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Thyroid, chronic fatigue, migraines - help me interpret blood results

26 replies

thetwinkletoescollective · 28/03/2018 18:00

Hi there,
Long long story short:
I am recovering (if that is the word - this is my 21st day in bed) after what has been a horrendous mixture of headaches, migraines, extreme lead like fatigue, restless sleep, joint pain, inflamed and bloated body. However this is the 'crash' after 18 months or so of feeling crap more often than well.

I have had three blood tests so far. Two on the NHS which I don't know the results for yet and one private one because I wanted to check out my thyroid in a bit more detail . I want to rule things out properly as well as find out what is wrong with me.

Would anyone who knows about this be able to give me their thoughts?

Free T4 15.2 Range 11.0 - 26.0
TSH 0.98 Range 0.35 - 4.50
Free T3 4.0 Range 3.9 - 6.8

Many thanks

OP posts:
RubberJohnny · 28/03/2018 18:09

Your thyroid results are good. Not hypo or hyper. The TSH is nice and low. Those three figures together mean your pituitary is not calling for more thyroid hormone to be made. I'd say your thrroid isn't the cause of your probs.
Other tests you could ask for if not done already are vitamins D and b12. And your ferritin level. I'm sure they'll have done the ferritin anyway with what you've had already. Vitamin d and b12 should be in the higher quarter of most if not all lab ranges given.

If the above isn't good then it may be worth checking for a MTHFR gene mutation as that can affect how you can absorb methylated forms of nutrients like b12, so even if you are eating a plentiful dietary supply or you are supplementing, you cannot absorb it as your body isn't able to.

I did a dietectics degree so any help you need on interpreting I'd be happy to give

Walkingthroughawall · 28/03/2018 18:10

they're completely normal.

RubberJohnny · 28/03/2018 18:11

Also, I have hashimoto's so have looked at your results in depth and can't see much wrong thankfully. ( trust me, you don't want a thyroid prob!)

RubberJohnny · 28/03/2018 18:18

Also testing for lyme's and Epstein Barr might be worth Loki g into.

thetwinkletoescollective · 28/03/2018 20:06

Hello,

Thank you for looking at them RubberJonny and Walking through the wall.

Its quite a relief that its not my thyroid because my general diet is good and I only have to look at a cake and I put on weight!. As I have always wondered so this has been useful just to check it out and rule out.

I am not going back to the doctor for a week but hopefully there will be some clues into what is causing my body to be so inflamed.

I am doing what I know I can do which is drink a lot of water, eat regularly and lots of low inflammatory foods. Resting.

Thanks for your insight and your understanding RubberJonny. I will write all those things down and ask my doctor about them.

OP posts:
timeistight · 28/03/2018 20:06

TSH looks good, but on its own is not a reliable indicator of thyroid health.

FT4 and FT3 well into the bottom half of their respective reference ranges is the issue. You might like to post on the ThyroidUK forum on www.healthunlocked.com. You look to me as if you could have secondary hypothyroidism, where the TSH doesn't rise to take into account low levels of thyroid hormones.

Do your homework and then ask for a referral to an endocrinologist in accordance with the NICE guidelines. Beware of anyone who tells you you're all right because your TSH is 'normal'. That's only part of the picture.

Also get the following Co-factors tested: vitamin B12, vitamin D, folate, ferritin.

thetwinkletoescollective · 28/03/2018 20:08

Thank you Timeistight - I will do that.

OP posts:
Labradoodliedoodoo · 28/03/2018 20:09

B12

Ragusa · 28/03/2018 20:23

What other tests have you had, because 21 days in bed with no diagnosed illness is not normal Shock

thetwinkletoescollective · 28/03/2018 20:35

I have had two nhs blood tests (this is following two previous blood tests) and the one above.

I have migraines which absolute floor me but they have been coming more frequently. Actually this particular 'crash' its the only way I can describe it came following a period of five weeks when I felt really well. This was the first time in about 18 months when I really felt back to myself. I sort of thought that whatever was happening to cause them had gone, lifted, or righted itself within my body but NO.

However nothing out of the ordinary happened to 'trigger' it and I have found myself unable to move.

However I look really well. I think its been a bit of a problem in the past because I walk into the doctors and they take one look at me and they are like 'there's nothing wrong with her'. I also feel I could have made more of a noise about my symptoms over the past 18 months and have sort of put up with it..but its got a bit unmanageable now.

OP posts:
Usernom1234567890 · 28/03/2018 22:10

I agree re your thyroid function results-all is fine there.

Have you had B12& folate, Full Blood Count, Iron Stores (Ferritin), Vitamin D & Fasting blood glucose/Hb1ac bloods taken ?
If these come back normal, it may be worth asking to be tested for Lupus +/- Antiphospholipid syndrome- the joint pain, horrific migraines & fatigue can be symptoms. Lupus (Systemic) and Antiphospholipid syndrome often go together.

marmiteloversunite · 28/03/2018 22:16

Can I ask how old you are? My thyroid blood tests are always fine but I have similar symptoms. Falling asleep, loads of weight going on, migraines. Now thinking it might be peri-menopause. I'm 47.

timeistight · 28/03/2018 22:23

There's not really any such thing as 'fine' or 'normal' when it comes to thyroid and some other blood test results. You need to be where is right for you Nd for most people that would mean FT3 and FT4 a lot higher in range than OP's. A lot of people with results like hers will be told they have fibromyalgia, if their main symptom is pain, or CFS if their main symptom is fatigue, when actually they are fixable.

Five years ago I was one of those people, but with a lot of support from the online community, and very little from the NHS to be honest, I got my life back.

And to a PP, some people in OP's situation have been in bed for years, never mind three weeks waiting for someone to actually realise what is wrong with them and help.

thetwinkletoescollective · 29/03/2018 10:05

Hello,

I did think that my T3 was very low on the 'normal range' but when I looked that up the information I gathered was that was due to inflammation.

I am 39 Years old.

For context: Two years ago I could run 10K without training. Was superfit but have always needed to rest, from as long as I can remember.

18 months ago I started a very stressful job, which took me to working 5 days a week. I have two small children.
Within 6 weeks I had my first migraine..what I can say is preceeding it I went into this very unhealthy stop eating, work work work mode and was very stressed. I pushed through it through force of my will until January 2017 where I had my first mini crash. A precursor for what I am living in now.

There have been pockets of feeling well but they have always been followed by a migraine which then takes five days to recover from on average...so I am basically always feeling under the weather.

Here are my symptoms:
General day to day:
Tired all the time - have to push myself to get through everything
Am able to appear 'well' for pockets of time
Constant pain in my head - that I am so used to I get on with it even though it drains me
Come home from work and crawl into bed for an hour nap if I can
Usually feel my best about 9pm
IBS
Bloating (which goes when I exercise but invariably my head will get so bad I have to stop)
Painful and tender breasts all month long (same as above with bloating)

Migraine days:
Throbbing pain in left eye that feels almost unbarable
Eyes flicker even when shut
Whole body feels inflammed
'Sore' throat - that just comes and goes with the migraine
Can't get out of bed/need to sleep
Feel very lethargic
Cold
Can't read and sustain concentration
Feels like thoughts and words get stuck in my brain and there is a delay to finish sentences
My ability to cope with stress is not right. (I got a letter at work which where a reasonable response would be 'hmmmm' instead I got really upset and and I thought 'yep I am not well'.
My eyes change - can't explain it but my PA always knows by looking at me when I have a headache because of my eyes.

Recent 'crash':
All of the above with crushing fatigue like I have never experienced before
I have tired eyes (my eyes feel like they have pressure in them)
I have a constant dizzy/head feels like it is being crushed at the back
My stress response is off the chart - I came down the stairs and the outside light came on and my heart was beating ten to the dozen.
Wierd low blood sugar thing on Saturday where I was out for a walk and I basically came to a halt like a wind up toy runs out of energy. I had to have a sugary drink to come back to life.

I do not feel depressed. I don't have anything particularly stressful going on. I do like my job. Its settled down a lot. I work with supportive colleagues. I have a loving family.

I think I have written this list out as much for myself as anyone else.

OP posts:
thetwinkletoescollective · 29/03/2018 10:06

Wow. I didn't realise it was such a big message!

OP posts:
WhatsGoingOnEh · 29/03/2018 11:43

I could have written your post! I'm feeling similarly awful, without the migraines.

I hope you feel better really soon. 💐

furlinedsheepskinjacket · 29/03/2018 11:51

tbh all your symptoms fit with cfs - esp the 21 days in bed - and all blood tests with cfs usually come back as normal

hope you feel better soon x

thetwinkletoescollective · 29/03/2018 13:02

WhatsGoingOnEh - thanks for your message and I hope that you feel better too and furlinedsheepskinjacket - thank you too xx

OP posts:
TolchockLovelyInTheLitso · 29/03/2018 13:12

TSH is a useless measure. FT3 is low in range. Take a look at Stop The Thyroid Madness. The website looks like a dog's breakfast but the advice and book are sound.
You may find you need supplementation, but will get nowhere with NHS or even UK private doctors. As PP said, thyroid board on Health Unlocked will also be helpful as will FTPO Thyroid UK & Europe group on Facebook which follows STTM protocol.

timeistight · 29/03/2018 13:36

I'm at work now and have just put your results through my calculator. In a healthy person we are looking for FT4 to be in the top 25% of the reference range, or even a tad above it. Yours is only just out of the bottom 25%.

Conversion from FT4 to FT3, which is the active hormone, is a 1/1 process, so if you've not got enough T4 knocking around waiting to be converted, then you'll never have enough T3. Now I;ve done the calculation, I am even more convinced that this is secondary hypothyroidism, where the thyroid hormones are low, but the pituitary doesn't stimulate the thyroid to produce more, leaving you ill. It's not uncommon, but is not often recognised in primary care, where they just go off the TSH, although the NICE CKS does say "Suspect secondary hypothyroidism if the clinical features are suggestive and T4 is low without raised TSH. Be aware that in secondary hypothyroidism TSH may also be low, normal, or slightly elevated due to circulation of bio-inactive forms of TSH."

Do some reading, go back to your GP and ask for a referral to an endocrinologist. Do not be fobbed off with a diagnosis of CFS.

timeistight · 29/03/2018 13:37

Reading your list of symptoms again, it also looks like your adrenals have been propping you up and now suffering as well.

swingofthings · 29/03/2018 18:49

This is interesting reading. I have the same symptoms than you spare the headaches. It's been going on for 2 years. I believe my issue is B12 deficiency, however, I do have a history of fluctuating thyroid results. Normally, they only test for tsh that comes back normal but last year, they did a full test and although all values came back within range, my antibodies were way out. My GP at the time said that it only required watching. 3 months later, retested and it came back as borderline. Since then, I had two more blood tests but only tsh tested, which came back within the range again.

Have had your antibodies tested?

timeistight · 29/03/2018 19:54

Welcome to the world of thyroid mistreatment. With raised antibodies you have Hashimoto's Disease (auto-immune thyroiditis) and levels will fluctuate until the antibody attacks destroy your thyroid,

I don't have Hashis myself, but I believe the guidelines say you should be treated if you are symptomatic. Time to do some research and then go back and bang the table.

Imagine123 · 29/03/2018 20:54

I agree with others that you could have issues other than thyroid but wouldn't rule out your thyroid at least contributing to your issue. There is no normal with thyroid results. Your ft3 level would be too low for me to function. I need t4 and t3 treatment to get my ft3 level to at least 5.
Do you see an endocrinologist? Healthunlocked\thyroiduk helped me😊

Sophisticatedsarcasm · 29/03/2018 21:14

I have congenital hypothyroidism and not once in my 29 years have I ever seen the results. I was on the understanding you weren’t suppose to. Trust me having taken a tablet everyday for my whole life and for the foreseeable future you do not want a thyroid issue. It comes with an array of issues which can and will effect your everyday life. I have to have blood tests every 6 months and within the click of a finger and for no apparent reason your levels just change and then your medication dose gets changed. I get tested for diabetes quite often as apparently they are linked not too mention the weight caused by the medication which then they start referring you to a dietician.