Fibromyalgia? : Hi everyone, In the process of... - Thyroid UK

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Fibromyalgia?

melby76
melby76

Hi everyone,

In the process of trying to get to grips with worsening thyroid symptoms, I have now been diagnosed with fibromyalgia. Over the phone I may add.

My Gp’s are refusing to discuss this further, and prescribed pregabalin and Amitriptyline.

In the last couple of weeks I’ve had chest pain and high blood pressure severe enough for 111 to send me to a&e, and have paramedics attend my home on separate occasions. All painkillers failed to work for several days until I tried taking an aspirin one night, certain a heart attack was imminent.

The aspirin worked. I was able to sleep for the first time in several days.

My concern is that this is Hashimoto’s or lupus which they are refusing to test for. I am waiting to be seen by cardiology, and have an appointment for next week following a referral made prior to lockdown.

My GP is failing to take this into account and is adamant that my blood in urine, severe headaches and chest pains as fibromyalgia, even though there are lots of things that have yet to be ruled out.

I haven’t yet started taking the medication because I’m concerned about increasing my blood pressure further when it’s just starting to get back under control following the aspirin. I’ve also read that Amitriptyline can cause thyroid problems.

I am being told that my symptoms are too diverse, too general. I’m starting to second guess myself and wonder if it’s me that’s losing the plot. I’m not sure what to do next. Should I take the medication or try a different angle?

Thanks

*edit: thank you everyone for all of your wonderful advice and support. You’ve truly all been amazing! I feel more positive now that I have some ideas to move forward with and that my Gp treatment is not ok. I will update you all when I know more!

115 Replies
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Fibromyalgia/chronic fatigue have been shown in some cases to have low FT3.

As an undermedicated hypo with poor conversion I also had low FT3 and lots of symptoms that could have been diagnosed as fibromyalgia. I am much better now that I am on a combination of levo and lio.

As a thyroid patient I personally would want my FT3 levels checked and conversion calculated before I accepted a diagnosis of fibromyalgia.

melby76
melby76
in reply to Lalatoot

Thank you that’s really helpful.

JenHider
JenHider
in reply to Lalatoot

Hi,

We’re you on T3 only then introduced T4.

How much T3 & T4 are you on?

Thank you

melby76
melby76
in reply to JenHider

Hi not on T3 or T4, not diagnosed with I’m afraid, just suspect Hashimoto’s/hypothyroidism is at play.

Lalatoot
Lalatoot
in reply to JenHider

No Jen. Like many I was on T4 first - 4 years in my case - then introduced T3 when it became evident I had poor conversion.

Some folk manage with low FT4 when on combo therapy but not me. I need FT4 and FT3 well over halfway in range. I am waiting on my latest blood test to see what my levels are on 100mcg levo and 20mcg lio.

shaws
shawsAdministrator

One of Thyroiduk's Advisers was an expert in Fibromyalgia, Chronic Fatique Syndrome and thyroid problems.

He stated that T3 should be provided to those who have the above conditions. He would never prescribe levo.

The following was posted previously:-

healthunlocked.com/thyroidu...

melby76
melby76
in reply to shaws

Thanks shaws, I’ll take a look.

shaws
shawsAdministrator
in reply to melby76

I'd also get Free T4 and Free T3 checked. I think your T3 could be too low. Also bear in mind I'm not medically qualified but had the same long journey as many on this forum. Even doctor had no idea about hypothyroidism as I had to diagnose myself. one day after he told me all my blood results were fine!

melby76
melby76
in reply to shaws

TSH - 2.87 (0.27-4.2)

T3 - 5.05 (3.1-6.8)

T4 - 14.3 (12-22)

These results are from the beginning of June. SlowDragon commented on them and said possibly Hashimoto’s and to get checked for antibodies in 6 weeks.

I have been retested by hospital following admission a couple of weeks ago. But I have yet to see the results of these.

Gp practice has refused to release these over the phone and so I’ve had to do a subject data access request to retrieve them.

I don’t think the hospital results included antibody testing, and I’m not sure whether I should just go ahead earlier than planned and get this done privately, or to what extent this would make a difference if I’m still classed in normal range and therefore they refuse to do anything for me?

The results above were before the majority of symptoms I have now - now it’s: continuous left side chest pains and palpitations made worse by exercise, high bp, edema, loss of appetite, flashing lights from corner of left eye and blurry almost double vision especially towards the evening, and right side temporal headaches.

The symptoms I had when the results above were taken were: extremely dry skin, brittle hair, palpitations, missing periods, general aches and pains, extreme constipation (fecal impaction throughout colon) blood in urine, dry eyes, weight gain even though on diet.

greygoose
greygoose
in reply to melby76

flashing lights from corner of left eye

I don't think that's anything to do with thyroid. You should see and ophthalmologist as soon as possible.

melby76
melby76
in reply to greygoose

Thanks greygoose, it does however seem to come on when my blood pressure is high.

Since taking the aspirin my blood pressure has started to come down and so I haven’t experienced it in the last few days.

loulabel
loulabel
in reply to melby76

Have you had your folate, iron and B12 tested as this can cause some of you symptoms you have.

melby76
melby76
in reply to loulabel

Thanks Loulabel. Last b12 levels were good but Ferritin was low although within normal range. Just waiting to get latest test results back.

Lora7again
Lora7again
in reply to melby76

You need to see a optician as soon as possible because this could be the signs of a detached retina. I had the same symptoms last year and luckily mine wasn't but you really need to get that checked out just in case.

nhs.uk/conditions/detached-...

melby76
melby76
in reply to Lora7again

Thanks, I will. I’m booked in with my optician tomorrow, so fingers crossed.

Lora7again
Lora7again
in reply to melby76

I saw my own optician and he was excellent. You won't be able to drive back from your appointment because the drops affect your vision.

Carysta
Carysta
in reply to melby76

Re flashing lights, I have had this in one eye (resolved after 3 months) and now have it in the other. It is useful / advisable to attend the emergency eye clinic at your local hospital ASAP , failing that some Specsavers are funded by their local NHS to do eye health checks.

melby76
melby76
in reply to Carysta

Thanks Carysta. I told the dr at a&e and he just shrugged and said I needed to go to an optician.

I’m seeing my optician tomorrow though.

Carysta
Carysta
in reply to melby76

I am so lucky to live near a hospital with a separate eye emergency unit that is open 7 days a week and you self refer. Your A &E should have been able to get an ophthalmologist to see you. Thank goodness for opticians. Best of luck with everything Melby76

melby76
melby76
in reply to Carysta

Carysta, we have an eye emergency hospital here as part of my hospital, and yet a&e dismissed my symptoms and said I needed to see my optician, and that there was nothing wrong even though my eyes hadn’t been checked. 🤯😩.

Yes, thank goodness for opticians.

Hillwoman
Hillwoman
in reply to melby76

I've had this problem in my eye several times. I've been told that next time it happens I should get myself to Eye Casualty, NOT a standard A&E dept, as fast as possible. Find out where your regional eye hospital is and whether it has a 24 hour casualty dept.

It's a 45 mile journey for me to get to my nearest (Sunderland Eye Infirmary), but the symptoms can mean a detached retina, which must be treated within hours to preserve sight. I've been lucky so far. My symptoms were due to an aging process in the eye, known as posterior vitreous detachment.

When this happened to me I went to my local opticians and they used special drops which made the pupil of my eye become bigger. They then looked at my retina and took a picture of it to check for any abnormalities. Luckily everything was ok and I had the same as you. At first I could see loads of floaters but they have now disappeared because I think your brain gets used to seeing them.

Yes, I have tons of 'frog spawn' in mine. Very annoying in certain lights.

I have one large floater which happened when I burst a blood vessel in my eye while giving birth to my daughter 33 years ago. lol

That sounds nasty!

My eye still has a slight bloodshot look about it but when it happened my whole eye was bright red.

melby76
melby76
in reply to Lora7again

Thanks Lora7again. I’d be reading a book or looking at my phone and I’d see these flashing lights from the corner of my left eye, which also coincided with my vision in both eyes getting really blurry.

Both seem to be resolving now but definitely feels like it was connected to bp being high.

Lora7again
Lora7again
in reply to melby76

I hope that is the case but it is always best to have your eyes checked. I have been paranoid about getting TED for years now and I always have my eyes tested every year.

melby76
melby76
in reply to Lora7again

Thanks Lora7again. My eyes were only tested in September, the the deterioration in the last couple of weeks has been shocking.

Hopefully I’ll get the okay on them tomorrow!

Lora7again
Lora7again
in reply to melby76

I didn't drive for over 2 years because of blurred vision. I got myself some expensive designer glasses which I rarely use now because I no longer have blurred vision. My blurred vision was caused by my levels being too low. I also had hair loss, dry skin, loss of smell and taste, aching knees etc. I am also a stone lighter than I was when I was virtually bedridden and all this was caused by my thyroid levels being too low.

melby76
melby76
in reply to Lora7again

Wow, that sounds a lot like what I’m going through now. Thanks Lora7again. Everyone’s been so helpful, lots of food for thought, but at least some new directions to go in.

melby76
melby76
in reply to Lora7again

Thanks Lora7again. I’d be reading a book or looking at my phone and I’d see these flashing lights from the corner of my left eye, which also coincided with my vision in both eyes getting really blurry.

Both seem to be resolving now but definitely feels like it was connected to bp being high.

melby76
melby76
in reply to Hillwoman

Thanks Hillwoman. I’m in with the optician tomorrow, as per guidance given by a&e who also didn’t seem to believe me.

It’s been going on while my blood pressure has been high, but now my bp seems to be coming back to normal it seems to be resolving itself.

frenchmaid
frenchmaid
in reply to melby76

I had the same vision problem. I needed an operation as I had something called epiretinal membrane. It had to be removed to prevent retina detaching and loss of sight. Glad youre getting it checked out! As with the other replies, sounds like a thyroid issue to me. Your Tsh is high in the range too. Can you do private testing?

melby76
melby76
in reply to frenchmaid

Thanks frenchmaid. Yes fingers crossed for the optician’s tomorrow. I’m going to get tested privately soon too.

First it might help to have a list of hypothyroid symptoms

thyroiduk.org/signs-symptom...

In your shoes I would be wanting comprehensive thyroid tests carried out to include -

TSH

FT4

FT3

Vit B12

Vit D

Folate

Ferritin

Antibodies

This may help -

thyroiduk.org/getting-a-dia...

Many of us have private tests because medics mostly test only TSH and FT4 missing out the essential FT3 result

Research has shown that some people with CFS/ME have low T3 -

healthrising.org/blog/2019/...

I was diagnosed with fibromyalgia, CFS and hypothyroidism all around 20 years ago....being of a cynical nature I was never convinced about the first two!! After much trial and error it turned out low T3 was the problem and eventually a form of thyroid hormone resistance for which I need a huge dose of T3.

frontiersin.org/articles/10...

You have NOT lost the plot, you need a correct diagnosis and the correct medication asap..

Your medics are clearly useless....most endos are diabetes rather than thyroid specialists. They are far too quick to prescribe antidepressants when they run out of ideas and refusing to discuss your health issues, I would contend is a sign of their lack of knowledge

First you need the above tests carried out, the results will then allow members to analyse your thyroid status one that is established then we can move on. If you can manage this then post the results plus reference ranges

I arrived here 3 years ago barely able to function were it not for the experienced and knowledgeable members here who guided me along my thyroid journey I doubt I'd be able to write anything now!

Thyroid treatment isn't a quick fix.....but with the correct treatment it can be fixed!

Best...

DD

melby76
melby76
in reply to DippyDame

Thanks DD. I’ve just listed my TSH, T3 and T4 in response to Shaws, these were taken early June.

My biggest concern right now is the high bp (told to do a blood pressure diary for 2 weeks- halfway through doing this), right side temporal headaches, and chest pain. I just can’t seem to function.

I keep being told I’m clearly having panic attacks and am anxious. Codswallop! I wasn’t feeling anxious before but I am starting to now because I don’t feel like I’m being listened to by the people who are meant to look after me when I need them.

DippyDame
DippyDame
in reply to melby76

I'm not a medic but I'm beginning to wonder if the T3 in your blood is not getting into the cells where it gets to work....thyroid hormone resistance. (RTH)

A very brief explanation for a complex issue.

The endo I saw briefly would not entertain the idea......but my research led me there in the end and I now need a huge dose of T3 to function which would probably eventually kill me if I didn't have RTH.

I take it you have optimised your nutrients

I was chatting to a friend today and she was left speechless when I told her how badly thyroid patienrs are treated.....she didn't think such a thing could happen.

It sure does.!

Edit - melby76

Sorry didn't realise you had some labs....still recommend full thyroid panel test

Just looked at your results copied to shaws

TSH - 2.87 (0.27-4.2)

T3 - 5.05 (3.1-6.8)

T4 - 14.3 (12-22)

TSH should be close to 1 for good thyroid health

FT3 is 52.70% through ref range.......low

FT4 is 23% .....far too low

For good health both should be roughly 75% through their respective ranges

It looks as if you first need to trial levothyroxine for 6 to 8 weeks then retest to see if TSH drops and FT4 rises. FT3 may rise slightly. Then reconsider dosing.

It looks as if you are converting adequately from the T4 available

Medics are too quick to opine "anxiety" without ever looking for a cause....codswallop!!! If they don't look, for the problem they won't find it!

I hesitate to comment on blood pressure mine has always been highish but has dropped since I've been correctly medicated

Just a few thoughts.

melby76
melby76
in reply to DippyDame

In February last year my TSH was 1.17. In December last year it was 1.8, in February this year it was 2.3 and in early June it was 2.87. Its definitely on an upward trajectory.

Thanks for all of you advice and support DD I definitely appreciate it!

DippyDame
DippyDame
in reply to melby76

Sounds like you need to trial levo then.

Good luck, sometimes we just need to take control!

Keep us posted

melby76
melby76
in reply to DippyDame

Thanks DD. I will x

Thanks DD. I have tripled my vit d (on prescription for deficiency but is only prescribed at 800 IU daily) my combined levels of D2 and D3 was 56 in December last year.

I have just had this retested through GP but have to go through subject data access request to obtain these as they refused to give me these over the phone. I‘be also started taking magnesium, K2 and vit B 12 as this was mid-range too.

My GP’s practice has usually been good but at times is shocking. I have been told that the blood in my urine is because I must have been on my period, even though I told my Gp I was not. A&E wrote to my GP practice in feb after I thought I’d had a heart attack. They said they thought it was an arrhythmia caused by medication. The hospital wrote to my GP requesting a referral to cardiology and to stop my medication immediately and when I asked the GP what I should do with the boxes of tablets that I now couldn’t use she said I should keep them in case I changed my mind and wanted to use them again! Recently, my kidney results came back with a note to GP’s that the results need to be multiplied for Afro-Caribbean patients. Without the multiplication it appeared my results were in range but with the multiplication I was well outside of normal range. When I asked my Gp about this he said “well, are you Afro-Caribbean then?” Only to go on to tell me that the multiplication hadn’t been done and that it didn’t matter because 3 other tests had come back fine.

I feel like I’m banging my head up against a brick wall.

Have you had a mycoplasma test?

I don’t believe I have. Sorry for my ignorance but I haven’t even heard of that before!

I’ve just looked mycoplasma test up. It’s funny you should ask that. In May I was given antibiotics for a chest infection, although I didn’t have any symptoms of one but was complaining of acid reflux that had started suddenly, hoarse voice and lump sensation in throat. I still have the hoarse voice and lump in throat although admittedly the lump in throat sensation is better than it was.

mycoplasma, lyme, EBV, CMV. Check those. Especially if you have a fever or lymph node pain/gland pain

I’ve been checked several times for Lyme. I did have lymph node pain in my groin by my right hip but due to ongoing kidney pain and blood in urine I was given a ct scan which has come back normal.

My Gp’s are refusing to do any other tests because they believe that they are at the end of the road for me. I have spoken to 4 GP’s at my practice now and they all sing from the same hymn sheet ie: take the meds for fibromyalgia. I will definitely ask, but I’m not holding out any hope.

I think I may have to see if I can access an advocate from PoHwer or PALS and take it further that way, change GP or attempt to go privately.

I am shocked at how they won’t refer you on to a rheumatologist at the very least. Maybe You can register with another drs for up to 3 months if you stay in another area or address it’s what I had to do. I had to go stop with my partner and went to his drs and I got a lot better care with a top class dr. They will ask you why your wanting another dr at another practice just say your stopping with a friend and it’s easier and that they have been highly recommended. You can do this whilst your still at the same drs or you could completely register with another dr as it sounds as if they are not listening to you and if there’s blood in the urine that needs immediate attention. Do you see other drs at the surgery or the same one or are they all saying the same thing.. It’s very easy for your drs to be very dismissive as I have had this with several drs until this very month when a new gp spoke to me in regards to chest pain getting out of breath and fainting. I was on the phone with the new dr with me for an hour. This is what we need for you a dr who will listen and send you for further tests. When this lockdown ends you can pay privately for a dr It cost me £90 for 30 minutes and they can refer you on to someone. They cannot second guess you as you need to know if it’s just their own biased personal opinion or its a medical fact. Lupus is very complex and a dr is not an expert in that field. Once you have been given a diagnosis of fibromyalgia they say it’s that no matter what. I have got fibromyalgia and several drs kept saying oh it’s just your fibromyalgia. I definitely think you need a second opinion and further testing. I am currently being investigated for lupus and am just about to get a possible diagnosis. What symptoms are you having write then all down on a daily basis. Get full copies of your medical records. Don’t tell them why as they tend to panic. Just remain very calm and speak slowly as they tend to just say it’s stress. I have lots of experience of drs and medical professionals fobbing me off and the longer you are left without further investigation, a diagnosis and treatment it’s not good. This is why we get so ill as we are just left until the condition gets so bad they are forced to do something. Do you have someone who could write on your behalf a letter to the drs for you requesting a Referal. I would join as many health forums as you can as it’s amazing what information you can find. It’s this site which has kept me sane. I would also ask lots of questions when you go to the hospital. What have they said when you have gone to hospital you must be really unwell if your needing an appointment at hospital and you need to know if it’s linked to one condition or a few. Have you had a ANA blood test and do you have problems with sunlight, rashes or inflammation as these are all linked with lupus. You will have to read up on as many medical facts as possible just to educate yourself and to see if anything fits in with what your thinking. Have the drs testing you for everything and ask at the hospital why the aspirin worked as I think that’s to do with thinning the blood. I wish you all the very best of luck. Please let us all know how you get on as it’s shocking that you have needed paramedics coming out and still at the drs your not referred anywhere else. Is your dr qualified to make a diagnosis of fibromyalgia has he checked your muscles and symptoms and has he said yes it’s that and no more as lots of time we can have several conditions going on undetected for years. Yes you could have fibromyalgia but you could also have lupus. too. have a lovely day and I hope this gets sorted out. I got nowhere with my drs it’s only now that I have developed thyroid problems and neurological problems that they are suddenly listening. I am just so sorry your going through this as I know what it’s like not being listened to whilst getting more unwell. Fingers crossed you will get answers soon. Keep in touch so we know how your doing. Cheers. J

Thank you Jeromicus888. This forum has honestly been amazing with all the support I’ve received. Everyone’s so lovely here.

I did join BHF which was brilliant and very useful. I also joined the Fibromyalgia support group but that did not go well at all. Most commenters said I was having panic attacks even though I don’t suffer from them, and that I’m anxious hence the chest pain and high BP, and implied that I needed to learn to cope with my “symptoms”.

I tried the aspirin because it appears to be the advice given if you’re having a heart attack in the US at least - not sure about here. I found a Harvard medical paper that said that people with unexplained chest pain were more likely to suffer from a heart attack or sudden death, so I thought long and hard (because I have asthma and gout which means I shouldn’t take aspirin) but decided it was worth the risk because I was feeling so ill and didn’t want to call paramedics out again only to be told that there’s no emergency and to follow up with GP.

The chest pain has nearly all but gone since and I only took 1 aspirin. I have not had to take any other painkillers since. Still getting the occasional pain but it’s manageable. My bp is also coming down nicely from 188/114 at its worst to 150/100 now. My usual bp is about 143/89.

I have just done a subject data access request to obtain my medical records, so hopefully will have these soon. My request was refused over the phone and I was told I needed to do it officially.

I have pawed over the records that I do have up to January this year, and just found a lab comment to GP that appears to suggest I have Hyperlipidaemia and that secondary causes need to be ruled out, and this does not appear to have been done until I started getting ill enough for them to suggest tests. It appears they missed this comment.

I have spoken to all but 1 GP at my surgery. I have not spoken to the last remaining one because the last time I did about possible thyroid problems was when I saw a nutritionist privately, who wrote to Gp requesting T3, T4 and TSH and antibodies were tested and queried Hashimoto’s. My GP saw me after receiving the letter and had a go at me, basically calling the nutritionist a quack and saying she had no idea what she was talking about and that she couldn’t even request the tests that the nutritionist was asking for.

All GP’s have dismissed pitting edema, missing periods and family history. My dad suffered from high bp, and my mom suffered from what appears to be an undiagnosed thyroid condition (lost most of her hair, eyebrows, digestive problems, dry skin etc) before developing diabetes.

When I got the last 2nd opinion from my GP with a younger, newer and more sympathetic Gp, she said I just needed to take the meds. When I asked if I could be referred to a nephrologist for blood in urine as it’s been since November last year, or rheumatologist to confirm fibromyalgia she said no, take the meds first.

Do you mind me asking how you found the private dr that you went to see?

I cannot believe how you have been treated you could easily have an undiagnosed illness or several. It’s very easy for a dr or others to say it’s stress and panic attacks. You could have these and more. I have panic attacks, stress, OCD and a generalised anxiety disorder but just because you have these conditions does not rule out other conditions or illnesses. I have several to diseases and conditions date and am having further investigations for auto immune diseases and possibly neurological conditions such as MS. You need to google private hospitals near me. I went to methley park in leeds and another one who had an amazing lady dr at spire methley park. Sometimes when they get in touch with your own GP it can go against you. I paid privately for my son to get a second opinion and to see a neurologist privately and the drs must have written something in the notes as he was rude dismissive and shocking and he kept reading notes from the drs. My son now has fibromyalgia and has been referred to a specialised clinic to rule out ME. Something I have fought for when he was 13 and 15 but they have left it almost 7 years now he’s quite unwell. Each and every time I was fobbed off it cost me almost £800 taking him privately to see a rheumatology twice and a neurologist twice to get answers. Now finally he’s that unwell they are forced to send him for Further tests. You must have someone go to each and every appointment if it looks like your not believed then drop them and look elsewhere. The best care I have found is holistic therapists I have seen them all with a much higher lever of success. It sounds as if your dr is digging his heals in and blatantly ignoring your concerns. I have been where you are and it’s awful. I get chest pain and have had several ECGs but have passed out a few times, had several falls and had 2 seizures a few years ago and have chest pain that comes and goes and am off for yet another ECG on Tuesday. If they just addressed all the concerns in the beginning rather than fobbing us all off then we would get answers much faster. I would definitely ask if you can have a box that monitors your heart over 2 days to 2 weeks. It may give you some answers. Sadly it’s only when we have been ignored for years left to get more and more unwell till it’s blatantly obvious your I’ll even to the medical profession then something is done. Ask for full blood tests and be extra nice to them. I have lost the plot a few times and got nowhere. Now it’s always thank you so much even though I despise all of them. They think they are gods. I had to pay a alternative therapist to give me answers on the first visit whilst drs in ten years missed the fact that I had CFS. I trust you will get answers but it may be best you find another GP practice as this dr is doing more harm than good by refusing to listen to you. I have been told by someone who used to work in the NHS hospitals that the government have told drs to play down symptoms and not to refer too many people for tests especially anything that would enable you to apply for financial benefits and to keep NHS lists down. Disgraceful indeed. Keep us all updated. Type in private hospitals near me online and ring around and I think it’s worth every penny as they can fast track you to someone else. I saw a lovely dr who couldn’t do enough for me and I will be returning to private care once I have got rid of my overdraft as I have almost bankrupted myself in an effort to get better health care for my teenage son who’s only 19 and myself. Keep us all updated. Have a wonderful day. J😀

Hi how did you get referred to get investigated for lupus and cardio? I went to a rhuematogist who just diagnosed me with fibromyalgia without even looking into anything else and the fact I had Hashimoto's already and wasn't medicated properly and then just got the same pills offered which I refused and then got dismissed bk into the community with no suitable pain relief or support

I get all these issues aswell chest pain trouble breathing etc and just get fobbed off they just did a blood test when I asked them to rule of rheumatoid and lupus then the doctors have fobbed me off as I have been ill all 20s and early 30s with no doctor listening I found only locum doctors were the best at listening and then I wouldn't be able to see them next time I rang as they had moved on. iam looking in to eastern medicine now but I wanted to be referred to a cardiologist as it's connected to thyroid issues if you have issues with your heart so thought they might beable to override the endo who has left me with no Meds.

melby76
melby76
in reply to Merlio18

Sorry to hear this Merlio18. I haven’t been able to get a referral for lupus. That is my argument, that this should have been questioned as I have symptoms of this and many autoimmune diseases appear to have symptoms that overlap.

I was referred to cardiology in February because I had what I thought was a heart attack. I got checked over at hospital and was told that they didn’t think it was a heart attack but that they thought it was an arrhythmia caused by medication at the time. They then wrote out to my Gp stating that all medication should be stopped until I’d been seen by cardiology and advised my GP to refer me to cardiology which she did.

Merlio18
Merlio18
in reply to melby76

Wow how different hospitals treat people I had the same thing went a n e with heart arrhythmias too last year lasted all night then in the morning had to go a n e I felt that bad and all they did was run tests and say it's the medication and the hot bath I had in the evening that triggered it and to reduce the meds and not have hot baths. crazy .... I wish they had referred me to a cardiologist instead of fobbing me off.

melby76
melby76
in reply to Merlio18

All I can say is if you are still having symptoms keep going back to a&e. Someone on one of the forums I now belong to suggested a great idea: write request a referral in writing, and if they say no in writing ask them to explain in writing why they are refusing you. That way they can’t say that you didn’t ask when you complain that they refused to refer you.

Failing that change GP or get an organisation/charity like PALS, or Pohwer involved, they have trained advocates that can help you make an official nhs complaint.

I am in the long drawn out process of requesting medical records so that I can use the information as evidence within a complaint, and find trends relating to my test results that I can point out to a new GP.

Your other alternative is as Jeromicus888 suggests, go private.

Omg why have they left you so long when your clearly not well. The faster they refer you test you and get you on a treatment plan the better you will feel. Why do they always leave it till your this unwell. What is wrong with these drs. I begged the drs to send me for tests for lupus which eventually after a few years they decided to send me to see a specialist. He suspects I have lupus and is about to diagnose me. I was referred to a neurologist for my fibromyalgia and I got a diagnosis on the first appointment but only after I pestered the drs to send me. It only took about 2 years after a total stranger at college says I think you have fibromyalgia 🤣then 2 years after that I got a diagnosis. I now am borderline for thyroid problems. They have had to do several ECG tests at the drs and i have been rushed in to hospital with chest pain a few times but they say I am fine. Perhaps at a later date I may get answers. Have had the box that monitors your heart and they assure me all is well. I think it’s shocking that just because you have been diagnosed with fibromyalgia that they don’t do further tests. As you could have fibromyalgia plus other conditions. Seeing as your not seeing a rheumatologist you can Now go back to ask for a second opinion and ask that they send you to someone else at another hospital. If you keep a detailed symptoms diary and photos of rashes that may help you. I only got somewhere as I can’t tolerate the sun and as I have reynauds and ultra light sensitivity with a mild rash for over almost 30 years and can’t leave the house without factor 65 from America and factor 90 from Korea. they Finally saw sense and I got to see a rheumatologist who’s useless but is just about to diagnose me with lupus officially as they have given me steroid injections with a high level of success plus I have taken prednisone too which really helped me. My neurologist is convinced I have some kind of auto immune disease so hopefully I will know more soon. What are your full symptoms can you tolerate the sun do you get a rash. They are obsessed with the rash even though not everyone who has lupus get it. There’s also Sjögrens and scleroderma too. Looks that up too. Google all your symptoms and see if you can find a link. I am just about to have further tests and another Referal as they now suspect I have a neurological condition such as MS. Get on as many health forums as you can and ask about your symptoms as there’s people on this and many other sites that have helped me. They are more clued up on the medical side than most drs. I hope you get somewhere but I think the fact your having thyroid issues could also be linked to further auto immune diseases too. If you get nowhere you can pay private to see a dr it Cost me £90 for half an hour with a GP and a Referal with a rheumatologist which cost me £220 plus another £150 for a follow up appointment. type in private hospitals near me to get some information. Have a lovely day and don’t forget if they are not helping you at your drs then it’s all about dropping them And looking elsewhere. let us know how you get on and I hope you start to feel much better soon I hope they can get you on some thyroxine medication as that’s supposed to be good. You need to have it under control as it can effect your heart so no wonder it’s effecting your breathing and your getting chest pain. Am just so sad your being fobbed off and not being taken seriously and they are heartless to just leave you without full medical care. take care. J

Jeromicus888, I have just been fitted with a 5 day heart monitor. I had a telephone assessment back in April, because my face to face appointment with cardiology had been cancelled due to lockdown. The nurse I spoke to agreed to a 5 day monitor as I had a 24hr monitor about 4 years ago which failed to pick anything up. Back then the palpitations were so infrequent and rarely happened daily, and I didn’t have chest then pains either. This monitor allows me to record chest pains as well as palpitations.

Funds are limited right now due to reduced lockdown income, so I’m going to change GP and put a complaint in with my current GP. If my new GP doesn’t help then I’ll look at going privately then when finances are hopefully less tight.

Although I have had face rashes in the past, they are rare for me and I seem to be okay in the sun. I have a lot of the other symptoms for lupus/hypothyroidism and Sjogrens. I too have been told in an off the cuff remark from a Gp that it is likely I have Raynaud’s syndrome.

Considering lupus is common in Afro Caribbean’s, I would have thought that having symptoms would result in an ANA and ENA test being done. I have a friend who recently had both tests and was informed by GP that they are very expensive tests to do so I’m guessing they try to minimise how many are done, and therefore only really consider testing if you are showing obvious signs such as a rash or hives.

Ah bless you that’s shocking that they think you have reynauds and they are not doing further testing as I have reynauds and it’s linked in with lupus . I am so glad they are doing a 5 day heart monitor as that may give them more information I think they can do it up to 2 weeks. I think lupus and fibromyalgia can effect your heart I definitely think that more testing is best for you as you are needing answers. I can’t believe how drs can just ignore you and your level of health when your clearly not well. You definitely need the ANA and ENA tests doing I have tested positive twice for ANA and I am unsure about my ENA tests. Yes you are correct anyone of Afro Caribbean heritage are more likely to have lupus. How can they deny you tests that would help you get a diagnosis it’s just awful it really is. Maybe if you get another dr who is sympathetic you may get somewhere. I have had years of being fobbed off but finally I have dropped on a New dr who wants me to do tests for all sorts and wants me to have a second opinion and a Referal for a new rheumatologist I am speechless so don’t give up hope. A new drs practice could be the way forward so be extra nice and am sure you will finally get the top class care that you so rightly deserve. They have a duty of care to look after patients but they constantly let us all down. I used to get so upset and they knew it so now I am very calm polite and helpful when dealing with them but I am usually seething inside 😤 and feel they are all useless But I dare not let them know it. 😂🤣😂. This has now altered their opinion of me and I am being treated better but we shouldn’t have to put up with their nonsense and have to praise them 24/7 just to get adequate healthcare. Not everyone gets that rash and some can be ok in the sun. Have you ever had to take steroids such as prednisone maybe for a chest infection and if so have they made you well. My neurologist told me that if a person has a lot of symptoms and the steroids calm every thing down then it suggests an auto immune disease as it’s an immune suppressant drug. Have you had any problems with your kidneys or pleurisy in the past as that can also be linked with lupus. Get your medical records and write down all your conditions and symptoms since you began to get ill. I have just sent a 4 page letter to my GPS with lots of information on with every symptom too and I asked to have every blood test done possible. They are now ringing me back with the results after just 24 hours of blood tests so I may get some answers. When did they do your full blood tests if not recently could you ask could they do them again or could you write a nice letter to the drs well mine was a master piece I praised them and said how good they have been and how supportive omg what a difference. 🤣😂🤣. Just put in the letter that you feel so ill and just want to get well and how being poorly 24/7 is effecting your day to day living and is getting you down that may just do the trick. I really hope you get answers and soon. Let me know how you get on but I think if you said to a dr please refer me to a rheumatologist and if at the hospital they say I am fine then I won’t need any further appointments again. It’s what I had to say to get them to refer me. It may just work. Good luck and fingers crossed it gets the ball rolling. Take care and have a lovely day. J.

Bless you Jeromicus888. So glad you’re finally getting the care you deserve.

I do try to be nice, just sometimes find them so trying 🤣 When my Gp received the letter from the hospital saying stop all medication and refer me to cardiology, I asked her what I should do with all of the unopened boxes of tablets and she said “well you could keep them just in case you change you’re mind and decide to start taking them again!” When I said At the end of the consultation when I said I just felt so tired and I’ll, she half laughed and said “oh dear!” and then ushered me out of the room.

I have blood in my urine that doctors have been finding since November, but nearly all of my kidney function tests are coming back fine. I also have cloudy urine at times, and I am retaining water with swollen feet and legs including thighs. Other than that I am not aware of a kidney problem. Yes, I also have had chest infections and taken steroids (several times) and seem okay after taking them, but I can’t remember if I was having flare ups at the time. I have asthma, and it seems that almost every time I get a chest infection I have an asthma attack and it’s resulted in quite a few hospital visits.

This forum has been amazing for keeping me going and pushing for investigations so I can get well again. Can’t thank you all enough. You are all stars.

I will let you know how I get on xx

Bless that dr sound useless. 😂. No wonder your fed up and if always tired and suffering with water retention and asthma on top of everything else that you have it sounds exhausting. You have almost identical symptoms and conditions like me. Am Sure in time you will get answers. Have a lovely day. Take care J.

Yes i have hypo thyroid and just been diagnosed with fibromyalgia too. I dont know what to do im getting no help no feedback i dont know what’s what and im getting myself in a tether as im putting on nearly half a kilo everyday and now stressed out too and down and confused and don’t understand results or anything. I just want to cry and no one can see my pain

melby76
melby76
in reply to Malusky

So sorry to hear this Malusky. Hope you can find out what is going on with you too.

and having swollen ankles and throbbing feet with a baker’s cyst in my knee and having all these tests with nothing showing up making me feel like a hypo condriac

I would definitely insist the lupus testing is followed up too. SLE symptoms are very general.

melby76
melby76
in reply to JanieR

Thanks JanieR.

I'm really sorry to hear what you're going through melby67. I have also been recently diagnosed with fibromyalgia after being hypothyroid for a while. I was on levothyroxine only, with blood test results similar to the ones you posted here. Whenever I tried to increase my levo dose I had bad reactions. Then I learned about John C Lowe treating fibromyalgia with NDT and also found information on the DIO2 gene, simply explained in this study:

thyroiduk.org/getting-a-dia...

"The DIO2 gene activates triiodothyronine (T3) and the researchers found that a tiny change in this gene could mean that although the body gets enough T3, the brain doesn’t."

"Because this gene causes a deficiency of T3 within the cells, the usual thyroid hormone function tests will not show up a problem. This means that your TSH, FT4 and FT3 blood tests will look normal."

I recently switched to NDT and I'm still in the process of getting optimised, so I can't say "I tried it and it worked" yet, but I thought I'd share this, hoping it may help you.

melby76
melby76
in reply to Canu

Thanks Canu, that’s so helpful. Thank you for sharing. I will look into that gene.

DippyDame
DippyDame
in reply to melby76

thyroiduk.org/getting-a-dia...

Genetic thyroid test info

melby76
melby76
in reply to DippyDame

Amazing. Thanks DD.

Personal opinion here. Amitryptyline does nothing for anyone. I was prescribed it years ago as "it's proven to help ME". B********. It's prescribed for everything because it's cheap.

Pregabalin isn't going to help, is it??? It's for nerve pain. You need a new GP. Something is going on and you need to find out what. Sadly, you will probably have to take the situation into your own hands.

As for being tested several times for Lyme - I infer from that, that you have reason to believe you might have it. The NHS test is useless and you'll need to get tested privately. I used Igenex in the USA, but I know many people use Armin Labs in Germany.

melby76
melby76
in reply to rosetrees

Hi Rosetrees. Thanks for this. No I didn’t think I had Lymes, but every time I went in to see my Gp with Hypothyroid related symptoms she’d test me again for Lymes because my thyroid blood tests were normal!

I would still consider a test privately for Lymes though based on what you’ve just said.

And yes, I do feel like I will have to take things into my own hands. Both my parents passed away by the time I’d got to 31, and I have been a single parent for the majority of that time, my kids (albeit new adults) have no one if I’m not around!

Hopefully I can maybe throw some light on the subject for you due to my experience with some similar issues. I too have fought with docs, A&E, endo's, private docs etc and none of them did me any good because they weren't listening. It has taken me years and a load of money to find answers. I too was told CFS, Fibromyalgia and like you I refused to take all the medication they wanted me to take. So I will try to keep this simple and not long winded. Docs are only taught by the book they won't step back and look at the whole picture. A lot of what you have said in previous replies points to your living on adrenaline like I was hence high blood pressure palpitations etc and this is due to low blood sugar which also makes you thyroid hormone resistant. When the doc tests your blood sugar it's fine. That is because the adrenaline is keeping it stable so they never find it! I was having terrible palpitations through the night, called an ambulance and when they got to me my blood pressure was through the roof and my blood sugar was quite high. But that is what adrenaline does but no doc could see that. What was actually wrong with me was hypoglycemia. That is actually caused by low cortisol. If you have low cortisol you have thyroid hormone resistance and it doesn't matter how much T3 you produce it can't get into your cells without glucose. That is why some folks who have replied here are saying you need large amounts of T3. Synthetic T3 raises blood sugar. But all that's needed is a raise in cortisol. It has taken me years to discover all this and I'm just beginning my journey raising my cortisol. My advice don't take those prescription drugs they mess with your blood sugar and insulin. Eventually they cause type 2 diabetes. Get a 24 HR saliva test to check what your adrenals are up to. Start with the basics. I'm hoping that I can now fix myself after years of struggling, pain and weight gain. Trouble is it takes time x

melby76
melby76
in reply to magsyh

Thanks magsyh that makes a lot of sense. I’ll have a look into getting a cortisol year done.

Merlio18
Merlio18
in reply to magsyh

How are you raising your cortisol ? Wheres the best private labs to get a test from in UK?

magsyh
magsyh
in reply to Merlio18

I will have to check my emails company I used begins with R. Yes Regenerus Labs just checked. Cost £83 but worth it. Mine came back low. I started using adrenal cortex but you don't know what it's equivalent to and can be expensive. So I read stop thyroid madness book in detail. If you have low cortisol worth while reading. My doc is a complete no brainer so I usually have to fix myself. I'm using hydrocortisone cream and a 1ml syringe. Depending how low your cortisol is you may need different amounts. Don't do this until you know what your cortisol is. This is no good if it's high or normal. I was getting terrible palpitations through the night due to low blood sugar because of low night time cortisol. Now I'm sleeping again. When you use cream use no more than 10mg otherwise you shut down your ACTH.

You have to go with the cortisol rythum. Start with 0.5ml first thing, then, 0.5ml lunchtime, 0.25ml teatime and if you have low night cortisol 0.25ml. you may need more than this depending how low your cortisol is. Don't exceed 35mg per day or 3.5ml. The other important thing is watch out for adrenaline rush mine only lasted a few days. The other reaction depends on how much T3 you have hanging around. You may get a reaction if the T3 suddenly reaches your cells. I reduced my levo to stop this. Once your cortisol raises you may well need much less thyroid medication. It's complicated because thyroid medication steals your cortisol and high cortisol suppresses your thyroid so you have to find the balance. The other important thing you must put the cream on a different part of your body every time and never on your face. I would advise you buy stop the thyroid madness book as it explains this all in detail. Hope this helps x

magsyh
magsyh
in reply to magsyh

I forgot to say this is all based on 1% over the counter cream.

Merlio18
Merlio18
in reply to magsyh

Thanks for reply that's great info iam sure I have that book but I get overwhelmed trying to absorb half the info half the time with bad head and being so exhausted with brain fog so bit of a nightmare but i will have a read. How long did do you have to stay on the cream for ?

I am on metativive at mo and tried wp NDT but can't seem to find right dose only on a small amount so I kinda feel o might have high cortisol as can't seem to tolerate more than 1.5 pills without feeling hyper but then I get these chest pains and completely wiped out bad body aches and pains and a throbbing head.

magsyh
magsyh
in reply to Merlio18

The hyper feeling comes from the adrenaline. I had the same couldn't tolerate the tiny bit of T3 in NDT I can't raise levo either. It's because cortisol too low and thyroid meds are a stimulant to your metabolism. You have to raise cortisol then you will be able to tolerate the raise in metabolism. I've only been using cream a week but already much better. You have to use it for as long as you need it to raise your thyroid medication without problems. Depends how bad your adrenals are?

Merlio18
Merlio18
in reply to magsyh

Sounds like I might have similar issues does the test through Regenerus explain everything in detail and how to treat or do you figure that out by reading the book? Iav had a an ACTH (cosyntropin) stimulation test and they said they ruled out Cushing's before and nothing came bk abnormal so I think I need the private test to high light what's possibly going on not sure to work with a holistic practitioner tho too see if they can balance other issues out as I remember having a spiritual lady pick up my adrenals where out of whack to but iav tried adrenal supplement and they make me feel ok and then gradually worse for some reason the longer I take them so always end up stopping them

magsyh
magsyh
in reply to Merlio18

They only give you the result in graph form. Post it on here or put it in a private message to me and I will help where I can. The problem is with adrenal supplements you don't know how much you really need and too little can make the problem worse. That is why the STTM book is so helpful. I don't understand why an ACTH test would show Cushing's normally it's for determining if you have an adrenal or pituitary problem?

What a nightmare you're having.... doctors seem to be gaslighting you... Never heard of getting a Fibro diagnosis over the phone though.... terrible! Your list of many physical symptoms such as the optical issues, blood in urine etc have nothing to do with CFS/Fibro or anxiety. Over and above finding a root cause, given the problems you've had with no periods, bowel and bladder issues I'd be pushing for a gynae check up and hormone blood tests - just in case. I'm also thinking if the headaches could be linked.... a pituitary issue perhaps, since your TSH is fairly low, considering your T4 is pretty dire..... just thinking aloud here...

If you have dryness in your intimate areas as well as dry eyes*, dry mouth and constipation it could be that you have Sjogren's Syndrome (which can occur with Hashimoto's). This is known to cause heart issues and severe headaches in 50% of sufferers as well. It affects all the mucous membranes.... so can cause issues with bowel transit. A lot of people with it just overlook the mild symptoms as a nuisance and don't report them, when in fact, they're essential for a diagnosis.

nhs.uk/conditions/sjogrens-...

sjogrenssyndromenews.com/20...

info.sjogrens.org/conquerin...

*When you see an eye specialist you could ask them about Sjogren's.

melby76
melby76
in reply to HLAB35

Oh my. Thanks HLAB35 yes, of course. I have had the dryness you mention.

In my late 20’s I gave birth to my daughter. During pregnancy I had weird symptoms that was later diagnosed as non-variant cough asthma. I’d never had this before. After that I started getting low grade temperatures. My body hair mostly stoped growing. I’d shave my legs once a year! It felt like every 2-3 weeks I’d feel like I was coming down with the start of flu, but the symptoms (aches and pains) would always resolve itself a few days later.

Ten years ago my periods suddenly disappeared for 6 months. My hair also fell out significantly at this time too (head hair, eyebrows and eyelashes), in addition to rashes across my face. Prior to this I’d always suffered from extremely heavy periods. GP told me that I must be in menopause because thyroid tests has come back in normal range. No other testing was done. I was 33.

I am now 44. My periods have not disappeared for that length of time since, but occasionally do go amiss for a month or two and are much lighter than ever before.

I have recently been told by a&e that I am clearly not eating enough fibre or drinking enough water. I drink approx 2-2.5 litres of water (not including other drinks) a day, and eat bran flakes, salads or half a plate of vegetables, with several pieces of fruit a day. Since then however my appetite feels like it switched off.

A GP mentioned that she would refer me to gynea, because I’d had pelvic pain - felt like I was passing a kidney stone but my lymph node in my groin was also swollen. The following day when the stomach distension and kidney pain worsened she sent me to hospital. I was admitted to the surgical ward and they identified my pain as kidney pain, and once AGAIN found microscopic blood in my urine.

This has all been so helpful thank you. I will mention Sjogren’s at my appointment tomorrow.

magsyh
magsyh
in reply to melby76

Everything you have described there is low cortisol problems, no appetite too. Make sure you are eating plenty protein. Lack of body hair also like me. What happens is when your cortisol low your body shuts down your thyroid to protect you. It's like the gear box is broken so the brain puts on the brakes then of course we come along and try to fix it with thyroid hormones and what happens is that forces cortisol even lower which can be dangerous. Then we get hyper symptoms as a warning sign. So get that cortisol tested ASAP and ease off the thyroid hormones. I had to reduce my levo to 25mcg until I could fix the cortisol problem.

Merlio18
Merlio18
in reply to HLAB35

Hi just wondering have u had a sjogrens test as I pushed for my doctor's to rule it out as I have the same symptoms and all they did was a bloody test and dismissed it as it came bk normal but is there something they could be missing how do you get referred to a specialist

HLAB35
HLAB35
in reply to Merlio18

No, it was my daughter, actually. She was tested for another connective tissue problem along with P.o.T.S. She also used to have problems with saliva and painful eyes and started on Sea Buckthorn while at the same time giving up soya, gluten and dairy - symptoms went away. Now no longer takes Sea Buckthorn. However, there are so many varieties (like dog breeds) of connective tissue disorders (which can produce confusing body wide symptoms) that have genetic, autoimmune and hormonal trigger components. The Ehler's Danlos Syndrome society website is helpful in getting some idea of the magnitude of this issue, as there are many who don't actually have some obviously visible symptoms such as hypermobility, while actually having more pernicious issues on the inside. Varieties of Ehler's Danlos (there are at least 13 known ones) can coexist with Lupus, Hashimoto's, PA or Sjogren's. Doctors really cannot handle the scale of autoimmune problems we have in the UK and would prefer to give us one easy label and be done with it.

Please immediately change your doctor.

melby76
melby76
in reply to Applegate

Thanks Applegate. I will look at another surgery close by.

Applegate
Applegate
in reply to melby76

And then demand the blood tests for thyroid, arthritis, lupus etc

Hi Symptoms are never too diverse or too general and you are not losing the plot. I'm glad that you are seeing Cardiology and hopefully they will consider Small Fibre Neuropathy (especially if you mention it!).

About 50% of people diagnosed with Fibro actually have something called Small Fibre (Poly) Neuropathy, which can affect nerves all over the body. With the symptoms you mention it would be worth some consideration. Have a look at Dr Anne Louise Oaklander (Google Oaklander YouTube) - best one is 'Small Fibres, Big Pain' (Radcliffe) and Dr Brent Goodman (Google Brent Goodman YouTube) - try 'Sjogren's Syndrome & The Autonomic Nervous System'. Sjogren's also can cause a much wider range of symptom's than the 'usual' dry eye and mouth issues. A good neurologist should be doing large fibre (Nerve Conduction and EMG) tests and small fibre, like a Thermal Threshold Test or Autonomic Function Test. SFN can have a number of root causes and is treatable, as nerve fibres can grow back if you can find out what your cause/s are.

There seem to be quite a few connections between the thyroid and mast cells (and also between Small Fibre Neuropathy/fibromyalgia, Sjogren's and Dysautonomia - nerve cells and mast cells can trigger each other, hence pain and weird sensations). When oestrogen is higher there are multiple effects in the body. My very basic understanding is that neurotransmitters in nerves and blood vessels need to be in balance - particularly noradrenaline and histamine - and these are strongly influenced by thyroid hormones (T3 and T1AM). Many people notice mast cell degranulation/high histamine issues shortly before a period (flushing, itching, food reactions, blood pressure changes etc.). Variations in the COMT gene have also been linked to fibro. COMT enzyme function (responsible for dopamine, adrenaline and oestrogen metabolism) can be supported by magnesium which will help the liver to clear oestrogen. (And COMT impacts on MTHFR which you also need to be functioning to get a happy liver and detox ability) There are also (As Dr Goodman mentions) some overlaps, not yet fully understood, between Antiphospholipid Syndrome and all of the above mentioned. As aspirin has helped, APS might be worth testing for. Hopefully your optical check will shed some light too! Best wishes

melby76
melby76
in reply to bookish

I’ve just looked online and seen that anti-phospholipids is linked to Hyperlipidaemia, which was noted on my records. I will look into this and Sjogren’s.

Thanks again for all your support.

humanbean
humanbean
in reply to melby76

Hyperlipidaemia is just another name for high cholesterol.

If you are suffering from hypothyroidism and it is untreated then high cholesterol is one of the commonest symptoms there is. Back in the 1940s or 1950s (I'm not sure exactly when) high cholesterol was considered to be diagnostic for hypothyroidism. (The TSH test hadn't been invented at that time.)

Whatever you do, don't agree to go on statins.

drmalcolmkendrick.org/2012/...

spacedoc.com/articles/50-fa...

Regarding Pregabalin (also known as Lyrica), are you aware that it is addictive and very hard to come off for some people?

Do a web search for "is pregabalin addictive" for more info.

In your shoes I would suggest getting your iron, ferritin, vitamin D, Vitamin B12 and folate tested - but you would almost certainly have to get these done privately with a finger-prick test. Once you have your results you could then post them on the forum and ask for feedback.

melby76
melby76
in reply to humanbean

Thanks Humanbean. That’s really helpful advice. I had no idea that it was once considered diagnostic criteria for hypothyroidism.

I had heard both of these medications are pretty horrible to come off, but was reluctant to take them anyway because of the listed side effects ie thyroid problems and high bp, especially when I’m querying both!

I have just been tested for folate, ferritin and b12 but no vit d through Gp. I’m surprised they didn’t test for Vit D as I am on a repeat prescription for vit d for the last 4 years, and my last vit d test results from December last year (which is when I was complaining of bone pain) were low at 56.

Since then we have had winter and lockdown and my vit d prescription is still low at only 800IU, so I wouldn’t be surprised if my most recent results were lower. I have increased my vit d in line with advice here (and started increasing calcium, taking K2 and magnesium) on this forum and my bone pain has now mostly disappeared.

I have done a subject data access request to retrieve my records from my GP as they have refused to give me the results for these blood tests over the phone. I will post them on here when I get them though. Thanks humanbean.

Firstly, I’m so sorry to hear about you and your son, and your journey to getting the help you need.

Secondly, yes it’s disgraceful, and I am shocked. However, given that another commenter here has alluded to gps being told to keep referrals to a minimum, I’m not entirely surprised.

I’m pretty sure this will be a huge factor in an increase in post Covid non related deaths. I’m just trying not to be one of them.

I have not had ANA or ENA tests done. They have tested for thyroid, celiac, Lymes and RA, all came back negative.

My cardiology appointment on Tuesday is for a 5 day monitor. I’d had a 24hr monitor a few years ago but it came back with nothing so they suggested a five day one this time around. My blood tests are coming back fine apparently, although I haven’t actually seen the results of these yet.

They have ruled out heart disease, but considering I have had both kidney problems and now heart related problems it seems logical that there is a possibility that either the two are linked or this is an autoimmune attack.

I will keep going and I’ll keep you updated.

It could be thyroid, but it also sounds as if magnesium might help. magnesium deficiency does cause symptoms of fibromyalgia and a whole long list of other things including cardiac problems.

melby76
melby76
in reply to JuliaWM

Thanks JuliaWM, I started taking a magnesium supplement a few weeks ago so I’ll just have to wait and see if this improves symptoms.

I hope it helps. I have Hashimotos but also had another problem magnesium has been helping with. I think doctors greatly underestimate the need for trace minerals. It is proven now though that magnesium deficiency is the cause of (at least much) pre-eclampsia.I am saying that in case anyone is pregnant or planning a baby.

This has been touched on above but my experience is fibromyalgia type pains are caused by thyroid problems. I have Hashimotos and when I feel properly medicated the pains stop. I’m currently changing my medication and the pains are very bad. I think you definitely need to change your GP and push for much better care. Good luck, this is an excellent place for support and information.

melby76
melby76
in reply to Sue-b

Thanks Sue-b. I think you’re right x

I was diagnosed with fibro in 2009. The rheumatologist that diagnosed me is an expert. He told me lots of exercise and a good diet. He told me that they didn't know why it worked, but it does for many people. I in pain did not accept that at the time. I went to another doctor who gave me lyrica and an antidepressant. HORRIBLE. In the end I stopped all the drugs, became an exercise fanatic, (diagnosed later as celiac) cleaned up my diet, and changed to NDT. It changed my life. Sometimes I get a flare up. I found CBD oil to really help me sleep and to calm me or help when there is a flare up. IMHO Lyrica (pregabalin) is a horrible drug. It can cause huge weight gain, headaches, blurry vision, and other side effects. Good luck.

melby76
melby76
in reply to Debon

Thanks Debon. I really don’t want to be taking medication when I haven’t had a diagnosis from a specialist, and whilst I still have kidney pain and blood in my urine.

I popped on to a kidney forum last night and saw a post where lots of people commented on how they had developed CKD. Many were at stage 3 and only found out by chance, and the consensus between those posting was that their CKD developed as the result of pain killers and prescribed medication which they have subsequently had to come off.

I’ve heard of such nasty side effects from Amitriptyline and Pregabalin. It seems stupid to take the risk when the pain may not even be fibromyalgia.

You have an inspiring story there, so good to hear you’re feeling better. It’s a little bit of hope.

Debon
Debon
in reply to melby76

Noooo, don't take that stuff if you have a kidney infection. (I used to suffer a lot from them) Get a good rheumatologist and a good endo. Also, muscle pain can come from a thyroid dose that is not correct. Please ask me if you have any questions. Best of luck to you. Get better soon!

melby76
melby76
in reply to Debon

Thanks Debon. I don’t think it’s a kidney infection though. Drs have been finding blood in my urine since Oct/November last year. I’ve had 4 tests and in 3 of them blood was found. My last test was done in hospital 2 weeks ago and it was still there.

I think I’ve got a goitre too. Have had hoarse voice for a couple of months at least, but last couple of weeks I’ve had a weird sore throat, with occasional stabbing pain on the right side of my throat, struggling to swallow and extremely thirsty. I’ve looked in the mirror this evening and can see a very clear, thick swelling from mid neck which gets wider at the bottom of my neck. It feels tender and swollen, definitely not like that on my left side.

Off to hospital tomorrow. Going to cardiology appointment but will also go to a&e again about pressure in temples (and face tingling in right side from temple to ear which also began tonight).

Wish me luck!

Get a different Dr .

melby76
melby76
in reply to CapeFl68

Thanks CapeFI68. I’m looking into that now.

The late John C. Lowe found that some cases of fibro improve with T3 treatment. And I have a friend with fibro who is getting results from steroid (prednisone or HC treatment), although that is risky without testing showing adrenal failure.

I am appalled that you can 't get testing for Hashi's or other autoimmune conditions. Where are you? Are you unable to get referral to open-minded docs? I had to get my Hashi's diagnosis from a naturopath (and private pay), because so many MDs are close-minded.

melby76
melby76
in reply to Eddie83

Hi Eddie83, I’m just outside of Birmingham in the U.K.

I’m pretty sure it’s not fibro. My gp’s appeared to have missed several things in lab reports from the beginning of this year - one of them being that I appear to have Hypernatremia (high serum sodium levels, this explains the bone pain and muscular twitching. I’m also on prescription for vit d deficiency.

My GP’s are so adamant that I have fibromyalgia, and have ignored the high sodium even though I have raised this with them.

They also missed that I have high cholesterol and the report states that they needed to investigate causes of this, which they didn’t do either.

It’s possible that both the high serum sodium and the high cholesterol are connected to the chest pains I’ve been having.

Once again they refuse to rule any of this out because they are so sure it’s fibromyalgia.

Last night however, I noticed I have a goitre. It’s on the right side of my neck, and quite pronounced when you feel it, although it is harder to see than feel. I’ve been complaining of throat tightness, hoarse voice and lump sensation at the bottom of my throat for months.

I think I’m going to have to make a formal written complaint and change dr’s.

Eddie83
Eddie83
in reply to melby76

The problem with fibro as a diagnosis, is that there really isn't a verified set of criteria/symptoms on which to base diagnosis. I suspect that some docs like to diagnose fibro because they don't know what else to do first.

melby76
melby76
in reply to Eddie83

Yes I agree. I think that’s exactly what happened here, in addition to me being an expensive patient! I have asked for rheumatology and nephrology referrals but been told no to both.

If you are over 50, do NOT take Amitriptyline. It is an anticholinergic medication and has been shown to cause dementia. In my case, it made my resting heart rate over 100. medicalnewstoday.com/articl....

This article contains a table specifying the problem-causing drugs, along with possible alternatives. health.harvard.edu/mind-and...

Thanks vocalEK. I’ll take a look at that.

I am only 44 but I was still concerned about that seeing as my blood pressure is really high right now.

Debon
Debon
in reply to melby76

Just so you know....Hashimotos can cause high blood pressure, diabetes, and several other lovely things. If your doctors refuse to give you a referral to other doctors, then go and pay a private doctor. This is YOUR health and YOUR life. This is exactly what I had to do. Every doctor who saw my low TSH wanted to lower my dosage which would send me to hell. The endo I now have is private. She properly diagnosed me and is very open to listening.

melby76
melby76
in reply to Debon

Thanks Debon. That’s reassuring. I’d like to think there’s light at the end of the tunnel. My problem is affording a private dr right now, but it’s something I’d like to do the minute I can get the funds together.

My Gp agreed to send me for an ultrasound today, so that’s at least a start in the right direction, but the only reason I’ve been able to get that referral is because of the swelling on my neck that appeared a couple of weeks ago!

Marz
Marz
in reply to melby76

You mention somewhere about testing that indicated Hashimotos. Is that correct ? If you have anti-bodies then that could explain a fluctuating TSH - and then an increasing TSH - as the hormone levels in your blood decrease.

The only test results I have seen here show a result that is higher in range than the T4. This would indicate a failing thyroid - when it pumps out T3 in a last effort to get things going.

I would treat your thyroid first and foremost and see if symptoms reduce. So many of your issues could possibly share one root cause.

Low Ferritin - Iron - Folate and B12 can be the cause of heart issues. Low nutrients are VERY common with Hashimotos and low thyroid in general. Anaemia ? FBC - full blood count ?

Private Testing through Thyroid UK would be helpful and something most of us would do before seeing a consultant privately ! Special Offers with Medichecks tomorrow !

melby76
melby76
in reply to Marz

Thanks Marz. No I haven’t been tested for antibodies. There has only been suggestions from one of the administrators here from my test results, and from a nutritionist I saw privately a few years ago.

I am now being referred for an ultrasound which will hopefully shed some light. I’m a single parent on SSP which makes affording private testing or seeing a dr privately extremely difficult right now. It’s frustrating because I feel so unwell.

The fluctuating symptoms such as blood pressure high to normal and back again, constipation to diarrhoea and back again, and left side chest pains and headaches that come and go all reoccur with night swings in sleep patterns. I’m either catching up on sleep and am extremely sleepy all the time or I’m not getting any at all.

Last night I managed all of 20 mins sleep for the whole night, which will obviously make me feel worse.

I have just had my vitamin levels tested and still waiting to get the results of these. I will get a full thyroid panel test done including antibodies soon I hope.

Marz
Marz
in reply to melby76

Yes I read your mention of a scan. Could take a long time before you have an appointment - from reading here.

Yes I know seeing a consultant privately is expensive but testing privately to ensure the correct testing would be money well spent and could force your GP's hand 🌻

Your symptoms sound like Hashi's ....

melby76
melby76
in reply to Marz

Thanks Marz, that’s wonderful advice. I thought it might take a while for the ultrasound to come through, it’s definitely wishful thinking (on my part) that was hoping for something to come through sooner.

I’m hoping I’ll be able to afford the thyroid panel later this month. Fingers crossed, and with a little luck I’ll get some answers to start moving forward. I’ll keep you updated. Thanks again Marz.

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