2 years in pain, no diagnosis / my invisible illness :(

[Glaciera]

Hi everyone, I am new here, I found this website by chance really, when researching yet another symptom which has surfaced a short while ago on top of a long list of symptoms I already have. I am writing here as a last resort really, after wasting thousands on private "specialists" and waiting on NHS referrals which take over 6 months at a time I feel my wallet significantly lighter and hope in living a pain-free normal life, having children, working again and actually wanting to carry on is slowly fading.

I really don't know who to go see next, I don't have millions to throw around whilst I find that one doctor who will finally put the puzzle together and treat me before it is too late. Private specialists in London (where I live) charge £200 per consultation and over £600 for tests/scans and so on, I have had the lot..

I desperately need help, and feel maybe I have come to the right place to ask for advice from those who are possibly in the same boat, perhaps someone has been through what I have and maybe can recommend someone or tests I need to do?

I feel so lonely in my symptoms, to other people I look fine.. perhaps aged slightly more and look tired, but no visible wound or defect... so no one understands how I feel inside. I feel it is no life at all when you cant do anything you used to enjoy, cant exercise, cant work, cant socialise, can't sleep, and when you turn to someone for help they just smile and tell me "your too young", or "your just getting old, it's normal" or "you must have psychological issues or depression", or "exercise will help".. any old excuse, whilst completely ignoring my story and symptoms and not willing to test further.

Little back story:

In 2015 I got offered a job in Malta, without a second thought I moved there and started to lead what you call a healthy lifestyle, clean diet, no processed foods, gave up all alcohol and started exercising at the local gym, at first as a hobby then it turned into ambition, I never felt so happy back then and so full of energy, I attended a few classes a week, yoga, boot camp and did heavy lifting most days after work. A few months went on by the time I had noticed that sometimes during yoga class my feet and legs would feel numb. I started to sweat more than usual, in fact I felt highly sensitive to even small exercise and heat, sweating excessively and always feeling out of breath, my lungs would start to hurt when doing cardio. Sometimes I would have night chills and twitches, waking up in the middle of the night covered in cold sweat. I figured it was my stressful job which was the cause, and nothing sinister. However soon afterwards, I had fallen ill with sore throat, I felt weak and turned to a local private hospital for help, where I was given a week course of antibiotics and diagnosed with strep throat upon examination only. After less than a week of completing my course of antibiotics, I fell ill once again with same symptoms and a temperature of 39/38 degrees C. I had made a secondvisit to a doctor and was given a second course of antibiotics, this time diagnosed borderline tonsillitis. Followinganother week, my sore throat came back once again, and once again I was given a different type of antibiotics which seemed to have finally helped my sore throat.. (This was the first time in my life that I had been so ill for almost 2 months on and off) and my work performance significantly suffered as a result which placed a great deal of stress and pressure on me.

Despite my throat healing, I noticed I felt extremely tired and had a constant small rise in my body temperature. A month afterwards I had started to experience very severe headaches which came on randomly at work, then carried on throughout the day, and returned the following morning and stayed until I went to bed. The times a headache would strike would vary, sometimes the pain would disappear for an hour or more, only to return later.

Still feeling unwell, and unable to carry on with my job, I returned to London on 26th November 2015. Eversince I suffer daily from mild to extreme headaches, scalp sensitivity, extreme fatigue (feeling like I have had 3 hours sleep when I slept 10) loss of libido, joint and muscle aches, excessive hair loss, sudden acne breakout all over my face, chest and back (never previously suffered from any type of acne in my whole life), brain fog which led to short-term memory loss, extreme neck and shoulder pain and backaches, irregular shortened periods (pain in ovaries and breasts) and low blood pressure.

So far I have been found out I have:

- 9 am Cortisol levels high above range (NHS - no further action taken)

Private Endocinologist withheld information from private tests results, told me they all look borderline or normal and if I wanted to, I can look into a private short synachen test - not yet taken)

- High Vit D deficiency and Magnesium deficiency. ( been taking suppliments for 6 months)

- Possible Gluten Intolerance (have been gluten-free 6 months)

- Dairy Intolerance (have been dairy-free 1 year)

- Changes in breast tissue and structure, possible mastopathy.

- AT-TPO Antibodies to thyroid peroxidase: 166.4 IU / ml (Aug 2017) 170 (Jan 2018)

-Degenerative-dystrophic changes in the cervical spine. Herniated disks in my C4/C5 and upper Cervical Misalignment.

- Venous discirculation along the vertebral venous plexuses V2 on the right (C5)

- Not sure if it is worth mentioning that I have had been diagnosed with gastritis in past, although i rarely have a flare up now. ( just read somewhere there may be a link with leaky gut and some of my symptoms? but no idea what needs to be done to test it out)

Last 3 specialists, I have seen: Breast clinic and two chiropractors have both expressed their concern and have said I most likely have adrenal insufficiency and autoimmune disorder now and that it is very important I see someone competent fast! I was given a number of Dr. Barry Peatfield, having read some great reviews I felt hopeful! However, I have been unable to reach him, as I was told he is not seeing new patients due to being hospitalised.. I now am back to square one!

If anyone has made it this far down my post, THANK YOU! I am sorry it's turned out to be so long, was not intending on writing so much, but felt it was the best way for others to get the clear picture and if someone can then please do share your stories and any advice is welcome! I just want to know what is wrong with me! I am 28 and I feel like I'm 80, I am starting to question my sanity! Anyone feel the same?

[greygoose]

Have you had thyroid tests, apart from TPO antibodies? If so, post the results. Do you have a range for the TPO antibodies? We always, always need the ranges.

If that endo is in the UK, he is breaking the law. The law says you are entitled your your lab results - they are YOURS. And, you should always ask for a print-out of results every time you have a blood tests. Otherwise, anything we say would be just guessing.

So, here's a guess: your antibodies are over range, and you have Hashi's, which has partially destroyed your thyroid making you hypo. Therefore, your adrenals are struggling, and you're in the early stages of adrenal fatigue. Also, you probably have low nutrients - especially vit B12. You should ask for vit D, vit B12, folate and ferritin to be tested, if they haven't already been done.

[Glaciera in reply to greygoose]

Thank you for your response!

~ My Cortisol in Aug 2016 via 9am NHS test was: 651nmol/L

~ I since then had repeat test privately but both lab and private Endo at the start of 2017 never send me the results, despite asking them several times! I did not know they were breaking the law! And now feel it is too late as they probably won't keep the results this long

~ Only Vit D and Magnesium was confirmed low via hair strand test and blood test in Aug 2017, but I am taking supplements for that, but so change in my symptoms.

~ All NHS blood tests I have had showed "normal" in the past and were non-fasting.

My recent test showed: Serum TSH: 2.02 mU/L, Free T4: 14.0 pmol/L, Testosterone 0.6 nmol/L (also considered normal)

~ TPO Antibodies are currently 170IU/ML

[greygoose in reply to Glaciera]

As I said, we always need the ranges. Results without ranges are meaningless. Except for TSH, and yours shows that your thyroid is struggling.

'Normal' is meaningless. It just means 'in-range'. But, the important thing is, where in the range the result falls. Which is why we need the exact numbers.

I don't think it's too late to shoot of letters to endos telling them that they have been breaking the law by denying you access to your results, and you intend to take things further... See how they react to that! You can quote the 1998 Data Protection Act. The law has been in force since 1998, and they should have know about it - ignorance of the law is no excuse.

So, I'm afraid, all that gives us no information to go on. So, either you get geared up to chasing up your results (2017 was only a few months ago!) or, you get private testing for :

TSH

FT4

FT3

vit D

vit B12

folate

ferritin

Do you have the range for the last TPO antibodies? No point in doing it again if it's positive.

Anyway, when you get all that information, then we'll be able to get somewhere!

Details of private testing can be found here :

thyroiduk.org/tuk/testing/p...

[Glaciera in reply to greygoose]

Oh thank you! I will try to contact them on Monday!

I do have the UK ranges, just didn't mention them but yeah the TSH and FT4 falls into the ranges so that's why GP considered them "normal".

However It may be worth noting that I am Eastern European and when I had tests done Privately in my home country, they went on by different ranges, so It makes me really confused as to what to go on by! I was told that in every country the "norm" differs, I am not sure if it is true though, but if so, then perhaps for me the "norm" is not so normal at all?

[humanbean in reply to Glaciera]

You always have to use the reference ranges supplied by the lab that did a test.

If you want to compare two test results with different reference ranges the way to do the comparison is to work out what percentage of the way through the reference range a result is.

So, for example, suppose you get a ferritin test done by two different labs, the second test being done 3 months after the first :

Test 1 : 80 ug/L ref range 15 - 150

Test 2 : 120 ug/L ref range 30 - 400

The first test result is approx 48% of the way through the range.

The second test result is approx 24% of the way through the range.

The result of test 2 shows that the ferritin level has dropped quite substantially, despite the actual result appearing to be higher than the result for test 1.

[Glaciera in reply to humanbean]

Oooh Thank you! That makes perfect sense! I will compare my ranges next week when I have some repeat tests done! I just found it weird how in UK I was told my results are normal and in my home county I was told they are not :S

I guess they may have used a more precise range or took into consideration other factors, as it was private. I need to try get hold of my UK private test results next week, before I have new tests to compare.

[humanbean in reply to Glaciera]

Bear in mind that reference ranges are devised according to the local population around the area where a lab does its work.

Suppose you have low in range ferritin results.

If one area has a population which eats well and has good ferritin results, then your low result will appear to be possibly very low when compared to other people in the area.

If you then get a ferritin test done in an area where there are lots of people with poor diets then the reference range for ferritin may be generally lower. Your poor results will then look better when compared to people who are generally not so healthy as in the first area.

So, test 1 (in the healthy area) could show your ferritin as being 10% of the way through the range.

Test 2 (in the less healthy area) could show your ferritin as being 30% of the way through the range.

Other things that may change the interpretation of results is :

1) Time of day blood is taken.

2) How long since last food intake i.e. whether test is done fasting or not.

3) How long since last meds or supplements were taken, if they are relevant to the test being done. E.g. if you take iron supplements and do one test having not taken an iron pill for a week, and a second test having not taken an iron pill for 24 hours, that will impact the result too.

It is important to try and minimise the changes in circumstances between identical tests, and also be aware of the fact that different populations may have different "normal" results.

[shaws in reply to Glaciera]

To get the best results possible from a blood test for your thyroid hormones is:-

The earliest possible appointment, fasting (you can drink water).

Request (we have private labs) TSH, T4, T3, Free T4, Free T3 and thyroid antibodies. In the UK, they usually only request TSH and T4 to be tested.

If you were given levothyroxine, you'd allow a 24 hour gap between last dose and test and take it afterwards.

This helps keep our TSH at its highest as it drops throughout the day and may mean the difference of being diagnosed or not.

thyroiduk.org.uk/tuk/thyroi...

thyroiduk.org.uk/tuk/about_...

Always get a print-out of your results, with the ranges. Ranges differ in labs and makes it easier to comment.

Your doctor should also test B12, Vit D, iron, ferritin and folate.

If your GP wont do all of the thyroid tests required, we have two private labs who do home pin-prick tests. If you decide to do so make sure you are well hydrated a couple of days before drawing blood (pin-prick tests) and arms are warm.

thyroiduk.org.uk/tuk/testin...

[Clutter]

Glaciera,

I think it would be worth ordering a new thyroid function test and FT3 if early 2017 was when you were last tested. You can order private thyroid tests from Blue Horizon or Medichecks via thyroiduk.org.uk/tuk/testin... Medichecks are offering 15% discount throughout March using discount code MED15. They also offer #ThyroidThursday discounts which may be 20%.

[SlowDragon Administrator]

Would suspect low B12 (acne, night sweats )

Common side affect of Hashimoto's (High TPO antibodies)

For full Thyroid evaluation you need TSH, FT4, TT4, FT3 plus TPO and TG thyroid antibodies. Plus vitamin D, folate, ferritin and B12.

Essential to test thyroid antibodies, FT3 and FT4 plus vitamins

Private tests are available. NHS often refuses to test FT3 or both TG and TPO antibodies

thyroiduk.org.uk/tuk/testin...

Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have money off offers.

All thyroid tests should ideally be done as early as possible in morning and fasting. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, GP will be unaware)

If antibodies are high this is Hashimoto's, (also known by medics here in UK more commonly as autoimmune thyroid disease).

About 90% of all hypothyroidism in Uk is due to Hashimoto's

Gluten and dairy intolerance are both very common

Read as much as possible about Hashimoto's

thyroidpharmacist.com/artic...

thyroidpharmacist.com/artic...

amymyersmd.com/2017/02/3-im...

chriskresser.com/the-gluten...

scdlifestyle.com/2014/08/th...

drknews.com/changing-your-d...

thyroidpharmacist.com/artic...

If you put your full results once you get them on a new post members can advise

[Hidden]

I didnt manage to read all of the post (too tired) so apologies..Im wondering if you could have ME/CFS and or Fibromyalgia. just a thought.

[Angel_of_the_North in reply to Hidden]

If any of those diseases actually exist in their own right and are not just un(der)treated hypo or adrenal issues.

[humanbean in reply to Angel_of_the_North]

Or low nutrients.

[Mamapea1]

Hi Glaciera ~ try not to worry too much, looks like you've found the right place for answers ~ you will get lots of helpful advice on here, from friendly members who will help you get well. Most of us have been there, some still are, so we do understand 💕x

[Glaciera in reply to Mamapea1]

Thank you! I hope I will find answers and help. It is just very difficult for me to hold it together lately, I cry when I see young mothers with babies, as we want to have kids and its not possible because I am unwell and financially dependent, my cycle has even almost stopped which worries me every day.. I cry when I see sports commercials as It was my biggest passion just before I became ill, and now I don't have enough energy to even go for a 2-minute jog as I end up being sick and faint.

And emotionally, It's very hard not to worry, as my body is fighting for two years and it is showing more symptoms which despite all my efforts to eat all the right supplements, staying gluten and dairy free and eating organic healthy vegetables and fruits, shows no positive results I never met anyone who had any of my symptoms and when I voice them no one understands Thank you for your reply though, it's so comforting to know someone does! x

[Mamapea1 in reply to Glaciera]

Glaciera🌹~ please don't lose heart. You obviously have some sort of autoimmune and hormonal problems, but you haven't yet begun to unravel and treat them. When you have had all the relevant tests, and posted them on here, and found out what steps you need to take, you will start to feel more positive. It's very hard to just 'be ill' and not really know why.

Struggling thyroids unbalance your adrenals and make you tearful and anxious, on top of all the horrible physical symptoms you are having to deal with, but try and think positively, ~ I know it's easier said than done ~ but stress in itself brings it's own problems, and impacts on your health further.

Period issues are common with thyroid/autoimmune conditions, and often they present as heavy ~ but they can also disappear temporarily with stress or over exercise. If you have low T3, it would make you suffer exhaustion, and tire easily. Perhaps only very light exercise and yoga/meditation would be easier on the body than running, etc., until you are optimally medicated/treated.

I also suffered from mastitis for years, and loads of other symptoms, but made no connection, being very naive until I found this forum and joined the dots! I had my last daughter after I had been paralysed with ME/CFS for 3 years, and I was 40! I'm only ill again now as a result of severe long term stress, poor treatment, inadequate meds, and possibly a genetic fault, which I'm about to test for.

So there is every chance you and your partner will be able to have the children you desire, and your health and vitality will be restored.😊 If I had found this forum years ago, I would not be ill now, and I know that to be a fact. Because you have found it, you WILL get well ~ you just need the relevant tests, and follow all instructions re vitamins and minerals from the knowledgable ones.

If there is anything on your mind, however trivial it may seem, write a post and members will respond. Also feel free to PM me if you like. I realise you've already been ill for a long time, but you might not have to wait too much longer. Take care. (((Hugs))) 🌻🌻🌻xx

[Glaciera in reply to Mamapea1]

Thank you 🌸 your words give me hope and makes me feel a little more positive, hopefully soon I’ll know the cause and how to treat it 😊 X

[SA375]

I wish I could give you some advice especially as you are only 28 however I feel in the same position as you. I am 46 and am waiting for my first endocrinology appt. I have low cortisol readings which is adrenal fatigue. I have spent all my money on alternative remedies and lost my job because I cant function.

I would suggest you look up Dr Bergman on you tube. He is very insightful with regards to you taking antibiotics and it can cause leaky gut.

As far as your back is concerned I want to ask. Have you seen a chiropractor?

I am not a dr but there is valuable info on this site that may help you get closer to a solution. One word of warning if you feel your adrenals are the problem I have read that you need to treat them before thyroid as treating thyroid first could make you worse. If you do have a leaky gut you may not be absorbing necessary vitamins to heal adrenals. I would then suggest have B12 levels checked.

I hope this helps in some way and to let you know you arent alone. Good luck on your quest for health.

[Glaciera in reply to SA375]

Oh I am so sorry you are going through the same health battle! I know its so hard to find the right doctors and people who want to help! Everyone I have seen so far has wanted to treat the symptoms not the root cause and the method of treatment they give will make alot of my other symptoms worse! They don't even care about that!

How funny I also watched a bunch of Dr. Bergman videos a short while ago. I saw a CBP but decided to put my treatment on hold as I was concerned about Vertebral Stroke risk, so I am trying the Nucca Approach first at the moment, then will try the other, however both chiropractors said they were REALLY concerned about my health and said I have an issue which needs urgent attention and its to do with hormones or adrenals and that Chiropractor won't solve those issues Unfortunately, they may be right as with Nucca I haven't seen any positive results yet. Thank you so much for the word of warning also, yes I dont think it is my Thyroid which is the problem at all, I think it is my Adrenals or Gut or pituitary gland.. just have to find a specialist to test those thoroughly in the UK.. which is easier said than done!

I am going to check my B12 next week x