I'm going to start by saying I'm in New Zealand. I'm at my wits end trying to convince doctors to keep testing me to find what could be wrong.
So far all blood tests (Rh factor, liver, thyroid etc) have come back normal but although I'm sure I'm classed as crazy and given a fibromyalgia diagnosis, I just *feel* it could be something to do with my thyroid. Honest answers welcomed. I'd love advice on whether to push my doc for more bloods (despite normal results) or just get over myself.
Test results:
Free T4 : 16 (normal range 10-20)
TSH: 0.63 (normal range 0.3 - 4.00). Previous results I was at 0.90
My main symptoms:
- Neck/shoulder aches & pain (100% of the time, gave up my desk job)
- Body over-reacting to gym workouts (unjustified DOMS)
- Weak/tremors in left arm
- Anxiety/depression (new for me)
- Heart, Atrial Fibrillation/tachycardia (hospitilised several times)
- Acid problems .. severe pains, not understanding what triggers it. I've never had acid before.
- tired, unmotivated (prob because I'm sick of being in pain)
- increase in optical migraines, (I get them when my body is stressed, seems my body is always stressed!)
- feeling of being out of control, don't understand my body or how it functions anymore, it throws unjustified symptoms at me continually.
Any real, brutal & honest opinions really appreciated. I'm sick of feeling crazy, not understanding myself and I'm withdrawing as I always seem to be the needy one. (can't sit on that hard seat, it'll mean days of painful neck etc). Thank you in advance!
Written by
nicnz
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Oh! I forgot to mention I had an ultrasound on my neck as I had little hard lumps on my glands. They said they were OK and some people have them. My thyroid looked fine in that same ultrasound.
You need more than the TSH and FT4 tested. You also need to know if the T4 is converting into the active hormone T3. Also have the anti-bodies tested - Anti-TPO and Anti-Tg.
Your results are not completely awful but it is better to have the full story.
You need the following tested - B12 - FERRITIN - FOLATE - VITD. Sounds as if they are all LOW and need to be optimal. B12 needs to be around 1000 to prevent cognitive decline and anything below 500 can produce neurological symptoms - see below.
When B12 is low the symptoms can mimic many of the Hypo ones too.
Low Iron and Anaemia can cause heart problems so it is vital to have an iron profile done. Magnesium ? Most of us are low so do read up on it and try it. It can be the vitamins and minerals that cause havoc in our bodies.
How is your diet ? Do you have any gut problems that could prevent GOOD absorption ?
When you have more results - post in a new post so it is not missed. What your Doc thinks is * normal * rarely will be - well as far as the folk here are concerned. For optimal health we need optimal results - and not just bumping along the bottom of the range
What a fabulous reply, thank you so much. I'm 43yrs old and into my health/wellness, I workout regularly (I used to be an absolute machine, but now I modify every single circuit and still suffer but moving feels better than sleeping in and the social side keeps me sane!). I eat well, I'm clued up on good foods, good fats, proteins, balanced eating etc.
I take a few gentle supps (magnesium). My iron is generally another one that is on the very low side of normal.
I'm going to take your advice on board and see the doc again. I'm afraid of being treated like a crazy person but your words about feeling better not just bumping along the low side of normal resonated with me. Thank you.
If you have low T3 - that is if your T4 is not converting from the storage hormone it is - into the ACTIVE hormone needed in every cell of your body - then too much exercise is not good. Over exertion uses up valuable supplies of T3 I have read
Hope your Doc is sympathetic to you wanting the FULL thyroid story - so few are it seems. Maybe they are better in NZ. I live in Crete so do not have a problem with testing as it is quite reasonable to have tests done privately. Hope it is the same for you too ....
Your symptoms sound similar to mine! I think that the above posters who talk about vitamins and gut absorption and not just focusing on the thyroid are your best bets. I was low in B12 last year (and probably for years before as it was not tested until I had a private blood test) and some of your symptoms appear to me (no medical qualification) to be similar to mine then.
I have been helped a lot by FAILSAFE eating which you being in New Zealand can get more help with (it is Australian based) but that is my personal genetics / environment and may not help you.
I also find it helps to keep a diary of food and environment and daily stresses even if it just reminds you that you don't always feel poorly. We are so used to the myth that humans can do anything (especially during the olympics!) when actually life seems to be more a case of muddling through and feeling fairly ok much of the time especially with chronic illness and having a plan can be helpful, good luck
Have to agree with Marz - you need your B12, vitamin D, ferritin and folates checked out and you want them to be towards the top of their ranges. Looking back I was 0.75 TSH and 16.9 T4 when I was discharged after having my Graves Disease treated.
I had dreadful muscle pains around my shoulders and neck then my hands became so weak I had to attach things to my electrical plugs because I didn't have enough grip to pull them out, my hands also hurt to touch and eventually I saw my GP who sent me to see a rheumatologist and I was found to have inflammatory arthritis. I was given stetoids for three months and anti athritic drugs too - the body pains just disappeared when I started the stetoids, I've finished them but still taking the DMARDS and the deep muscle pains in my shoulders and neck have stayed away thank goodness. It was like having toothache but in my neck and shoulders.
All my thyroid bloods were in a good place for me and I was eating the right things. Was also taking my five Brazil nuts every day, CoQ10, vitamin C, sublingual B12 because it started off low but just inside the lower limits and even though my doctors were happy I wanted to be nearer the top of the range.
I was having terrible acid reflux too and taking PPIs which I wasn't happy about in the long term. I decided to go totally gluten free - to see if I could reduce my antibodies - gave up my very bad chocolate and Diet Coke habit and the reflux stopped completely, I haven't had a PPI for over a year.
When you get any test results you need to get the lab ranges that were used. Get all the things Marz mentioned checked out and as she said post again.
If it's any help, before I was found to have Graves Disease I was that crazy person - I'd alienated myself from my friends - some friendships never recovered - i thought I was going completely off my head totally nuts - mentally ill - Alzheimer's etc. I felt really bad, I'm sure my docs thought I was a real hypochondriac. In fact I saw a doctor three months before I reached the stage I couldn't go on and thankfully saw someone who knew just what was wrong wth me - that woman said ' I was needing my holiday' Holiday my foot! I was seriously ill (but didn't really look too bad ) and I was needing to be taken seriously and properly treated.
I always think that when a doctor tells you your results are normal 'normal for who?' It could be you or it could be the lady five doors down. Your bodies are not the same. Good luck.
If you happen to live in Auckland there is a good integrative doctor MD who focuses on women's health only and thyroid is her specialty, she is based in the "Tonic Room" in Kingsland, PM me if you want her name (I don't think I am allowed to post here), but initials are NB.
Just another thought too is getting your saliva/cortisol levels tested. Some of your symptoms sound like anxiety/adrenal fatigue
Adrenal Fatigue is a stress-related condition that occurs when your adrenal glands, hypothalamus and pituitary gland (together – the HPA axis) are functioning below their optimal level. The adrenals perform several vital roles in maintaining your health. Most importantly, they control your body’s response to stress by releasing hormones like cortisol, DHEA and epinephrine, which are used to regulate your heart rate, immune system, energy storage and more.
Adrenal fatigue can wreak havoc with your life. In the more serious cases, the activity of the adrenal glands is so diminished that you may have difficulty getting out of bed for more than a few hours per day. With each increment of reduction in adrenal function, every organ and system in your body is more profoundly affected. Changes occur in your carbohydrate, protein and fat metabolism, fluid and electrolyte balance, heart and cardiovascular system, and even sex drive. Many other alterations take place at the biochemical and cellular levels in response to and to compensate for the decrease in adrenal hormones that occurs with adrenal fatigue.
Some symptoms. From verywell.com
excessive fatigue and exhaustion
non-refreshing sleep (you get sufficient hours of sleep, but wake fatigued)
overwhelmed by or unable to cope with stressors
feeling rundown or overwhelmed
craving salty and sweet foods
you feel most energetic in the evening
a feeling of not being restored after a full night's sleep or having sleep disturbances
low stamina, slow to recover from exercise
slow to recover from injury, illness or stress
difficulty concentrating, brain fog
poor digestion
low immune function
food or environmental allergies
premenstrual syndrome or difficulties that develop during menopause
Reading this again this morning, this sounds so much like me. I actually had some really rough years, specifically 2010 - 2014 were pretty awful with stress. I'll look further into this also - thank you!
only 2 comments to add.Where possible,substitute gentle exercise where possible(yoga,pilates,swimming,walking)tough stuff depletes the body of T3.I'm off to the gym for one of my yoga classes of the week.So good for the mood as well as the joints etc.Doesn't have to be for ever.
Secondly-do as much research as you can ON THIS SITE.Use the search box,read read read.
Thank you all so much for your comments. It's later in the day here and I've read once, tomorrow I'll read and process properly.
A few things, I have basic nutrition/sports qualifications so my dietary intake is good. I understand that doesn't mean it's being absorbed.
The help with blood tests, ideas for other problems etc is so much appreciated, you have no idea.
Exercise all hurts. Yoga made things worse, my body seemed to go into panic and the whole nervous system freaked out - it happens with massage, acupuncture, anything like that... but somehow if I can push through the circuits i have done 3x a week for years, at least I stay sane (it's my social contact too) although those girls are starting to think I'm too needy and getting sick of my "can't do that" attitude. I pay for it though.
The adrenal fatigue was interesting - I take an adrenal fatigue supp (natural much respected NZ brand). I take a few things I've hoped will help. Not much seems to.
Thanks again - I'm coming back to this tomorrow to read and absorb more.
oh! one more symptom - my sense of smell is crazy sensitive and sensitivity to light too. Smell is most annoying though.
I also have for the 2last years a super sensitive send of smell . Don't know why though but would be interested to find out. Not sensitive to light but can react to noise.
anxiety/depression/tired/unmotivated: these symptoms are why Kent Holtorf MD refers to T3 as "the best anti-depressant". So long as your doctor won't do the full thyroid panel (TSH/FT3/FT4/rT3/TPOAb/TGAb), you will not know if low T4->T3 conversion is what is causing your symptoms, and/or if you have Hashimoto's, which has its own set of symptoms.
I've just joined this group (and it's fantastic!) and I haven't introduced myself yet. However, there are too many coincidences to not reply to you. I too live in Auckland and happen to be reading a book by the late John C. Lowe called "The Metabolic Treatment of Fibromyalgia". He did a lot of research to show that many fibromyalgia patients actually have a thyroid disorder that is nearly impossible to detect via blood tests. I would recommend checking out the book, and his research as it sounds like it may pertain to you. He treated his patients with WTE/NDT or T3. After he died, his website was taken down, and a lot of his research is no longer available. I found that Google Scholar digs up more of his information than Google. I got my hands on a second-hand book from the US, and I'm happy to share any or all of the information from it with you.
I've just read info and reviews for this book - it looks great! I feel like I was brushed off and given a Fibromyalgia diagnosis to quieten me. I still feel like it could be more simple than that. Something is out of balance. It could be so easy if I could get the right tests done.
I might do some research and see if it perhaps pertains to me and take it to my doc. I have respect for my doctor but at the end of the day they are a 'Jack of all trades", they know very little about a lot of things. I just think she tests the TSH & T4 and calls it normal if within range.
Yes, he says something similar in the book about patients being labelled with fibromyalgia and brushed off. Keep in mind that if your thyroid hormones are off, then most likely your adrenals and sex hormones are also off. So, you may be right about it being a simple thing (lack of thyroid hormones or thyroid hormone resistance), but it can have a bit of a cascade effect. Finding a good doctor is a huge part of the battle. Good luck and let me know if you need any info from or about the book
Hi bunnywhisperer and nicnz - check out shaws - one of the Admins on this forum. She has endless links to John Lowe in her posts - which are so helpful.
I would recommend Auckland holistic in freemans bay. Initials. Doctors HS. Sensitivity to light is an adrenal fatigue symptom. Also lab tests in Auckland region only fund the testing of TPOab. Not the Anti thyroglobulin. And it's critical to get tested for both!
I've just been looking into ordering my own tests from LabTests. It might be a wise investment! So if I go to my doc again, the TSH and T4 are the only ones that are funded that she can refer me for?
I was diagnosed with Fibro in 2000 by a Private Consultant Rheumatologist. In 2005 I was diagnosed with Hashimotos and thyroid treatment commenced. I am now T3 only.
I would go for the private testing you have mentioned in another post. I would also add the 24 hour Saliva Testing for the Adrenals.
I have read that good amounts of VitC is good for supporting the adrenals - and everything else of course Fibro can often be linked to an Adrenal issue.
Wow. This article is fabulous. In reading this, I am actually textbook Adrenal maybe with a touch of thyroid in there but I mostly read down the adrenal column. Thank you so much!
Thank you everyone for your help, I was going to pluck up the courage to go back to my doctor but as mentioned, the blood tests (simple ones most needed) aren't funded here in NZ.
Instead I have self-referred to a city Endocrinologist that specialises in thyroid, adrenal and pituitary. At least I can present all my symptoms and probably get some real tests done with someone that actually really knows this stuff. I'll be seeing her privately (not public funding) so there will be more access to testing, even if it costs me! I have medical insurance (yay!).
After that visit and any relevant testing, if things still come back as normal, perhaps I can accept it's over-use syndrome or something and just try and deal with it. Although I'm really hoping for more of an answer. I just want to feel normal.
I'll update in a week or so, once again, heartfelt thanks
Hey everyone, an update on this. I went to an amazing endocrinologist who listened to me and ordered a thousand tests. I came back beautifully healthy in all respects, even my cortisol was about 350 (200 - 700).
However she also referred me for an MRI of my neck which has come back as desiccated c5/c6 disc with bulge. 4 years it's taken me to get someone to do an MRI! I've spent thousands on physio, osteo, docs, xrays, accupuncture, yoga etc and finally I have an answer.
So I'll be going spinal specialist and working on digging myself out of the depression/withdrawn/anxiety that the pain and non-understanding has had me in. A lot of my other symptoms probably stem from depression from chronic pain.
Thank you all SO much for listening to me. I wouldn't have sought an endocrinologist if i wasn't encouraged. AND she took me serious enough to test and reassure me.
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