH also offer private blood draw at clinic near you, or private nurse to your own home…..for an extra fee

[FallingInReverse in reply to SlowDragon]

 Plumbobmummyreads just so SD’s reply doesn’t get buried, a big part of getting better is getting the blood tests you need and getting them under consistent conditions.

The above post is your most actionable one here. The quicker you find a way (NHS or private like medichecks) to get the ones noted above, the less time you will waste making uninformed dosing decisions.

As we increase dosing you will see many posts here every day sharing results for TSH, Free T4, FreeT3, d3, folate, b12 and ferritin. These are - along with your symptoms - the key to informed decisions for getting better!

[TheRightSide in reply to SlowDragon]

Hi SlowDragon, it's me again. Suggestion for how long shall I consume all the supplements? I'm having D3 and B12+folate now. Seems like it's a good to start with these two first? And any advice on when to do the blood test?

[SlowDragon Administrator in reply to TheRightSide]

I replied on your own post

[Otto11]

Hi you are definitely in the right place. This group are amazing. It’s a lot to take in at first & rather overwhelming. I had no knowledge of how to challenge my GP who kept telling me I was depressed. I eventually found this group & with their help I have learnt so much. As others have said most GP’s have little training in Thyroid disease. Now you have started Thyroxine your symptoms should start to improve.

[serenfach]

You may find it helpful to look up the Spoons Theory - it explains cronic illness fatigue and how you can manage it day to day. It also is helpful to shut people up!

Your GP should test your blood again in around 3 months to see how your thyroid levels are. You are entitled to the results and it is helpful for you to monitor your own levels, and if you stick them here, we can help further.

You will feel more human soon, one of the worst things about this thyroid business is the length of time it takes to get your levels right, but it will get better. Sending a hug.

[FallingInReverse in reply to serenfach]

Spoon theory! Never heard but just searched it and love it.

This is the link I clicked of tue many and it was cool to see our nuanced challenges articulated.

psychologytoday.com/us/blog...

[Sparklingsunshine in reply to FallingInReverse]

Its an interesting piece, my issue with people is that they often just look at the surface, the neurologist included. So yes a wheelchair user on the surface may appear more disabled but if the person in the wheelchair doesnt have ongoing chronic pain, fatigue, problems sleeping, anxiety etc then are they more disabled than someone who isnt in a wheelchair but has to deal with those issues in a daily basis.

Depending on the reason you are in a wheelchair makes all the difference. If its a chronic illness then you will be dealing with daily symptoms, if as a result of an accident then maybe not.

Just because someone isn't visibly disabled doesnt mean they aren't struggling. I had a few instances of being challenged years ago when using my blue badge, I didnt use a wheelchair and couldnt manage a stick or crutches.

I had some self appointed " experts" claiming I was too young or didnt look disabled. I wish these people with their superpowered X Ray vision were working for the NHS. Maybe waiting lists would be shorter.

[mstp]

If you can, arrange to test your B12, vitamin D, ferritin, and folate. Your GP might be willing with any luck. These are all important to your thyroid story, and if any of them are low, will be having a detrimental effect on your well-being. Read up on their significance as you will need to educate yourself to ensure you understand how to keep tip-top in the years ahead. Ensure you look at the results yourself. When I was poòrly my GP told me my results were OK. As I studied the paper copy I asked for on my way home I realised my ferritin was one away from the bottom of the normal range and my B12 was only 250 when it needed to be around 700. Sorting these out kick started my recovery.

[TheRightSide]

Hello there! I'm also new in this amazing forum. Just like you I've been suffering from my (mostly) unexplainable symptoms for years. I've been to many doctors and none seemed to check my thyroid, until I found out myself (and tested) that I have Hashimoto. Doctors dismissed my symptoms cause all my levels are still in range, so unlike you, I'm still not needing any medication yet. And yes, they all blame it to anxiety and stress, offered me Xanax but I refused. They referred me to psychologist and I tried for the first time and never went back. 60 minutes of counselling only to casually talk about my life while I was having dizziness, throbbing tensional headache, then the last thing she asked if I wanted to try SSRIs. I refused. Found out that she's more a marriage therapist. For the past 5 years day in day out I feel like I haven't seen better days. But the symptoms are so debilitating, some days I even can't function at all. So frustrating. And it seems like they just keeps adding up. I'm also having stomach issues, swallowing problem for months now.

How were you feeling/your symptoms when you're diagnosed? Have the doctors tested you on thyroid panels before?

[tattybogle]

Hi plumbobmummy , show these to your family, they may help them understand the magnitude of the problems your body is (and has been) facing :

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A Helpful Quote from another members GP ,on what to expect when starting treatment for hypothyroidism.

"The way my new GP described it was ..."You know how your body is continually breaking down and rebuilding itself? Well, the thyroid controls the rebuilding, so if it isn't working you carry on breaking down but don't rebuild properly. Your body now has a lot of catching up to do, which will take a minimum of 12 months, probably a lot longer...." or words to that effect. He also said it would be a saw tooth recovery (get better, go backwards a bit, get better, go backwards a bit) and he's been right so far."

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

verywellhealth.com/when-you... An Open Letter to Family and Friends of Thyroid Patients By Mary Shomon

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Why starting thyroid replacement hormone doesn't just fix everything ,because getting the dose right for the individual is very important:

healthunlocked.com/thyroidu... -the-shoe-size-analogy.-*

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

A quick read of this recent survey and report by Aberdeen University Business School will give other people a better idea of the scale of unrecognised and 'invisible' problems that many thyroid patients face throughout their lives .. even after they have been 'adequately' treated.

abdn.ac.uk/news/documents/T... Peoples Experience with Thyroid Disease by Catia Montagna /Alexandros Zangelidis May 2023

[Plumbobmummyreads in reply to tattybogle]

Thank you for this. It is so helpful, especially the bit about the body breaking down and rebuilding.

[TheRightSide in reply to tattybogle]

This is so helpful indeed. I have Hashi but my levels are all still in range, so doctors don't start medication yet. It's so frustrating cause I have symptoms for years already and feels like my body keeps breaking down. 😭 But this forum helps a lot and I'm still learning to manage these symptoms.