.. still suffering from under-active thyroid symptoms after extensive tests and discussion with my GP.
I haven't written for a while because I wanted to report back with my experiences to give the full picture. I decided to approach the situation as if I didn't suspect I had thyroid problems and the GP suggested I might be having all of the pain because of firbromyalgia.
I researched it, wasn't convinced but agreed to take the Neurotin nerve medication offered as well as a low dose anti-depressant called duloxitine in an effort to calm the pain. From the drugs prescribed, I felt it was an effort to calm me. To be honest I was sedated.
After 2 months I said I did not believe I had fibromyalgia and reported my symptoms remained and the medication was making me feel ill. So the doc ordered tests. FSH, full blood count, cortisol urine tests, liver function tests, prolactin tests and finally Free T3 and T4, plus TSH blood tests.
I was sent for x-rays of my hip, knee and left foot which had developed a 'ganglion' on one side. I still have plantar faciitis - but not as bad and my frozen shoulder is unfreezing. Dry eyes and mouth are causing much distress. As is hair loss and muscle aches.
So the results came back and the only thing that was marked to inform me about was that I am now in the menopause with an elevated FSH. All other tests proved within range so no further action to be taken.
I asked about my TSH - it had dropped from 3.64 to 2.11 and now was 1.96 in the range 0.35 to 5.5. Doc said he expected fluctuations in 'my range'. Free T3 result is 5. Free T4 is 14 so I have to accept that my thyroid function is fine according to these results.
Doc says he feels my symptoms are due to the menopause. He gave me drops for dry eyes, more pain killers and has referred me to a consultant about my 'arthritis'. That's the first time that word has been used to describe my joint aches.
He hadn't got the x ray pictures reported back to him so his crystal ball re my joints seemed to be fully functional and he concluded I have arthritis without the results!
So I am menopausal and arthritic. I have no hot flushes. My joints are fine one day and not the next. To be honest I am not convinced it's anything but underactive thyroid but I don't know where to turn to now as my GP has done the tests and that's the end of my qualms as far as he is concerned.
I would be grateful if any of you could confirm my FSH, free T3 and T4 are definitely in current range as I would like opinions.
You are definitely NOT fine according to these results , yes, they are in current ranges but that does not mean much, it is where they fall in the ranges which matters. Your T4 is low, only 4 up range but a whopping 10 down. Bad. Your T3 scraping the bottom of its range. Bad again. Inadequate T4 means it is converted into inadequate T3 which is the active hormone working on the cells, making you feel good. Or not, in your case. You must be feeling pretty grim with results like these, but medics unfortunately assess by the TSH which is in range and by the fact that the other elements are also in range.
It would be good idea to have a test run for TPO (thyroid peroxidase) antibodies but you probably will not get anywhere with your benighted doctor hooked on the TSH only as he probably is. Janeb's is best advice to go private.
Meantime you need to educate yourself about thyroid and adrenal issues, in sheer self-defence: you will find lots of information on the main site if you branch out from Jane's links, plus buy Dr A Toft's "Understanding thyroid disorders" BMA publication, Dr Toft past president of British Thyroid Association, can be helpful in some instances
The symptoms you mention and your history do indeed suggest that you are hypothyroid, and I sympathise with you entirely having had 2 members of my family in the same situation. They were both confirmed as hypothyroid by a private doctor and this may now be the best route for you to take. You can obtain a list of private doctors from the main Thyroid UK website: thyroiduk.org.uk/tuk/diagno...
Firstly though ask your doctor for the vitamin/mineral tests mentioned on this page:
We do need to see your test results and the reference ranges, so do please post these here.
Jane x
Thanks Jane - I think I will have to go the private route because I asked my GP for a trial and he said not if my results came back 'normal'.
The thought of going to see him with a request for more vitamin and mineral tests fills me with dread because he made it clear he does not think my thyroid is causing a problem. I go back to the rheumatologist in August. I have never mentioned thyroid function to her - she was looking for other auto immune diseases lupus etc and was the one who suggested neurotin.
I am going to ask for a print out of all my last blood tests from both GP and Rheumatologist as they just say 'normal' normal' 'normal' and only gave specific results when I asked for them. The fact I have to ask for the range after they give the numbers would indicate to me theyre not sure what the figures mean and are relying on the lab to 'red flag' abnormal results instead of analysing them themselves.
I feel lousy today. 8 hours sleep and tired, aching joints and muscles, dry eyes and not enough energy to swat a fly
I actually think your t3 is too low, from the research I have done it should be nearer the top of the range or at least to the right of mid range, yours is at the bottom. Your t4 isn't much better and should be higher in range. I think this is the reason your suffering from painful joints and muscle aches. Doctors always use the menopause when they don't really know what's causing the problem.
You need to convince him your t3 is too low or pay privately to see an endocrinologist, as he wont refer you if TSH is within normal range.
If you're sub clinical Hypo- then you are in good company.
My TSH has varied between 2.8 and 4.8 [different labs] recently.
Strange how 3+ TSH is fine -but when under treatment less than 2 is optimal , in fact much lower is targeted, usually. Just shows what a minefield the Drs look into!
Hormone interactions are common, though -and from experience,& if you're like me, you may find your system sensitive, right now, and not conductive to straight Levo therapy anyway.
I feel worse on even low doses -it's early days , though.
Anything further than T4 dosing will need and Endo involved and even then it can be a struggle.
Plenty of anecdotal stuff here, on this.
The advice of a long standing member here to me was 'you have a long way to go' and I feel this applies to you.
The UAT problem is slow growing, complex and undertreated generally-so be patient, stick at it and take heart- help is always out there!
The other thing to watch is Adrenal status- this can undermine many other processes.
Fibromyalgia isn't a "disease" in its own right, anymore than a headache is. It's a symptom of something. The trick is working out what it is a symptom of. Like "CFS" it has been reclassified as a disease so that doctors can use it as an excuse to do no further tests and offer no treatment. Grrrrrrrrr
I still felt rubbish when my TSH was 2.5. I'm improving now it has dropped to 0.2.
Don't forget all the attendant tests that should be done - B12, Vit D, iron, etc.
If your GP won't help you, you could consider taking nutri thyroid. It's availble from nutricentre.com/p-21606-nut... and I take it on the advice of Dr P. It's sold as a health supplement, so prescription is required. Start on a low dose and see if you notice any improvement.
Make sure you have your TSH tests done as early in the morning as possible. We have daytime fluctuations in TSH levels - highest in the am, lowest in the afternoon. This could be making a difference to your results.
Your T3 and T4 levels may be in range but look low to me - and they may be too low for your body to be optimal.
I think you need to get your antibodies tested plus vitamin D, B12 , iron and folate. I have positive thyroid antibodies. My first TSH test , done privately, was at 5.1 but my NHS ones have all been in range although mostly only just in range (4.4 against a max on 4.5). I therefore get no thyroid meds but am restested every 6 months. I also had a high FSH reading in my first NHS blood tests and was told I had gone through the menopause at 41 having been regular as anything (and not on the pill) until 8 months earlier. Like you no hot flushes etc and did not really believe it and still don't.
I did get to see one helpful consultant at local hospital who explained that it was quite possible (likely) to have more than one autoimmune condition. There is an autoimmune condition which knocks out the ovaries. I think that is what happened to me. He also mentioned coeliacs, vitiligo and type 1 diabetes. There is also one called sjogrens syndrome that causes dry eyes and dry mouth. You might want to pursue this.
I take low oestrogen combined contraceptive pill which is like a mini HRT. Its not easy to get prescribed at my age but it helps me.
Have you had thyroid antibodies tested? This would be CRUCIAL. Traditional doctors don't tend to test for these as they don't know how to treat autoimmune conditions... In the great majority of cases, hypothyroidism is caused by autoimmunity (chronic friendly fire going on inside you, your immune system gone mad and attacking bits of you, the thyroid being the first and easiest target). Once you have one autoimmune condition, you are more likely to develop other. Many patients with thyroid conditions develop rheumatoid arthritis, both autoimmune.
Your symptoms really do sound like you have autoimmunity going on (thyroid, joints).
You could also have a T4 to T3 conversion problem.
My advice would be to request thyroid antibody tests or get these done privately if GP dennies this and if you can afford this. Then if again you can afford it, try to find a naturopath or functional medicine practitioner who knows how to treat autoimmunity. If not, try to read about the subject... diet is key and undetected food allergies are at the chore of these symptoms in so many cases, gluten being a very likely one. There are a lot of misconceptions in this area. Just because a food doesn't cause digestive symptoms when eating it, it doesn't mean that one is not severely allergic to it. Food we digest without trouble can be messing up our immune system in the background and leading to all these autoimmune conditions. I'd recommend going strictly gluten free for three months and see what happens. .. since going gluten free (it has to be 100% free with no exceptions) my thyroid anyibodies have practically disappeared and my symptoms are much, much milder
I've had under active thyroid for 20yrs plus nodules I'm also vit d deficient have lupus arthritis fibro which is a disease by the way. I'm allergic to wheat. Raynalds vertigo cfs. Depression a fused lower spine. I have hair loss at least no bold patches but thin on the front,no need to shave legs. persistent headache pain fatigue can sleep 18hrs and still feel tired. Can't go out in sun even with factor 50 sun cream I burn, heat makes me breathless exhausted I wear dark glasses all the time eyes are light sensitive. Have told dr I need a body transplant!!! If not for my daughter and to granddaughters I would end it all now. Wishing you all as well as can be
Thank you for all of the replies. I have been in contact with a private doctor to try and get this sorted. I needed your support and experience to spur me on and reading some of the replies I believe I am or am bordering on Hypo. I know something is wrong with me apart from menopause and arthritis.
However I had a light bulb moment, and instead of another surgery visit am going to write candidly to my GP.
Firstly, all of this started when I wasn't in menopause. Furthermore all of the blood tests he did as well as the thyroid ones came back 'normal'. Therefore if I don't have an inflammation marker for arthritis or an autoimmune disease in my blood either it means ALL test results are 'normal'.
So how can he call me 'arthritic' and menopausal.? I would have thought if I didn't have any signs of inflammation in my body, then that pretty much rules out arthritis. I don't have any autoimmune markers either so it's not lupus etc.
Also lack of hormones causes menopausal symptoms and I have no other symptoms nor have I ever complained to the GP about my menopause. I think I'm going through it without any noticeable changes. So how can I just have muscle and joint aches (which is extreme menopause symptom) and not all of the other symptoms of menopause?
Thirdly I am going to tell him about this forum and the help and experience I have seen others give and will tell him that he has not diagnosed me at all, nor has he gone through the results in detail - he's just seen that they weren't flagged by the testing lab.
If all the test results were normal why choose arthritis as a diagnosis - he did several other tests he thought might be causing my symptoms why not stick a pin in any of those and say that's the cause.
There is a link between thyroid hormones and other hormones. It has been reported on recently [sorry no link] that male androgen level is lowered by UAT.
Maybe your Dr is trying hard and just picking the highest indicator he has- your admission to menopause and that is agreed.
Is he just saying let that settle out before tangling with what seem to be marginal TSH figures right now?
Have you thought about the cortisol angle,also? Adrenal' insufficiency' is the buzz word- just don't mention fatigue!
Another lab [private] may give better results, too! Mine did- not sure why though.
You meantioned plantar, eg sore soles, interesting fact I read the other day . Plantar can indicate a low vitamin d3, mine went away once my d3 was higher. I'm still very tired but bone psi is much less.
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