To ask for your thyroid issue stories and help?

[Snowflakes1122]

I’m desperately looking for advice from anyone who has been in my shoes.

I’m convinced I have a thyroid issue.

I have

Hair loss, foggy memory, feel miserable and have no motivation, heavy periods, I’m exhausted all the time, I feel like my brain is running slowly too. I get painful numb arms when I’m sat down or in bed too. The hair loss is the one I’m struggling with the most
I need to pluck up the courage to go to the doctor, and just wondered what others experiences were with this? Were your doctors sympathetic or dismissive? What did they do?
I’m so fed up of feeling rubbish. I want my life back

Hit & miss. Saw a selection of GPs over the years and had blood tests that didn't show a thing. Steadily feeling crappier and crappier.

Eventually saw a locum when I'd developed a horrible infection in my nose that wouldn't shift. Locum ticked a few boxes on the blood test form that I hadn't seen ticked before. The very next day my GP called me and asked me to come in on the same day, I got a prescription for 50mg levothyroxine.

I really wish I'd asked a few more questions but I was a bit blindsided.

Have also discovered recently that I have issues with dairy, giving it up has meant that an awful lot of my symptoms (that I thought were thyroid related) have vanished. No more migraines, heavy periods, short cycles or bloating. Wish I'd realised earlier.

I didn't have any menstrual problems with my underactive thyroid, or pains in my arms like you have described OP, although I did get pins and needles which the GP thought was carpal tunnel syndrome. I didn't have hair loss either.

I had some symptoms you haven't mentioned though: feeling cold all the time, very dry skin, low mood and weight gain.

My GP was initially very dismissive, despite the fact that my mother and maternal aunts all had hypothyriodism. It was only after I told him that my brother, who is 10 years younger, had been diagnosed too that he reluctantly agreed to test me. (By this time, I'd been on anti-depressants for years and had been referred to a consultant for my supposed carpal tunnel syndrome).

When the results came back, he was very apologetic. He started me off on 50mg of levothyroxine, which eased my symptoms somewhat, but I ended up taking 200mg.

And I cancelled my appointment with the hand surgeon - the numbness and tingling stopped as soon as they got my dose right.

I still have really dry skin though.

My dsis was diagnosed in 1988. Her medication is reviewed regularly with an annual blood test. She doesn't eat a lot of dairy, she uses no milk. I wasn't sure if you were on medication, if you aren't and get prescribed it is one of the conditions that entitle you to free prescriptions.

She gets periods of lethargy and hasn't solved the problem of hair loss.

My GP spotted it before I did. I'd put on some weight, quite tired but post baby 2 so didn't think much of it. One thing I remember is my muscles tiring really easily, like my arm would be too tired to brush my teeth. I was at the GP for something else & she noticed a goitre on my neck & suggested I have a blood test.

Diagnosed underactive in June. Exactly the same symptoms as you. GP was not dismissive. Started on thyroxine, gradual build up. Periods are down to 2 days and very light per month. Still struggling with weight, and occasional lethargy but they are still reviewing my meds.

Thanks for replies. I will have to see my GP. Just hoping I get someone who listens and doesn’t just dismiss it.

Yes, my weight is also an issue. I’m not overweight, but he’s ier than I used to be. Can’t shift it

I had pretty much all of these. My GP said my results were normal and wouldn't give me any meds. I went through private health insurance and they retested, said I was symptomatic and gave me Levothyroxine.

It didn't help. I felt good for the first few days and then I got more symptoms. I was taken off them after three weeks because they were making my eyes go funny and they have a history of permanently damaging eyesight.

I've got a lot of scans and follow up appointments now because it's dangerous to start and stop taking them but they're doing more harm than good. I've been off them for a month or so now.

I hate to say it because I never believed it for a second but the only thing that has really helped so far was forcing myself to be more active, go for walks and the gym. It's relieved a lot of my symptoms. Not all of them, but I do feel better overall.

Your symptoms sound very similar to what I had - especially the hair loss. Are your eyebrows vanishing at the outer edges too?

I said to the Dr I thought I might have a thyroid problem because of all these symptoms - he said I sounded like a pretty classic case and that he'd get various bloods run to check, but also to eliminate any other possible causes.

Blood tests showed me very underactive, Dr started me on treatment and it was literally that easy!

How old are you? Could it be peri menopause. Similar symptoms.

I was lucky in a way. My mum has an under active thyroid

I have Hashimoto’s thyroiditis. It’s an auto immune disorder where my body is slowly killing off my thyroid

I was dismissed for years with similar symptoms. Got a private test done online (finger prick). I took that to the doc and then they listened and put me on levothyroxine.

Sorry, meant to that they test showed I had hashimotos.

I put on 3 stone over 5 months, dreadful joint pains (ended up seeing a physio) my skin went very rough and my hair thin, but my get up and go just went.
I was getting very emotional as people kept commenting on my weight, and giving me advice about what I should be eating!
I was eating 800cals a day and losing no weight and mentioned it to the doctor whilst having a smear test.
I had a blood test and was put on 150 mg of Thyroxine straight away.
This was 20 odd years ago, and I think nowadays they are more on the ball about testing for this.

Trouble is it doesn't always show up on tests. I was 32 before it was discovered and they think it was life long. I was v ill by this stage.
Now late 40s and thyroxine only really takes the edge off. Need to lose about 5-6 stone. Of course I realise it's harder when older too(am not menopausal)
Best thing I did..saw a nutritionist when first diagnosed. She was underactive to and a good advert for her work.
In recent year..cutting down on dairy (and completely when have period) has been lifechanging, I don't know if that's directly linked to thyroid though. I had diarrhoa so severe I couldn't leave house when on my period (always worse then) . Life has massively improved since. Have been vegetarian for 32 yrs and I don't think that's helped as my diet was massively lacking in protein. I won't ever go back to meat but I've found ways to introduce protein
The biggest issue is always being cold , and the weight. Yes I can lose it but only in extreme diet eg four shakes a day kind of diet. I have a very active physical job and I only eat twice a day. But I'm 5ft 9 and probably about 18 stone right now (dare not weigh but I know I'm not far off this)
Going to save up and see a thyroid specialist which I should have done years ago

Agree with Flev.. losing outer brows is usually one of the first indicators. I have hardly any brows now and nothing made them grow back.
My skin is oily but I get dry patches. I suspect the oil is to compensate for dryness or so I've been told.. I think it's more that my hormones are out of whack.
It's cost my my fertility too as I was diagnosed too late to do anything about it and the damage was done

Also dry eyes.. always irritated, constantly watering... my friend who is underactive has exactly the same.. we both have red patches around our eyes where makeup and tears run...annoying as I can't even perk myself up with makeup..as it just doesn't last , on my eyes anyway

I tick every box for the symptoms of an underactive thyroid but because my blood tests say I am almost overactive, they won’t do anything.

I was formally diagnosed 2 and a half years ago in the UK but I had symptoms since the birth of my 1st DC 20 years prior. This is not unusual from what I've read.

We lived in Canada 12 years ago where I had a goitre and was started on medication despite bloods being normal as they treat symptoms over there rather than waiting for it to show up in bloods unlike the UK. Unfortunately we came back and my GP refused to prescribe any more as blood tests were in normal range. I actually said I'd sign a disclaimer in case I had ill effects if they would just let me put me back on medication. It wasn't until TSH showed up as 16 when it should be below 5 (optimal is below 2 for most people) that they finally put me on it.

I wish I'd paid to be seen privately long before then

I've just shot back up to TSH of 7 after feeling crap for months (GP was going to make me wait until June for annual blood check) so dose has just gone up from 75-100mg.

I find strict healthful diet (gluten and dairy free ideally), DAILY exercise vigorous enough to make me sweat, min 8 hours sleep and a good multi vit with high % rda of b vitamins, selenium and zinc is the only thing that keeps me not feeling like a zombie even with medication, of course that takes a lot of discipline!

I'm 57 and have just been diagnosed after a routine blood test...but I hadn't noticed any symptoms. So I don't know when it started. Am I going to get thin and lively now I've started on the medication??

Neckless, everyone's different but my opinion...nope, it just takes the edge off. It made my immune system healthier as I'd got very sick with bloodshot eyes and non stop flu. So all that changed. I was less likely to catch things.
Weight and energy.. no. I did that myself later by joining gym and changing diet

I've just signed up to Thriva. I'm worried about b12 rather than thyroid but (as I have another autoimmune condition that means I'm more likely to get thyroid issues) i thought I'd get that checked at the same time.

It's a subscription service but you can cancel at any time. The first test is half price at the moment and you can select what you'd like to check from their list. I've gone for iron, cholesterol, b12, folate and blood glucose plus tsh and t3. Depending on how my results come back I'll chose what to test and how often. I'm a bit nervous about doing the finger prick but a friend has offered to help if I mess it up!

If you're interested then pm me for a referral link- you get your first test half price and I get a discount off my next test. I'm planning on doing my finger prick on Monday or Tuesday so happy to answer questions about it once I've done it.

My hypothyroidism was found incidentally, but in hindsight I had alot of symptoms (depression, dry skin, dry hair and nails, brain fog, hair loss). My TSH was 7 and my GP started me on levothyroxine.

I've had tests every 3-6 months then to monitor it and increase the dose when needed.

I had to push for 4 years even to get a test , then I went on thyroxine . Unfortunately I felt worse so I did my research through thyroid uk and went on to ndt which I have to pay for . My advice would be do a full thyroid function test through medichecks or blue horizon . It is only a home finger print check and then you can go on the thyroid uk who will help you analyse the test and go into your doctors knowing what you are talking about . Just having a TSH test is not enough you need a full test of t4 t3 etc and antibodies . I recently asked my doctor if she could do a private prescription of NDT ( natural hormones ) and I had to explain the brands the nhs could prescribe as she had never heard of them . That’s why I recommend you do your research first .

I've got a TSH of 8 at the moment. Its been slowly getting higher for a year now. GP does nothing but retest every 6 weeks and 'watch and wait'. I feel like shit. Freezing cold hands, feet and nose. Slightest exercise such as hoovering causes my head to pour out sweat, whilst the rest of me shivers. I'm getting fatter by the week, despite eating no more than 1,000 calories a day and starving myself whenever possible.

After four useless GPs, the fifth one found I had an underactive thyroid. At the time of diagnosis I could barely get out of bed, couldn't eat as I had zero appetite, didn't even care that I was ill because I just wanted to sleep, hair fell out, anaemia, no eyebrows, hair falling out, felt like I'd done a full day in the gym the day before, could be in the middle of a sentence and didn't know what I was talking about, couldn't remember anything and slept about 18 hours a day (Had given up work at this point). I actually thought I was dying but felt totally detached and had no feeling about it either way. I even got to the point of wondering how I could be involved in a serious accident that only hurt me so I could lie asleep in a hospital bed and not feel guilty on my husband.

The wonderful fifth doctor put me straight on thyroxine and looked after me for many years. I felt a million times better but have never felt completely 'normal'.

My advise to you, get yourself completely educated, know your own personal blood levels (for TSH, FT3, FT4 etc.). FB has some really good groups with very knowledgeable people. My levels look too low on paper but that's when i feel at my best, i won't necessarily be allowed to keep at these levels depending on the GP. It affects all sorts, your ability to absorb iron, your eyes and loads more, have a good read.

Be prepared to go to your GP armed with credible evidence and don't be afraid to ask questions, question their judgement and fight your corner. Unfortunately GPs don't seem to know enough about hypothyroidism.

Like others, I don't eat much dairy, only cheese occasionally, this made a huge difference. Research how to take your thyroxine, at least an hour before or after food and most drinks except water so that it can be absorbed correctly in the gut and take with a full glass of water. I take mine just before bed, I found switching from taking it in a morning made such a huge difference to me, others doing this got insomnia, everyone is different. Face the fact that you are on medication for life, take your medication as directed, it is so important.

Good luck with your journey if this is hypothyroidism, at least if it is, the only way is up. I am 15 years down the line and wish I had advise at the beginning.