Giving up on medication and seeing the Doctor - I can not rely on either!

[Kitten-whiskers]

I am getting increasingly more annoyed with GP's, not that often I go to see them but there are times when a little help is needed, but oh no that is too much to ask.

My main reason for going was because of the dodgy batches of medication I have had and now all the suffering I am having to go through, I wanted something to help with the severe pain from the Fibromyalgia and the 2 hours a night sleep I am getting. What did the wonderfal GP do - yes you guessed it - Anti-dressants. Not a hugh suprise but what do I do if the medication has changed, all I got is a blank look, like I am some sort of Alien.

I pointed out it had been over 6 months since I had menstrated, hoping for some tests to check for hormone inbalances but instead just told its all done to my thyroid, just like every other symptom I just have to put up with.

Can't trust the doctor and can't rely on medication, I may as well stop both.

I am so annoyed!

[Hidden]

Your doctor is an idiot, he probably says nothing because he hasn't got a clue. In my opinion all your symptoms seem to be related to oestrogen deficiency. Is there any chance you could get this tested privately.

Hope you didn't accept the anti-depressants!

[Kitten-whiskers in reply to Hidden]

Hello Jan,

Thank you for your reply, do you know where I could get tested for Oestrogen deficiency?

I did get the prescription for anti-depressants but only because I am in much pain and so tired. I don't understand why he didn't give me anything with anti-inflammatory properties.

[Hidden in reply to Kitten-whiskers]

Hi, sorry for taking so long to come back to you. I think if you go onto the Thyroid UK main site, you will find a list of labs that will do oestrogen tests privately. Do you think your doctor might do the test for you? I take Magnesium tablets and although I don't have problems sleeping myself, some people have reported better sleep when taken at night. Mg is non-toxic and most of us are low anyway.

[Kitten-whiskers in reply to Hidden]

Hello Jan,

Thank you for your reply, do I need to get progestion tested to? I do already have an appointment booked for Monday, I am going to push for testing but if they can get away with just labelling it as a thyroid issue, then the changes are slim, but worth a try.

I do have magnesium supplements in the day and of an evening bath with a tonne of epson salts, but I can take the supplements of an evening instead : >

[Hidden in reply to Kitten-whiskers]

I would say yes, get both done if you can, low levels of either will affect the thyroid. Even if they come back normal, it will be at least something you can cross of your list. Of course it is a thyroid issue, the thyroid won't work properly if these levels are low, hopefully they will know that!

Take care and good luck at the GP's.

[Kitten-whiskers in reply to Hidden]

Hello Jan,

Thank you very much for your advice, I will push for both on Monday. I think I read somewhere that using either cream wouldn't cause a problem even if there wasn't a deficiency - maybe it would be worth trying them, if i couldn't get the tests

Best wishes

Debs

[Hidden in reply to Hidden]

Why is everyone, well NOT everyone of course, so against anti depressants!

I have had to take them for many many years unfortunately, otherwise I don't think I would be here now. Apologies if I have got this wrong. But I CAN agree on unhelpful doctors, have met some, they can't wait to get you out again! And some ADs do prove helpful for other things I have heard.

Take care xxxxxx

[Hidden in reply to Hidden]

Hello Debfigroll, my comments about AD's were specific to Kittenwhiskas. I could have worded my reply better, but in my personal experience when a doctor doesn't know what else to do he will prescribe antidepressants instead of doing his job properly. When thyroid function is low depression is not uncommon, so fixing the thyroid problem, along with other vitamin/mineral deficiencies will generally improve mood.

When I was first diagnosed with an underactive thyroid it affected my mood above all other symptoms. Its a wonder my husband didn't have me locked up!!

I have no personal experience of AD's, but have been offered them. My understanding is that certain AD's can effect iodine uptake by the thyroid.

[Hidden in reply to Hidden]

Hi jan4363

Thanks for your response. I am new here, so am still learning about the intricacies of the thyroid system, but your comments are interesting, I was diagnosed with overactive thyrd, I think it was about 12 yrs ago, hav bn on carbimazole ever since, but admit that no doctors really discuss it with me! Last blood test was initiated by myself!!! Maybe there is a link with depression, I don't know, I was first diagnosed with that 42 yrs ago! So is it a case with doctors, wonders me, of "keep taking the tablets, Mrs"

I lost my mom last year, so everything has been turned on its head in my world, not a great deal of empathy really from medical profession!

Thank you anyway, I am not wishing EVER to cause offence 🌞❤️ Just thinking out loud!! I have much to learn I know!

[Hidden in reply to Hidden]

No offence was taken so please don't worry about that. My only concern was that I had offended other people, not intentionally, just annoyed with doctors who use AD's instead of doing their job. I am not familiar with over-active thyroids so can offer no advice but have you ever had other things tested like Vit D, B12 and folate. Low levels can be linked to depression.

[Hidden in reply to Hidden]

No, funnily enough it has never occurred to me to have those things tested, I will mull it over for sure, but knowing the doctor(s) attitudes these days, I would poss be met with impatience! Or hidden exasperation, a fine thing really! Thanks anyway!

Take care, Deb

[Hidden in reply to Hidden]

I can certainly identify with that, haven't been to the doctors for 2 years, self medicate on NDT and private testing.

[Hidden in reply to Hidden]

Hello again, I meant to add to my message that I was sorry to hear about your Mum, I know how that feels. Stress depletes magnesium from the body and you might find it helpful to take something like Magnesium Citrate or Natural Vitality's Natural Calm. The body will excrete any it doesn't need, but don't take if you have kidney problems.

[Hidden in reply to Hidden]

Oh thank you so much for that! Not many folk understand until it happens to them, grief is such a horrible thing, and on top of that all our own health worries as well. And as for the medics, well I won't go on about them, had some kind response, but little else. Do you know, I really think so much of it now boils down to money and maybe these tests we ask for are just expensive, in their eyes I mean, which is ridiculous. Perhaps private IS the only way to go, for many issues, but of course not everyone can afford to. I will look into those supplements you mention, maybe Holland & Barratt uk supply them.

Take care, thanks, Deb ❤️

[Hidden in reply to Hidden]

Yes I realise that private testing is expensive. The Vit D3 test can be done by finger-prick method and is not too bad cost wise. If you feel you don't get much sun you could supplement for a short while and see how it goes, but take it with magnesium. Mg is relatively inexpensive, just don't buy Mg Oxide, its not very well absorbed.

Take care jx

[Hypo101 in reply to Hidden]

Because docs prefer to give you them than you know actually work with you, the serotonin theory is just that....a theory but docs and and drug companies like spout it as fact, they can make you worse and no one actually knows what they really do you

[Kitten-whiskers in reply to Hypo101]

Hello Hypo101,

You sound as annoyed about the medical profession (if you can call them that) as I am.

I did think the Serotoinin thing was bull, but I did take one last night and they made me very drowsy indeed, so much so I didn't think driving was a good idea in the morning, so how is that helping, well it isn't, as normal they try and mask the symptoms instead of correct what has caused them.

Best wishes

Debs

[Howard39]

Sorry for the experience sadly most doctors start with antidepressants even though the patient is not depressed.

If my chemist is correct there is a monetary reward so not an impartial treatment on any level. Whilst meds like amitryptaline are for depression there are claims they help with pain, sleep and migraines.

Just to clarify do you take thyroid meds and if so do you have your latest results? If these are not balanced your pain and sleep will be worse.

I would have thought lyrica more useful for ongoing pain for fibro( and yes I have it too)

I was lucky I have a good specialist who went through diet meds and supplements together with sleeping options. The vitamin injections are fantastic.

If you need more specifics please do not hesitate to message me.

[Kitten-whiskers in reply to Howard39]

Hello Howard,

I really appreciate your reply, I am really suffering at the moment.

I do take liquid T4 but can only tolerate this once a week.

I would really appreciate any advice you have to offer, as fibro is really bad, I do not normally sleep well anyway but now because of the pain it really is about 2 hours a night.

Best wishes

Debs

[Clutter]

K-W,

Which AD was prescribed? Amitryptaline is often prescribed for chronic arthritic type pain as it is a muscle relaxant. It can cause drowsiness so can be helpful for insomnia when taken at bedtime.

arthritisresearchuk.org/art...

If you are sure you've had dodgy batches of Levothyroxine and it's not that the medication has stopped working for you please make a yellow card report via yellowcard.mhra.gov.uk/

Have you ever been able to tolerate sufficient thyroid replacement to get TSH down to around 2.0- 3.0? Menstruation can temporarily stop when TSH is high.

[Kitten-whiskers in reply to Clutter]

Hello Clutter,

Thank you for the link, that has answered some questions. Yes he did prescibe Amitriptyline, but i don't like the thought of taking anti-drepressants - afterall they are not without there own side effects and problems coming off them.

There was without a doubt a issue with the batch I recieved in January - this was reported via yellow card, but I am still waiting to hear back after the sample was sent back, I am not sure with these two batches that followed - they do taste and smell just maybe not as strong.

My TSH was tested was tested just after I finished the first 'dodgy meds" and the TSH was higher than it's ever been. I have not been able to tolerate enough medication to get in range, I only take 0.75ml once a week, which is clearly not enough but it did ease the fibro.

I really don't know what to do now, I am exhausted, full of pain, along with all the other symptoms that get put down to Thyroid and if i am honest, I am a bit grumpy.

[Clutter in reply to Kitten-whiskers]

K-W,

Fibro pain, exhaustion and insomnia will make anyone feel grumpy. Me, I'd be homicidal.

I hope the amitryptaline helps.

[Kitten-whiskers in reply to Clutter]

Thank you Clutter, replies from you don't come into my email anymore :<

[Clutter in reply to Kitten-whiskers]

K-W,

Check your spam filter. If they aren't in Spam please use the Help button on the HealthUnlocked banner to inform HU.

[Hypo101 in reply to Clutter]

My neuro wanted to give me low does for tingling and numbness i get...I said no

[fibrolinda]

Amitryptaline is usually given to help with fibro pain, sometimes with success. When consultant put me on them I really tried... lets face it with such bad relentless pain we try anything 😩 I made it to ten days then started hallucinations so stopped, they seriously sent me loopy.. loopier 😏

First nothing takes fibro pain away but the right pain med cocktail (for me) 'rounds the point' and they don't always work and I must pace myself and stretch and rest a lot. It took a great gp a long time to find the right combo 'for me' to give me some relief. Any reduction in pain level can be a huge deal😊

Secondly...... If you barely tolerate t4 have you been tried on t3 or ndt? If not why the heck not?

I eventually after a lot of research self medicate with ndt with my current gp knowledge. Nearly 9 months in and long way to go but I SLEEP😂 Pain is just as bad as ever but who knows over time ? Pain hits a level, or spasms wake me yes but I use trigger point therapy ball work and go back to sleep. The difference is astonishing.

Have you seen a rheumatologist and/or pain consultant?

Sorry foggy brain and trying to be coherent... apologise if failed

Linda

[Kitten-whiskers in reply to fibrolinda]

Hello Linda,

Many thanks for your reply, sorry to hear your pain is still bad, fibro is awful, sometimes seems to flare up for no reason :< - have you given up Knightshade foods, that made a difference for me.

Im shocked you have a brillant Doctor, no change of that hear. Have you read Leon Chaitows book on Fibro, I am wading my way through it - he is fantastic.

I have tried T3, but no joy either. I haven't seen a Rheumatologist or pain consulant, do these help?

Best wishes

Debs

[fibrolinda in reply to Kitten-whiskers]

To be honest not much. The pain consultant gave me trigger point injections in my tender points, nearly killed me! I did a 6 week fibromyalgia course in 2006 and I knew so much more than they did it was scary. I self taught relaxation exercises, breathing properly... I was breathing shallow cos of pain I guess. Self taught meditation which helps when the pain is unbearable... every day😒 distraction and mindfulness. Learnt a long time ago I have to help myself. Also do you know about MYOFACIAL PAIN? Look up Dr Devin Starlaynl, she has fibro and Myofacial pain and I have learnt a lot from her about stretching and trigger point therapy.

Also look up the late, unfortunately, Dr John Lowe.

Have you tried ndt ? I just don't know how you can fight back whilst your thyroid is Caput?

Shaw on here knows a lot about fibro and thyroid, hopefully she will see your post. I am learning so much after years of no way to fight and just getting worse. I did food intolerance diet in 2001 and found citrus, my favourite fruits blackberry, raspberry and strawberries are all triggers but I am fine with a little fungi now and then 😊 No white flour pasta or rice, all triggers. Em, fibromyalgia comes with all menopause symptoms even when menopause is over 😩 sorry😭 sorry so much more to say but hit wall... meditation time

X Linda x fibro ((hug))

[Kitten-whiskers in reply to fibrolinda]

Hello Linda,

I don't think I would be brave enough to consider those injections - the pain must have been unbelievable, if it done a lot of good but it doesn't sound like it did. I will look up Myofacial pain, it is not something I am famillar with.

I keep meaning to do a food intoerance diet, that must take forever, my diet is so strict as it is but maybe i am avoiding things I need not be and not avoiding things I should be : <

I am trying to learn meditation but I really hate doing it, I know, that means i need to, right?

I have tried NDT and that was the worst of them all for me, It is very hard with only a tiny bit of medication but that said I had been doing better than I had for years, until I was such a fool and decided to listen to my (at the time) nutritionalist who told me to stop the medication and then after that massive error I had a dodgy batch of medication, still not picked up from them really

Best wishes

Debs

[red_head40]

Go back and demand a hormone test, you have every right to do that. Or get it done privately. Then go back and show those ignorant doctors you were right!

[Kitten-whiskers in reply to red_head40]

Thank you Red_red, I am going back Monday and will be asking outright for the test, My cycle has been up the spout for years but now they have completely stopped - and I feel that should be looked in to.

They are Ignorant and getting worse by the year, it seems