Private test ordered. Sat crying.

Blue Horizon thyroid test ordered, nervous about doing it (so silly) but can't wait to get it over with and find out what's going on.

I have been sat crying today, this is making my anxiety spiral and I worry every day I will collapse and end up in hospital but how could i if I have agoraphobia due to how fatigued and weak i feel. Since last May I have had awful fatigue and muscle weakness. My GP ran bloods but said my symptoms were just anxiety. Then last month dizziness/vertigo started, I have never had this before and again told stress and anxiety. I had anxiety a few years but it's much worse now and it's down to how weak and fatigued I feel. My GP seems to think the anxiety causes how I feel but I have told him no, I was out living my life again and happy (I previously struggled with agoraphobia and anxiety). Now the fatigue, brain fog, weak legs (when I walk down stairs they shake in my thighs) and dizziness is causing me to feel very anxious and i am too scared to go out alone or even with hubby I don't get out much now. I last saw my GP last month and he repeated my bloods. I have just been left feeling like this.

I just took my children to school, came home and sobbed. I feel so anxious because of how weak and fatigued I feel. I am afraid, afraid i will collapse and be taken into hospital, scared of what;s causing this, could my results really make me feel like this?? Surely my results are not bad enough I'd feel this fatigued and weak. When the dizziness began last month I was terrified it was a brain tumour but my GP did tests and said it wasn't at all, it was all the stress and anxiety I was feeling but I told him it was the fatigue and weakness making me so anxious!!

My results in August were taken at 9am after porridge.

TSH 5.35 (0.35-5.5)

FT4 11 (7.0-17)

December 2015 taken at 1pm after 2 meals.

TSH 2.96

FT4 10.2

Are my results that bad I'd be feeling this ill? I am sat crying as I am so anxious all the time and low about how suddenly my world has become so small and I can't even go out because of how weak and exhausted I feel. I take the kids to school then come home, do light housework then sit crying because I feel so weak after just hoovering downstairs or putting washing on. A year ago I was out running, doing yoga and intense workouts. Why is my life like this So sorry to post again, I don't mean to be a pest.

Julie

[puncturedbicycle]

Yeah, you can feel pretty bad with these results. I had terrible anxiety when I was diagnosed and now I know this happens when my t4 falls (I once was weaning myself off levo and it all came screaming back). Your t4 is pretty low. Is your gp refusing to prescribe or are you on treatment?

[Hidden in reply to puncturedbicycle]

My GP says I am fine. He doesn't think there is anything wrong as I am within range.

[puncturedbicycle in reply to Hidden]

I think you may need to find another gp who will acknowledge that some people don't feel well with a higher tsh. You may need it to be 1 or under. Has he done antibody tests? If a gp is on the fence (if your results are in range but close to the upper end) sometimes they will make a decision based on antibodies.

[Hidden in reply to puncturedbicycle]

I asked him to test antibodies last month but he said unless TSH over the range he couldn't. I have a family history too.

[puncturedbicycle in reply to Hidden]

Some doctors might suggest if you had raised antibodies they'd do a trial of levo but it sounds like even if your antibodies were raised he'd say your tsh wasn't high enough. If he is going to be obstructive at every turn you might need a new gp.

I'd suggest getting a private antibody test but I doubt he'd treat you until that magic moment when both your tsh and antibodies are raised and t3/t4 below range etc. He sounds very belt and braces.

[Hidden in reply to puncturedbicycle]

He is. I have tried 3 GPs and all have said the same thing and say my results are normal.

[puncturedbicycle in reply to Hidden]

Have you had a read of the 'can't get diagnosed' threads? Sometimes it just takes persistence. Maybe ask gp in light of your family history how often they'll be willing to do blood tests before they inevitably 'discover' your raised (above range) tsh and decide to treat you.

Have they tested your vit d, folate, ferritin, iron, b12 etc?

Have a read and see if anything here can help you: thyroiduk.org.uk/tuk/about_...

Especially important are the bits that tell you where the gp has discretion in fudging the treatment before the numbers are 100% out of range (for example when tsh is just above range but not yet 10). It's a little out of date (the US range has been raised again) but useful.

[Hidden in reply to puncturedbicycle]

I will do a search for them, thank you.

I am allowed a yearly blood test, nothing more he said because now the TSH is 2.95 and T4 10.2 he says I am fine.. The TSH has gone down so he thinks all is fine and he said time of day it was taken isn't relevant.

Yes i had all that tested in August and December. Ferritin was 15 now up to 31 after supplementing. B12 was 212 now 501 thanks to supplementing it myself. Folate is 19.

[puncturedbicycle in reply to Hidden]

So give yourself a pat on the back. You're on top of it, you just need your gp to play ball. Sorry, I see now you have ordered your private test (lost sight of that in my answer), so if you do the test very early in the morning, fingers crossed, you might hit paydirt.

Did you know that BH offer a fingerprick tft? I just found out. It's cheaper and more convenient (for me anyway) than arranging the blood draw.

Hang in there. xx

[Hidden in reply to puncturedbicycle]

Yes that's the test I am going to do. The full panel of bloods. I can't imagine my GP will change his mind but at least I know my accurate TSH and if I have hashimotos.

Thanks again you've been very kind xxx

[puncturedbicycle in reply to Hidden]

No worries, I was in a similar situation myself. Your tsh will fluctuate a lot so all you have to do is catch it at a time when it is raised. Mine was 31 when diagnosed, but next time it was tested (w/o meds) it was under 5.

I feel for you. I don't feel excellent now, but I was an absolute mess before I was diagnosed.

[Hidden in reply to puncturedbicycle]

Wow really. Did you find morning fasted tests you caught it high? Do you have hashimotos?

Did you feel ill before diagnosed? Can I ask how it made you feel?

[puncturedbicycle in reply to Hidden]

It had been a while since I'd been tested so I wasn't really angling for a diagnosis. I didn't even know it was hard to get diagnosed, I just lucked out (you understand, everything is relative - it isn't lucky to be ill, but I see now I was lucky they caught me on that day). So I can't remember the conditions around the blood draw or I'd share them with you.

Only months before I'd been a member of a gym and had done months of challenging boot-camp-style fitness classes, started training as a counsellor, moved house etc, and suddenly I just felt like I was moving through mud. I was exhausted, had mad carb cravings and was so cold-intolerant I felt sick to my stomach in a draught. I had bought a pair of fingerless gloves to wear at home because my hands were cold and achy and I had trouble lifting the kettle because they were stiff and sore (prob due to what I learned was a severe vit d deficiency). Eventually lost a lot of hair and gained weight which all continued even on levo.

[Hidden in reply to puncturedbicycle]

Sounds similar. Every day I feel exhausted, no matter how much I sleep. Dizzy and vertigo symptoms at times. I feel really weak in my thighs and they shake when i walk downstairs sometimes. I cry alot and feel anxious. I am so cold and wear a hat indoors

[puncturedbicycle in reply to Hidden]

Oh god I forgot to mention the hair-raising anxiety. Just cringing, hand-wringing, shaking anxiety for no reason.

[Hidden in reply to puncturedbicycle]

I had an anxiety disorder anyway but it was much better, now it's through the roof. I get anxious going out, anxious at home, scared to socialise. I just feel anxious all the time about everything it's just not like me x

[Hidden in reply to puncturedbicycle]

Thank you for all your advice

[puncturedbicycle in reply to Hidden]

My pleasure. Good luck!

[puncturedbicycle in reply to Hidden]

One other thought, you could ask gp why you feel so unwell and how to treat your symptoms. If gp has to account for how you feel that could focus his thoughts. Have they done hormone testing? Could you be perimenopausal? That has similar symptoms. But gp can't very well say 'It's not your thyroid' and send you home. If not thyroid, what is it that is making you feel so unwell out of the blue?

[Hidden in reply to puncturedbicycle]

I told them how tired I was in August, ran tests then said it must just be my anxiety. That was it. It's now got much worse. I am doing my private test next week and if they are ok then I am going to have to ask my GP why I feel so bad. Something is not right for me to feel this exhausted and weak.

[puncturedbicycle in reply to Hidden]

Well if it is anxiety then let them refer you for cbt, a psychiatrist or counselling. Just saying 'it's anxiety' is a red herring. Anxiety is a symptom of a lot of different things. It's not a get out of jail free card for your gp! They make me so cross with this anxiety malarkey, like that's where their role ends.

[Hidden in reply to puncturedbicycle]

They put me on meds for anxiety 3 years ago which do nothing. Worried now they've caused my thyroid problems but in 2013 before the meds for anxiety my TSG was 4.6 and T4 10.6 so I guess it wasnt' meds related as they weren't healthy numbers back then.

I have had CBT, I had to pay because the NHS had an 18 month wait xx

[puncturedbicycle in reply to Hidden]

Bless you, you've tried everything. Let them do the heavy lifting this time. Let them try to diagnose and solve the problem. If they get nowhere at least you'll be narrowing down the causes until thyroid looks more and more obvious and maybe your gp will eventually be swayed.

Good luck! xx

[Hidden in reply to puncturedbicycle]

I hope these results do come back as proof then he can stop blaming my anxiety. i am anxious because I feel so sick and tired, grrr!

Thank you xxxx

[Angel_of_the_North]

Your T4 is really low in range (and falling), that means your T3 (the active hormone you need to feel well) is probably even lower in range. Next time you have a blood test, make sure it is FASTING and first thing in the morning, as many doctors don't seem to know that TSH falls during the day and after eating.

[Hidden in reply to Angel_of_the_North]

Thank you. Is it likely then that my TSH is higher than in August when it was 5.35 at 9am after breakfast? In December it was 2.96 and I'd had 2 meals. My GP said fact my TSH is now down I am fine and FT4 range here is 7-17 so I have no chance of him thinking it's low at 10.2

[Hidden]

The fasting blood test definitely made all the difference in getting me a diagnosis. I had 3 blood tests last year where the TSH results were around 4, which is within range here. Then after reading the information here I had a fasting test last week and my TSH was 5.8 (range goes into 4.8) and my GP agreed to trying Levothyroxine and arranging for antibody testing too. Hopefully a fasting test will make all the difference for you too.

[Hidden in reply to Hidden]

Glad you are getting closer to a diagnosis. I hope my results prove to my GP that I am not imagining all this.

Did you feel ill when your TSH was 5.8? How was your T4?

Thank you.

[Hidden in reply to Hidden]

I've been feeling ill for 18 months, my T4 has always been in range, though right at the bottom. The most recent T4 result was 12.2, but the range for the lab here is 11.8-22 so I was low in range. It seems crazy that the combination of high TSH and low T4 doesn't automatically lead to further investigation even when "within range".

[greygoose]

I think I'd be pretty bad with those results, yes. But, have you been tested for antibodies? That might explain the results jumping around like that.

And, have you been tested for ferritin and vit B12? If those two are low, that might explain at least some of your symptoms.

[Hidden in reply to greygoose]

Hello.

Yes in August my ferritin was 15 and B12 212, in December ferritin 31 and B12 501. I supplemented.

I am having a private Blue Horizon test next week and they test antibodies.

[greygoose in reply to Hidden]

OK, that's good. But, keep on with the supplementing. Ferritin is still a bit low, and optimal for B12 is 1000. Also, it will take a while for those suppléments to take effect.

[MariLiz]

Definitely get B12, ferritin, folate and VitD levels tested. These are often low with thyroid problems, and can make you feel just as you describe! I know, I've been there! Good luck with getting help and beginning to feel better. MariLiz x

[Hidden in reply to MariLiz]

Thank you. I had them tested in August and by December they had risen.

[humanbean]

You mentioned in one of your posts above that your GP said time of day makes no difference to TSH. He's wrong. You might like to show him this paper :

press.endocrine.org/doi/pdf...

Look at the graphs on page 2. TSH and Free T3 both have a circadian rhythm. TSH is highest in the middle of the night and lowest in the afternoon. In order to get the highest TSH possible we need to get blood drawn as early in the day as possible, fast (apart from drinking water) for 10 - 12 hours before the blood draw, and don't take meds for 24 hours before.

[Hidden in reply to humanbean]

Thanks. Does this anyone can have a high tsh in the morning?

[humanbean in reply to Hidden]

No. Someone who is healthy may have a TSH which varies throughout the day and night from a minimum of 0.8 up to a maximum of 1.9 (for example). According to the paper I linked the amount of variation varies from person to person, so some could have much greater variation, others much less.

Someone who is hypo may vary from a minimum of 4.1 up to a maximum of 5.6, or possibly 7.3 up to 9.6, or ...

All my numbers are made up. But I'm sure you get the idea.

[Hidden in reply to humanbean]

Thank you 😊 I thought that would be it. Thanks for explaining.

[Mojoerising]

Sorry hear u so low n feeling on u own been there wear everything put down anxiety mental health. When I went how u saying was my adrenal s, low cortisol I had go private see endo then one came up on NHS, n still THRY wouldn't say all symptoms wear down to it. Have hope if anything shows at least u have ammunition to deal it if doesn't Try another route xxxxx so hard n is so LONLEY no one gets it less THRY felt it them self's. what don't kill us makes us stronger, might not feel it but u fighting the now by looking for answers credits wear due, don't be so hard u self, no man a island xxx