I feel so unwell and not sure what to do?

[CharlyMae]

If you see my previous post you’ll know my thyroid is going overactive, my CRP is high and my vitamin and iron levels are low.

I can take the vitamins and eat more iron rich foods but will I ever feel well again?

Sounds dramatic but since my thyroid went under active and my antibodies were high 2 years ago, I have seen a decline in my health.

My vision is going (eye tests don’t show anything bad), I feel dizzy, my speech is slurred, I am constantly tired and my joints hurt…

I feel so slow and low and I am a shadow of the person I used to be. I even stutter when I talk now!

How long does it take for vitamin levels to rise?

I have also lowered my dose to 25mg to see if I can balance out my TSH.

I feel like utter shit.

[greygoose]

The TSH is the absolute least of your worries! Forget it. It doesn't cause symptoms and it is a very bad indicator of thyroid status.

You have Hashi's, and what your last labs indicated was not that you're 'going over-active', that is a physical impossibility, because you're hypo. But, you were either on a Hashi's 'hyper' swing, or just coming down from it. So, if I were you, I'd stop the levo completely until you start to feel hypo again. The high FT4/3 levels will come down as the excess hormone is used up/excreted, and you will be hypo again.

It's difficult to find the right dose in the early days of Hashi's, because levels fluctuate too much. But, as more and more of the thyroid is destroyed, it will get easier. So, don't give up hope.

[CharlyMae in reply to greygoose]

Would a U.K. doctor know what a Hashimoto’s hyper swing is? I feel like they jus laugh at me… some of the doctors even ask me what Hashimoto’s is

Feel so alone…

[SlowDragon Administrator in reply to CharlyMae]

You need to always call it autoimmune thyroid disease here in U.K. (rather than Hashimoto’s)

Hashimoto’s can bounce around soon after giving birth ….it should settle

Was dose levothyroxine increased when you were pregnant?

It might be ….now you have had your lovely baby, dose needed reduction a bit

Or because vitamins are rather low …..and your now working improving these

[CharlyMae in reply to SlowDragon]

Thank you I will call it that from now on… my dose never changed in pregnancy and my levels were a perfect 1 but now it’s all going wrong… it’s hard just to get an appointment these days. I have dropped my dose myself until I can see a doctor.

Can thyroid cause high CRP? They always try and put me on antibiotics as my CRP has been high for like 2 years. No idea how to reduce it.

Never felt so unwell in my life…

[Frankyn in reply to CharlyMae]

I’m so sorry you are feeling this like this. I was diagnosed last year and the first half of this year felt the same as you very similar symptoms. And so hard looking after others when so depleted yourself. All I would say is. I feel significantly better the last month or so- maybe from the vitamins recommended here or maybe just one of my swings/ attack has calmed down etc. just to say hang on in there. And really Hope you feel better soon.

[SlowDragon Administrator in reply to CharlyMae]

When we are pregnant the autoimmune aspect of disease frequently improves, but after giving birth it tends to reappear

Very common for Hashimoto’s to get diagnosed soon after pregnancy

Levels should settle, retest again in week or two

Cheapest for just TSH, Ft4 and Ft3 is Monitor My Health £29 (via NHS private service ) and 10% off down to £26.10 if go on thyroid uk for code

thyroiduk.org/getting-a-dia...

monitormyhealth.org.uk/

How much levothyroxine were you taking before reduced?

Have you had coeliac blood test done

Are you already on strictly gluten free diet or dairy free diet?

Consider asking for referral to endocrinologist…or see one privately if levels not settled in month or two

Email Thyroid U.K. for list of recommended thyroid specialist endocrinologist and doctors

[e-mail]

[greygoose in reply to CharlyMae]

Well, I think you've answered your own question. No, most of them wouldn't. But, that's not just a UK doctor problem, that's universal. They're all ignorant! In all countries, going by what we see on here. Which is why it's sometimes better to go our own sweet way, and leave them out of the equation. If you lower your dose, or stop your levo, just do it on your own. Because they don't understand, and once they've lowered a dose - which they absolutely love doing! - they are very reluctant to put it up again.

You know your own body. Listen to what it's telling you. It will let you know if it thinks it needs more or less. All doctors do is look at the numbers - usually just the TSH, which tells they nothing much, once it gets below 1. They have no idea what it feels like to be hypo. What's more, they don't even care!

Oh, and by the way, they don't use the name Hashi's in the NHS, they say Autoimmune Thyroiditis. But, they still have no idea what it is!

[Jenonnet]

Hi, so sorry to hear you feel so bad. It sounds very familiar to me... Have you seen anyone about having a Fibromyalgia test with the rheumatologist? 🤔 I too have hypothyroidism and also Fibromyalgia, they are linked. I first got the hypothyroidism, then a few years later was diagnosed with Fibromyalgia, although I'd had that for many years, just not very bad so symptoms just got put down to other things.Your symptoms sound very much like some of my fibro symptoms.... Might be a good idea to read up on fibro symptoms and ask the doc for a referral to the rheumatologist. Good luck. Hope you feel much better soon. 😊

[DippyDame]

Sorry you feel so unwell.

It's no comfort I realise, but many of us here have walked that crap journey, so you are not alone ....we understand.

Like Jenonnet I too was diagnosed with Fibromyalgia ( and CFS) it turned out that my symptoms were those of undiagnosed hypothyroidism!Suggest you treat as greygoose and SlowDragon suggest.

Primarily you need to adjust your hormone levels according to your body's needs

Medics are pretty clueless about all things thyroid and their focus on TSH is keeping countless people unwell....as this forum proves!

Like many others here I had to take control of my treatment...do that, follow advice as above, be kind to yourself, listen to your body and try to be patient ( the hardest bit!!)....

Hang on in there ....come back for support as often as you need it

[jgelliss in reply to DippyDame]

👏👏👏👏

[Hmilana]

Hi Charly Mae,

I have the same symptoms as you but more like muscle pain in my arms rather than joint pain. I’m a 35 year old female with two young children, so it’s very hard atm trying to manage these symptoms.

I have hypothyroidism, but my levels are currently normal. I’m also currently having really bad brain fog & trying to understand if all of this is to do with my thyroid or something else 😒