Sat crying. Could this be why I am fatigued and... - Thyroid UK

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Sat crying. Could this be why I am fatigued and dizzy?

30 Replies

Sorry to post again I am sat crying and have no idea what to do.

For 9 months I have had fatigue, I do have an anxiety disorder but it's never made me tired. I called my GP and he thought I had a thyroid issue and said he would run tests, came back with all fine. I got a copy and saw my TSH was 5.35 (0.35-5.35). T4 was 11 (7-17) I was told I was fine. By October I felt worse but this coincided with my son having extreme panic attacks due to bullying and me being told to take on the burden of it all. CAMHS refused to help so I had to give myself therapy. My son told me he was suicidal with it all, my kids have been ill one after the other and I have been left juggling it all, it's been hell on earth. So with this my fatigue got mych much worse and in November I was floored by dizziness. THe type where the ground moves or bounces as you walk. Not so much in the head. I had my GP out twice, ran bloods and did balance tests etc. He said it was stress and anxiety.

My anxiety has rocketed because of how i feel every day. I am living in a self made prison. I take the kids to school then come home and cry. I wake in the morning and during that first hour I don't feel too tired. I get my kids to school then come home and am floored by fatigue. It manifests in very heavy stinging eyes and brain fog. I spend my day resting with some gentle yoga some days. Pick my kids up then come home to rest again. Every day I have the ground moving when I walk, like walking on a trampoline, only twice has it been in my head where my head feels like it's dizzy, not room spinning but very woozy and heavy. My GP told me my BP was fine, its about 110/70. Pulse normal. He did balance tests and I can stand feet together no swaying really, walking in straight line, run on spot.. muscle tests all good, reflexes fine. He said no indication it's ear related or brain. I have been terrified i have a brain tumour :-(

I got my bloods from December and all were ok other than cholesterol high, and diabetes hba1c test was 40 (range 20-41) when i asked why as I have no diabetes in the family he gave me no answers. I have a good diet so none of this makes sense. My thyroid results were TSH 2.93 and T4 10.2 both taken at 1pm after 2 meals as he came out to my house to do it.

I went private 2 weeks ago with blue horizon and my TSH was 6.54 (0.2-4.20) and FT4 14 (12-22). I sent results to a different GP, not the nice one that came out to see me, stupidly sent to the one that in the summer thought I had a thyroid issue thinking he might help. Well no as I said last week in my post, he was a horrible man, and spoke to me like dirt and told me 'wel don't know what to do with people like you Julie'. Telling me I had no reason to be chronically fatigued and no idea what to put it down to as my B12 is 501, Ferritin is going up, currently its 31. HB is excellent at 15.

I woke up today feeling like i hadn't even been to sleep. I slept 11-7 and sleot through 2 alarms, not like me and all day I have felt like my eyes have bricks on them, heavy foggy head, weak legs and like the ground moves with every step. My balance feels awful. I did the balance test and I don't sway so I don't believe it's my ears. The GP on the phone last week laughed at me for being worried about my dizziness and said 'I will refer you to ENT if it calms you down'. I felt so stupid. My anxiety is now so high, I can't have visitors, can't do appointments, can't answer my door to the postman.... and it is all because of how weak and fatigued I feel, for some bizarre reason it all brought back my anxiety disorder and I feel terrible. Other people can be fatigued and dizzy and not panic like this, so why am I? I am too scared to call the nice GP again incase he wants to come out to my house. I sound mad don't I :-(

I have felt this bad for 11 weeks and I am so worried what is wrong with me. Could this horrific fatigue and dizziness really be due to my TSH being 6.54? THe GP last week said my antibodies are fine on the blue horizon test, t4 fine so no I don't have hypothyroidism and they won't be keeping an eye on it. I could cry. I am so so scared. I have no support, no mother who cares enough to support me. My husband works long hours. I worked so hard to get where I was, I had horrific anxiety for 2 years after a tough time in my life, I was out living again, doing appointments... then this fatigue hit and I haven't been the same since, the dizziness has just pushed me further over the edge and I am now housebound pretty much. I feel a failure and probably depressed :-( WHich the stupid GP said last week, 'what you don't go out? why?' he made me feel so stupid.

I am way too scared to self medicate, so please don't judge me on that. I am terrified of medications. It took them a year to persuade me to try Mirtazapine for my anxiety, I have been on 15mg 2 years and am terrified of it still lol!

I feel alone an like i am letting my children down right now :-(

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30 Replies
HarryE profile image
HarryE

Yes, it could indeed be all due to your TSH being that high. I was desperately unwell at a level of 4. But you are not a failure, the system is.

I'm not judging you for being scared, we have all been there. But I'm sorry to say you might have to take action yourself, unless you can get somewhere with a doctor. You can't simply live your whole life like this.

I don't really think of thyroid replacement as a medication anyway, it is simply replacing what my body should do itself.

in reply to HarryE

Thank you so much.

I am worried sick why I feel so weak, fatigued and dizzy. I know this isn't my anxiety and it scares me a lot.

HarryE profile image
HarryE in reply to

It is because you are unwell. You are hypothyroid & need treatment.

in reply to HarryE

Can hypothyroidism really cause this? I keep panicking I will collapse and die :-( My anxiety has rocketed since these symptoms hit.

HarryE profile image
HarryE in reply to

Yes it can. It did to me. And lots of us.

You are not alone x

in reply to HarryE

Thank you xx

shaws profile image
shawsAdministrator in reply to

Undiagnosed hypothyroidism gives a multitude of clinical symptoms. There's about 300+ but many doctors only think there's one thing - the TSH - considering yours is 6+ it's high. This is an excerpt:

The various antidepressants with which she has been treated over the years did help some, but did not provide her with satisfactory improvement. The complete resolution that came within two weeks of weaning her antidepressant medication and beginning proper T3 therapy, was bittersweet. Of course, she was extremely pleased to feel normal again and to be able to see clearly that the symptom had a large physical component that predictably correlated with body temperature patterns. But at the same time, she came to the realization that 25 years of her life had been spent suffering from a debilitating, unrecognized, and easily treated condition.

wilsonssyndrome.com/depress...

marsaday profile image
marsaday

You are having a tough time, but there really is little anyone can do. The only person who can be of help is you. I just do not understand why you would be frightened to try some thyroid hormone. It sounds like you are physically breaking down. I have had the same thing happen to me and when i found out the problem MAY be solved by thyroid hormones i jumped at the chance not to feel so shit.

The hormones were exactly what i needed and my FT4 was 12 and my TSH was 3.3. So there was no way a doctor was going to help me out. According to him my thyroid was FINE !!!!

Do you have a lot of spare money ?? If you do you can buy treatment no problem. The best people to see will be the Hertoghue clinic in Belgium. I think they charge about £1500 for the full blood tests and a full consultation. There is Dr Barry Peatfield in the uk who charges £160 for a consultation approx. He can't prescribe the hormones, but he will tell you want you need. In all honesty he is going to say what everyone on here has been saying. You need to start some thyroid hormone replacement.

There are three types to use, T4, T3 and natural thyroid hormones which contain T4 and T3. The NHS really only supplies T4, but they can be pushed to give T3 or the natural if you are strong enough to make them.

The first starting point is T4 and you would buy some 50mcgs tablets and halve them so you start taking 25mcg. You can buy 25mcgs tablets, but it is cheaper to buy a bigger tablets and halve them yourself.

Take 25mcg per day for two weeks and see how you feel. This really is a tiny dose and a normal replacement dose for an adult is around 150mcg per day.

Your metabolism is not working at the moment. Everything is a struggle to get going. It all stems from thyroid hormones production. Stress can be a big factor in this, but is it the stress which has caused the thyroid to not work as well or has the fact the thyroid is not working as well caused more stress. This is the question we can't say at this moment.

High cholesterol is an old fashioned indicator thyroid is not working. Cholesterol is very important and good for us. We make our steroid hormones from cholesterol. Thyroid helps with the production of these steroid hormones and so forces the cholesterol to be used up. Your thyroid is low and so the cholesterol is not getting used up because of this and so is higher.

Can you tell people what you are wanting from these forums ? If you sit back and look at what you actually need this should help you move forward.

in reply to marsaday

I hate to think I am breaking down mentally :-( but I am highly anxious and low right now. I am very afraid of how weak I feel. I keep worrying if they took me into hospital I'd not cope as I am agoraphobic, it would be one long huge panic attack and I am scared they'd section me :-(

My anxiety was back on track but since this fatigue and dizziness my anxiety has rocketed and I feel awful.

Sorry I posted, I am just worried what's making me feel this ill because my GP said TSH alone is not an indicator of hypothyroidism so I am confused :-(

THanks for your help.

Julie

humanbean profile image
humanbean in reply to

I don't understand why you have such faith in your doctor. He is keeping you ill, doesn't believe a word you say, insults you, is mean, puts you down, treats you like a naughty child, and yet you swallow every word he says as if it comes straight from the mouth of God.

Your doctor is a fallible human being, not a god. He cares more about sticking to guidelines than he does about getting his patients well, which is understandable since he has bills to pay and wants to keep his job. But it isn't helpful for you.

I suffered terrible depression and anxiety. But since I started repairing my nutritional deficiencies, went gluten-free, and started treating my thyroid, my anxiety and depression have diminished by 80%.

You can do these things too, and can make yourself better. You can only be forced to carry on suffering by the medical profession if you agree to it. So refuse.

Treat your low nutrients for a start. Supplements are easy. Then see how things go. But don't agree to be ill any more. Fight to be well instead.

shaws profile image
shawsAdministrator in reply to

It's confusing. One doctor says TSH alone is the indicator. The other that it isn't but refuses to take notice of the clinical symptoms the patient is having

I am confused - everybody is confused by the doctor refusing to treat.

Angel_of_the_North profile image
Angel_of_the_North in reply to shaws

Well, since TSH drops both after eating and in the afternoon, obviously the test done at home after lunch would look better - perhaps that's why he came out - kind, perhaps; effective, no. Both your morning tests were bad; the last one over range. I'd ask for trial of levo, or go private (or see another GP with a clue). What's the point of a range if they won't treat when you are outside it and symptomatic?

in reply to Angel_of_the_North

I agree but my nice gp has said he can't treat until it hits 10 despite me being symptomatic.

HarryE profile image
HarryE in reply to

In that case he isn't nice. He's sadistic

shaws profile image
shawsAdministrator in reply to

He's following the rules to the letter, you can always buy your own and tell him what you're doing as you cannot stand being so unwell and show him this list and ask if he can also get the other tests done too. Also tell him that Thyroiduk.org is the NHS Choices for info and support for us to recover our health.

Tell him you are suffering - he wouldn't let his wife (would he) be without essential hormones.

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

butterfly1408 profile image
butterfly1408 in reply to

Don't be sorry for posting Julie! That's what we are here for and Please, please don't ever feel bad for asking for help!

I know how awful anxiety is and how alone and scared it makes you feel, it was anxiety and panic attacks that led to my diagnosis of hashimotos. My TSH was in the 80's but even now if it creeps back up to around 4 I feel awful, to be honest almost as bad as I did when it was in the 80s. My Dr told me at the time that hypothyroidism does not cause anxiety, well he was wrong, it absolutely can, and if you have hashimotos then your levels will fluctuate as do mine. I feel ok(ish)today but have recently had a very rough few days again with all the excess adrenaline, jitters and anxiety. I really hope you will find a sympathetic GP to help you and I do feel a trial of thyroid medication could really help from what you have written. Big hug to you xx

in reply to butterfly1408

Thank you so much.

Apparently don't have hashimotos so my gp said my tsh does not indicate hypothyroidism 😯 I am so confused as it's 6.54 above the range of 5.5. I feel terrible with fatigue every day and I've said since the summer I'm anxious due to how fatigued I am. I don't know why but it automatically seemed to trigger my high anxiety again.

Thank you for your kindness x

Angel_of_the_North profile image
Angel_of_the_North in reply to butterfly1408

Oh yes he can treat you now ... if he wants to and is prepared to take responsibility. Your TSH may never reach 10 - you could die first. I'd go private or demand an endo referral - get the list of decent doctors and endos from Louise.

in reply to Angel_of_the_North

I suffer from anxiety and am scared I could die feeling like this.

The blue horizon doctor commented that my tsh alone could be from non thyroid illness or medication? But to re test in 3 months.

shaws profile image
shawsAdministrator

I am so very sorry for you. Many GPs will prescribe with a TSH of around 5 with symptoms. Your GP sounds like a masochist and following the guidelines like a zombie, i.e. YOU MUST HAVE A TSH OF 10 before we will prescribe.

It is very difficult for you to cope with all these crises all at once. To deal with sick children when you yourself are unwell and being given the run-around by your doctor. If you can make an appointment with the 'nice' doctor I don't know if he can over-ride the other and give you levothyroxine.

According to this link you will see your TSH is way above and should be treated. If it is refused I cannot see any way out but if you buy your own levothyroxine. It isn't a drug it is a hormone replacement.We women need hormone replacements.

A doctor who doesn't know clinical symptoms, like higher cholesterol, anxiety, weepy, and commented

"and spoke to me like dirt and told me 'we don't know what to do with people like you Julie'. He should resign his licence.

This below will open you eyes. Your doctor wont pay attention and there's thousands like you around who will not be given hormones till their TSH is 10.

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

I've just looked at Mirtazapine and it is an anti-depressant - has he ever done a Free T3 blood test? Probably not. Ask the nice doctor and if it is low it will probably be better for you to be given some T3 instead of the anti-d. They give every one anti-d's (some do need them of course) but I think it's a 'I'm stumped' prescription as they cannot suss out what's really wrong with the patient.

Also take to the nice doctor the chart from Thyroiduk.org of the true interpretations of the blood test.

in reply to shaws

Thank you so much.

My ft3 result was fine. I will find the result in a second and let you know but I think it was 5.7 on the bh results.

He's that relevant to the mirtazapine? Sorry not sure. I've been on mirtazapine 2 years when my anxiety began. Long before all of this. I wasn't sleeping or eating due to anxiety. I'd lost my nan suddenly and my brother attacked my husband and then me so I cut family out. He has a borderline personality disorder and is violent. So my head was so anxious from it all. That was 2012. Went on mirt Dec 2013.

The horrible gp said he won't even re test my thyroid saying there's no evidence I am hypothyroid.

shaws profile image
shawsAdministrator in reply to

If he's stubborn you wont change his mind, even by showing him the following:

thyroiduk.org.uk/tuk/about_...

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

in reply to shaws

I attached a list of symptoms and ticked which applies I had over half. I attached this, my 2 page letter explaining how bad I felt and my bh results. When he called he said 'yes I received your letter. All 7 pages'. Made me feel awful.

shaws profile image
shawsAdministrator in reply to

No, he should feel awful. Something is not right when a patient keeps popping into your surgery with different symptoms but they probably believe you don't have much to think about except yourself. They've no idea how unwell we can be.

in reply to shaws

I've had anxiety in the past so he assumes I'm just anxious.

shaws profile image
shawsAdministrator in reply to

If I hadn't been anxious before, I would after I consulted with him :)

in reply to shaws

Lol I certainly did 😃

faith63 profile image
faith63

Have you been tested for hashimotos?

in reply to faith63

Yes my latest Blue horizon test tested 2 antibodies and both fine.

faith63 profile image
faith63 in reply to

it is possible you have food sensitivities..is their a Functional Medicine doctor that you could see? I have had terrible anxiety, environmental allergies, acid reflux, irritable bowel, all sorts of female problems..i have just found out that i have a leaky gut, neurotransmitters are not working properly, leaving me with anxiety and no way of calming down, food sensitivities and low cortisol.. i think a functional doctor can help you.

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