Advice needed please.

[PurpleGiraffe]

Hi everyone,

At the age of 18 I had a virus (described to me as ‘glandular fever-like’). After having this virus I never felt 100% well again. 2 years later I was diagnosed with M.E./CFS. I was too unwell to work or study until I was 30. From 2011 I thankfully was feeling able to work on a part-time basis again. In 2014 due to my financial situation I needed to work full-time. It was really tough, I couldn’t really have a social life but I was managing. At the end of 2016 I was feeling really unwell again and I was also suffering from depression and anxiety. I ended up losing my job because I was off sick for too long. 2 years later and I still don’t feel any better physically or mentally. I have visited a GP several times and I have been told i’m having a M.E./CFS relapse because all my blood tests are within normal ranges and have been put on the highest strength of anxiety/depression medication (60mg Paroxetine).

I have been doing some research into my symptoms (listed below) in an attempt to get better or at least improve my health (since GP’s do not seem interested in helping me). Over and over again my research keeps leading me back to hypothyroidism. I have discussed this with a GP and a nurse practitioner and was met with a brick wall both times. They refused to give me a blood test because all my previous tests had been within the normal range. I then arranged to have free T4, free T3 and TSH blood tests privately. I took the results back to the GP who seemed less than impressed, glances at them and said again they are within the normal range.

I’m fed up because I can’t seem to find a medical professional who is willing to properly discuss my results with me and put my mind at rest.

If anyone here could take a look at my symptoms and results and give me their opinion and/or advice it would be greatly appreciated.

Symptoms (which worsen in Autumn/Winter):

Tiredness (not relieved by sleep)

Cold hands and feet

Extremely cold most of the time

Muscle cramps and weakness

Stiff joints

Dizziness

Balance problems

Palpitations

Migraines

Headaches

Dry, flaky nails

Dry, flaky skin patches on scalp, eyebrows and ears.

Acne on jaw and neck

Bruising easily

Alcohol intolerance

Constipation (even though I eat plenty of fibre and drink plenty)

IBS symptoms - a lot of bloating

Back pain

Lack of concentration

Brain fog

Easily upset

Anxious

Depressed

Lack of confidence

Mood swings

Test results:

Free T4: 12.8

TSH: 1.83

Free T3: 4.3

Apologies for such a long post and thank you so much if you have taken the time to read through it all.

[SeasideSusie Remembering]

PurpleGiraffe

It would help if you could add the reference ranges for your results so that we can interpret them properly. Ranges vary from lab to lab.

Have you had thyroid antibodies tested?

What about Vit D, B12, ferritin and folate?

If not then it would be a good idea to have a full thyroid panel with vitamins and minerals such as Medichecks Thyroid Check UltraVit

medichecks.com/thyroid-func...

If it goes back to normal price there is a discount code that can be used until the end of October for 20% off - MED99

[humanbean in reply to SeasideSusie]

Has the money off with MED99 been extended throughout October now? Yippee!

[SeasideSusie Remembering in reply to humanbean]

Yes, there was a post by Lyn earlier today, good time to stock up

[PurpleGiraffe in reply to SeasideSusie]

Thank you SeasideSusie.

I’m not aware of having thyroid antibodies tested. I’m not sure what I have been tested for to be honest. My GP ordered a whole range of blood tests a few months ago as part of a referal to an M.E. clinic. Perhaps I should request a copy of my results as it could be useful. I’ve not been told what my results were but I do know I am now on the waiting list for the clinic.

The ranges are:

Free T4: 11.0-26.0 (my result: 12.8)

TSH: 0.35-4.50 (my result: 1.83)

Free T3: 3.9-6.8 (my result: 4.3)

I can see i’m within the normal ranges but I on the low side, especially Free T4. I’m not sure if this indicates anything when taking my symptoms into consideration?

Thank you for the link to the blood tests. I will certainly look into getting them done for my own peace of mind.

[SeasideSusie Remembering in reply to PurpleGiraffe]

PurpleGiraffe

It's always useful to ask for a print out of your results for all tests done. I keep a copy of everything and put results on a spreadsheet so I can compare results.

Your TSH, F4 and FT3 are euthyroid (normal) but that's just one result, and not the complete picture. I would do the full test (UltraVit) and that will give a much clearer picture. Post the results (with ranges) when you have them and we can see if there are any clues there. I'm betting we might find something

[PurpleGiraffe in reply to SeasideSusie]

Ah thank you!

I’ll get a copy of my past test results and order the test you have recommended and get back to you.

I feel like i’ve been in limbo for the last two years. Doctors seem satisfied with my M.E. diagnosis (from 16 years ago) which is fine but it seems they don’t want to look into anything else or helping me ease symptoms. Every symptom is met with ‘it’s M.E., there’s nothing I can do’. It’s very frustrating!

[Nikkilps]

Hi, So sorry you are going through this, speaking from both clinical and professional experience can I suggest you get thee back to a private Dr and have the following tests which your Gp very likely hasn’t done as they aren’t included in routine blood screens: Full hormone panel - this needs E2 Oetrodial, progesterone, LH luteinizing hormone FSH follicle stimulating hormone and testosterone, then your adrenal panel - Cortisol levels and DHEA

And also your magnesium levels -if you check out symptoms of cortisol dysfunction and low magnesium you will understand why they could be very helpful to be checked and sex hormone imbalance can cause significant physical and psychological presentations. To my eye your thyroid seems to be functioning reasonably well hence my suggestion to look in other directions - also it’s more than possible you are dealing with two issues at once which haven’t been identified. Worsening mood and fatigue in autumn and winter also points to SAD seasonal affective disorder if you are happy on your current therapy then you may like to invest in a natural daylight lamp normally used in the mornings for 30 mins and evening it has proven results!

Anyway, hope this helps and hang in there!!

Nikki :-))

[PurpleGiraffe in reply to Nikkilps]

Hi Nikkilps,

Thank you so much for your reply. I find your response very interesting since I have suspected a hormone imbalance too. In 2016 when I was first off work sick, my doctor took me off a combined oral contraceptive pill (Brevinor) because I was experiencing crippling migraines and headaches during the 7 day breaks. While this did help reduce the frequency and intensity of the migraines and headaches I've had some disturbing symptoms. My periods gradually became more and more irregular (often up to 2-3 weeks late) and with this I had terrible mood swings. From around the time of ovulation up until I eventually got my period I not only felt physically unwell to the point where I spent the majority of time asleep, I also became suicidal, which was very alarming. As soon as my period would start I felt physically and mentally better. As well as this, I have developed acne along my jaw line and neck which is getting progressively worse. I have never suffered from acne before, even when I was a teen I had very few breakouts. I visited a GP around 4 months ago with these issues and was given a progesterone only pill (Cerelle). They did not seem interested in investigating further and said I was probably sensitive to oestrogen? I was so desperate to stop feeling suicidal I didn't argue the point and just took the prescription. Taking Cerelle has stopped my periods, mood swings and thankfully I feel a lot less suicidal! However, my acne is still getting worse and I feel that the pill is just masking an underlying problem.

Since having the M.E. diagnosis 16 years ago and with the recent anxiety and depression, doctors do not seem to want to investigate my symptoms further. I know my own body and I know I feel different from 16 years ago when I was diagnosed with M.E. I'm not denying that I probably still have mild M.E. as it's not something you ever 100% recover from, but I think there is something else going on that has caused me to become so sick since 2016. Before that I was able to hold down a stressful, full-time job (funnily enough, with the NHS).

Apologies for the long response, it's a relief to talk to people willing to listen to my symptoms, try and join the dots and look at the bigger picture.

I will be making an appointment with a private GP asap. Fingers-crossed they are willing to listen and investigate further.

P.S. I have had a quick look at cortisol, magnesium and adrenal fatigue. That definitely sounds like something else to look in to. A lot of the symptoms fit and interestingly I get uncontrollable shakes when I need to eat and feel like I am going to pass out - hypoglycaemia?

[ShootingStars]

Hi PurpleGiraffe. Your results are almost identical to mine when I was diagnosed with Hashimoto’s, except you didn’t test your two antibodies yet, TPO and TG. Your FT3 is at the very bottom of range and your FT3 is also much too low. This causes the symptoms you’ve been experiencing.

It also looks like you could have central hypothyroidism. Notice that your TSH is at almost an ideal level for someone who is not on medication, yet your thyroid hormones are way too low. In comparison, a person who does not have thyroid disease who has ideal TSH levels would have much higher FT3 and FT4 and not have hypo symptoms.

Central hypothyroidism is when your pituitary gland or hypothalamus has a problem and causes your body to not be able to release enough TSH to simulate the production of thyroid hormones. When a person with central hypothyroidism starts taking thyroid medication and raises their FT3 and FT4 to optimal range where they have no symptoms, their TSH will become very suppressed compared to someone with thyroid disease who does not have central hypothyroidism. Why? Because their TSH started out low and their thyroid hormones started out too low. As thyroid hormones increase, TSH always decreases.

I suspect that I have central hypothyroidism too. When my FT3 and FT4 are at the levels where I have no symptoms, my TSH is under 0.2. My latest is 0.03. It has been lower. Be prepared that a doctor who is not educated about central hypothyroidism will freak out and try to decrease your meds. Do not let them! They want to lower meds based on low TSH (a hormone from pituitary that by itself causes no hypo symptoms) and ignore that FT3 and FT4 (which cause symptoms if too low or too high) are optimal and there are no hypo symptoms.

[PurpleGiraffe in reply to ShootingStars]

Hi ShootingStars,

Thank you for your reply. I think having the antibodies tested is something I need to do to rule out or diagnose a thyroid issue. I'll be making an appointment with a private GP asap and hopefully they will test me. If not, I will order the tests myself. Hopefully I will get to the bottom of what is causing my symptoms soon. I want my life back!

[ShootingStars in reply to PurpleGiraffe]

Hi PurpleGiraffe. You're welcome. Your levels already show a thyroid problem, most likely central hypothyroidism. It's your low thyroid hormones (T4 and T3, measured in free available levels as FT4 and FT3) plus your symptoms that are the clue and it's your practically ideal TSH but low thyroid hormones and symptoms are consistent with central hypothyroidism. Testing for antibodies won't confirm your already confirmed thyroid issue, it will only tell you if you have Hashimoto's or not. It's possible to have central hypothyroidism and not have Hashimoto's, or you can have both, like I seem to. I do not have confirmed central hypothyroidism, but so far there is no other explanation for my ideal TSH but very low thyroid hormones and resulting symptoms before I started medication.

Have you ever had any whiplash, head bumps, concussions, or do you get headaches?

Finding a competent doctor who will treat your low thyroid hormones that are causing your symptoms despite your practically ideal TSH can be a problem. Some doctors think that they are supposed to only treat patients based on TSH levels and ignore thyroid hormone levels. This is completely the wrong idea and is why so many people go untreated and are left feeling unnecessarily like garbage. Too low or too high thyroid hormones is that cause symptoms, not too low or too high TSH. TSH just tells you if the pituitary gland is telling the thyroid to make a lot or a little thyroid hormone. Central hypothyroidism throws off the instructions from the pituitary gland because it thinks it's telling the thyroid to make enough hormones, but in reality it is not.

Most people feel their best with both their FT3 and FT4 over 50% of range, but below 75% of range. Below 50%, and people have symptoms. Above 75%, and many people have symptoms. Your exact ideal or optimal numbers can change over time. This is especially true if you have Hashimoto's and your antibodies increase or decrease because high or low positive antibodies can interfere with hormone production. My ideal FT3 and FT4 where I have no symptoms has been at exactly 62.5% of both ranges. If my both are below this number, I have hypo symptoms. If my FT3 gets over 75%, I tend to have hyper symptoms.

This disease really keeps us on our toes! It really doesn't take that much work to not have symptoms, you just have to keep testing every 6 weeks and adjusting meds every 6 weeks until you have no symptoms. I tend to test every 6 weeks even though I usually have no symptoms. This is how I've caught decreasing FT3 and FT4 before they got out of hand and before I had too many symptoms. Then I kept increasing my meds until I was back where I should be.

Best of luck in quickly finding a doctor who will properly interpret your above labs, your symptoms, knows how to medicate accordingly.

[PurpleGiraffe in reply to ShootingStars]

Hi ShootingStars,

I too thought my T4 and T3 levels are lower than they should be. Even though they are within the 'normal' range, I thought they should be higher with my TSH result being as it is. As you say, along with the symptoms it indicates a problem. When I showed an NHS GP my results they were very dismissive. I lack confidence and suffer with anxiety which makes it a challenge for me to stick up for myself. I've had several GP appointments in the past where I have left the surgery crying because I feel like I haven't been listened to and told to put up with my symptoms because everything is normal and there is nothing they can do. I have barely had a life these past two years because of crippling symptoms!

I've never had whiplash. I had one head trauma as a child, where I was accidentally knocked unconscious in the school playground. I went to A&E and had an x-ray, but everything was fine and I didn't have concussion. As for headaches - I suffer from a lot of headaches. Often paracetamol and ibuprofen barely make a difference. I also suffer with sinus pressure and pain.

After reading your reply I did some reading about the pituitary gland which I found very interesting. I didn't realise the pituitary gland controls other hormone glands in the body. Over the last few months my reproductive system has gone totally crazy. I'm wondering if perhaps I have a problem with my pituitary gland that is then causing all kinds of hormonal imbalances in my body?

I have an appointment with a private GP on Wednesday morning. Fingers-crossed they are helpful! I've never seen a private GP before and I don't know what to expect. Is it reasonable to request tests I'd like? (after all I am paying!) I ask because this does NOT go down well with GP's at my NHS practice.

[Hidden]

Hi PurpleGiraffe, I have no advice on thyroid problems, (as mine is crazy still undiagnosed ). BUT reading You symptoms including - achy limbs, headaches, brain fog, constipation, bloating.... may be relived at least in part by going on a gluten free diet - I get the times I listed and more if I have gluten. This of course is something you can start now, while you purposely all advice about blood tests etc given above. X

[PurpleGiraffe in reply to Hidden]

Hi DeniseOlive,

Thank you for your reply. I have been gluten free for several years now. I found for a long time it really helped with symptoms. Sadly, over the past couple of years my symptoms have become a lot worse even though I am still gluten free. I'm currently trying a dairy free diet as well. It's only been a week, so it's too early to tell if it's helping. x

[Senorita_Squiffy]

Hi PurpleGiraffe,

Your story sounds incredibly similar to mine (scarily so) and with mostly the same symptoms.

I'd be very careful about concentration too much on the thyroid. My levels were a bit low a couple of years ago and a doctor friend put me on a private prescription for naturethroid. It made a slight difference, but nothing remarkable. It was only after finding a functional medicine practitioner and being diagnosed with SIBO (one of the main causes of IBS) that things finally started to make sense and, with treatment, I'm feeling miles better. She told me that the meds were unnecessary and I didn't feel any worse after coming off them. The gut has a massive effect on the brain (lots of serotonin in the digestive tract) , skin, hormones, etc. and I'd look into getting tested for bacterial or parasitic issues. With IBS or IBS symptoms, certain types of fibre and sugars/ carbohydrates can actually make things much worse, so something like the low FODMAP and/or SCD may be helpful. Dr Michael Ruscio's website is fantastic, if you'd like more information. Please don't let them fob you off with an M.E/CFS diagnosis!

[PurpleGiraffe in reply to Senorita_Squiffy]

Hi Senorita_Squiffy,

Thanks for your reply. Funnily enough, gut health is something I have just started looking in to. My Dad and Sister-in-law both recommended I read The Clever Guts Diet by Dr Michael Mosley. It's opened my eyes up to how much gut health (or lack of!) can affect a person physically and mentally. It's definitely something I'm going to do more research on.

[ShootingStars in reply to PurpleGiraffe]

Blood results tell the tale about the status of your thyroid. Gut issues are often related to thyroid issues because low thyroid causes slow metabolism. This means slow digestion, too. If the gut is too slow to empty properly, bacteria can become overgrown or imbalanced because waste material is held in place too long. Then nutrients absorption can also become a big problem. Throw in Hashimoto's and that adds another element to the gut issues.

[Senorita_Squiffy in reply to PurpleGiraffe]

Good idea My functional medicine practitioner actually co-wrote that book!

I agree with ShootingStars, the thyroid antibody tests would be good to have, along with vitamin D and ferritin. However, I'd definitely look into getting any digestive issues diagnosed and treated first. The gut can have a massive impact on the endocrine system (yes, even in the brain) and my thyroid hormone levels improved a lot even after I was taken off meds.

[PurpleGiraffe in reply to Senorita_Squiffy]

Oh wow! It's an excellent book, please pass on my praise!

I have an appointment with a private GP on Wednesday morning. I will be requesting all of the tests suggested in the replies ( hopefully this doesn't put their nose out of joint!). If I have no luck with this GP, I do have details of a functional medicine practitioner that is local to me that will be my next stop. In the meantime I'm trying to follow advice from The Clever Guts Diet to improve my gut health.

[rosetrees]

Have you considered that you may have Lyme Disease and/or co-infections?

In my personal opinion ME is not a diagnosis - anymore than "a headache" is a diagnosis. It is a statement of fact. You have a set of symptoms that always have an underlying cause or causes. Always. Lyme & Co is the most common cause, although far from the only one.

If you do have underlying infections you will possibly have thyroid issues, adrenal issues and sex hormone issues as the infections damage the endocrine system.

[PurpleGiraffe in reply to rosetrees]

Hi rosetrees,

Lyme disease is something that I am now considering and would like to rule in or out. I've never been tested and I think this definitely needs to be done. The trouble is, I'm not the most assertive of people and the GP practice I have been with for the last 18 years or so won't budge from the M.E. 'diagnosis'. Unfortunately I can't shake that label which is why I am going to a private GP on Wednesday morning. I accepted the diagnosis when I was younger, but by 2011 I had recovered enough to lead a nearly 'normal' life. At the end of 2016 I became very unwell again and lost my job (and have been unable to work since). I've been told it's an M.E. relapse but I feel like i'm being fobbed off. There is an overlap of symptoms but I have so many new symptoms that I believe something else is going on and it's not a relapse.

[rosetrees in reply to PurpleGiraffe]

I'm going to PM you.

[MaryF]

Hi, regarding your migraines, are they a feature in your family? Do any family members past and present have autoimmune disease including thyroid? Do you get any strange sort of blotchy rashes? Have any relatives had multiple miscarriages, or strokes and heart attacks at an early age? If any of this rings a bell come back to me. MaryF

[PurpleGiraffe in reply to MaryF]

Hi MaryF,

As far as i'm aware migraines do not feature in my family, certainly not my immediate family. My Nana had thyroid problems, although I'm not totally sure what these were and sadly she is not with us any longer so I can't ask her. I do know she was admitted to hospital on a couple of occasions with high calcium levels and it was due to thyroid problems. I'm guessing this could have been hyperparathyroidism and her medication dose was not monitored correctly?

I used to get strange blotchy rashes on my chest but I can't say I have noticed them for several years now.

I'm not aware of miscarriages in my family. My Aunt had a mini stroke in her 50's and her mother (my Nana with the thyroid problems) had heart problems and her father had angina.

[MaryF in reply to PurpleGiraffe]

Ok, the reason I asked is that some have Hughes Syndrome/APS, which often goes with a Thyroid problem and also Sjogrens Disease, a blotchy rash that comes and goes called Livedo Reticularis is not uncommon. For myself, with this disease, and 5 more, I am gluten free, with my B12, D and Iron maintained well and thyroid medication, A Mediterranean diet with selenium from brazil nuts added in, regular Epsom Salts baths etc for the Magnesium, also my daughter has Hughes Syndrome, plus Lupus also PCOS, which functional medicine doctors think is a low progesterone disorder, some use natural bio identical hormones for this, also a low GI diet to stop the insulin resistance, You may have to find somebody to help you with more medical detail and think out of the box. MaryF

[Hidden]

Have you read up on the Epstein-Barr Virus, some people suffer for years after with symptoms like you list.

Maybe worth asking your doctor for a blood test to rule it in or out.

[PurpleGiraffe in reply to Hidden]

Hi Lavender03,

Thank you, I will read up on it. I know that it is the best known cause of glandular fever. I was told I had a 'glandular fever-like' virus when I was 18. Perhaps it was Epstein-Barr? I was given my blood test results over the phone by a receptionist and was given no advice or anything. Being young at the time I didn't question it. In hindsight I wish I had. Sadly my doctors notes from this time have gone missing, so I will never know.